Special issue: A Day with HIV. Select images from PA's awareness and anti-stigma photo campaign. Also: a look at gay men, HIV, and stigma; an update on the ICAAC conference; and a review of the documentary, "How to Survive a Plague."
One issue, four covers For the first time in its 23-year history, Positively Aware has printed different versions of the cover—four in all—to commemorate A Day with HIV. ICAAC UPDATE HOW TO A PLAGUE NOVEMBER+DECEMBER 2012 NOVEMBER+DECEMBER 2012 SURVIVE ICAAC UPDATE HOW TO SURVIVE A PLAGUE 11:00 AM: LONDON. Garry Brough: “I’m the admin/moderator for the UK’s largest network of people with HIV—myHIV.org.uk. Having lived with HIV for over 20 years, I am proud to wear the t-shirt. Every day is a day with HIV, in both my work and personal life. Mostly, they are good days with HIV these days, thankfully.” A DAY WITH HIV A DAY WITH HIV ICAAC UPDATE HOW TO A PLAGUE 11:00 AM: VIRGINIA. Melissa: “Pop my morning pill and head up to the mountains to pick my angel’s first apples. Just another day with HIV.” ICAAC UPDATE HOW TO A PLAGUE NOVEMBER+DECEMBER 2012 SURVIVE SURVIVE NOVEMBER+DECEMBER 2012 8:15 AM: ANKENY, IOWA. Brian Walker: “David was born three and a half months premature, weighing two pounds with an HIV viral load of 525,000. His picture says it all. He is my HERO. He now has a viral load of 54, and the spirit of an angel.” A DAY WITH HIV 2:00 PM: NEW YORK CITY. The staff of MISTER. Says CEO Carl Sandler: “We must ask ourselves how we are perpetuating ignorance and shame in our community, regardless of our HIV status, through the actions we take and the decisions we make around dating and sex.” A DAY WITH HIV NOVEMBER+DECEMBER 2012 ICAAC UPDATE HOW TO SURVIVE A PLAGUE A DAY WITH HIV admin/moderator for the UK’s largest network of people with HIV—myHIV.org.uk. Having lived with HIV for over 20 years, I am proud to wear the t-shirt. Every day is a day with HIV, in both my work and personal life. Mostly, they are good days with HIV these days, thankfully.” 11:00 AM: LONDON. Garry Brough: “I’m the ICAAC UPDATE HOW TO A PLAGUE NOVEMBER+DECEMBER 2012 SURVIVE A DAY WITH HIV 11:00 AM: VIRGINIA. Melissa: “Pop my morning pill and head up to the mountains to pick my angel’s first apples. Just another day with HIV.” ICAAC UPDATE HOW TO A PLAGUE NOVEMBER+DECEMBER 2012 SURVIVE 8:15 AM: ANKENY, IOWA. Brian Walker: “David was born three and a half months premature, weighing two pounds with an HIV viral load of 525,000. His picture says it all. He is my HERO. He now has a viral load of 54, and the spirit of an angel.” A DAY WITH HIV ICAAC UPDATE HOW TO A PLAGUE NOVEMBER+DECEMBER 2012 SURVIVE 2:00 PM: NEW YORK CITY. The staff of MISTER. Says CEO Carl Sandler: “We must ask ourselves how we are perpetuating ignorance and shame in our community, regardless of our HIV status, through the actions we take and the decisions we make around dating and sex.” A DAY WITH HIV ABOUT PREZISTA ® PREZISTA® (darunavir) is a prescription medicine. It is one treatment option in the class of HIV (human immunodeﬁciency virus) medicines known as protease inhibitors. PREZISTA® is always taken with and at the same time as ritonavir (Norvir ®), in combination with other HIV medicines for the treatment of HIV infection in adults. PREZISTA® should also be taken with food. • The use of other medicines active against HIV in combination with PREZISTA®/ritonavir (Norvir ®) may increase your ability to ﬁght HIV. Your healthcare professional will work with you to ﬁnd the right combination of HIV medicines • It is important that you remain under the care of your healthcare professional during treatment with PREZISTA® PREZISTA® does not cure HIV infection or AIDS and you may continue to experience illnesses associated with HIV-1 infection, including opportunistic infections. You should remain under the ® care of a doctor when using PREZISTA. Please read Important Safety Information below, and talk to your healthcare professional to learn if PREZISTA® is right for you. Rifamate,® Rimactane®), sildenaﬁl (Revatio®) when used to treat pulmonary arterial hypertension, indinavir (Crixivan®), lopinavir/ ritonavir (Kaletra®), saquinavir (Invirase®), boceprevir (Victrelis™), or telaprevir (Incivek™) ® tell your healthcare professional if you are • Before taking PREZISTA, taking sildenaﬁl (Viagra,® Revatio®), vardenaﬁl (Levitra,® Staxyn®), tadalaﬁl (Cialis,® Adcirca®), atorvastatin (Lipitor ®), rosuvastatin (Crestor ®), pravastatin (Pravachol®), or colchicine (Colcrys,® Col-Probenecid®). Tell your healthcare professional if you are taking estrogen-based contraceptives (birth control). PREZISTA® might reduce the effectiveness of estrogen-based contraceptives. You must take additional precautions for birth control, such as condoms This is not a complete list of medicines. Be sure to tell your healthcare professional about all the medicines you are taking or plan to take, including prescription and nonprescription medicines, vitamins, and herbal supplements. What should I tell my doctor before I take PREZISTA®? ® • Before taking PREZISTA, tell your healthcare professional if you have any medical conditions, including liver problems (including hepatitis B or C), allergy to sulfa medicines, diabetes, or hemophilia IMPORTANT SAFETY INFORMATION What is the most important information I should know about PREZISTA®? • PREZISTA® can interact with other medicines and cause serious side effects. See “Who should not take PREZISTA®?” • PREZISTA® may cause liver problems. Some people taking ® PREZISTA, together with Norvir ® (ritonavir), have developed liver problems which may be life-threatening. Your healthcare professional should do blood tests before and during your combination treatment ® If you have chronic hepatitis B or C infection, your with PREZISTA. healthcare professional should check your blood tests more often because you have an increased chance of developing liver problems • Tell your healthcare professional if you have any of these signs and symptoms of liver problems: dark (tea-colored) urine, yellowing of your skin or whites of your eyes, pale-colored stools (bowel movements), nausea, vomiting, pain or tenderness on your right side below your ribs, or loss of appetite • PREZISTA® may cause a severe or life-threatening skin reaction or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. You should call your healthcare professional immediately if you develop a rash. However, stop taking PREZISTA® and ritonavir combination treatment and call your healthcare professional immediately if you develop any skin changes with these symptoms: fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, red or inﬂamed eyes, like “pink eye.” Rash occurred more often in patients taking PREZISTA® and raltegravir together than with either drug separately, but was generally mild Who should not take PREZISTA®? • Do not take PREZISTA® if you are taking the following ® medicines: alfuzosin (Uroxatral®), dihydroergotamine (D.H.E.45, Embolex,® Migranal®), ergonovine, ergotamine (Cafergot,® Ergomar ®), methylergonovine, cisapride (Propulsid®), pimozide (Orap®), oral midazolam, triazolam (Halcion®), the herbal supplement St. John’s wort (Hypericum perforatum ), lovastatin (Mevacor,® Altoprev,® Advicor ®), simvastatin (Zocor,® Simcor,® Vytorin®), rifampin (Rifadin,® Rifater,® • Tell your healthcare professional if you are pregnant or planning to become pregnant, or are breastfeeding — The effects of PREZISTA® on pregnant women or their unborn babies are not known. You and your healthcare professional will need to decide if taking PREZISTA® is right for you — Do not breastfeed. It is not known if PREZISTA® can be passed to your baby in your breast milk and whether it could harm your baby. Also, mothers with HIV should not breastfeed because HIV can be passed to your baby in the breast milk What are the possible side effects of PREZISTA®? • High blood sugar, diabetes or worsening of diabetes, and increased bleeding in people with hemophilia have been reported in patients taking protease inhibitor medicines, including PREZISTA® • Changes in body fat have been seen in some patients taking HIV ® medicines, including PREZISTA. The cause and long-term health effects of these conditions are not known at this time • Changes in your immune system can happen when you start taking HIV medicines. Your immune system may get stronger and begin to ﬁght infections that have been hidden • The most common side effects related to taking PREZISTA® include diarrhea, nausea, rash, headache, stomach pain, and vomiting. This is not a complete list of all possible side effects. If you experience these or other side effects, talk to your healthcare professional. Do not stop taking PREZISTA® or any other medicines without ﬁrst talking to your healthcare professional You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please refer to the ritonavir (Norvir ®) Product Information (PI and PPI) for additional information on precautionary measures. Please read accompanying Patient Information for PREZISTA® and discuss any questions you have with your doctor. 28PRZDTC0288R8 IS THE PREZISTA ® EXPERIENCE RIGHT FOR YOU? There is no other person in the world who is exactly like you. And no HIV treatments are exactly alike, either. That’s why you should ask your healthcare professional about PREZISTA® (darunavir). Once-Daily PREZISTA® taken with ritonavir and in combination with other HIV medications can help lower your viral load and keep your HIV under control over the long term. In a clinical study* of almost 4 years (192 weeks), 7 out of 10 adults who had never taken HIV medications before maintained undetectable† viral loads with PREZISTA® plus ritonavir and Truvada.® Find out if the PREZISTA® EXPERIENCE is right for you. Ask your healthcare professional and learn more at DiscoverPREZISTA.com Please read the Important Safety Information and Patient Information on adjacent pages. Snap a quick pic of our logo to show your doctor and get the conversation started. *A randomized open label Phase 3 trial comparing PREZISTA®/ritonavir 800/100 mg once daily (n=343) vs. Kaletra®/ritonavir 800/200 mg/day (n=346). †Undetectable was deﬁned as a viral load of less than 50 copies per mL. Registered trademarks are the property of their respective owners. Janssen Therapeutics, Division of Janssen Products, LP © Janssen Therapeutics, Division of Janssen Products, LP 2012 06/12 28PRZ12036G IMPORTANT PATIENT INFORMATION PREZISTA (pre-ZIS-ta) (darunavir) Oral Suspension PREZISTA (pre-ZIS-ta) (darunavir) Tablets Read this Patient Information before you start taking PREZISTA and each time you get a refill. There may be new information. This information does not take the place of talking to your healthcare provider about your medical condition or your treatment. Also read the Patient Information leaflet for NORVIR® (ritonavir). What is the most important information I should know about PREZISTA? • PREZISTA can interact with other medicines and cause serious side effects. It is important to know the medicines that should not be taken with PREZISTA. See the section “Who should not take PREZISTA?” • PREZISTA may cause liver problems. Some people taking PREZISTA in combination with NORVIR® (ritonavir) have developed liver problems which may be life-threatening. Your healthcare provider should do blood tests before and during your combination treatment with PREZISTA. If you have chronic hepatitis B or C infection, your healthcare provider should check your blood tests more often because you have an increased chance of developing liver problems. • Tell your healthcare provider if you have any of the below signs and symptoms of liver problems. • Dark (tea colored) urine • yellowing of your skin or whites of your eyes • pale colored stools (bowel movements) • nausea • vomiting • pain or tenderness on your right side below your ribs • loss of appetite PREZISTA may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. You should call your healthcare provider immediately if you develop a rash. However, stop taking PREZISTA and ritonavir combination treatment and call your healthcare provider immediately if you develop any skin changes with symptoms below: • fever • tiredness • muscle or joint pain • blisters or skin lesions • mouth sores or ulcers • red or inflamed eyes, like “pink eye” (conjunctivitis) Rash occurred more often in patients taking PREZISTA and raltegravir together than with either drug separately, but was generally mild. See “What are the possible side effects of PREZISTA?” for more information about side effects. What is PREZISTA? PREZISTA is a prescription anti-HIV medicine used with ritonavir and other anti-HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. PREZISTA is a type of anti-HIV medicine called a protease inhibitor. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). When used with other HIV medicines, PREZISTA may help to reduce the amount of HIV in your blood (called “viral load”). PREZISTA may also help to increase the number of white blood cells called CD4 (T) cell which help fight off other infections. Reducing the amount of HIV and increasing the CD4 (T) cell count may improve your immune system. This may reduce your risk of death or infections that can happen when your immune system is weak (opportunistic infections). PREZISTA does not cure HIV infection or AIDS and you may continue to experience illnesses associated with HIV-1 infection, including opportunistic infections. You should remain under the care of a doctor when using PREZISTA. Avoid doing things that can spread HIV-1 infection. • Do not share needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. • D o not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people. Who should not take PREZISTA? Do not take PREZISTA with any of the following medicines: • alfuzosin (Uroxatral®) • dihydroergotamine (D.H.E. 45®, Embolex®, Migranal®), ergonovine, ergotamine (Cafergot®, Ergomar®) methylergonovine • cisapride • pimozide (Orap®) • oral midazolam, triazolam (Halcion®) • the herbal supplement St. John’s Wort (Hypericum perforatum) • the cholesterol lowering medicines lovastatin (Mevacor®, Altoprev®, Advicor®) or simvastatin (Zocor®, Simcor®, Vytorin®) • rifampin (Rifadin®, Rifater®, Rifamate®, Rimactane®) • sildenafil (Revatio®) only when used for the treatment of pulmonary arterial hypertension. Serious problems can happen if you take any of these medicines with PREZISTA. What should I tell my doctor before I take PREZISTA? PREZISTA may not be right for you. Before taking PREZISTA, tell your healthcare provider if you: • have liver problems, including hepatitis B or hepatitis C • are allergic to sulfa medicines • have high blood sugar (diabetes) • have hemophilia • are pregnant or planning to become pregnant. It is not known if PREZISTA will harm your unborn baby. Pregnancy Registry: You and your healthcare provider will need to decide if taking PREZISTA is right for you. If you take PREZISTA while you are pregnant, talk to your healthcare provider about how you can be included in the Antiretroviral Pregnancy Registry. The purpose of the registry is follow the health of you and your baby. • are breastfeeding or plan to breastfeed. Do not breastfeed. We do not know if PREZISTA can be passed to your baby in your breast milk and whether it could harm your baby. Also, mothers with HIV-1 should not breastfeed because HIV-1 can be passed to the baby in the breast milk. Tell your healthcare provider about all the medicines you take including prescription and nonprescription medicines, vitamins, and herbal supplements. Using PREZISTA and certain other medicines may affect each other causing serious side effects. PREZISTA may affect the way other medicines work and other medicines may affect how PREZISTA works. Especially tell your healthcare provider if you take: • medicine to treat HIV • estrogen-based contraceptives (birth control). PREZISTA might reduce the effectiveness of estrogen-based contraceptives. You must take additional precautions for birth control such as a condom. • medicine for your heart such as bepridil, lidocaine (Xylocaine Viscous®), quinidine (Nuedexta®), amiodarone (Pacerone®, Cardarone®), digoxin (Lanoxin ®), flecainide (Tambocor ®), propafenone (Rythmol®) • warfarin (Coumadin®, Jantoven®) • medicine for seizures such as carbamazepine (Carbatrol®, Equetro®, Tegretol®, Epitol®), phenobarbital, phenytoin (Dilantin®, Phenytek®) • medicine for depression such as trazadone and desipramine (Norpramin®) • clarithromycin (Prevpac®, Biaxin®) • medicine for fungal infections such as ketoconazole (Nizoral®), itraconazole (Sporanox®, Onmel®), voriconazole (VFend®) • colchicine (Colcrys®, Col-Probenecid®) • rifabutin (Mycobutin®) • medicine used to treat blood pressure, a heart attack, heart failure, or to lower pressure in the eye such as metoprolol (Lopressor®, Toprol-XL®), timolol (Cosopt®, Betimol®, Timoptic®, Isatolol®, Combigan®) • midazolam administered by injection • medicine for heart disease such as felodipine (Plendil®), nifedipine (Procardia®, Adalat CC®, Afeditab CR®), nicardipine (Cardene®) IMPORTANT PATIENT INFORMATION • s teroids such as dexamethasone, fluticasone (Advair Diskus®, Veramyst®, Flovent®, Flonase®) • bosentan (Tracleer®) • medicine to treat chronic hepatitis C such as boceprevir (VictrelisTM), telaprevir (IncivekTM) • medicine for cholesterol such as pravastatin (Pravachol®), atorvastatin (Lipitor®), rosuvastatin (Crestor®) • medicine to prevent organ transplant failure such as cyclosporine (Gengraf®, Sandimmune®, Neoral®), tacrolimus (Prograf®), sirolimus (Rapamune®) • salmeterol (Advair®, Serevent®) • medicine for narcotic withdrawal such as methadone (Methadose®, Dolophine Hydrochloride), buprenorphine (Butrans®, Buprenex®, Subutex®), buprenorphine/naloxone (Suboxone®) • medicine to treat schizophrenia such as risperidone (Risperdal®), thioridazine • medicine to treat erectile dysfunction or pulmonary hypertension such as sildenafil (Viagra®, Revatio®), vardenafil (Levitra®, Staxyn®), tadalafil (Cialis®, Adcirca®) • medicine to treat anxiety, depression or panic disorder such as sertraline (Zoloft®), paroxetine (Paxil®) This is not a complete list of medicines that you should tell your healthcare provider that you are taking. Ask your healthcare provider or pharmacist if you are not sure if your medicine is one that is listed above. Know the medicines you take. Keep a list of them to show your doctor or pharmacist when you get a new medicine. Do not start any new medicines while you are taking PREZISTA without first talking with your healthcare provider. How should I take PREZISTA? • Take PREZISTA every day exactly as prescribed by your healthcare provider. • You must take ritonavir (NORVIR®) at the same time as PREZISTA. • Do not change your dose of PREZISTA or stop treatment without talking to your healthcare provider first. • Take PREZISTA and ritonavir (NORVIR®) with food. • Swallow PREZISTA tablets whole with a drink. If you have difficulty swallowing PREZISTA tablets, PREZISTA oral suspension is also available. Your health care provider will help determine whether PREZISTA tablets or oral suspension is right for you. • PREZISTA oral suspension should be given with the supplied oral dosing syringe. Shake the suspension well before each usage. • If you take too much PREZISTA, call your healthcare provider or go to the nearest hospital emergency room right away. What should I do if I miss a dose? People who take PREZISTA one time a day: • If you miss a dose of PREZISTA by less than 12 hours, take your missed dose of PREZISTA right away. Then take your next dose of PREZISTA at your regularly scheduled time. • If you miss a dose of PREZISTA by more than 12 hours, wait and then take the next dose of PREZISTA at your regularly scheduled time. People who take PREZISTA two times a day • If you miss a dose of PREZISTA by less than 6 hours, take your missed dose of PREZISTA right away. Then take your next dose of PREZISTA at your regularly scheduled time. • If you miss a dose of PREZISTA by more than 6 hours, wait and then take the next dose of PREZISTA at your regularly scheduled time. If a dose of PREZISTA is skipped, do not double the next dose. Do not take more or less than your prescribed dose of PREZISTA at any one time. What are the possible side effects of PREZISTA? PREZISTA can cause side effects including: • See “What is the most important information I should know about PREZISTA?” • Diabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including PREZISTA can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or urinate often while taking PREZISTA. • Changes in body fat. These changes can happen in people who take antiretroviral therapy. The changes may include an increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the back, chest, and stomach area. Loss of fat from the legs, arms, and face may also happen. The exact cause and longterm health effects of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Call your healthcare provider right away if you start having new symptoms after starting your HIV medicine. • Increased bleeding for hemophiliacs. Some people with hemophilia have increased bleeding with protease inhibitors including PREZISTA. The most common side effects of PREZISTA include: • diarrhea • headache • nausea • abdominal pain • rash • vomiting Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PREZISTA. For more information, ask your health care provider. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088. How should I store PREZISTA? • Store PREZISTA oral suspension and tablets at room temperature [77°F (25°C)]. • Do not refrigerate or freeze PREZISTA oral suspension. • Keep PREZISTA away from high heat. • PREZISTA oral suspension should be stored in the original container. Keep PREZISTA and all medicines out of the reach of children. General information about PREZISTA Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use PREZISTA for a condition for which it was not prescribed. Do not give PREZISTA to other people even if they have the same condition you have. It may harm them. This leaflet summarizes the most important information about PREZISTA. If you would like more information, talk to your healthcare provider. You can ask your healthcare provider or pharmacist for information about PREZISTA that is written for health professionals. For more information, call 1-800-526-7736. What are the ingredients in PREZISTA? Active ingredient: darunavir Inactive ingredients: PREZISTA Oral Suspension: hydroxypropyl cellulose, microcrystalline cellulose, sodium carboxymethylcellulose, methylparaben sodium, citric acid monohydrate, sucralose, masking flavor, strawberry cream flavor, hydrochloric acid (for pH adjustment), purified water. PREZISTA 75 mg and 150 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose. The film coating contains: OPADRY® White (polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide). PREZISTA 400 mg and 600 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose. The film coating contains: OPADRY® Orange (FD&C Yellow No. 6, polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide). This Patient Information has been approved by the U.S Food and Drug Administration. Manufactured by: PREZISTA Oral Suspension Janssen Pharmaceutica, N.V. Beerse, Belgium PREZISTA Tablets Janssen Ortho LLC, Gurabo, PR 00778 Manufactured for: Janssen Therapeutics, Division of Janssen Products, LP, Titusville NJ 08560 NORVIR® is a registered trademark of its respective owner. PREZISTA® is a registered trademark of Janssen Pharmaceuticals © Janssen Pharmaceuticals, Inc. 2006 Revised: June 2012 986588P JOURNALISM. INTEGRITY. HOPE. 5537 N. Broadway St. Chicago, IL 60640 phone: (773) 989–9400 fax: (773) 989–9494 email: firstname.lastname@example.org www.positivelyaware.com editor-in-Chief Jeff Berry associate editor Enid Vázquez copy Editor Web Master Sue Saltmarsh Joshua Thorne Rick Guasco proofreader Jason Lancaster Creative director DaY. Seize the DaY. Select pictures from A Day with HIV are featured in a new book published by Positively Aware. Keep for yourself some of the most compelling images of our 2012 anti-stigma project. Limited supply. Order your book for a $20 donation to cover the cost of printing, plus $2 for shipping. To order, go to www.adaywithhiv.com/book © 2012. Positively Aware (ISSN: 1523-2883) is published bi-monthly by Test Positive Aware Network (TPAN), 5537 N. Broadway St, Chicago, IL 60640. TPAN is an Illinois not-for-profit corporation, providing information and support to anyone concerned with HIV and AIDS issues. Positively Aware is a registered trademark of TPAN. All rights reserved. Circulation: 100,000. For reprint permission, contact Sue Saltmarsh. Six issues mailed bulk rate for $30 donation; mailed free to those living with HIV or those unable to contribute. We accept contribution of articles covering medical or personal aspects of HIV/AIDS. We reserve the right to edit or decline submitted articles. When published, the articles become the property of TPAN and its assigns. You may use your actual name or a pseudonym for publication, but please include your name and phone number. Although Positively Aware takes great care to ensure the accuracy of all the information that it presents, Positively Aware staff and volunteers, TPAN, or the institutions and personnel who provide us with information cannot be held responsible for any damages, direct or consequential, that arise from use of this material or due to errors contained herein. Opinions expressed in Positively Aware are not necessarily those of staff or TPAN, its supporters and sponsors, or distributing agencies. Information, resources, and advertising in Positively Aware do not constitute endorsement or recommendation of any medical treatment or product. TPAN recommends that all medical treatments or products be discussed thoroughly and frankly with a licensed and fully HIV-informed medical practitioner, preferably a personal physician. A model, photographer, or author’s HIV status should not be assumed based on their appearance in Positively Aware, association with TPAN, or contributions to this journal. Distribution of Positively Aware is supported in part through an unrestricted grant from ViiV Healthcare. Seize the contributing writers Keith R. Green, L iz Highleyman, Sal Iacopelli, Laura Jones, Jim Pickett, Matt Sharp photographers Chris Knight, Joshua Thorne Medical advisors Daniel S. Berger, MD Gary Bucher, MD Michael Cristofano, PA Joel Gallant, MD Swarup Mehta, PharmD advertising inquiries Lorraine Hayes email@example.com distribution Manager Bradley P Mazzie firstname.lastname@example.org POSITIVELY AWARE IS PUBLISHED BY NOV+DEC 2012 VOL U M E 2 4 N U M B ER 7 One issue, four covers For the first time in its 23-year history, Positively Aware has printed different versions of the cover—four in all—to commemorate A Day with HIV. ICAAC UPDATE HOW TO A PLAGUE NOVEMBER+DECEMBER 2012 NOVEMBER+DECEMBER 2012 NOVEMBER+DECEMBER 2012 ICAAC UPDATE HOW TO A PLAGUE NOVEMBER+DECEMBER 2012 ICAAC UPDATE HOW TO A PLAGUE SURVIVE SURVIVE SURVIVE ICAAC UPDATE HOW TO SURVIVE A PLAGUE A DAY WITH HIV 11:00 AM: LONDON. Garry Brough: “I’m the admin/moderator for the UK’s largest network of people with HIV—myHIV.org.uk. Having lived with HIV for over 20 years, I am proud to wear the t-shirt. Every day is a day with HIV, in both my work and personal life. Mostly, they are good days with HIV these days, thankfully.” 8:15 AM: ANKENY, IOWA. Brian Walker: “David was born three and a half months premature, weighing two pounds with an HIV viral load of 525,000. His picture says it all. He is my HERO. He now has a viral load of 54, and the spirit of an angel.” A DAY WITH HIV 2:00 PM: NEW YORK CITY. The staff of MISTER. Says CEO Carl Sandler: “We must ask ourselves how we are perpetuating ignorance and shame in our community, regardless of our HIV status, through the actions we take and the decisions we make around dating and sex.” A DAY WITH HIV A DAY WITH HIV 11:00 AM: VIRGINIA. Melissa: “Pop my morning pill and head up to the mountains to pick my angel’s first apples. Just another day with HIV.” D e pa r t m e n t s F e at u r e s 6 In Box 6 Readers’ poll 7 52 WHat’s goin’ on? Super Soul Sunday. 26 Spoiled identity Gay men, HIV, and stigma. 53 Salient Ramblings ‘Born to be alive.’ editor’s Note A new day with HIV. 45 The health care question What you need to know about health care reform. 13 Briefly Stribild gets approved. Sustiva, Atripla, and neuron damage. Simplified PAP application. Gonorrhea guidelines updated. c o v e r F e at u r e 36 A Day with HIV 47 Romneycare and HIV/AIDS Positively Aware’s third 19 Conference Update Reports about the heart, one pill a day, and more were among the highlights at ICAAC. annual anti-stigma photo campaign reveals compelling moments from everyday lives around the world. Looking at Massachusetts may offer some insight into health care reform. On l i n e e x t r a s Go to www.positivelyaware.com 44 Meet the judges 32 Culture club How to Survive a Plague— when activism is the prescription. 51 ask the HIV specialist Peace of mind. Diva Sheryl Lee Ralph, HIVpositive rocker Chuck Panozzo, and transgender Capitol Hill insider Diego Sanchez helped select the four covers for A Day with HIV. Debt ceiling dealing Sequestration cuts and HIV funding. www.positivelyaware.com/ 2012/12_07/ceiling.shtml Women at IAS www.positivelyaware.com/ 2012/12_07/iaswomen.shtml Follow us on Facebook and on TwitteR (@posaware) We read you comment on our articles at POSITIVELYAWARE.COM NOVe mb e r+ DEC e mb e r 2 01 2 5 P os i t i ve lyAwar e .co m In Box join the conversation: email@example.com + @posaware Readers’ poll In the SEP+OCT issue, we asked Showing your best face I am one of your biggest fans. After reading your complete and concise article “The Mirror Has Two Faces,” I am compelled to post my feelings of suspicion about Sculptra because I used it for six sessions about four years ago. I too had successful results, like Jeff. However, in November of 2011, I was diagnosed with oral squamous cell carcinoma in my left cheek and tongue. My physician caught it early; I needed to have part of my cheek removed and replaced with a skin graft, and also had laser surgery on my tongue at the same time. Needless to say, it was an atrocious ordeal, not to mention the medical costs (I only have Medicare). I have never smoked or used tobacco products. With all due respect, though I have no proof, I suspect Sculptra to be the cause. —“Cancer Survivor” via the Internet Who is more stigmatized because of HIV? Don’t know 19% MEN transgender 9% 46% WOMEN 26% primary care physician before undergoing any cosmetic procedure and weigh the risks and benefits, as well as always reporting any side effects or complications immediately. Your comments: Persistent issues I just finished reading the September + October PA from cover to cover. First, I am so happy that you dedicated this edition to positive women. I really enjoyed “Black Women, Society, and HIV,” “Battle of the Sexes,” and “Everyone Needs a Support System.” All I can say is that in my 52 years on Earth, it’s a shame that we are still talking about oppression, lack of education, lack of health care for all, race relations, and affordable clinical care. Although I didn’t agree with it all, I am certainly happy that PA is still willing to talk about conditions that should have changed ages ago. Thank you and your staff for putting the spotlight on these issues again, especially during a presidential election year. —Charlotte Moore Chicago, IL “It’s based on sexuality and gender. The ‘straight’ world doesn’t judge women so harshly and vilify them as if they were lepers. That’s been my observation since I became poz! Women also get the sympathy vote and get less judgemental comments and insults.’ “Women are more often seen as ‘victims,’ therefore, to be treated with sympathy and pity. That doesn’t mean it’s not hard for women, of course, but men are more often seen as the ‘blameworthy’ partner.” “[It] seems people still think gay men deserve to get the disease, but still feel sorry for heterosexuals who become infected.” “Every time I tell people my HIV status they look at me like I’m a monster.” “I think it does not matter your gender. If people know you have HIV, you deal with stigma.” this issue’s poll question: Jeff Berry responds: Thanks for your email, and for sharing your story. It sounds like you went through a terrible ordeal. I’m very sorry that you had to experience that, but I’m also glad to hear that you got through it okay and are a survivor. Hats off to you, my friend. I did make a quick search and couldn’t find anything in the literature or in the prescribing information showing a direct link between Sculptra and cancer. However, patients should always consult with their Do the write thinG. Positively Aware treats all communications (letters, email, etc.) as letters to the editor unless otherwise instructed. We reserve the right to edit for length, style, or clarity. Unless you tell us not to, we will use your name and city. Positively aware 5537 N. Broadway St. Chicago, IL 60640 We read you. SHare your comments about our articles at POSITIVELYAWARE.COM What do you think is the biggest cause of stigma? cast your vote at firstname.lastname@example.org 6 N OVe mb e r +DEC e m ber 201 2 positivelyaware.com P os it iv e lyAwa r e .co m Photo: EDITOR’S NOTE JEFF BERRY @PAeditor A new day with HIV 8,414. That is the number of days that I’ve been living with the knowledge that I am HIV-positive. I started taking HIV meds (well, one actually, AZT) a few months after testing positive in 1989, so most of those 8,414 days were filled with a constant, daily reminder that I have HIV. At some point, though, I realized that I wasn’t going to die, that I was one of the lucky ones who’d survived long enough to take advantage of the medications that were actually suppressing the virus, allowing me to suddenly start to live with HIV. Fast forward to 2012. That should be the end of the story, right? Unfortunately, it’s not. In August, a policeman in suburban Detroit pulled a woman over for a traffic violation, and harassed her for half an hour because she did not disclose that she was HIV-positive until after he searched her car. “I don’t want to catch nothing. I got a family,” the officer tells her on the video taken from the cop’s dashboard camera and posted on YouTube. HIV training is now being implemented for all of the law enforcement officers in the department. For all of the advances we’ve made in the last 30-plus years of fighting this epidemic, we still have a long way to go. One of the biggest obstacles still hindering us in the fight against HIV is stigma. As David Fawcett points out in his article, stigma can sometimes prevent people from getting tested or accessing care, or cause them to miss doses of their medication because they are at a family event and are afraid of being found out. A Day with HIV is Positively Aware’s anti-stigma photo campaign that has begun to tear down the walls of shame and silence that surround HIV by showing that, despite HIV, life goes on. On September 21, nearly 200 people, both HIV-positive and negative, took a snapshot to show what it means to live in a world with HIV. By coming together on that one day, we build a virtual community of support and help raise awareness about HIV, not only in our own communities, but everywhere. A number of photos came from people living outside the U.S. , including Australia, Brazil, Canada, England, Germany, New Zealand, Scotland, South Africa, Uruguay, and the island of Cyprus. Participants P os i t i ve lyAwar e .co m Photo: Chris Knight included positive parents with nega- For all of the advances tive children, and negative parents we’ve made with positive children; organizations in the last that assist and advocate for people 30-plus years living with HIV; Ji Wallace, the of fighting former Olympic medal winner from this epidemic, Australia who recently came out we still have as HIV-positive; and HIV-negative individuals who just a long way wanted to show their support. to go. For the first time we did a split cover run, so the cover you see is one of four that were produced from among this year’s submissions. The four cover photos were chosen by a panel of three judges, who we cannot thank enough: Chuck Panozzo, HIV-positive co-founder and bass player of the band Styx; Sheryl Lee Ralph, former Dreamgirl and fierce diva/advocate for people with HIV; and Diego Sanchez, transgender advocate and legislative assistant to U.S. Congressman Barney Frank. Finally, this issue of Positively Aware marks a new day for PA and the paper it’s printed on. Ironically, the weak economy and the current state of the print industry have caused a dramatic drop in the price of coated (glossy) paper, now putting it within our reach. And it is only fitting that we see this extraordinary change starting with this issue, displaying some of the most inspiring and empowering images from A Day with HIV. Be sure to go to www. adaywithhiv.com to see all of the photos submitted. So unless a cure is found in the near future, I will be spending the remainder of my days HIV-positive, however many they may be. But just like when 5:31 pm: Chicago. Staying fit and I quit smoking, after a while I healthy in both mind and body is espestopped counting, and started cially important for those living with HIV. living. I look forward to getting to the gym at least three days a week as a way to keep Take care of yourself, and in shape, manage my stress, and boost each other. my self-esteem. NOVe mb e r+ DEC e mb e r 2 01 2 7 This page intentionally left blank. ➤ This page intentionally left blank. ➤ This page intentionally left blank. ➤ This page intentionally left blank. ➤ This page intentionally left blank. ➤ Enid Vázquez BRIEFLY state AIDS Drug Assistance Programs (ADAPs). Nevertheless, the task force acknowledged the disappointment and controversy within the larger HIV community about Stibild’s $28,500 annual price tag. According to a task force press release, setting the price of Stribild higher than Atripla, despite being less than several protease inhibitor-based regimens, may affect costs outside of ADAP. Stribild gets FDA approval as new single-tablet regimen Stribild (formerly known as the Quad), a complete once-daily single-tablet regimen (STR), was approved by the FDA in August. Stribild joins Atripla and Complera as a complete HIV regimen in one pill, each taken once daily. The FDA based approval on studies in which Stribild showed non-inferiority at 48 weeks to two standard of care regimens on the market, Atripla or Norvirboosted Reyataz with Truvada. Stribild was approved for people taking HIV medications for the first time, although some doctors may inevitably prescribe it for patients switching to a new antiviral therapy. The Department of Health and Human Services (DHHS) acted right away to update its HIV treatment guidelines, adding Stribild as an alternative regimen, with a B1 rating indicating a “moderate” recommendation based on randomized controlled studies (the gold standard of research). In contrast, Isentress/Truvada (Stribild’s most direct competition based on main drug class) has an A1 recommendation—“strong” based on randomized controlled studies. Stribild consists of four drugs: the experimental integrase inhibitor elvitegravir, emtricitabine, tenofovir, and cobicistat. Cobicistat has no anti-HIV property; it is used to boost blood levels of elvitegravir. The only other integrase inhibitor on the market is Isentress. Emtricitabine and tenofovir are available as the antiviral Truvada, which is now also approved as PrEP, or pre-exposure prophylaxis for HIV prevention. The most common side effects of Stribild are nausea and diarrhea. For more information, go to www.positivelyaware.com/stribild. See the Stribild package insert at www.gilead.com. P os i t i ve lyAwar e .co m DHHS noted, “Limitations include a significant potential for drug-drug interactions, the availability of only 48 