Supplement to REAL HEALTH magazine
CREDIT TK HERE
Advocating for yourself and others can lead to a healthy life with HIV/AIDS.
Want more info Tekay? Check out www.poz.com for more information
Cedric Sturdevant Advocate Jackson, Mississippi POZ FOCUS 1
INDICATIONS ISENTRESS is an anti-HIV medicine used for the treatment of HIV. ISENTRESS must be used with other anti-HIV medicines, which may increase the likelihood of response to treatment. The safety and effectiveness of ISENTRESS in children has not been studied. It is important that you remain under your doctorâ€™s care. ISENTRESS will NOT cure HIV infection or reduce your chance of passing HIV to others through sexual contact, sharing needles, or being exposed to your blood.
IMPORTANT RISK INFORMATION A condition called Immune Reconstitution Syndrome can happen in some patients with advanced HIV infection (AIDS) when anti-HIV treatment is started. Signs and symptoms of inflammation from opportunistic infections may occur as the medicines work to treat the HIV infection and strengthen the immune system. Call your doctor right away if you notice any signs or symptoms of an infection after starting ISENTRESS. Contact your doctor immediately if you experience unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This is because on rare occasions muscle problems can be serious and can lead to kidney damage. When ISENTRESS has been given with other anti-HIV drugs, side effects included nausea, headache, tiredness, weakness, trouble sleeping, stomach pain, dizziness, depression, and suicidal thoughts and actions. Rash occurred more often in patients taking ISENTRESS and darunavir together than with either drug separately, but was generally mild.
Patient Information ISENTRESS ® (eye sen tris) (raltegravir) Tablets Read the patient information that comes with ISENTRESS1 before you start taking it and each time you get a refill. There may be new information. This leaflet is a summary of the information for patients. Your doctor or pharmacist can give you additional information. This leaflet does not take the place of talking with your doctor about your medical condition or your treatment. What is ISENTRESS? • ISENTRESS is an anti-HIV (antiretroviral) medicine used for the treatment of HIV. The term HIV stands for Human Immunodeficiency Virus. It is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). ISENTRESS is used along with other anti-HIV medicines. ISENTRESS will NOT cure HIV infection. • People taking ISENTRESS may still develop infections, including opportunistic infections or other conditions that happen with HIV infection. • Stay under the care of your doctor during treatment with ISENTRESS. • The safety and effectiveness of ISENTRESS in children has not been studied. ISENTRESS must be used with other anti-HIV medicines. How does ISENTRESS work? • ISENTRESS blocks an enzyme which the virus (HIV) needs in order to make more virus. The enzyme that ISENTRESS blocks is called HIV integrase. • When used with other anti-HIV medicines, ISENTRESS may do two things: 1. Reduce the amount of HIV in your blood. This is called your “viral load”. 2. Increase the number of white blood cells called CD4 (T) cells. • ISENTRESS may not have these effects in all patients. Does ISENTRESS lower the chance of passing HIV to other people? No. ISENTRESS does not reduce the chance of passing HIV to others through sexual contact, sharing needles, or being exposed to your blood. • Continue to practice safer sex. • Use latex or polyurethane condoms or other barrier methods to lower the chance of sexual contact with any body fluids. This includes semen from a man, vaginal secretions from a woman, or blood. • Never re-use or share needles. Ask your doctor if you have any questions about safer sex or how to prevent passing HIV to other people. What should I tell my doctor before and during treatment with ISENTRESS? Tell your doctor about all of your medical conditions. Include any of the following that applies to you: • You have any allergies. • You are pregnant or plan to become pregnant. - ISENTRESS is not recommended for use during pregnancy. ISENTRESS has not been studied in pregnant women. If you take ISENTRESS while you are pregnant, talk to your doctor about how you can be included in the Antiretroviral Pregnancy Registry. • You are breast-feeding or plan to breast-feed. - It is recommended that HIV-infected women should not breast-feed their infants. This is because their babies could be infected with HIV through their breast milk. - Talk with your doctor about the best way to feed your baby. Tell your doctor about all the medicines you take. Include the following: • prescription medicines, including rifampin (a medicine used to treat some infections such as tuberculosis) • non-prescription medicines • vitamins • herbal supplements Know the medicines you take. • Keep a list of your medicines. Show the list to your doctor and pharmacist when you get a new medicine. How should I take ISENTRESS? Take ISENTRESS exactly as your doctor has prescribed. The recommended dose is as follows: • Take only one 400-mg tablet at a time. • Take it twice a day. • Take it by mouth. • Take it with or without food. Do not change your dose or stop taking ISENTRESS or your other anti-HIV medicines without first talking with your doctor.
If you fail to take ISENTRESS the way you should, here’s what to do: • 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 take two tablets of ISENTRESS at the same time. In other words, do NOT take a double dose. • If you take too much ISENTRESS, call your doctor or local Poison Control Center. Be sure to keep a supply of your anti-HIV medicines. • When your ISENTRESS supply starts to run low, get more from your doctor or pharmacy. • Do not wait until your medicine runs out to get more. What are the possible side effects of ISENTRESS? When ISENTRESS has been given with other anti-HIV drugs, side effects included: • nausea • headache • tiredness • weakness • trouble sleeping • stomach pain • dizziness • depression • suicidal thoughts and actions Other side effects include rash, severe skin reactions, feeling anxious, paranoia, low blood platelet count. A condition called Immune Reconstitution Syndrome can happen in some patients with advanced HIV infection (AIDS) when combination antiretroviral treatment is started. Signs and symptoms of inflammation from opportunistic infections that a person has or had may occur as the medicines work to treat the HIV infection and help to strengthen the immune system. Call your doctor right away if you notice any signs or symptoms of an infection after starting ISENTRESS with other anti-HIV medicines. Contact your doctor promptly if you experience unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This is because on rare occasions, muscle problems can be serious and can lead to kidney damage. Rash occurred more often in patients taking ISENTRESS and darunavir together than with either drug separately, but was generally mild. Tell your doctor if you have any side effects that bother you. These are not all the side effects of ISENTRESS. For more information, ask your doctor or pharmacist. How should I store ISENTRESS? • Store ISENTRESS at room temperature (68 to 77°F). • Keep ISENTRESS and all medicines out of the reach of children. General information about the use of 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 additional 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? Active ingredient: Each film-coated tablet contains 400 mg of 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. In addition, the film coating contains the following inactive ingredients: polyvinyl alcohol, titanium dioxide, polyethylene glycol 3350, talc, red iron oxide and black iron oxide.
IMPORTANT: Take ISENTRESS exactly as your doctor prescribed and at the right times of day because if you don’t: • The amount of virus (HIV) in your blood may increase if the medicine is stopped for even a short period of time. • The virus may develop resistance to ISENTRESS and become harder to treat. • Your medicines may stop working to fight HIV. • The activity of ISENTRESS may be reduced (due to resistance).
Distributed by: Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. Whitehouse Station, NJ 08889, USA
Registered trademark of Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. Copyright © 2010 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved.