weeks of safety data, usage limited to individuals with pre-treatment creatine clearance levels above 70 mL [a kidney laboratory measure], a possible increased risk of proximal renal tubulopathy [a kidney complication], limited data in patients with advanced HIV disease and in women, and the need for the drug to be taken with food.” Gilead Sciences, maker of Stribild and Complera, as well as two of the three drugs in Atripla, established an access program for Stribild for people without insurance and a co-pay assistance for patients with private insurance. Gilead’s U.S. Advancing Access program can be reached at 1-800-226-2056. In addition, the company reached a pricing agreement with the ADAP Crisis Task Force, creating a lower price for Gonorrhea treatment guidelines updated The Centers for Disease Control and Prevention (CDC) published updated guidelines for the treatment of gonorrhea in its August 10 Morbidity and Mortality Weekly Report. The presence of the sexually transmitted infection can increase the risk of acquiring HIV. The CDC previously recommended only oral antibiotic treatment as the first line of defense for gonorrhea. The agency now instead recommends that infections be treated with the injectable antibiotic ceftriaxone in combination with one of Sustiva, Atripla tied to neurologic toxicity A team of researchers from Johns Hopkins University School of Medicine reported that the way the body metabolizes the HIV medication efavirenz may contribute to cognitive (brain function-related) impairment . Efavirenz is sold under the brand name Sustiva, and is also found in Atripla. The researchers looked at drug levels of efavirenz and its metabolites (substances created when the drug is broken down by the liver). The metabolite 8-hydroxyefavirenz was “10 times more toxic to brain cells than the drug itself,” the team reported, “and, even in low concentrations, causes damage to the dendritic spines of neurons.” Neurons are cells of the nervous system. The dendritic spine, continued the press release, “is the information processing point of a neuron, where synapses—the structures that allow communication among brain cells—are located.” Efavirenz, one of the most effective and widely prescribed of the HIV drugs (primarily as Atripla) is known for its cognitive side effects, such as vivid and sometimes colorful dreams. Its ability to penetrate cerebral-spinal fluid and enter the brain is considered a good thing, but of course, the potential for harm is important to understand. The findings were reported in September and published online in the Journal of Pharmacology and Experimental Therapeutics. Photo: Joshua Thorne NOVe mb e r+ DEC e mb e r 201 2 13 Enid Vázquez BRIEFLY “After the initial iPrEx study, there was concern that the protective effect of Truvada was fragile, and that individuals taking the drug would need to adhere perfectly to a daily regimen for it to work,” said Dr. Grant in a press release. He is also a professor at the University of California, San Francisco (UCSF), with which Gladstone is affiliated. “This new study suggests that Truvada can help block the virus even if the person on a daily regimen doesn’t always adhere perfectly.” Perfect adherence to drug regimens is notoriously difficult for people to accomplish, so the research team looked for a way to calculate Truvada’s effectiveness while taking into account differing adherence levels. The team developed a clinical trial in which they gave different amounts of the drug (two, four, or seven doses per week) to a cohort of 24 people without HIV. This resulted in different drug concentrations in blood drawn from each participant, thereby mimicking different levels of adherence. They then used a model to compare the drug concentrations in the blood of these participants to the concentrations of original iPrEx study participants in order to determine how well iPrEx participants adhered to the daily regimen, and how well they were protected against HIV at different levels of adherence. “Surprisingly, we found that the iPrEx participants didn’t have to adhere perfectly to the drug regimen to reap Truvada’s benefits,” said Dr. Grant. “Even in those patients who didn’t adhere perfectly, their risk of contracting HIV still dropped by more than 90%—offering a high level of protection against the virus.” This study is the first to establish an objective, quantitative method that estimates drug concentration levels and then correlates those levels with the drug’s effectiveness at preventing transmission. These results could open the door to the exploration of ways to make dosing less costly, more convenient, and more adaptable to people’s habits. “Our immediate next step, however, is to take the methods we’ve developed and create simple yet powerful tools that can measure drug adherence to help doctors monitor how well Truvada is working in their patients,” said Dr. Anderson. “Yet until these and other efficacy studies of alternative dosing strategies have been completed, the only regimen that should be used in clinical practice is the FDA approved one: one Truvada each day.” “Patients should still take one pill a day to achieve the best results, and we encourage people to explore multiple methods to prevent HIV—such as regular condom use, early treatment of HIV infection in partners, good communication, and male circumcision,” Dr. Grant said. “We hope that our findings lead to more effective use of prevention tools that finally squash the HIV/AIDS epidemic.” two oral antibiotics, either doxycycline or azithromycin. In addition, the cephalosporin oral antibiotics, such as cefixime (brand name Suprax), are no longer recommended for treatment. The new and more onerous treatment recommendations arise from the fact that people are increasingly being infected with gonorrhea that cannot be treated with oral antibiotics. Cephalosporins are the second oral antibiotic in less than a decade to be taken off the CDC’s list of medications used to treat gonorrhea. Both times, drug-resistant gonorrhea was seen primarily in men who have sex with men (MSM). Although efficacy of cefixime is still being seen, there is laboratory evidence that it is becoming less effective. The CDC reported concern that “continued use of cefixime may prompt resistance to all cephalosporins. Limiting its use now may help preserve ceftriaxone as a treatment option for a little longer.” Read the report: www.cdc.gov/mmwr Interim guidelines issued for PrEP for heterosexuals Just as they did for men who have sex with men, the CDC has now issued interim guidelines for the use of Truvada for pre-exposure prophylaxis (PrEP) for heterosexuals who wish to prevent HIV infection. Read the press release: www.cdc. Truvada’s efficacy as PrEP reaffirmed New research from an international team of HIV/AIDS experts led by Gladstone Institute investigator Robert Grant, MD, MPH in San Francisco and Peter Anderson, PharmD, at the University of Colorado, provides the first estimate of the drug concentration levels needed for Truvada to prevent the spread of HIV/AIDS. The new study, available online in the September 12 Science Translational Medicine, builds on the 2010 iPrEx clinical study in which Dr. Grant and his colleagues found that Truvada could prevent new infections in people likely to come in contact with the virus. But questions about the drug’s real-world effectiveness at preventing HIV transmission remain—particularly concerning the issue of adherence to a regimen of taking a pill every day. 1 4 NOVe m b e r +DEC e m ber 201 2 gov/nchhstp/newsroom/2012/PrEPHeterosexualGuidance-PressRelease.html Simplified application form now available for all PAPs The Common Patient Assistance Program Application (CPAPA), announced by Health and Human Services (HHS) Secretary Kathleen Sebelius at the International AIDS Conference in July, went into effect on September 12 and is now available at http: //hab.hrsa.gov/ P os it iv e lyAwa r e .co m E-NEWS | patientassistance/index.html. This single common application allows uninsured individuals living with HIV and/or their providers/caregivers to use one application to apply for multiple patient assistance programs (PAPs). HHS, working collaboratively with the National Alliance of State and Territorial AIDS Directors (NASTAD) through a cooperative agreement with the Health Resources & Services Administration’s (HRSA) HIV/AIDS Bureau, seven pharmaceutical companies, and key community stakeholders, took the lead in developing the application form. The form collects the necessary information required by all seven companies’ PAPs. Company PAPs that will now accept the common application form include: Abbott Laboratories, Boehringer Ingelheim, Bristol-Myers Squibb, Gilead Sciences, Inc., Johnson & Johnson (Janssen Therapeutics), Merck, and ViiV Healthcare. For more information about the common PAP application form: Sign up for the weekly email newsletter of positively aware. go to positivelyaware.com Deborah Persaud of Johns Hopkins University and Dr. Katherine Luzuriaga of the University of Massachusetts, who hope to determine if it is possible to cure HIV with antiretroviral therapy (ART) alone in children in whom ART had been started soon after birth and continued for an average of 15 years. The third grant will fund a study that will continue to investigate using disulfiram—a drug used to treat alcoholism—to flush the virus out of latently HIV-infected cells. The study, conducted by Dr. Steven Deeks of the University of California, San Francisco, and Dr. Julian Elliott of Monash University in Australia, will build on a smaller study that suggested that the drug may reverse HIV latency in some people. Drug news from ICAAC Also see pages 19–21. some abstracts available at www.natap.org. A new INSTI The investigational drug S/GSK1265744 is a long-acting injectable with hopes for once-a-month dosing. Shionogi and GlaxoSmithKline reported finding limited cross-resistance between S/GSK1265744 and two similar medications already on the market (the oral drugs Isentress and elvitegravir, which is available in the recently approved Stribild). All three medications are integrase strand transfer inhibitors, or INSTIs. The researchers reported a “potential for a high barrier to [drug] resistance” and that their data suggests “a favorable profile for both HIV treatment and PrEP” (pre-exposure prophylaxis, or prevention). Switch from Truvada to Epzicom HIV-positive people taking Norvir-boosted Reyataz with Truvada were able to maintain their viral load suppression out to 24 weeks when switching out the Truvada and replacing it with Epzicom and dropping Norvir. The switch also allowed them to significantly improve their biomarkers for potential kidney and bone toxicity. Truvada is associated with the potential for such toxicity. Also, their HDL (good cholesterol) increased. While the results were positive, 24 weeks is a short period of time. Nearly 300 individuals participated in the study, with nearly 200 switching meds; the study will continue out to 48 weeks. www.nastad.org/resources.aspx?cate gory=HIVPatientAssistanceProgram(P AP)information. Contact Murray Penner, NASTAD’s Deputy Executive Director, at mpenner@NASTAD.org. Cure-focused research grants announced by amfAR The Foundation for AIDS Research (amfAR) announced in September the awarding of three new grants to research teams as part of the Foundation’s twoyear-old amfAR Research Consortium on HIV Eradication (ARCHE). One of the grants will go to Dr. Timothy Henrich of Brigham and Women’s Hospital in Boston to determine which elements of the “Berlin patient’s” treatment were critical to his cure—findings that may guide attempts at designing a cure that could be applied more widely. Another ARCHE grant will go to Dr. P os i t i ve lyAwar e .co m Son of tenofovir GS-7340 is a next-generation prodrug of tenofovir (brand name Viread, found in Truvada, Atripla, Complera, and Stribild). These popular formulations containing tenofovir make it one of the most widely prescribed HIV medications in the country. It is metabolized inside human cells to take its active form. The GS-7340 prodrug avoids this step in the absorption of tenofovir. Researchers reported test tube results showing superior antiviral potency with GS-7340 as well as synergy with other HIV medications, with higher intracellular levels for the prodrug. A new NNRTI? MK-1439 represents a sort of blast from the past: it’s a non-nucleoside reverse transcriptase inhibitor (NNRTI), or from the second class of HIV medications that were developed. The class includes Intelence, Edurant (found in Complera), Sustiva (found in Atripla), and Viramune-XR. Merck & Co. researchers reported drug resistance data comparing MK-1439 to the NNRTIs on the market, finding the potential for it to work when current drugs don’t. NOVe mb e r+ DEC e mb e r 201 2 15 Model INDICATIONS ISENTRESS (raltegravir) is a prescription HIV-1 medicine used with other HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). The use of other medicines active against HIV-1 in combination with ISENTRESS may increase your ability to fight HIV. ISENTRESS does not cure HIV infection or AIDS. Patients must stay on continuous HIV therapy to control infection and decrease HIV-related illnesses. IMPORTANT RISK INFORMATION Severe, potentially life-threatening, and fatal skin reactions and allergic reactions have been reported in some patients taking ISENTRESS. If you develop a rash with any of the following symptoms, stop using ISENTRESS and contact your doctor right away: fever, generally ill feeling, extreme tiredness, muscle or joint aches, blisters or sores in mouth, blisters or peeling of skin, redness or swelling of the eyes, swelling of the mouth or face, problems breathing. Sometimes allergic reactions can affect body organs, like the liver. Contact your doctor right away if you have any of the following signs or symptoms of liver problems: yellowing of the skin or whites of the eyes, dark or tea-colored urine, pale-colored stools/bowel movements, nausea/vomiting, loss of appetite, pain, aching or tenderness on the right side below the ribs. Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your doctor right away if you start having new symptoms after starting your HIV medicine. People taking ISENTRESS may still develop infections or other conditions associated with HIV infections. The most common side effects of ISENTRESS include: headache, trouble sleeping, nausea, and tiredness. Less common side effects include: weakness, stomach pain, dizziness, depression, and suicidal thoughts and actions. I am spontaneous. I am adventurous. I am into my work. I am HIV positive. You are special, unique, and different from anyone else. And so is your path to managing HIV. When you’re ready to start HIV therapy, talk to your doctor about a medication that may fit your needs and lifestyle. In a clinical study lasting 156 weeks, patients being treated with HIV medication for the first time who took ISENTRESS (raltegravir) plus Truvada: Had a low rate of side effects — The most common side effects of moderate to severe intensity (that interfered with or kept patients from performing daily activities) were trouble sleeping (4%), headache (4%), nausea (3%), tiredness (2%) In a clinical study lasting 156 weeks, cholesterol was measured at week 144 and patients who took ISENTRESS plus Truvada experienced less effect on LDL cholesterol (“bad” cholesterol): — Cholesterol increased an average of 7 mg/dL with ISENTRESS plus Truvada versus 22 mg/dL with Sustiva plus Truvada — When they began the study, the average LDL cholesterol of patients on ISENTRESS plus Truvada was 97 mg/dL versus 92 mg/dL for those on Sustiva plus Truvada Ask your doctor about ISENTRESS. Not sure where to start? Visit isentress.com/questions Tell your doctor right away if you get unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This may be a sign of a rare but serious muscle problem that can lead to kidney problems. Rash occurred more often in patients taking ISENTRESS and darunavir/ritonavir (Prezista) together, than with either drug separately, but was generally mild. Tell your doctor about all your medical conditions, including if you are pregnant or plan to become pregnant. It is not known if ISENTRESS can harm your unborn baby. Also tell your doctor if you are breastfeeding or plan to breastfeed. You should not breastfeed if you have HIV because of the risk of passing HIV to your baby. Tell your doctor about all the medicines you take, including prescription medicines like rifampin (a medicine used to treat infections such as tuberculosis), non-prescription medicines, vitamins, and herbal supplements. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088. Please read the Patient Information on the adjacent page for more detailed information. Need help paying for ISENTRESS? Call 1-866-350-9232 Copyright © 2012 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1038369-0001 09/12 Sustiva is a registered trademark of Bristol-Myers Squibb Brands mentioned are the trademarks of their respective owners. Patient Information ISENTRESS ® (eye sen tris) (raltegravir) Film-Coated Tablets Read this Patient Information before you start taking ISENTRESS and each time you get a refill. There may be new information. This information does not take the place of talking with your doctor about your medical condition or your treatment. What is ISENTRESS? ISENTRESS is a prescription HIV medicine used with other HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). When used with other HIV medicines, ISENTRESS may reduce the amount of HIV in your blood (called “viral load”). ISENTRESS may also help to increase the number of CD4 (T) cells in your blood which help fight off other infections. Reducing the amount of HIV and increasing the CD4 (T) cell count may improve your immune system. This may reduce your risk of death or infections that can happen when your immune system is weak (opportunistic infections). ISENTRESS does not cure HIV infection or AIDS. People taking ISENTRESS may still develop infections or other conditions associated with HIV infection. Some of these conditions are pneumonia, herpes virus infections, and Mycobacterium avium complex (MAC) infections. Patients must stay on continuous HIV therapy to control infection and decrease HIV-related illnesses. Avoid doing things that can spread HIV-1 infection to others: • Do not share needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. • Do not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. Ask your doctor if you have any questions on how to prevent passing HIV to other people. What should I tell my doctor before taking ISENTRESS? Before taking ISENTRESS, tell your doctor if you: • have liver problems. • have any other medical conditions. • are pregnant or plan to become pregnant. It is not known if ISENTRESS can harm your unborn baby. Pregnancy Registry: You and your doctor will need to decide if taking ISENTRESS is right for you. If you take ISENTRESS while you are pregnant, talk to your doctor about how you can be included in the Antiretroviral Pregnancy Registry. The purpose of the registry is to follow the health of you and your baby. • are breastfeeding or plan to breastfeed. - Do not breastfeed if you are taking ISENTRESS. You should not breastfeed if you have HIV because of the risk of passing HIV to your baby. - Talk with your doctor about the best way to feed your baby. Tell your doctor about all the medicines you take, including: prescription and nonprescription medicines, vitamins, and herbal supplements. Taking ISENTRESS and certain other medicines may affect each other causing serious side effects. ISENTRESS may affect the way other medicines work and other medicines may affect how ISENTRESS works. Especially tell your doctor if you take: • rifampin (Rifadin, Rifamate, Rifater, Rimactane), a medicine commonly used to treat tuberculosis. Ask your doctor or pharmacist if you are not sure whether any of your medicines are included in the list above. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine. Do not start any new medicines while you are taking ISENTRESS without first talking with your doctor. How should I take ISENTRESS? • Take ISENTRESS exactly as prescribed by your doctor. • You should stay under the care of your doctor while taking ISENTRESS. • Do not change your dose of ISENTRESS or stop your treatment without talking with your doctor first. • Take ISENTRESS by mouth, with or without food. • ISENTRESS Film-Coated Tablets must be swallowed whole. • If you miss a dose, take it as soon as you remember. If you do not remember until it is time for your next dose, skip the missed dose and go back to your regular schedule. Do not double your next dose or take more than your prescribed dose. • If you take too much ISENTRESS, call your doctor or go to the nearest emergency room right away. • Do not run out of ISENTRESS. Get your ISENTRESS refilled from your doctor or pharmacy before you run out. What are the possible side effects of ISENTRESS? ISENTRESS can cause serious side effects including: • Serious skin reactions and allergic reactions. Severe, potentially life-threatening and fatal skin reactions and allergic reactions have been reported in some patients taking ISENTRESS. If you develop a rash with any of the following symptoms, stop using ISENTRESS and contact your doctor right away: ° fever ° muscle or joint aches ° redness or swelling of the eyes ° generally ill feeling ° blisters or sores in mouth ° swelling of the mouth or face ° extreme tiredness ° blisters or peeling of the skin ° problems breathing Sometimes allergic reactions can affect body organs, like the liver. Contact your doctor right away if you have any of the following signs or symptoms of liver problems: ° yellowing of the skin or whites of the eyes ° dark or tea colored urine ° pale colored stools/bowel movements ° nausea/vomiting ° loss of appetite ° pain, aching or tenderness on the right side below the ribs • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your doctor right away if you start having new symptoms after starting your HIV medicine. The most common side effects of ISENTRESS include: • headache • nausea • trouble sleeping • tiredness Less common side effects include: • weakness • depression • stomach pain • suicidal thoughts and actions • dizziness Tell your doctor right away if you get unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This may be a sign of a rare but serious muscle problem that can lead to kidney problems. Rash occurred more often in patients taking ISENTRESS and darunavir/ritonavir together than with either drug separately, but was generally mild. Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of ISENTRESS. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. How should I store ISENTRESS? Film-Coated Tablets: • Store ISENTRESS Film-Coated Tablets at room temperature between 68°F to 77°F (20°C to 25°C). Keep ISENTRESS and all medicines out of the reach of children. General information about ISENTRESS Medicines are sometimes prescribed for conditions that are not mentioned in Patient Information Leaflets. Do not use ISENTRESS for a condition for which it was not prescribed. Do not give ISENTRESS to other people, even if they have the same symptoms you have. It may harm them. This leaflet gives you the most important information about ISENTRESS. If you would like to know more, talk with your doctor. You can ask your doctor or pharmacist for information about ISENTRESS that is written for health professionals. For more information go to www.ISENTRESS.com or call 1-800-622-4477. What are the ingredients in ISENTRESS? ISENTRESS Film-Coated Tablets: Active ingredient: raltegravir Inactive ingredients: microcrystalline cellulose, lactose monohydrate, calcium phosphate dibasic anhydrous, hypromellose 2208, poloxamer 407 (contains 0.01% butylated hydroxytoluene as antioxidant), sodium stearyl fumarate, magnesium stearate. The film coating contains: polyvinyl alcohol, titanium dioxide, polyethylene glycol 3350, talc, red iron oxide and black iron oxide. This Patient Information has been approved by the U.S. Food and Drug Administration. Distributed by: Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. Whitehouse Station, NJ 08889, USA Revised April 2012 USPPI-T-05181208R020 Copyright © 2007, 2009, 2011 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1038369-0001 09/12 U.S. Patent Nos. US 7,169,780 C ON F E R EN C E U PDA T E ICAAC 2012 San F r anc i s c o or cath (insertion of a catheter, or tube, into a chamber or vessel of the heart, for either diagnostic or treatment purposes), in patients with unstable angina (chest pain) or suspected coronary artery disease (CAD). The HIV patients were an average of 49 years old. This made it very difficult for the team to put together an age-matched control group for comparison purposes, because few HIV-negative individuals had a cath done around that age. These patients, whether HIV-positive or negative, were already in stable care, with at least three medical visits in the previous year, “so we felt it wasn’t an access to care issue so much as failure to recognize the risk factors in HIV and the fact that the higher proportion of HIV patients with cardiovascular disease weren’t recognized until a coronary event was about to happen or already underway,” said Dr. Hicks. The good news was that once CAD was diagnosed, HIV-positive patients received the same care as HIV-negative ones, such as bypass surgery or getting a stent. The patients came from Duke University and the University of North Carolina at Chapel Hill. Daniel D. Pearce, MD, of Loma Linda University in Loma Linda, California, reported a higher rate of death for heart attack patients who had HIV compared to those who were HIV-negative. His team looked NOVe mb e r+ DEC e mb e r 201 2 19 Reports about the heart, one pill a day, and more were highlighted when ICAAC, the leading conference on infectious diseases and antimicrobial agents convened in San Francisco. For more conference information, go to icaac.org. Aware of the heart By Jeff Berry and Enid Vázquez People with HIV may develop heart disease earlier than HIV-negative individuals and they may also have a greater risk of dying from it, reported two separate research teams. “[Our] study was done to evaluate whether or not HIVpositive patients were receiving the same consideration for cardiovascular disease by their health care providers as HIV-negative patients,” Charles Hicks, MD, of Duke University, wrote in a statement summarizing his team’s P os i t i ve lyAwar e .co m findings. “We hypothesized that if they were not, then coronary disease would be diagnosed later in the disease process—often after having already suffered a heart attack or developing unstable angina (impending heart attack)—rather than through earlier evaluation of chest pain or other symptoms. “This is in fact what was found,” he continued. “54% of HIV-positive patients did not have coronary catheterization until the time of an acute coronary event, as compared to 34% of controls. Since the current quality of HIV treatment now allows most HIV-infected patients to live into old age, and given the concern that HIV itself and/or the medications used to treat it may increase cardiovascular risk, failure to aggressively treat cardiac risk factors and to identify heart disease early could have significant consequences for the growing population of HIV-infected persons.” His team looked at firsttime cardiac catheterization, Photo @ Francesco Carucci C ON F E R EN C E U PDA T E ICAAC 2012 San F r anc i s c o at the Nationwide Inpatient Sample, a huge national database on hospitalized people. ”We found the hazard ratio of dying was 1.83 times greater if you have HIV,” said Dr. Pearce. (A hazard ratio of 1.0 would be an equal risk between the two groups. A hazard ratio of 1.83 represents an 83% higher risk.) Furthermore, 4% of the HIV-positive heart attack patients died vs. 2% of the HIV-negative ones. Unlike Dr. Hicks’ team, Dr. Pearce’s group found inequality in the way people with HIV were treated. They were significantly less likely to get typical heart attack medications and procedures. The team looked at patients hospitalized for at least a day. Dr. Pearce agreed with Dr. Hicks when he said that medical providers should be aware of these differences found in the HIV-positive population, an issue long raised by specialists. He noted various biological dysfunctions promoting heart disease which have been found in HIV-positive people, saying research looking at what causes these problems needs to continue. There could be other concerns, as well. “It could be a bias on the doctor’s part,” he continued, “like we had a bias against women and we weren’t treating women correctly, or it just could be some systemic thing or that HIV or the medications are causing them to be sicker and they won’t qualify for the intervention.” 2 0 NOVe m b e r +DEC e mber 201 2 He said the findings raise the question of having an echocardiogram earlier for HIV-positive patients or considering aspirin therapy for them, and Dr. Hicks urged medical providers to start considering heart disease in HIV-positive patients with chest discomfort. “Because the patients are young, we may not think of cardiovascular disease,” he said. “We don’t want people to have the procedure after they’ve already had injury to their heart,” he added. You can see a panel presentation with the two men, along with Kristy Kaiser, MD, of Georgetown University (who worked in Dr. Hicks’ study) at www.microbeworld. org/index.php?option=com_ jlibrary&view=article&id=9346. Black people experience less viral suppression Black people have less HIV virologic success (as shown by a drop in their viral load) than whites, according to a look at six gold-standard studies in HIV treatment with a total of nearly 5,000 individuals (called a “meta-analysis”). According to a summary from lead author Christopher Evans, MD, MPH, of AIDS ARMS in Dallas, “Comparison by race highlighted the fact that [b]lacks still experienced higher rates of virologic failure regardless of their underlying HAART [highly active antiretroviral therapy] regimen.” In the summary, Evans explains that, “Failure to suppress replicating HIV virus in [b]lack participants in clinical trials has looming implications for the individual... especially if there is a consensus to meet the goals set forth in policies outlined in the National HIV/ AIDS strategy. “Considering the overwhelming evidence that successful HIV treatment positively impacts morbidity [illness], mortality, and community prevention,” he continues, “it should be an essential goal of both policy makers and research initiatives to understand the drivers of the inequities demonstrated in clinical trials. “The impact of social factors,” he noted, “such as mental health, cost, health literacy, and food security, on HAART and virologic failure has been examined in other studies, but there is not a clear correlation with social disparities, race, and virologic failures. In studies that have tried to control for some factors such as education and social support, this virologic disparity still persisted between [b]lacks and other groups.” He noted that the difference may be explained by such factors as pharmacokinetic differences, psychosocial barriers to adherence, patient-provider relationships, care delivery models, and societal and cultural issues. Long-acting drug in development Chinese researchers presented proof-of-concept (in other words, “this can work”) data on a long-acting HIV fusion inhibitor medication, which suppressed HIV for six to ten days after a single injection. Currently, Fuzeon is the only fusion inhibitor on the market. Fuzeon is self-administered every 12 hours as a subcutaneous injection. According to the study abstract, “Despite great progress made in combating HIV infection and saving lives with antiretroviral drugs, poor patient compliance and drug resistance remain major causes of treatment failure. Therefore, long-acting antiHIV agents that are effective in treating drug-resistant HIV viruses while allowing simpler regimens are greatly needed.” Data were presented from a dose-escalating study and a four-week multipledose study in which people received albuvirtide daily via intravenous (IV) injection for the first three days followed by two once-weekly doses after the first week. No injection site reactions were seen and albuvirtide was determined to be safe and well-tolerated by all the study participants who took it. Furthermore, no antibodies were developed against albuvirtide. Albuvirtide is made up of large molecues, and that raises concern about P os i t iv e lyAwa r e .co m P ROOF 1 0 the potential for the body to react with antibodies, which could inactivate the drug or cause medical problems. Greater viral suppression was seen with higher doses. The researchers said a study combining albuvirtide with other HIV drugs should be conducted. Once-daily pills improve outcomes People taking only one pill daily for their HIV treatment had less hospitalization and greater adherence than those taking multiple pills. Those findings were presented by Cal Cohen, MD, of the Community Research Initiative of New England, in Boston. He and his colleagues looked at data from Medicaid claims since once-daily single tablet regimens (STRs) have become available. Previously, other studies found that STRs improved adherence—taking medication as prescribed (every day, with or without food, etc.). Adherence is especially important in HIV treatment because the virus can mutate around missed or incorrectly taken medications, making therapy ineffective in the process. Of nearly 8,000 patients prescribed HIV therapy, 1,838 were given an STR and 5,945 were given a multiple-pill regimen. The people on STRs had a 25% lower risk of hospitalization and 14 fewer hospitalizations per 100 patients. Women of child-bearing age on STRs and men with a previously diagnosed mental disorder taking STRs also had less hospitalization. The differences were statistically significant, even after taking other things into consideration, such as being on therapy for the first time (when results tend to be the best). The study poster noted that the higher adherence achieved with STRs may have contributed to these results. It also noted that because this was a cohort study (looking at an existing group) instead of a randomized one (where patients are matched as equally as possible and then divided into the treatments being examined), there may be confounding factors in the results. The study also found that, as with all prescription drugs, some people prescribed an STR just wouldn’t take it— about 10% of all HIV drug prescriptions, STR or not, went unfilled. Zinc finger gene therapy continues to show promise For HIV-positive individuals on HAART with low CD4 T-cell counts (immune nonresponders), there are limited therapeutic options. CCR5 is one of the major co-receptors on CD4 cells which HIV uses to enter. Zinc finger nuclease (ZFN) technology modifies the CCR5 gene on CD4 T-cells from the patient’s own body in an effort to increase them while creating cells that are resistant to HIV. The “byproduct” of this process is called SB-728-T. Data presented from a small phase 1 study suggest that this approach to HIV therapy offers the hope of providing a persistent source of CD4 T-cells that are resistant to HIV infection. The technique, developed by Sangamo Biosciences, uses a process called apheresis to collect T-cells from the patient’s blood. The ZFN is then used to interfere with CCR5 gene expression, and the altered SB-728 T-cells multiply and are infused back into the individual. SB-728-T was safe and well tolerated with minor reversible infusion-related symptoms, and resulted in significant increases in CD4 T-cells averaging 233 cells/ mm3 at 14 days, and 93 cells/mm3 at 12 months. The authors concluded that the preliminary data suggest that SB-728-T provides “sustained improvement in the CD4 compartment and has the potential to reconstitute the immune system.” Phase 1 and 2 studies are moving forward. Reyataz and kidney stones Reyataz, one of two preferred HIV protease inhibitor (PI) medications under U.S. treatment guidelines, is associated with the risk of kidney stones and other potential renal abnormalities. According to Japanese researchers, people taking Norvir-boosted Reyataz developed kidney stones 10 times more frequently than those taking other PIs. Kidney stones were diagnosed in 31 of 465 individuals on boosted Reyataz vs. four out of 775 patients taking another PI. Furthermore, six of the 18 people who continued taking boosted Reyataz after developing kidney stones experienced new ones. Lead researcher Yohei Hamada, MD, pointed out that most participants were of East Asian origin and, “Thus, it will be important to investigate the association between [Norvir-boosted Reyataz] and the development of renal stones in other populations.” The study was conducted at the National Center for Global Health and Medicine in Tokyo. For all study abstracts, Photo © Sarah Lee go to www.icaac.org. N OVe mb e r+ D ECe mb e r 201 2 21 P os i t i ve lyAwa r e .co m This page intentionally left blank. ➤ This page intentionally left blank. ➤ This page intentionally left blank. ➤ This page intentionally left blank. ➤ SPOILED Identity Gay men, HIV, and stigma W by David Fawcett PhD, LCSW | Photography by chris knight hen John failed to arrive for his psychotherapy session, I became concerned. He had been living with HIV for years and had always been responsible with appointments, medications, and self care. A call to his roommate revealed he hadn’t arrived home the night before, and after several worrisome days, he was found in a hospital in another county. He had become disoriented while driving and had run his car off the road. Medical tests were troubling: John was diagnosed with HIV encephalopathy complicated by hepatitis. His cognitive processes were in decline and, alone and unable to care for himself, John was placed in a nursing home to begin what would sadly be his final months. After a lifetime of effectively combating discrimination, John’s last days were filled with gay and HIV-related stigma. At 42, he clearly stood out from the other geriatric residents. He ate by himself and interacted with no one. His own frailty prevented him from reaching out. While other residents were unaware of his diagnosis, staff certainly knew but were unaccustomed to HIV/AIDS. Some refused to touch John or provide any care at all. Others confronted him directly, stating that, as a gay man, he got what he deserved, while others went out of their way to whisper their hateful words. Complaints to the facility administrators resulted in reprimands and a brief training event, but nothing significantly changed. In his final months, John was driven back into the closet under the crushing weight of stigma. 