Revised June 2010 9795110 U.S. Patent Nos. US 7,169,780 21052250(7)(110)-10/10-ISN-CON
(COVER) JAMES PATTERSON; (FERGUSON) STEVE MORRISON
t’s been said that if you don’t do things for yourself no one else will. But that’s not always true. Although self-advocacy can’t be overstressed— especially where your health is concerned— sometimes your champion may be a loved one or a stranger who steps in to help on your behalf. This is what happened when my former husband was diagnosed with AIDS in the early ’90s. He and I were miles apart, literally and ﬁguratively. As the virus progressed, he lost a staggering amount of weight and became extremely weak. In those days, HIV was a death sentence. Scientists knew what caused AIDS, but they couldn’t ﬁgure out how to stop it. His mother—a nurse— and I had stayed in touch, but our lives had gone in different directions. She told me she had become his advocate because he was in no condition to ﬁght this battle alone. She’d visited the penitentiary where he was incarcerated, and she discussed his condition with the facility’s administrators. They agreed to release him to her for home care. At the time, he weighed about 60 pounds. Before I continue, ﬁrst let me disclose. I’m HIV negative. I tested as soon as I heard about my husband’s condition. One year later, I tested again. How I escaped the virus, I still don’t know. Today, I know much more about HIV and AIDS. One of the most important things I’ve learned about this chronic disease is that people living with the virus can
also live normally and lead long and healthy lives. This longevity isn’t solely a result of modern antiretroviral medications. It’s also because, unlike many years ago when my husband was sick, now there is much more awareness about HIV/AIDS. And advocates have fought for the rights of people living with the virus. The result? More services and support so HIV-positive people can get the help they need to survive and thrive. When I think about how my former mother-in-law advocated on behalf of her son, I’m awed. Although this Real Health Focus emphasizes the beneﬁts of advocating for yourself, it’s also a guide for those whose loved ones are affected by the virus. Often, a diagnosis of HIV plunges people into despair or a state of panic. What do you do? Where do you go? Whom can you turn to for help? Really, the answers all begin with you. You can connect to care; you can educate yourself about the virus; and you can learn how to navigate and understand treatment, how to choose the best doctor and how to advocate for your health—or that of others too. It’s called empowerment. And with it, you and others can once again expect to enjoy a long and healthy life. Kate Ferguson Editor-in-Chief Real Health and realhealthmag.com
Published by Smart + Strong, publishers of Real Health and POZ. Copyright © 2010 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise, without the written permission of the publisher. REAL HEALTH FOCUS is an educational series on specific topics. The editorial content is independently produced by Smart + Strong. Send feedback to REAL HEALTH FOCUS c/o Smart + Strong, 462 Seventh Avenue, 19th Floor, New York, NY 10018. Tel: 212.242.2163; realhealthmag.com.
Want to learn more? Check out realhealthmag.com for more information.
Publisher: Megan Strub Editorial Director: Regan Hofmann Editor-in-Chief: Kate Ferguson Art Director: Steve Morrison Managing Editor: Jennifer Morton Executive Editor: Tim Horn
HIV & ADVOCACY REAL HEALTH FOCUS 3
Pam Goodrich shows how empowerment can change your life—and the lives of others.
trange as it may sound, when Pam Goodrich learned she’d tested HIV positive, it pointed her life in a more healthy direction. Along the journey, Goodrich educated herself about the virus, connected to care and established a solid relationship with her doctor. She also reaped unexpected beneﬁts of patient empowerment—it led her to become an advocate for both her own health and that of other people living with HIV/AIDS. But none of this happened overnight. When Goodrich tested positive for the virus in 1989, she was not surprised. She was an injection drug user whose life was going nowhere. “Everybody I was doing injection drugs with was falling victim to the virus,” she says. “I suspected I’d been infected, but my drug use kept me indifferent. I felt like I was going to die anyway so what was the point. To stop using drugs was not going to change anything.” Eventually, her habits wore her down. “I was really tired. I had used [drugs since my teens], and I was just sick of me,” she says. “I wanted a better life.” Although Goodrich didn’t kick her habit right away, an important shift had occurred: She had raised her awareness level. But it took another seven years before Goodrich made a change. In 1996, after the last of many stints in jail, she 4 REAL HEALTH FOCUS HIV & ADVOCACY
returned home to ﬁnd both her mother and sister seriously ill and hospitalized. Now she was prepared to put a lifechanging plan in motion. “I said to God, ‘If you allow them to make it through this, I promise I will get my life together,’ which meant to stop using drugs and get into organizations that would help me,” Goodrich recalls. One such organization was the Center for Community Alternatives, a New York agency that helps ex-offenders reintegrate into society. After graduation, she got involved in a mentoring program offered by the Fortune Society, a local nonproﬁt social service and advocacy organization that also helps former inmates reenter society. While there, Goodrich became an HIV peer educator. She participated in a leadership training program for people living with HIV/AIDS and eventually sat as its cochair. The program’s goal was two-fold: to educate and empower HIV-positive people so they could become their own health care advocates and also become champions for others in their community living with the virus. The trainings taught Goodrich skills that helped her identify ways to change community policies affecting HIV-positive people in her local area. She also made time to educate teenagers and young adults about the virus—but didn’t lose focus on herself. “At that point, I wanted to continue to empower
Empowerment not only helped save Pam Goodrich’s life, it also gave her the chance to advocate for others.
myself,” Goodrich says. As her life improved, Goodrich knew she’d found her passion. What’s more, she realized that as an ex-offender who had gone through prison and HIV programs, she was someone inmates could identify with. If she could also empower them, they might be motivated to help themselves, like she had, through community involvement, advocacy and education. Self-empowerment is a lifelong process that continues to offer new lessons and insight. Take, for example, Goodrich’s evolving viewpoints about taking HIV medications. When she was diagnosed positive, Retrovir (zidovudine) was one of the few FDA-approved HIV treatment drugs. Despite her doctor’s recommendation to start treatment, she refused. She had concerns about the drug’s toxicity. But when her CD4 cell count dropped to 41, her instinct for self-preservation kicked in. “I wanted to live,” Goodrich says. So with her doctor, she chose an HIV combo. By that time, she’d also enrolled in a 12-step program to address her substance abuse problem. She realized she could live—but only if she took control of her health and began participating in her treatment. Goodrich cultivated a solid relationship with her doctor, researched HIV meds and discussed what she learned with her physician. “If you have an open relationship with your doctors, you can build a good rapport so you can tell them everything that’s going on with you. This way they can better diagnose you to help save your life.” “People should take advantage of their entire doctor’s visit; it’s not something to rush through,” she says. “You
need to ask questions, talk about your fears, [discuss] whether you should go into therapy or other things you might need, such as a support group.” Goodrich also swears by the support she received from organizations such as the Community Health Action of Staten Island, where she currently works as the LGBT education and training coordinator. “In the Fortune Society, I was around former substance abusers and inmates who called me on my stuff. They guided me and gave me the tools I needed, and then they let me go,” Goodrich recalls. “At Community Health Action, they afforded me the opportunity to work in different capacities and help people as I continued to help myself.” Today, Goodrich remains passionate about her work as an advocate. She coordinates training sessions for Staten Island’s Arthur Kill Correctional Facility and the inmate community. “I’ve had the opportunity to work in the corrections sector where people are not openly talking about their HIV status,” she says. “But they feel comfortable enough to come to me.” She leads by example, showing the courage and conﬁdence to openly discuss her own status. “Sometimes I disclose when I feel a person is depressed or down on themselves or their self-esteem is severely damaged,” she says. “If people see somebody who has lived with the virus for more than 20 years, if they’re open and willing to accept [that HIV is not a death sentence], then they can take responsibility for their own care.” As Goodrich can attest, this kind of personal empowerment can literally save lives.