2 6 NOVe m b e r +DEC e mber 201 2 This is not a scenario from the early years of the AIDS epidemic. Unfortunately, this occurred recently and is just one representation of a broad range of stigmatizing attitudes and behaviors that impact both the growth and trajectory of the HIV epidemic. Despite campaigns to address it, there continues to be no safe refuge from stigma and in fact, in some ways the situation is deteriorating. Societal attitudes actually appear to be backsliding, a growing divide is separating negative and positive gay men, and the critical chatter of self-talk and self-judgment keeps the pain of stigma alive among those living with the virus. Damaged goods T he concept of stigma became prominent with research in the 1960s by Irving Goffman who studied prisoners, mental health patients, and homosexuals. He found that stigma sprang from a perceived violation of shared attitudes, beliefs, and values, and that societal power was very much entwined with these P os i t iv e lyAwa r e .co m beliefs and resulting discrimination. When certain attributes are deemed to be negative (such as HIV status, homosexuality, or substance abuse), the individuals who have those characteristics become deeply discredited and, in Goffman’s words, are reduced “from a whole and usual person to a tainted, discounted one.” This difference, or deviance, results in what he called a “spoiled identity” and which many of my gay, HIV-positive clients describe, with great personal pain, as the distinct feeling of being “damaged goods.” Stigma is often conceptualized as having two expressions: enacted versus felt stigma. When enacted by others, stigma results in very real discrimination which can be described as unfair treatment based simply on someone belonging to a particular group or having a certain attribute such as HIV. Enacted stigma can take the form of silence or rejection, as well as verbal or even physical abuse. Felt or perceived stigma, on the other hand, is the real or imagined fear of societal attitudes. It is more insidious because it is, literally, an inside job and is rooted in shame, the deep belief that one is significantly and irreparably flawed. It often results in self-imposed discrimination, a defensive choice to act as if stigma has already been expressed. Many HIVpositive men, for example, won’t date in order to avoid the painful consequences of stigma or defer disclosure because of potential rejection. As gay men, we are bombarded from an early age with negative messages that there is something wrong with us. This disconnects our internal feelings from our external presentation, and leads inevitably to the challenge of discovering our “authentic self.” (This process and its healing are wonderfully described in Alan Downs’ The Velvet Rage). Such a deep well of shame creates a fertile breeding ground for felt stigma, where the very real danger of discrimination fuses with one’s internal negative beliefs, resulting in a destructive, self-sustaining pattern. The experience of stigma for gay men is often compounded because they have multiple characteristics that are devalued by society: they may be gay, substance abusers, HIV-positive, and disabled. Some are sex workers, some have a diagnosed P os i t i ve lyAwar e .co m NOVe mb e r+ DEC e mb e r 201 2 27 mental illness such as depression, and others may be homeless. There are hierarchies among these stigmatized attributes. For example, many of my clients who have lived with HIV for many years are judgmental of those who are newly infected (“How could they be so stupid? When I was infected we didn’t know any better.”). Others remember when it was common to distinguish between the “innocent victims of AIDS” (acquired through transfusion) versus the not-so-innocent ones (those who must have been recklessly promiscuous). Impact of stigma price not just on those unlucky enough to experience it, but on the shape of the epidemic itself. It impacts access to prevention, testing, and care. One’s willingness (or not) to be tested for HIV is driven by stigma, which accounts for at least a portion of the estimated 20% of people living with the virus who don’t know their status. Stigmadriven fears about being seen entering a testing site keep many away and even with their trusted physicians and health care providers, many people refuse to discuss high-risk sexual behavior that might have resulted in a health concern. For others, there is the belief that HIV is someone else’s problem, which can lead to dangerously high levels of the virus in a given community. This attitude occurs among both individuals and professionals. Many groups employ a denial mechanism, fueled by stigma, that blinds them to their own risks. A recent study found that black MSM (men who have sex with men) are less likely to use a condom with a man who appears very masculine because of a false assumption that such a man couldn’t be HIV-positive. Many men continue to engage in high-risk sex because their partner looks healthy, while believing that those who don’t appear healthy must have HIV. These attitudes exist among professionals as well. When I recently conducted a training for 50 mental health workers 2 8 NOVe m b e r +DEC e mber 201 2 S tigma extracts a heavy For those living with physical signs of HIV, the impact of stigma can be unavoidable. Others with no outward signs find it easier to “pass,” but often become highly attuned to any sign of judgment from others. in a major city with one of the nation’s highest incidences of HIV, I asked how many had clients affected by HIV and only a few hands were raised. That itself is a form of stigma (“my clients or their family members couldn’t have HIV...”) since every one of them no doubt had clients directly affected by HIV. Their denial, discomfort, or prejudice was contributing to the shame and stigma of someone at risk for, or living with, HIV, as well as the quality of their professional care. Stigma has a direct impact on risk behavior. Because of it, people are far less likely to disclose their serostatus. Many gay men have sex without any discussion of HIV, and, ironically, if someone does disclose, they are often rejected. One client, when creating a profile on a social dating site, noted that he was HIV-positive. An obviously attractive man, he was astonished to receive only one response in a period of months. He counted roughly 60 profiles of other gay men in the city, only two of whom disclosed a positive status (a location where it is estimated that 30–40% of the gay men are HIV-positive). The shadow of stigma was present, evident more in what was not stated rather than what was directly expressed. For those living with physical signs of HIV, such as lipoatrophy (loss of fat in the face, limbs, and buttocks), the impact of stigma can be unavoidable. Others with no outward signs find it easier to “pass,” but often become highly attuned to any sign of judgment from others, a process which soon becomes internalized and develops into “felt stigma.” Whether one can “pass” or not, stigma impacts the health of those living with the virus in a number of ways. The perpetual experience of external and internal judgment and shame contributes to chronic stress, which has direct physical consequences. Stigma impacts medication adherence, as well. Many people won’t take their meds in situations with a high potential for stigma, such as a dinner out with colleagues, visiting relatives who make uncomfortable inquiries, or a date with someone who doesn’t yet know one’s serostatus. Gay-on-gay stigma never been without internal divisions and social hierarchies. Many gay men come out expecting to find, at last, acceptance among their peers. Instead, many find a divided subculture rife with cliques and judgments. Now, a more ominous trend is evolving within the gay community: overt stigmatizing of HIV-positive gay men by other gay men. Over the duration of the epidemic, many services have evolved for people living with the virus. For several years, I have heard increasingly vocal complaints from negative men about the abundance of such resources available to HIV-positive men. Fueled by growing stigma, these have recently developed into divisive stereotypes which are reminiscent of the “welfare queen” dialog (in which people are believed to exploit programs and services). They include beliefs that men become HIV-positive simply to enjoy the benefits and spend the day at the beach, or that gay men on disability all drive expensive cars, or that being gay and positive means all the steroids you want and lots of free time for the gym. The notion of someone on disability and medications living the carefree good life is, of course, ludicrous. There are a minority of people who exploit services, but the great majority display a remarkable resilience which is devalued by such comments. Such stereotypes only further stigmatize those living with the virus and divide the community. Evidence of this division among gay men can be seen in the stigmatizing shorthand of profiles on sexual networking sites, and it’s not just limited to positive or negative. “Drug and disease free— NOVe mb e r+ DEC e mb e r 201 2 29 O ur community has Each of us has shadows that make us vulnerable to stigma and fuel our potential to stigmatize others. UB 2.” “Masc only.” “No fats, no femmes.” Some people attempt to temper this harshness by adding “just a preference.” While it is true that everyone has their own sexual template and the right to express themselves sexually with whomever they want, very real harm results from such dismissive comments which reinforce both stigma and the gulf between gay men. I was pleased to see one man address these comments with his own, empowering declaration: “HIV-positive and intend to stay that way!” There are few quantitative data documenting this rift within the gay community, but most people feel it. One organization, men2mencollective.com, is researching this in Europe and Canada. I recently asked the HIV-negative men in a group I lead if they had HIV-positive men within their close social circle. Few hands were raised. I have had the same response with groups of positive men. Very often the majority of their close acquaintances are also positive. It is natural for men to socialize based on affinity. Someone who has been diagnosed with HIV, has disclosed to family and friends with varying consequences, has been taking medication with all the side effects, and perhaps experienced an opportunistic infection, will have a natural alliance with others who share these experiences. They also share the bond of stigma, discrimination, and its consequences, resulting in the tendency to limit social interaction. Many gay men living with HIV utilize substances or behaviors to numb painful feelings brought on by stigma, and they are at much higher risk for addictions, mental disorders, and even suicide. Drugs such as methamphetamine have a particularly dangerous appeal, despite devastating consequences, because they temporarily soothe the effects of stigma: low mood, lack of energy, feeling disconnected, isolated, and sexually unattractive. Stigma creates a perfect storm for those who feel like “damaged goods” to seek a 30 NOVe m b e r +DEC e mber 201 2 way to numb these feelings. Chemicals are not the only negative coping mechanism. Behaviors such as sexual compulsivity also create a numbing effect while pushing the individual toward even greater isolation and despair. Some men attempt to reclaim their power by embracing the very taboo identities that are used to stigmatize them, such as “barebackers” or “slammers.” While this creates a sense of belonging and identity, it also perpetuates higher risk behaviors and, ultimately, stigma itself. Join a group: The act of uniting with others living with HIV is a powerful way to learn self-acceptance and trust. Drawing on their power provides a mirror for one’s own struggles and creates a rich resource of wisdom and support that is invaluable when confronting stigma. Commit to counseling: Every individual has great healing potential, but everyone, at times, needs guidance. Jung described the concept of shadows, those parts of ourselves which are too painful or too unpleasant to acknowledge. Sometimes we handle them by projecting them onto others, such as when someone who has made hateful, stigmatizing pronouncements about gay men is revealed to be struggling with his own gay identity. Each of us has shadows that make us vulnerable to stigma and fuel our potential to stigmatize others. Therapy greatly enhances the healing process, whether it be trauma, limited self-acceptance, or any situation or belief that is causing emotional distress. Connect to others: HIV/AIDS frequently results in profound isolation. Whether related to shame, side effects of medication, energy level, or any number of other concerns, people living with HIV/AIDS can become disconnected from others, thus increasing their vulnerability to stigma as well as limiting their potential to help others. Sometimes these connections are structured (such as “joining a group” mentioned above), but those which are informal are equally valuable. Making a phone call, reaching out to someone in need, or simply having a casual conversation with a friend about nothing in particular can be profoundly healing and grounding. Help others: Most of the services for people living with HIV/AIDS were initially created by individuals taking personal action, not by institutions. The ability to put compassion into action is the basis of countless lifesaving efforts. Personal emotional P os i t iv e lyAwa r e .co m Coping with stigma programs or activities to combat HIV-related stigma is still largely unknown. Most involve change at a personal level, directed either at the person experiencing stigma or the individual perpetrating it. For those who experience stigma, interventions include modifying their critical, internal dialogue of self-doubt as well as their negative assumptions. Programs designed to increase awareness among those who stigmatize have had some benefit, the most powerful being combination approaches. For example, the impact of an HIV-positive speaker “humanizing” HIV is enhanced when followed by an educational component clarifying misconceptions about the virus. Unfortunately, few programs address the structural sources of stigma expressed in laws, policies, and institutional discrimination. Positive coping strategies which move an individual toward healthy empowerment are the most effective tools to address stigma. These involve a variety of methods aimed at reclaiming a healthy sense of self, a feeling of personal power, a shared identity with others, and a solid sense of self-acceptance in the face of painful stigma and discrimination. These range from dealing with specific interpersonal situations to confronting institutional power that enacts, legislates, and perpetuates stigma. Here are a few: T he effectiveness of Stigma is powerful, painful, and often confusing because it resonates with our own internal fears. Overcoming it takes persistence, courage, a strong sense of self, and a willingness to work with others. healing results from assisting someone else. It pulls you out of your own concerns and transforms your struggles and pain into a useful tool both for you and others. Learn from others: Chances are high that someone else has already faced your challenges. There are many people who share your experience and who can serve as role models. When such people are not geographically close, the internet can be an effective resource for communication. Connect with others living with the virus— it will help you all heal. Educate: Stigma about HIV, homosexuality, mental illness, or countless other attributes is fueled by ignorance. People fear what they do not understand and, despite 30 years of crisis, the level of ignorance about HIV is astounding. According to the Washington Post/Kaiser Family Foundation 2012 Survey of Americans on HIV/AIDS, people are somewhat more comfortable interacting with coworkers who have HIV/ AIDS (up from 32% in 1997 to nearly 50%), yet 25% of Americans do not know HIV cannot be transmitted by sharing a drinking glass, almost the same as 1987. Stigma is powerful, painful, and often confusing because it resonates with our own internal fears. Overcoming it takes persistence, courage, a strong sense of self, and a willingness to work with others. Don’t succumb to the false belief that you are “damaged goods,” but rather expose your shadows, reclaim your power, and reach out to others making this journey with you. David Fawcett is a psychotherapist and clinical hypnotherapist in private practice in Fort Lauderdale, Florida. He is active in the gay men’s health movement, writes regularly for TheBody.com, and is a national trainer for the National Association of Social Workers’ “HIV Spectrum Project.” Advocate: Finally, every person living with HIV/AIDS needs to challenge institutional structures that promulgate stigma. There are increasing and disturbing efforts to criminalize HIV, funding for essential services is in peril, and new waves of intolerance are rolling across the country. Stay informed, vote knowledgeably, and increase your advocacy. Are you Aware? Get Positively Aware. ❑ 1-year subscription: $30 donation. Bill to: Card Number Name on Card Signature (required) Expires Six bi-monthly issues every year. Subscriptions are mailed free of charge within the U.S. to those who are HIV-positive. Available free of charge; however, a donation is requested to cover shipping. No international bulk orders. Minimum order 10 copies, shipped via UPS (No P.O. Box addresses): ______ copies ❑ Bulk copies (U.S. only): ❑ Back issues: $3 per copy. Enclosed is my payment. ______ copies: September+October 2012 ______ copies: July+August 2012 ______ copies: May+June 2012 ______ copies: March+April 2012 - 16th annual HIV Drug Guide Charge my: ❑ Visa ❑ MasterCard ❑ American Express total amount: $___________ Charges will appear on your credit card statement as TPA Network. Test Positive Aware Network (TPAN) is a not-for-profit organization dedicated to providing support and information to all people affected by HIV. Ship to: Name Agency (if applicable) Address ❑ Sign me up for the E-News, PA’s weekly email newsletter: email address ❑ Enclosed is my donation of ❑ $25 ❑ $50 ❑ $100 ❑ $250 ❑ $500 ❑ $_______ City State Zip Your contribution helps provide subscriptions to people who can’t afford them. All donations are tax-deductible to the full extent allowed by law. Phone e-mail Mail to: Positively Aware 5537 N. Broadway St. Chicago, IL 60640 Culture club to full community participation and leadership from the inside out and top down. Peter Staley, who was a successful bond trader in New York in the mid-’80s before leaving his job after being diagnosed with AIDS-related complex and given two years to live, is one of the film’s protagonists. Staley was also a founding member of ACT UP, and the splinter group Treatment Action Group (TAG), before eventually going on to found AIDSMeds. com and serve on the board of amfAR. In the film, Staley delivers a powerful speech at the 1990 International AIDS Conference in San Francisco and reaches “across the aisle,” asking researchers and scientists to join the activists and their cause. It was a tipping point not only in the film but also in the epidemic itself. There are many other moments in the movie that stand out, such as when performance artist Ray Navarro, dressed up as Jesus and portraying a news reporter who goes by the name “J.C.,” interviews people outside St. Patrick’s Cathedral in New York, right before the famed 1989 ACT UP protest is set to take place inside. Outside the NIH, a mounted police officer slams his horse into a female protestor and then spins the horse around and starts beating the woman with a club, and I gasped out loud in the theater. At a memorial service in which fellow activists carry their fallen comrade’s coffin in the rain, Bob Rafsky delivers an eloquent eulogy in which he denounces George H.W. Bush on the night before the 1992 election, tearfully ending with “ACT UP, fight back, fight AIDS,” with barely a whisper and his voice cracking— it’s gut-wrenching and emotional. I know and count as friends many of those featured prominently in the film, which makes it even that much more personal for me. But for anyone interested in the history of activism in general, or ACT UP in particular, gay history or the history of HIV/AIDS, civil rights or civil disobedience, or simply in learning about humanity and courage in the face of seemingly insurmountable odds, please see this movie. You will not be disappointed. Go to www.surviveaplague.com. ACTing UP: Peter Staley heads a protest at the FDA. When activism is the prescription How to Survive a Plague is an emotional reminder by Jeff Berry in David France’s documentary film How to Survive a Plague that takes place at an ACT UP (AIDS Coalition to Unleash Power) meeting where co-founder Larry Kramer is to speak. Kramer is seen sitting and watching silently as people in the room bicker back and forth and talk over each other, until suddenly he explodes and shouts at the top of his lungs “PLAGUE! This is a PLAGUE!” He continues admonishing everyone until a hush falls over the room and you could hear a pin drop. It was all I could do to hold myself together and not break down in the darkly lit theater. I felt his anger, his rage, and it came from within myself. 