Don’t Forget Your Annual Checkup
There is no better way to summarize the goals of self-empowerment than to highlight The Denver Principles, a manifesto issued in Denver in 1983 by a group of people living with HIV/AIDS. The Denver Principles are as relevant and powerful today as they were nearly 30 years ago. Here is a portion of this historical document:
WE ARE NOT VICTIMS We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term that implies passivity, helplessness and dependence upon the care of others. We are “People With AIDS.” RECOMMENDATIONS FOR ALL PEOPLE 1. Support us and join in our struggle against those who would refuse to touch us, or who would fire us from our jobs, evict us from our homes or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread
by casual, social contact. 2. Do not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles. RECOMMENDATIONS FOR PEOPLE WITH AIDS 1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies. 2. Be involved at every level of decision-making. Specifically, serve on the board of directors of provider organizations. 3. Be included in all AIDS forums with equal credibility as other
participants, to share their own experiences and knowledge. 4. Substitute low-risk sexual behaviors in place of those that could endanger themselves or their partners; we feel that people with AIDS have an ethical responsibility to inform their potential partners of their health status. RIGHTS OF PEOPLE WITH AIDS 1. To live as full and satisfying sexual and emotional lives as anyone else. 2. To receive quality medical treatment and quality social service provisions without
discrimination of any form, including sexual orientation, gender, diagnosis, economic status or race. 3. To obtain full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives. 4. To ensure privacy and confidentiality of medical records, to receive human respect and the right to choose who their significant others are. 5. To die—and to LIVE—in dignity.
HIV & ADVOCACY REAL HEALTH FOCUS 5
Speak up when it comes to your care and treatment.
The quality of the relationship with your doctor—including how much information you share and how well you advocate for yourself—is critical to long and healthy living with HIV.
f there’s one situation in which people living with HIV need to advocate for themselves, it’s in their relationships with their health care providers. Yet many are reluctant to engage their doctors. After all, the thinking goes, they’re the ones with the medical degree and expertise—they should understand what’s going on, right? Yes, but health care providers—whether it’s a doctor, physician assistant or registered nurse—aren’t mind readers and can’t answer your questions or concerns unless you make yourself heard. Like any other partnership, the relationship with your health care provider requires a bit of TLC on both your parts and should be based on openness and good communication. “There needs to be a certain level of comfort and trust in order for the patient to get quality medical care,” says Jennifer Herman-Benalt, LMSW, a former program coordinator for the Women’s Project at 6 REAL HEALTH FOCUS HIV & ADVOCACY
Beth Israel Medical Center in New York City. Communication with health care providers is very much a two-way street. Just as your care provider will have certain expectations of you, you will also have to be honest with the provider about all your questions or concerns regarding care. “Patients need to be their own advocates,” Herman-Benalt says.
It’s crucial for your health care provider to be aware of your medical history, such as previous surgeries, hospitalizations and illnesses (including mental illness) and all over-the counter, prescription and recreational drugs you are taking. “We now deal not only with opportunistic infections and the management of HIV, but also the broad effects of the virus and medications on many parts of the body,” says M. Keith Rawlings, MD, medical director of AIDS Arms Inc. at Peabody Health
GETTY IMAGES/SIRI STAFFORD (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)
What’s Up, Doc?
“There needs to be a certain level of comfort and trust in order for the patient to get quality medical care.” Center in Dallas. Knowledge of your complete medical history, Rawlings explains, will allow your health care provider to make the best HIV treatment and care decisions based on any other challenges you might face. In addition, tell your care provider about your family’s medical history—such as relatives with heart disease, diabetes and other health problems—because it can raise your own chances of certain diseases, especially those that can be worsened by HIV and its treatment. “Physicians want to be able to take all these things into account when making recommendations,” Rawlings says. Of course, this can be a lot of information to recall during an all-toobrief meeting with your provider, so write down as much information as you can before your ﬁrst or next appointment and bring it with you.
The Whole Truth
The subjects that you feel most uncomfortable talking about might end up being the very factors that affect your HIV care the most—issues like drug use, cigarette smoking, depression and sexual behaviors, to name a few. It’s essential that your health care provider know about these so that he or she can monitor certain aspects of your health more closely and make treatment decisions tailored to meet your needs. “If you tell me one thing, and something else is the case,” Rawlings says, “it will be hard for me to accurately intervene or make assessments.” At the same time, you shouldn’t feel judged by your health care provider. If you do, remind him or her that it’s difﬁcult to be honest if you’re being made to feel ashamed.
It’s About Trust
You must be willing to trust your doctor’s medical suggestions and opinions. As Rawlings points out, “Coming in with a piece of paper that you got from your cousin’s brother’s friend off the Internet to explain why you’re going to supersede what your health care provider tells you is probably not one of the better ways to establish the kind of relationship you want to have with your provider.” However, you’re not a silent partner in these decisions—if you have questions, concerns or thoughts of your own when it comes to your care and treatment, don’t hesitate to speak up.
No Two Patients Are Alike
People living with HIV are a diverse group, with each individual having a different history and unique medical needs. In turn, there really isn’t a one-size-ﬁts-all way to monitor your health or treat your HIV infection. For example, while a once-a-day treatment regimen might be good for some people with HIV, twice-daily treatment might be necessary for others. “While people like to have convenience,” Rawlings says, “it doesn’t necessarily mean that the easiest-possible drug regimen is the most appropriate thing for them.” Working closely with your health care provider is the surest way for you both to make decisions that are best and most effective for you.
As we said before, it’s partly your doctor’s responsibility to be on top of your health, but you have to do your part too. These ﬁve simple tips will help you become your own advocate each time you visit a doctor.
BE HONEST. Don’t withhold information regarding your personal and family medical histories, your sexual activity, any drugs you may use or other medications you take. Keeping details from your health care provider makes it harder for you both to optimize your health. READ. Doing some homework about HIV and its treatment can make for good conversation with your doctor. The pages of Real Health and POZ—along with POZ. com, realhealthmag.com and AIDSmeds.com—are filled with useful information about HIV. WRITE. Don’t show up to your appointments empty-handed. Bring a notebook ﬁlled with any concerns, changes or questions that may have arisen since your last visit. And take notes during your appointment. GET ORGANIZED. Keep a folder of any documents your health care provider gives you, including lab reports, drug information, pamphlets or other paperwork. And use a calendar to help remember health care appointments and medication reﬁlls—two big no-nos are missing clinic visits and letting your prescriptions lapse. HIRE AND FIRE. Remember, your doc works for you. Make sure your provider treats you with respect and takes your questions and concerns seriously. If not, you might want to consider looking for a new doc. Adequate health care is not a privilege; it is a right.
Meds: When and What to Take
Taking medicine can halt the damage HIV does to your immune system, ultimately helping you live longer and healthier. A little science know-how and advocacy savvy can take you a long way—especially when faced with the big questions of when to start treatment and which meds to use.
IV treatment works. Countless studies, along with lots of real-world experience involving many thousands of people living with HIV, have proved that it can keep HIV-positive people alive longer and keep them healthier—for decades. But it’s a big step and comes with a lot of responsibility. In turn, it’s important to understand how treatment works, when it’s recommended and what types of medications are used. First, some basics. HIV infects cells of the immune system and destroys or impairs their function. Over time, the immune system progressively deteriorates. Eventually, this leads to acquired immune deﬁciency syndrome, or AIDS. And because our immune systems are essential to protect us from developing life-threatening infections and cancers, HIV treatment, also known as antiretroviral
Educate yourself and talk with your health care provider to determine what meds work best for you.