32 NOVe m b e r +DEC e mber 201 2 T here is a pivotal scene This is a film that is far more than it ever set out to be, a movie that sits back and allows the spectacular footage from the early era of the epidemic and AIDS activism to take center stage and simply speak for itself. I was transfixed from the moment the screen lit up, as well as being transported back in time. There is a great deal I learned about activism in general and ACT UP’s history in particular that I never knew—it’s fascinating stuff, and makes for intriguing drama. But the film is more than just a history lesson—it shows how, amid desperation and devastation, a movement grew that forever changed how drugs in this country are developed, how policies are created, and how a demand for change from “outsiders” eventually led P os it iv e lyAwa r e .co m Photo courtesy david france New STRIBILD is here One pill contains elvitegravir, cobicistat, emtricitabine, and tenofovir disoproxil fumarate. Ask your healthcare provider if it is right for you, or visit STRIBILD.com to learn more. Please see Patient Information with important warnings on the following pages. Patient Information STRIBILDTM (STRY-bild) (elvitegravir, cobicistat, emtricitabine, and tenofovir disoproxil fumarate) Tablets Important: Ask your healthcare provider or pharmacist about medicines that should not be taken with STRIBILD. For more information, see the section “What should I tell my healthcare provider before taking STRIBILD?” Read this Patient Information before you start taking STRIBILD and each time you get a refill. There may be new information. This information does not take the place of talking with your healthcare provider about your medical condition or treatment. What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take STRIBILD or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: • feel very weak or tired • have unusual (not normal) muscle pain • have trouble breathing • have stomach pain with - nausea - vomiting • feel cold, especially in your arms and legs • feel dizzy or lightheaded • have a fast or irregular heartbeat 2. Severe liver problems. Severe liver problems can happen in people who take STRIBILD. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: • your skin or the white part of your eyes turns yellow (jaundice) • dark “tea-colored” urine • light-colored bowel movements (stools) • loss of appetite for several days or longer • nausea • stomach pain You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. 3. Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take STRIBILD, your HBV may get worse (flare-up) if you stop taking STRIBILD. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. • Do not run out of STRIBILD. Refill your prescription or talk to your healthcare provider before your STRIBILD is all gone. • Do not stop taking STRIBILD without first talking to your healthcare provider. • If you stop taking STRIBILD, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking STRIBILD. For more information about side effects, see the section “What are the possible side effects of STRIBILD?” What is STRIBILD? STRIBILD is a prescription medicine that is used without other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) in adults who have never taken HIV-1 medicines before. HIV-1 is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). STRIBILD contains the prescription medicines elvitegravir, cobicistat, emtricitabine (EMTRIVA®) and tenofovir disoproxil fumarate (VIREAD®). It is not known if STRIBILD is safe and effective in children under 18 years of age. When used to treat HIV-1 infection, STRIBILD may: • Reduce the amount of HIV-1 in your blood. This is called “viral load”. • Increase the number of CD4+ (T) cells in your blood that help fight off other infections. • Reduce the amount of HIV-1 and increasing the CD4+ (T) cells in your blood may help improve your immune system. This may reduce your risk of death or getting infections that can happen when your immune system is weak (opportunistic infections). STRIBILD does not cure HIV-1 infections or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. Avoid doing things that can spread HIV-1 infection to others. • Do not share or re-use needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. • Do not have any kind of sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. Ask your healthcare provider if you have any questions about how to prevent passing HIV-1 to other people. Who should not take STRIBILD? Do not take STRIBILD if you also take a medicine that contains: • alfuzosin hydrochloride (UROXATRAL®) • cisapride (PROPULSID®, PROPULSID QUICKSOLV®) • ergot-containing medicines, including: - dihydroergotamine mesylate (D.H.E. 45®, MIGRANAL®) - ergotamine tartrate (CAFERGOT®, MIGERGOT®, ERGOSTAT®, MEDIHALER ERGOTAMINE®, WIGRAINE®, WIGRETTES®) - methylergonovine maleate (ERGOTRATE®, METHERGINE®) • lovastatin (ADVICOR®, ALTOPREV®, MEVACOR®) • oral midazolam • pimozide (ORAP®) • rifampin (RIFADIN®, RIFAMATE®, RIFATER®, RIMACTANE®) • sildenafil (REVATIO®), when used for treating the lung problem, pulmonary arterial hypertension (PAH) • simvastatin (SIMCOR®, VYTORIN®, ZOCOR®) • triazolam (HALCION®) • St. John’s wort (Hypericum perforatum) or a product that contains St. John’s wort What should I tell my healthcare provider before taking STRIBILD? Before taking STRIBILD, tell your healthcare provider if you: • have liver problems including hepatitis B infection • have kidney problems • have bone problems • have any other medical conditions • are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. Pregnancy Registry. There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry. • are breastfeeding or plan to breastfeed. Do not breastfeed if you take STRIBILD. - You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. - Two of the medicines in STRIBILD can pass to your baby in your breast milk. It is not known if the other medicines in STRIBILD can pass into your breast milk. Talk with your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. You should not take STRIBILD if you also take: • any other medicines to treat HIV-1 infection • other medicines that contain tenofovir (ATRIPLA®, COMPLERA®, VIREAD®, TRUVADA®) • other medicines that contain emtricitabine or lamivudine (COMBIVIR®, EMTRIVA®, EPIVIR® or EPIVIR-HBV®, EPZICOM®, TRIZIVIR®) • adefovir (HEPSERA®) Especially tell your healthcare provider if you take: • hormone-based contraceptives (birth control pills and patches) • an antacid medicine that contains aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or after you take STRIBILD. • medicines to treat depression • medicines to prevent organ transplant rejection • medicines to treat high blood pressure • any of the following medicines: - amiodarone (CORDARONE®, PACERONE®) - atorvastatin (LIPITOR®, CADUET®) - bepridil hydrochloric (VASCOR®, BEPADIN®) - bosentan (TRACLEER®) - buspirone - carbamazepine (CARBATROL®, EPITOL®, EQUETRO®, TEGRETO®) - clarithromycin (BIAXIN®, PREVPAC®) - clonazepam (KLONOPIN®) - clorazepate (GEN-XENE®, TRANXENE®) - colchicine (COLCRYS®) - medicines that contain dexamethasone - diazepam (VALIUM®) - digoxin (LANOXIN®) - disopyramide (NORPACE®) - estazolam - ethosuximide (ZARONTIN®) - flecainide (TAMBOCOR®) - flurazepam - fluticasone (FLOVENT®, FLONASE®, FLOVENT® DISKUS, FLOVENT® HFA, VERAMYST®) - itraconazole (SPORANOX®) - ketoconazole (NIZORAL®) - lidocaine (XYLOCAINE®) - mexiletine - oxcarbazepine (TRILEPTAL®) - perphenazine - phenobarbital (LUMINAL®) - phenytoin (DILANTIN®, PHENYTEK®) - propafenone (RYTHMOL®) - quinidine (NEUDEXTA®) - rifabutin (MYCOBUTIN®) - rifapentine (PRIFTIN®) - risperidone (RISPERDAL®, RISPERDAL CONSTA®) - salmeterol (SEREVENT®) or salmeterol when taken in combination with fluticasone (ADVAIR DISKUS®, ADVAIR HFA®) - sildenafil (VIAGRA®), tadalafil (CIALIS®) or vardenafil (LEVITRA®, STAXYN®), for the treatment of erectile dysfunction (ED). If you get dizzy or faint (low blood pressure), have vision changes or have an erection that last longer than 4 hours, call your healthcare provider or get medical help right away. - tadalafil (ADCIRCA®), for the treatment of pulmonary arterial hypertension - telithromycin (KETEK®) - thioridazine - voriconazole (VFEND®) - warfarin (COUMADIN®, JANTOVEN®) - zolpidem (AMBIEN®, EDLULAR®, INTERMEZZO®, ZOLPIMIST®) Ask your healthcare provider or pharmacist if you are not sure if your medicine is one that is listed above. Do not start any new medicines while you are taking STRIBILD without first talking with your healthcare provider or pharmacist. Know the medicines you take. Keep a list of your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. How should I take STRIBILD? • Take STRIBILD exactly as your healthcare provider tells you to take it. STRIBILD is taken by itself (not with other antiretroviral medicines) to treat HIV-1 infection. • STRIBILD is usually taken 1 time each day. • Take STRIBILD with food. • Do not change your dose or stop taking STRIBILD without first talking with your healthcare provider. Stay under a healthcare provider’s care when taking STRIBILD. • Do not miss a dose of STRIBILD. If you miss a dose of STRIBILD, take the missed dose as soon as you remember. If it is almost time for your next dose of STRIBILD, do not take the missed dose. Take the next dose of STRIBILD at your regular time. Do not take 2 doses at the same time to make up for a missed dose. • If you take too much STRIBILD, call your healthcare provider or go to the nearest hospital emergency room right away. • When your STRIBILD supply starts to run low, get more from your healthcare provider or pharmacy. This is very important because the amount of virus in your blood may increase if the medicine is stopped for even a short time. The virus may develop resistance to STRIBILD and become harder to treat. What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects, including: • See “What is the most important information I should know about STRIBILD?” • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking STRIBILD. Your healthcare provider may tell you to stop taking STRIBILD if you develop new or worse kidney problems. • Bone problems can happen in some people who take STRIBILD. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people who take HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms and face may also happen. The exact cause and long-term health effects of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine. The most common side effects of STRIBILD include: • nausea • diarrhea Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of STRIBILD. For more information, ask your healthcare provider or pharmacist. Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. How should I store STRIBILD? • Store STRIBILD at room temperature between 68°F to 77°F (20°C to 25°C). • Keep STRIBILD in its original container. • Keep the container tightly closed. • Do not use STRIBILD if the seal over the bottle opening is broken or missing. Keep STRIBILD and all medicines out of reach of children. General information about STRIBILD. Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use STRIBILD for a condition for which it was not prescribed. Do not give STRIBILD to other people, even if they have the same symptoms you have. It may harm them. This leaflet summarizes the most important information about STRIBILD. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about STRIBILD that is written for health professionals. For more information, call 1-800-445-3235 or go to www.STRIBILD.com. What are the ingredients in STRIBILD? Active ingredients: elvitegravir, cobicistat, emtricitabine, and tenofovir disoproxil fumarate Inactive ingredients: lactose monohydrate, microcrystalline cellulose, silicon dioxide, croscarmellose sodium, hydroxypropyl cellulose, sodium lauryl sulfate, and magnesium stearate. The tablets are film-coated with a coating material containing indigo carmine (FD&C blue #2) aluminum lake, polyethylene glycol, polyvinyl alcohol, talc, titanium dioxide, and yellow iron oxide. This Patient Information has been approved by the U.S. Food and Drug Administration. Manufactured and distributed by: Gilead Sciences, Inc. Foster City, CA 94404 Issued: August 2012 COMPLERA, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, the STRIBILD logo, TRUVADA, and VIREAD are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. © 2012 Gilead Sciences, Inc. All rights reserved. QC14408 09/12 A DAY WITH HIV 2012 To view more photos go to www.ADayWithHIV.com 6:00 AM: Chicago. Hospital Corpsman Second Class Le’Mikas Lavender, U.S Navy: Getting ready to man the watch. B egun in 2010 as “A Day with HIV in America,” Positively Aware’s photo campaign focused on stigma in the U.S. From the start, however, there were photo submissions that made us realize that people everywhere are dealing with HIV with the same hope and determination. A Day with HIV is about breaking down boundaries—between positive and negative, straight and gay. It only made sense to transcend national borders, too. Utilizing social media, A Day with HIV spread the word: Grab your digital camera or smartphone, capture a moment of your day on Sept. 21, and share your story with the world. Nearly 175 photos were taken that day. In addition to the U.S., pictures came from Australia, Brazil, Canada, England, Germany, New Zealand, Scotland, South Africa, Uruguay, and the island of Cyprus. 36 NOVe mb e r +DEC e mber 201 2 In fact, the first photo arrived via email, less than 90 minutes into A Day with HIV (Chicago time) from Ji Wallace, the Australian Olympic athlete who had only recently come out as HIV-positive. What makes so many of the pictures taken on A Day with HIV so powerful are the words that illustrate the images. It’s the story behind the photo that makes the image so compelling. For a young man in Kansas, the words “A Day with HIV” are all too literal: he has just tested positive. But he’s already begun educating himself about what he needs to know and is about to begin treatment; he’s actually more concerned about easing his mother’s worries for his health. In his picture, the only thing visible is his t-shirt, bearing the words: “I am awesome.” We might come from different places, different walks of life, but on Sept. 21, we saw that people are the same. They have A DAY WITH HIV hope, determination, and dignity. That’s A Day with HIV. Go to adaywithhiv.com to view this + year’s photo submissions. Select pictures will be published in a limited edition photo booklet to be released for World AIDS Day, Dec. 1, and available on the web site. P os it iv e lyAwa r e .co m 8:30 AM: Norton, Ohio. Michael Vatilla: “Every day, I swallow hundreds of dollars of medication that, without help from governmentassisted drug programs, I would not be able to afford. I know there are others not so fortunate. Something needs to be done to make meds more accessible to everyone.” 8:00 AM: San Francisco. Dennis 10:15 AM: San Francisco. David Duran practices his daddy skills with his best friend’s son at the beach. “Today is just like any other day. I’m living my life and enjoying spending time with my loved ones. One day soon, I hope to have a child, and raise him or her in a world without HIV or the stigma that surrounds it.” Vaughn, who is HIVpositive, gets his day started with his service dog Buster Bear. Says Dennis, “Having Buster is essential. He gets me out of the house and reminds me to play as well.” 7:30 AM: Houston, Texas. Robert W.: “My morning pill, which 7:58 AM: Chicago. Kevin Irvine: “Dropping my daughter off at I’m taking as part of a clinical trial. Each day I remember the people school. She loves first grade, but not smiling on cue for a picture! who went before me, took experimental drugs, knocked on the When I came to terms with having HIV 23 years ago, I thought I White House door, and called attention to those pushed aside.” would never have the chance to be a dad.” P os i t i ve lyAwar e .co m NOVe mb e r+ DEC e mb e r 201 2 37 A DAY WITH HIV 2012 To view more photos go to www.ADayWithHIV.com 10:15 AM: Los Angeles. For the employees of AIDS Project Los Angeles (APLA), every day is A Day with HIV. “Our job descriptions are so varied, it would take forever to list them all. But at the end of the day, all of us have chosen to dedicate our days to the fight against HIV. This is a photo of us taken in front of the APLA’s headquarters, wearing our Team APLA shirts that we wear every Friday in support of AIDS Walk Los Angeles.” (Photo by Kristen Hellwig.) 10:00 AM: Memphis, Tennessee. Marvell Terry: “Teaching others to be engaged in the community and join in the fight in Memphis.” 11:30 PM: St. Louis, Missouri. YouTube blogger Aaron Laxton takes a photo while making a video that will be posted on “My HIV Journey” at www.youtube.com/laxtona. His videos regarding his life with HIV began four days after diagnosis on June 6, 2011. 10:20 AM: New York City. Doug Collins, 45, photographed at Rosh Hashanah services: “I’ve David Shuler: “My photo been positive for two was taken while hiking in years. I have participated the Snowbird Wilderness in AIDSWALK NY with Area of the Great Smoky GMHC, as well as being 10:30 AM: Palm Springs, California. It’s not Mountains, in western televised speaking at just our job to take care of HIV patients; it’s a priviNorth Carolina. I find hikCity Hall. I’m out to all of lege to be part of an extended family. We are the ing very therapeutic and my friends and family. Walgreens on-site HIV specialty pharmacy located relaxing, so I’m often in the I’m happier and healthier inside the Desert AIDS Project. woods, hiking the trails.” than ever in my life.” 38 N OVe mb e r +DEC e mber 201 2 P os it iv e lyAwa r e .co m 10:30 AM: Robbinsville, North Carolina. 11:15 AM: Philadelphia. Rev. Andrena Ingram: 12:15 PM: Eugene, Oregon. Dotti Smith: “Twenty-plus years positive and happy. Peace!” “I am a religious leader living openly with HIV. I engage the streets in my HIV shirt at least once a month. Afterward, I have coffee with my daughter, BruShonna Law.” 1:00 PM: Boston. 11:00 AM: New York City. Jack Mackeknroth: “Just before my swim workout with Team New York Aquatics. I have been on the team for 21 years— almost as long as I’ve been HIV-positive. It’s been a great support network for me. I swim competitively because training keeps me physically and mentally strong, which only augments my healthy lifestyle and helps me manage my HIV. Back in the ’80s, people were scared that you could get AIDS from swimming in the same pool with an HIV-positive person. We’ve come a long way.” AIDS Clinical Trials Group reseachers and operations staff review their application for continued funding as a NIAID Clinical Research Network on Therapeutics for HIV/AIDS and HIVassociated Infections in Adults. 1:30 PM: Kansas. “My story started on 9/21/2012. 1:30 PM: Chicago. Cynthia Holmes: “This is me at my day job as a phone counselor in Chicago, helping people through crises and connecting them to support services. I am HIV-negative, and believe in fighting the disease, promoting prevention, and supporting those affected. I did HIV education in South Africa, safe sex education in online chat rooms, and volunteer with queer at-risk youth. I want to help!” P os i t i ve lyAwar e .co m The attached photo is the t-shirt I wore to get my positive HIV test results. I happened to receive a copy of PA when I stopped at the specialist’s office after the diagnosis and thought I’d contribute. I had pretty well prepared myself since coming out in 1991, but when I had them bring my mom into the exam room, I was pretty terrified and crying—not for myself, but for her. She cried a bit, too, but she has been great so far, as has the rest of my family. I have a great job, and my family is so supportive of me. I’m very fortunate in those aspects.” 12:15 PM: Valley Stream, New York. Nancy Duncan: “I went in to New York to see How to Survive a Plague at the IFC Center. Washington Square, one of my favorite parks in the city, was right across the street, so I decided this was a good time to take a pic of myself.” NOVe mb e r+ DEC e mb e r 201 2 39 A DAY WITH HIV 2012 To view more photos go to www.ADayWithHIV.com 2:45 PM: Queenstown, New Zealand. Australian Olympic medalist Ji Wallace: “This photo was taken during some down time while we are on a work trip. I am with my boyfriend, Shaun Baldwin. Queenstown is known as the adrenaline capital of the southern hemisphere so we decided to go up the mountain on the gondolas for mountain luging. I won. In the picture, I am on the left and I am positive. We live in a loving, happy, and healthy serodiscordant relationship.” 2:30 PM: New York City. Gustavo Gimenez: “I work in an allergy lab. At today’s meeting, we went over a case presentation of a patient with a complicated drug allergy. Unfortunately, his treatment options were further complicated because he had vertically transmitted HIV. I wanted to show in this picture that this anonymous case became personal, and that it struck a nerve. While I may never know who this patient is, I would like to wish him the best and show that I care.” 3:30 PM: London. Richard Sawdon 3:00 PM: Beckemeyer, Illinois. Sharon Maxwell: “My wonderful companion Missy, who loves me in spite of everything.” 40 NOVe m b e r +DEC e mber 201 2 Smith: Self-portrait as Robert Mapplethorpe. “As a photographer living with HIV and benefiting from the availability of medication, I wanted to take the time to reflect on those who were not so lucky and the senseless loss of life we have witnessed.” 3:00 PM: Myrtle Beach, South Carolina. Debra Fehr: “My HIV-negative partner Victor and me, enjoying a beautiful day in our front yard! We’ve been together eight years. It just keeps getting better!” P os i t iv e lyAwa r e .co m 3:30 PM: Cape Town, South Africa. The staff of the Desmond Tutu HIV Foundation, who are work- ing hard on a microbicide trial, take time to celebrate cultural diversity at an event honoring the volunteers who take part in clinical trials. 5:00 PM: Midland, Pennsylvania. David 4:00 PM: Mountlake Terrace, Washington. Ian and 4:30 PM: Sioux City, Iowa. Jamie shows Courtney and Doreen how to correctly use the FC2 female condom using a female pelvic model at the Siouxland Community Health Center in Iowa. Siouxland is a one-stop shop with HIV and HCV testing. The FC2 has had a big impact on prevention in the community. Adkins: “This is the new tattoo I got today for A Day with HIV. It was done at West Coast Tattoo in East Liverpool, Ohio by Matt Backus. I am the Director of a volunteer-run HIV/AIDS service organization called Project HOPE of Beaver County. Bran LeFae: “We are selfemployed artists and wanted to make an image that could help fight the stigma that still surrounds HIV and AIDS. We’re lucky to work together each day. We hope that by standing in solidarity across the globe, we can find real solutions to a disease that continues to be such a challenge for so many communities.” 4:00 PM: Maryville, Tennessee. Greg 5:45 PM: Belo Horizonte, Brazil . Jeferson Carvalho: “An AIDS program Knepper, former TPAN volunteer, on the grounds of St. Andrew’s Episcopal Church. P os i t i ve lyAwar e .co m in my country sponsored a contest promoting awareness. We created a panel depicting love between a serodiscordant couple.” NOVe mb e r+ DEC e mb e r 201 2 41 A DAY WITH HIV 2012 To view more photos go to www.ADayWithHIV.com 5:15 PM: New York City. Lee Raines: “Under the How to Survive a Plague marquee at the IFC Center in New York City with my friends Rita and Jeff. I’m the guy wearing the ‘HIV POSITIVE’ t-shirt. With gratitude to my comrades, my sisters and brothers in ACT UP, and the AIDS activist movement, who taught me how to survive a plague.” 8:00 PM: Vacaville, California. Amanda Proctor: “This is Phillip. He is nearly three years old and was born HIV-positive. He has been undetectable for a year and a half.” 6:30 PM: East Kilbride, Scotland. John Shields: “Freezing my butt off in my garden.” 6:00 PM: near Index, Washington. Up in 11:00 PM: Lake Charles, Louisiana. Thomas Huseby: “I’m the Treatment Adherence Case Manager at the Comprehensive Care Clinic at Moss Regional Hospital in Lake Charles, Louisiana. Today, I met with 49 McNeese University undergraduate nursing students. They presented their findings for improving the health and well-being of those infected, affected, and at risk of HIV/AIDS in Southwest Louisiana. Let’s Make A Deal: AIDS Style.” 42 N OVe mb e r +DEC e mber 201 2 the Cascade Mountains, along the North Fork of the Skykomish River, Rick Dunwiddie, a 28-year survivor of HIV/AIDS, is fishing for steelhead and trout. But today, only a small rainbow was caught and released in celebration of A Day with HIV. P os it iv e lyAwa r e .co m 8:45 PM: Nashville , Tennessee. Cassondra Webb: “My niece Dallas’ 18th birthday dinner with the family. This is her girlfriend, Cici, putting on the lock and key necklace she got Dallas. Dallas organized an Equality Walk for her senior project and donated proceeds to Chattanooga Cares. I am in awe of this girl who wants to provide therapy to gay and to HIV at-risk youth who will struggle with the things she’s already struggled with.” 9:45 PM: Bradenton, Florida. Mike Trauth: “My daughter and me at dinner for my stepdaughter’s birthday. My wife and I are both positive, but my daughter is negative. She is just 13 months old.” 11:30 PM: Laurel, Maryland. Justin B. Terry-Smith (right): “When I found out I was HIVpositive, I thought I wouldn’t have any children and it destroyed me. Yesterday, my husband Phillip and I were approved for foster/adoption of two children. We currently have one foster care LGBT teen. For my husband and my foster son, I stay healthy and take my meds.” P os i t i ve lyAwar e .co m 10:00 PM: Miami. My name is Maria Mejia. I am a social media activist who has been HIV-positive for 23 years. I’m also an Hispanic lesbian from Colombia living in Miami. I am pictured with my partner/wife of five years, Lisa Laing. She is my rock and number one supporter, and is HIV-negative. She gives me the love and support that I think is so important for people with HIV. In our picture, you can see the love we have for each other is very intense and very spiritual. We are one and in this together ’til the end. 11:51 PM: Santa Rosa, California. Ayrick Broin: “Can’t sleep at night. Let’s do some more tests!” NOVe mb e r+ DEC e mb e r 201 2 4 3 A DAY WITH HIV 2012 To view more photos go to www.ADayWithHIV.com Four covers, four stories The four photos that made it to the cover—and the stories behind them. 8:15 AM: Ankeny, Iowa. Brian Walker: “David was born three and a half months premature, weighing two pounds with an HIV viral load of 525,000. Yes, he is a MIRACLE. He was separated from three siblings who were negative. Their adoptive family didn’t want David, because he was positive. His picture says it all. At three years old, he is my HERO. He now has a viral load of 54, and the spirit of an angel. I was chosen to be his Daddy!” 11:00 AM: London, England. Garry Brough: 11:00 AM: Virginia. Melissa: 2:00 PM: New York City. “I’m the admin/moderator for the UK’s largest network of people with HIV—myHIV.org. uk. Having lived with HIV for over 20 years, I am proud to wear the t-shirt. Every day is a day with HIV, in both my work and personal life. Mostly, they are good days with HIV these days, thankfully.” “Pop my morning Isentress (raltegravir) and head up to the mountains to pick my angel’s first apples. Just another day with HIV.” The MISTER team encourages users of their site and app to communicate their safe sex strategy and treat each other with respect and an open mind—including members who are HIV-positive. CEO Carl Sandler says, “We must ask ourselves how we are perpetuating ignorance and shame in our community, regardless of our HIV status, through the actions we take and the decisions we make around dating and sex.” Meet the judges The panel that helped select our covers for A Day with HIV. Sheryl Lee Ralph Chuck Panozzo Diego Sanchez originated the role of Deena Jones on Broadway in Dreamgirls, for which she was nominated for a Tony Award. She has gone on to appear on stage, in films, and on TV. A passionate AIDS activist, Ralph founded the Divinely Inspired Victoriously Aware (DIVA) Foundation. “Driving Infectious Viruses Away” is their mission, with HIV testing, erasing stigma, and decreasing the HIV infection rate among women, girls, and young people. 44 NOVe m b e r +DEC e mber 201 2 is a founding member and bass player for the band Styx. Chuck came out to the world as gay and HIV-positive during a Human Rights Campaign dinner before 1,000 guests. Diagnosed in 1991, his journey has led him to join clinical studies, deal with side effects, and survive cancer, while continuing to perform. His dedication to equal rights and HIV/AIDS advocacy is a constant. Says Chuck, “My wish is to inspire others, gay or straight, to live a proud just life.” is the first openly transgender person to work on Capitol Hill. He is Senior Legislative Advisor to Congressman Barney Frank of Massachusetts. He was also the first transgender person to be appointed in 2008 to the DNC Platform Committee, where he got a national AIDS strategy adopted. Frank told The Hill what he saw in Sanchez: “a passion for the policy and, precisely because of that, a commitment to getting it done in the best way possible.” P os it iv e lyAwa r e .co m The health care question After the November election, what happens next? By David Ernesto Munar The outcome of the November 6, 2012 presidential election will mean big changes for all health care consumers— including people living with HIV/AIDS—no matter who wins the White House. A comparison of the candidates’ positions on health care follows. Photo @ Eduardo Leite G Romney overnor Mitt Romney, the Republican nominee, has pledged to issue an executive order on his first day in office to halt any further implementation of the Patient Protection and Affordable Care Act’s (ACA) sweeping health care policy reforms and seek a full repeal of the P os i t i ve lyAwar e .co m law. Despite leading efforts as governor of Massachusetts to adopt a similar set of measures that inspired the ACA (see “RomneyCare and HIV/AIDS” on page 47), Romney says the prescription for the uninsured should be decided by each state and not the federal government. would ensure coverage for individuals with pre-existing conditions who maintain continuous coverage. His plan does not include routes to credible coverage for uninsured individuals with pre-existing conditions. In a CBS News’ 60 Minutes interview that aired on September 23, Romney pointed to emergency rooms as a form of health care for people without insurance. Private insurance reform: Romney supports legislation to offer tax breaks to purchasers of individual health insurance coverage so they receive the same tax breaks as individuals with employer-based NOVe mb e r+ DEC e mb e r 201 2 4 5 Pre-existing conditions: Romney’s plan The ACA is a lightning rod issue for many voters, both for and against. How might the law help people with and at risk of HIV? group insurance. Romney also advocates multi-state insurance products to help control the cost of insurance premiums. Other reforms, such as provisions to allow children to remain on their parents’ plans into early adulthood, would be left to the states to decide. loosely modeled on a health care plan in Massachusetts enacted by then-Governor Romney. This fact notwithstanding, candidate Romney supports the Massachusetts plan but disavows the ACA and pledges to repeal it if elected president (see above). How the Massachusetts plan impacts its HIV-positive residents is one way to assess the potential impact of the ACA on the nation’s ongoing AIDS fight (see following article, “Romneycare and HIV/AIDS”). mandate” requiring Americans to carry health insurance coverage was recently upheld by the U.S. Supreme Court. People and small businesses who fail to comply with the requirement will be assessed a federal tax penalty. The exchange will help U.S. citizens and some legal residents with annual incomes above $11,170 (or $23,050 for a family of four)* to shop for and purchase private health insurance. Eligible individuals with incomes up to $44,680 (or $92,200 for a family of four) will be provided a federal subsidy to help offset the cost of mandated insurance coverage. Out-of-pocket health care costs are capped by the ACA to prevent health care-related bankruptcies that all too often occur after an injury or catastrophic illness. Other ACA reforms include guaranteed coverage without co-pays for preventative health care, including HIV testing and contraception for women, a provision that went into effect recently. Medicaid: Romney supports block grants for states to implement Medicaid, the federal and state health insurance programs for the poor, disabled, and elderly. Growth in the federal Medicaid grants would be capped at the rate of inflation plus 1%. While the per capita growth in spending is 2.1% lower in Medicaid than in private plans, Medicaid growth has remained higher than inflation. With an aging Baby Boomer generation, long-term care and other care needs in Medicaid are likely to raise Medicaid spending even higher. Pre-existing conditions: Under the ACA, the cost of private insurance premiums will be based solely on the individual’s age, geographic location, and tobacco use. Exclusions for pre-existing conditions will be outlawed beginning in 2014. The Pre-Existing Condition Insurance Plan (PCIP) is a program created by the Affordable Care Act to help provide coverage for uninsured people with pre-existing conditions until new insurance market rules go into effect in 2014. The PCIP, which is administered by either individual states or the U.S. Department of Health and Human Services, will provide health insurance coverage for U.S. citizens or legal residents who have been uninsured for at least six months, have a pre-existing condition, or have been denied health coverage because of their health condition. There are no income thresholds required for pre-existing condition coverage and premium rates, as well as deductibles, vary in each state. Medicare: Romney’s repeal of the ACA would restore the large “donut hole” in Medicare prescription drug coverage and his campaign has yet to announce how, or if, it would address this added cost to Medicare beneficiaries. His Medicare plan would convert the program to a voucher system, providing beneficiaries with a fixed dollar amount to purchase private coverage. The proposal would not affect current retirees or those nearing retirement but be established for future retirees. Medicaid: The Supreme Court affirmed the constitutionality of the ACA and kept virtually all its provisions intact. While upholding the Medicaid expansion, a central provision to cover low-income citizens, the Supreme Court ruled that the federal government could not withhold all of a state’s Medicaid funding in order to enforce the expansion provision, as was previously stated in the law. The Court ruled that only new funding available for the expansion can be withheld as a penalty for failure to expand Medicaid eligibility. Facing a less severe penalty, 15 states have already announced intentions to not expand Medicaid as required by the ACA and 22 more are undecided. States that elect the expansion will receive federal funds to offset 100% of their new costs in 2014-2016, dropping to 90% by 2020. The law will make Medicaid P os i t iv e lyAwa r e .co m P Obama resident Obama, the Private insurance reform: Also in 2014, every state will have a “health insurance exchange,” which is an online marketplace that allows individuals and small businesses to compare and purchase health insurance plans. Either the state government or the federal government will run the exchange in each state. The hotly contested “individual Democratic nominee seeking a second term, ushered passage of the federal health reform law in 2010. The law’s most significant provisions go into effect in January 2014. Sustaining implementation of the ACA is at the core of his second-term agenda. In a twist of political irony, the ACA is 46 NOVe m b e r +DEC e mber 201 2 RomneyCare and HIV/AIDS A look at Massachusetts offers insight on national health care reform an insurance program for low-income Americans with incomes up to $15,420 ($31,812 for a family of four), regardless of health status. Medicaid provider payment rates will also rise to match Medicare rates for a two-year period beginning in 2013, which should expand the number of medical providers willing to accept Medicaid coverage. Medicare: Under the ACA, the so-called “donut hole” in Medicare prescription drug coverage shrinks over time. As a source of revenue to pay for its many new provisions, the ACA reduces incentives to health insurance companies to offer Medicare Advantage plans. The reduced incentives are not expected to affect Medicare benefits. The ACA is a lightning rod issue for many voters, both for and against. How might the law help people with and at risk of HIV, if fully implemented? Are we better off halting implementation and starting over with Romney’s plans for the nation? The answers to these questions are critical for everyone committed to the fight against HIV/AIDS as we head to the polls in November. I Illustration @ Brandon Laufenberg t’s hard to imagine how the * Income eligibility amounts cited reflect current threshold amounts published in the 2012 HHS Poverty Guidelines. The Census Bureau updates poverty threshold amounts annually. federal health reform law, known as the ACA, will work for people living with HIV/AIDS once it is fully implemented in 2014. Because the framework of the ACA is loosely based on health care reform in Massachusetts, a review of that state’s system can help HIV/AIDS advocates understand how the national law might affect people with HIV nationwide. David Ernesto Munar is president/ Massachusetts reforms Long before health reform dominated national headlines, officials in Massachusetts were working on strategies to reduce the number of uninsured in the state. Here’s a quick recap. CEO of the AIDS Foundation of Chicago (AFC) and an HIV-positive advocate. Working with other AIDS advocacy organizations across the country, AFC hosts HIVhealthreform.org, an educational website on health reform policy geared toward people affected by HIV/AIDS, their organizations and advocates. P os i t i ve lyAwar e .co m allowing Medicaid expansion to non-disabled poor residents living with HIV. The state combined federal resources with state appropriations to offer a comprehensive benefit package to all uninsured state residents living with HIV at or below 200% of Federal Poverty Level (FPL). With health insurance provided by Medicaid to most HIV-positive uninsured residents, the state used federal Ryan White Program grants to provide wraparound support services to help connect and sustain people in care. The state’s AIDS Drug Assistance Program (ADAP) shifted its focus from dispensing HIV medication to predominately providing premium and co-pay assistance for people living with HIV. 2001: Massachusetts was the first state in the nation to implement a federal waiver 2006: Governor Romney signed reforms into law, including: NOVe mb e r+ DEC e mb e r 201 2 47 Massachusetts vs. the U.S. Comparing results of two health care systems In medical care Taking HIV medications Virally suppressed 99% 41% 90% 36% 72% 28% GETTING ENGAGED IN HIV CARE 1,178,350 people living in the U.S. are HIV-positive... know that they are HIV-positive 80% 61% 41% 36% 28% are linked to care are retained in HIV care are on ART have a viral load less than 200 HIV treatments they need. The stages-of-engagement methodology is a useful performance metric to gauge how well or poorly systems achieve clinical engagement for HIV-positive populations. Given how similar the ACA is to RomneyCare, the Massachusetts analysis may forecast what outcomes might be possible under the ACA. n n n n n A mandate for all state residents to carry health insurance coverage Development of the first state insurance exchange that certifies plans with comprehensive benefits without preexisting condition exclusions Medicaid expansion to cover all uninsured residents with incomes up to $22,340 (200% of FPL) Development of a comprehensive Medicaid benefits package State subsidies to help people with income between 200% and 300% of FPL purchase private insurance I The Case for national reform: stages of engagement in HIV care n 2011, Dr. Edward Gardner “Massachusetts serves as an excellent example of how properly implemented health reforms can substantially improve health outcomes for those living with HIV,” said Robert Greenwald, Clinical Professor of Law and Director of the Center for Health Law and Policy Innovation at Harvard Law School. 48 NOVe mb e r +DEC e mber 201 2 and colleagues published a compelling analysis demonstrating severe gaps in care for people with HIV/ AIDS in the U.S. The Centers for Disease Control and Prevention (CDC) published its own analysis in December 2011. Much like Gardner’s original paper, CDC’s “States of Engagement in HIV Care” reports sizeable gaps in linking and retaining people diagnosed with HIV to continuous clinical care and treatments. The CDC found that only 28% of people living with HIV in the U.S. achieve the viral suppression needed to improve their longevity and reduce HIV transmission risk to others. Moreover, only 51% of people diagnosed with HIV are retained in continuous clinical care, which results in lower numbers of people gaining access to the Ahead of the curve reforms, health systems in Massachusetts are achieving remarkable results for HIVpositive residents that far exceed national outcomes. According to recent Massachusetts state health department data on the state’s HIV-positive population analyzed by Harvard Law School, by every metric, Massachusetts outperforms the national average by more than two to one. P os it iv e lyAwa r e .co m A fter a decade of Icons © imgendesign HIV DIAGNOSES and DEATHS Massachusetts HIV HOSPITAL COSTS fiscal years 2006–2009 +2% -25% Acute inpatient spending per member Total inpatient spending per member 4,000 3,500 Between 2006 and 2009: HIV diagnoses dropped 25% in Massachusetts, in contrast to a 2% increase nationally. 3,000 2,500 2,000 -33% -44% 1,500 1,000 500 2006 2007 2008 2009 Between 2002 and 2008: AIDS mortality rates decreased by 44% in Massachusetts compared to 33% nationally. Approximately $1.5 billion The amount the Massachusetts Department of Health estimates it has saved over the past 10 years. n 99% of the state’s HIV-positive population is retained in clinical care (41% nationally). n 90% of HIV-positive state residents receive HIV medication regimens (36% nationally) n 72% of state residents with HIV have a suppressed viral load (vs. 28% nationally). “The Massachusetts data is clear evidence that if properly implemented, the ACA can greatly improve all outcome measures articulated in the CDC Engagement in Care Cascade for people living with HIV, as well as address the care and treatment needs of most other Americans living with chronic health conditions,” Greenwald said. According to Greenwald, Massachusetts reforms have also proved successful at reducing rates of new HIV infections, AIDS mortality, and overall cost of HIV-related care and treatment. P os i t i ve lyAwar e .co m Between 2006 and 2009, HIV diagnoses fell by 25% in Massachusetts as compared to a 2% national increase, and between 2002 and 2008 Massachusetts AIDS mortality rates decreased by 44% compared to 33% nationally. Massachusetts health reforms, while greatly expanding access to high-quality health care, have also resulted in significant cost savings. The amount spent post-reforms per HIV-positive Medicaid beneficiary has decreased significantly, especially the amount spent on inpatient hospital care, Greenwald said. In addition, the Massachusetts Department of Health estimates that, because of health reforms and the resulting decline in HIV transmission rates, it has saved approximately $1.5 billion in HIV health care expenditures over the past 10 years. Greenwald and others readily admit that reform efforts are not the only essential ingredients needed to bolster HIV-related outcomes. Health care infrastructure in a state, the number of medical providers with expertise in HIV care, other government assistance programs available to the poor, transportation options, and other socio-economic factors will weigh heavily on a state’s performance in reaching people with HIV/AIDS. These challenges notwithstanding, further efforts to implement the ACA nationwide could likely help areas across the country begin to replicate Massachusetts’ successes and help lift the national performance across the “stages of engagement in HIV care.” That is, of course, if ACA implementation is not derailed by state actions, including opting out of expanding Medicaid to all low-income residents, or the repeal efforts pledged by many opponents of the law. —David Munar NOVe mb e r+ DEC e mb e r 201 2 49 A new day has begun. We’re turning the corner on an epidemic. But even as we look forward, we are compelled to honor those we’ve lost and to thank those who have helped bring us to this day. As publisher of Positively Aware , TPAN salutes those who have helped bring us to World AIDS Day 2012. ASK THE HIV sPECIALIST Rick Loftus, MD, AAHIVS Peace of mind viral load is undetectable and I have a good T-cell count. Ever since I was diagnosed, however, I have experienced deep depression. My life is a mess with a recent job loss, money problems, a dysfunctional relationship, and I’m still not out about being gay or HIV-positive. My doctor keeps trying different antidepressants and sleeping pills, but nothing seems to work. A friend recommended a psychiatrist and he prescribed yet another antidepressant without even asking me what other drugs I’m taking. Is there any danger of these antidepressants interfering with my HIV meds? Is there any one antidepressant known to be effective for people with HIV? Help! I’m at the end of my rope! I ’ve been HIV-positive for 12 years. My Dear End-of-Rope, asked three questions: 1) Can psychiatric and HIV medicines interact in a bad way; 2) Is there a “preferred” antidepressant for people with HIV; and 3) What do we do about depression, anyway? To those, I might also add 4) Can certain HIV treatments have a psychiatric effect? Question 1: Yes, there can be interactions between HIV drugs and psychiatric medicines that could produce undesirable side effects. Also, the herbal antidepressant St. John’s wort can lower the blood levels of many HIV medicines, so we never use that herb for HIV patients on treatment. Question 4: The HIV drug efavirenz (found in Sustiva and Atripla) can definitely affect the mood; if there are significant pre-existing mood problems in a patient, I often will choose a different HIV medicine for them. Isentress (raltegravir) has also been found to worsen depression in patients already on antidepressants; it’s not clear if that’s due to the Isentress interacting with their psychiatric meds or a direct mood-depressive effect of the Isentress. Any HIV patient needing psychiatric prescriptions should work with a provider familiar with all of these issues. When I have a patient who works with a psychiatrist, I speak to that provider to make sure he’s aware of the possible drug interactions with HIV medicines. Drug interactions can be very serious; it’s essential that P os i t i ve lyAwar e .co m F irst of all, Hang in there! YOu’ve Photo COURTESY OF RICK LOFTUS psychiatrists review your entire drug list before prescribing something for you. Question 2: There’s no “one-size-fits-all” antidepressant for HIV patients, any more than there is a “onesize-fits-all” HIV cocktail. The “right” antidepressant for a patient depends on many different factors, such as the type of depression, the presence of insomnia, other medical conditions they might have, etc. But, that said, at San Francisco General Hospital, where I trained, we usually used Celexa (citalopram) as a first choice, because it generally lacked interactions with the common HIV drugs, and was available as a less-expensive generic. Lexapro (escitalopram) is a newer medicine that similarly lacks drug interactions and rates very favorably for effectiveness and lack of side effects when compared to other antidepressants. But this gets to Question 3: How do we know that a medication is what your depression needs, anyway? You mention that you’ve been depressed ever since you were diagnosed HIV-positive, but were you depressed before? You mention a host of stressors, including “a recent job loss, money problems, a dysfunctional relationship, and I’m still not out about being gay or HIV-positive.” Those last two facts seem especially important: Living in one closet can be extremely depressing, let alone living in two. I have no doubt that the closeted status is also a factor in the relationship difficulties. With the underlying issues in your life, there’s no pill that’s going to erase your depression. What I would strongly recommend is finding a cognitive-behavioral psychotherapist to work with you, to clarify how your life circumstances are creating your depression, and to explore how to address those factors. Also, you might check out Loving What Is, by Byron Katie. While many might be skeptical, her technique is easily learned in just a few minutes, has been found to be very effective by many academic psychotherapists, and is free if you check it out from the library. Self-help from a book is no substitute for working with a qualified therapist, but it may help while you’re looking for one. Rick Loftus, MD, AAHIVS , is Associate Program Search for an HIV Specialist™ Finding an HIV Specialist™ is easy with AAHIVM’s Referral Link: www.aahivm.org. Enter your ZIP code on the home page, and click on the “Go” button for a list of HIV Specialists™ near you. Director for the internal medicine residency program at Eisenhower Medical Center, and has a private practice in Palm Springs, California. NOVe mb e r+ DEC e mb e r 201 2 51 What’s goin’ on? Keith R. Green Super Soul Sunday Just another day with HIV morning ritual of sleeping in until it’s time for Super Soul Sunday on the Oprah Winfrey Network. We’re both from very traditional Christian upbringings, but neither of us currently attends church on a regular basis. We’ve talked about finding a place where we can worship together, though we’ve only visited one church in the whole time that we’ve known each other. We acknowledge the yearning for connection and relationship with others who believe in God as we do, but we’re also clear that we really can’t afford to spare the energy that’s required to deal with all that often comes with traditional worship spaces (i.e., cliques, hypersexual closeted homos, and gay-bashing). So I was really happy when I stumbled upon this show, and even more thrilled when I realized that he was just as captivated by it as I am. Week after week, we tune in to Oprah’s conversations with the spiritual gurus of our time, from Deepak Chopra to Wayne Dyer to Iyanla Vanzant. The first episode that we caught was with Gary Zukav, famous for the metaphysical masterpiece The Seat of the Soul. I started reading it shortly after one of his appearances on the Oprah Winfrey Show. Watching their conversation reminded me that, for whatever reason, I hadn’t finished the book. I found my copy on my bookshelf, still bookmarked on the page where I had left off. As I opened the book, I heard Oprah in the background talking about her favorite chapter; the one written about “intention.” I looked down to the page and, lo and behold, it’s in the heart of Intention I (the book actually has two chapters about intention). If you’re not freaked out yet, keep reading. It gets even weirder. A few years ago, I was out Christmas shopping and came across Wayne Dyer’s The Secret of the Power of Intention. At the time, I didn’t even know who Wayne Dyer was, but a little voice inside me urged me to buy it as a gift for a friend. She later told me that it was one of the best gifts that she’s ever received. Her mother noticed her reading the book and shared 201 2 M y partner and I have a Sunday Knowing who I am and from where I come provided me with the audacity to believe that, not only could I recover, but I could also accomplish everything that I’d ever envisioned for my life. an audio recording of Dr. Dyer’s seminar on the power of intention, which my friend then shared with me. While listening to the recordings, the idea that everything that exists does so as the result of both conscious and unconscious intention resonated with me in a way that is changing my life in ways I could never have imagined. A part of me feels like I’ve always been aware of the relationship that exists between thought and reality, and I’ve experimented with it enough in my own life to know that it’s real. What I was hearing from Dr. Dyer was simply external confirmation of a truth that is as central to my being as blood. Ten years ago, when I was given a 50/50 chance of recovering from mycobacterium avium complex, I’m clear that the thoughts that I held about my life and my future changed my reality. I’ve always known that I was put on earth for a purpose (we all are, actually), and during the most difficult time of my life, the people closest to me kept reiterating that truth through their words and gestures of love. My faith in God, the source from which I come, served as the bridge between thought and reality for me. Knowing who I am and from where I come provided me with the audacity to believe that, not only could I recover, but I could also accomplish everything that I’d ever envisioned for my life. And, because I also believe that God can (and often does) provide us with more than we could ever ask for or think of, my dreams of becoming an educator are now being actualized in a way that I could have never imagined: doctoral studies at the University of Chicago School of Social Services Administration. I finished reading The Seat of the Soul and was reminded yet again that everything happens for a reason when it is supposed to. Most important though, I was reminded to see good in everything. All things are lessons that God would have us learn, with the end goal of realizing who(se) we truly are. I hope to one day find a congregation of believers who witness God at that level and want to use their collective thoughts to actualize a better world for us all. Until then, I’ll stay cuddled up on the couch watching Super Soul Sunday! P os it iv e lyAwa r e .co m 52 N OVe mb e r +DEC e mber Photo: Darren Calhoun Salient ramblings Sal Iacopelli ‘Born to be alive’ as if I am in a frantic race to make up for time lost during my liquor-sodden days of the ‘70s and ‘80s. Testing HIV-positive and facing the possibility of a shortened life span has intensified this drive. Can I ever do enough? Be enough? 7/2/1993, 6:30 a.m.: Awoke to the aroma of brewing coffee. Smoked, drank coffee. Obsessed worriedly about the pending results of my HIV test. 9/12/2012, 6:30 a.m.: Awoke to the aroma of brewing coffee. Smoked, drank coffee, and chanted my morning mantras: “I am open to the infinite realm of possibilities in the universe” and “I trust and have faith in the magic of my life.” 7/3/1993, 8:00 a.m.: Swallowed breakfast. 9/12/2012, 8:00 a.m.: Swallowed a handful of vitamins, antioxidants, and HIV medications with breakfast. 7/5/1993, noon: Received the results of my HIV test and joined the growing ranks of the doomed. I thought of my fellow HIV-positive actors in the show Party, Robb and Ted. I am the third to test positive. Almost half the cast. 9/12/2012, noon: Thought about Robb and Ted who died over a decade ago from AIDS. Struggled with sadness and survivor guilt, yet had gratitude that I’m fortunate enough to still draw breath. 8/9/94, 12:30 p.m.: Had my typical lunch consisting of a greasy cheeseburger, fries, and a diet Coke. 9/12/12, 12:30 p.m.: Had my typical lunch consisting of a homemade grilled chicken breast and vegetable pasta salad in balsamic and Dijon vinaigrette. 2/16/95, 1:00 p.m.: Frustrated with sloppy Chicago winters and facing the fact I may not have much time left on this planet, I decided to move to San Francisco to live out my days in the debauchery of that gilded city. 9/12/12, 1:00 p.m.: Fantasized about finally moving to Phoenix to escape the brutal Chicago winters. Visualized myself celebrating my 66th birthday, at a poolside party in my backyard. 10/29/1995, 1:30 p.m.: Left the gym I’d just joined, frustrated with my declining health and increasing fatigue, unable to keep up with step class. 9/12/2012, 1:30 p.m.: Hopped on my retro ’50s bike for a 14-mile ride along the lake, listening to ’80s dance music, dressed like a ’90s lesbian. Had an identity crisis—saw my old high school buddy, John, now a P os i t i ve lyAwar e .co m —Patrick Hernandez A s a recovering alcoholic, I feel homeless person who shuffles dreamily through each day. Stopped and gave him $20, then rode on madly. 11/1/1995, 2:00 p.m.: Recouped in the hospital with my first AIDS-defining illness and started an HIV medication regimen. Thankfully, protease inhibitors hit the scene with a life-prolonging splash. 9/12/2012, 2:00 p.m.: Wondered how long I will be chained to this cloying HIV medication regimen. Whatever. “Better living through pharmaceuticals,” I always say. Truthfully, I simply adore taking pills. 3/15/1996, 4:30 p.m.: Acted the fool with my beloved but maddening partner (daddy/master) and fought over the phone about the insane intricacies of our dysfunctional S&M relationship. 9/12/2012, 4:30 p.m.: Acted the fool in my backyard with my beloved Sofi (see picture). 5/5/1997, 4:40 p.m.: Thought about the hot, older, leather daddy who nailed me at Blow Buddies sex club the night before, hoping he calls. 9/12/2012, 4:40 p.m.: Thought of the hot, older guy I nailed at the bear naked party I attended yesterday. Afterward, he shared that he is married (to a woman) and lives in the western suburbs. Christ. I dunno—not sure if I want to get involved with someone who lives in the goddamned suburbs. 8/2/1997, 8:00 p.m.: Babysat my friend Sher’s 2-year-old, Max. After I read her a bedtime story, I kissed her forehead, looked into her amazing, sparkling blue eyes, told her she is an angel and is capable of doing and being anything she wants to be. I basked in the newness of her life. 9/12/20 12, 8:00 p.m.: Had an emotional phone conversation with Sher about the fact that Max is submitting college applications and targeting Yale, her alma mater. Living with HIV has been a constant in my life for 19 years, but how I live my days is markedly different from 19 years ago. However, I have lived them. Someone once told me he knows it’s going to be a good day if he wakes up, stretches his arms out, and doesn’t feel the constraints of a coffin. Have a good day. Living with HIV has been a constant in my life for 19 years, but how I live my days is markedly different from 19 years ago. NOVe mb e r+ DEC e mb e r 201 2 53 S:7” Hey, have you heard the news? For eligible patients, Merck covers up to $400 on out-of-pocket costs, for each of up to 12 prescriptions. Savings Coupon for ISENTRESS (raltegravir): eligibility restrictions, terms, and conditions apply.a To find out more visit isentress.com. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. a For eligible privately insured patients. Not valid for residents of Massachusetts. Restrictions apply. Please see full Terms and Conditions on isentress.com. Model Copyright © 2012 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1052713-0000 09/12