(ARV) therapy, is essential to our survival. ARV therapy blocks the ability of HIV to multiply, or replicate, inside immune system cells. Once HIV replication is halted, immune system cells—notably CD4 cells (also called T cells), which help organize the immune system’s response to infections and cancers—are able to live and do their jobs. And the longer ARV therapy is able to stop HIV replication and keep the number of CD4 cells high, the greater the chance of disease-free survival. In terms of deciding if and when to start treatment, there is no one right or wrong answer—it’s different for each person living with HIV. “Some patients think that if they look and feel healthy, they don’t have to be on meds, which is not necessarily true,” states Kimberly Y. Smith, MD, MPH, an HIV specialist at Rush University Medical Center in Chicago. Starting meds, she says, depends on a
number of things, including the number of CD4 cells (CD4 count) and amount of virus (viral load) in your blood. “If you’re tired a lot and have conditions like skin rashes, recurrent yeast infections and chronic diarrhea,” she says, “regardless of your CD4 count, I am deﬁnitely going to suggest starting HIV treatment.” Though many health care providers have strong ideas about when treatment should be started (see the pullout poster), remember that it’s you who needs to take the medications—not your doctor. In turn, it’s important that you’re mentally prepared to begin therapy, which, generally, must be taken for life and exactly as recommended. So don’t be afraid to speak up if you’re feeling rushed to begin ARV therapy—you and your provider can work through any concerns and reservations together. If you start treatment, but your viral load doesn’t remain undetectable, your CD4 count continues to fall or you ﬁnd that the side effects are unmanageable, then you might have to switch to a new regimen. And just as there are different med options for those starting ARVs for the ﬁrst time, there are also options for those needing to switch.
Knowing your options, and the differences between them, will help you have a productive conversation about treatment with your health care provider. The following is a breakdown of the ﬁve different classes of HIV drugs—each one prevents HIV from replicating at a different stage in its life cycle: Entry inhibitors (EIs) inhibitors (INIs) ● Nucleoside/nucleotide reverse transcriptase inhibitors (NRTIs, or nukes) ● Non-nucleoside reverse transcriptase inhibitors (NNRTIs, or non-nukes) ● Protease inhibitors (PIs) ●
GETTY IMAGES/TERRY VINE (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)
HIV meds are taken in combination because one drug is not enough. If you were only to take one or even two HIV meds, HIV could quickly outsmart the meds and your virus could develop resistance to the drugs, which would mean you’d be taking them in vain and not controlling HIV. It takes a team of meds from different classes to control HIV. Standard treatment (often called HAART, or highly active antiretroviral therapy) combines at least three meds. For ﬁrst-time treatment takers, this often involves two nukes, plus either an INI, a non-nuke or a PI. When choosing a regimen, ask your health care provider these questions: ● Potency:
Is the combo powerful enough to ﬁght my virus and keep my viral load undetectable? ● Safety:
What kind of short- and long-term side effects will the meds have on my overall health? ● Convenience: ● Works
How many pills must I take, and how many times a day?
well with others: Do they interact with other meds I’m taking?
Be sure to tell your doctor about all over-the-counter, prescription and recreational drugs you’re taking so he or she can warn you about any potentially dangerous drug interactions. “If you can, make sure that your doctor is calling in [all] your prescriptions to the same pharmacy,” advises M. Keith Rawlings, MD, the medical director of the Peabody Health Center in Dallas and president of Integrated Minority AIDS Network Inc. “That way [your pharmacist] has all of your med information and can watch for drug interactions.”
Get Ready, Steady, Go!
While docs can recommend when HIV treatment should start, only you can decide when you’re ready to begin. Self-advocacy and communication with your health care provider can help overcome your questions or concerns. LEARN THE BASICS. Knowing the beneﬁts and risks of HIV treatment may help calm your fears. Learn about your options, including when to start and what drugs to start with. You can ﬁnd out more about HIV drugs at aidsmeds.com. Also check out their easy-to-read treatment lessons on a variety of topics for people living with the virus. MAKE A PLAN. Before you start HIV treatment, be sure you understand: How many pills of each medication should you take at a time? How many times a day should you take each medication, and when do you take them? What should you do if you forget a dose? What are the possible side effects and drug interactions? TALK TO YOUR DOC. Are you worried about side effects? Confused by your pharmacy’s instructions? Don’t hesitate to call your doctor for answers and advice. BROWN-BAG EACH CHECKUP. Dump all your meds—including OTC drugs and supplements—into a paper bag and bring it with you to each clinic visit. Your provider can sort through it for meds that don’t mix. FOLLOW UP. Once you start treatment, you and your doctor should check your viral load approximately every three months to make sure your regimen is working against HIV.
HIV & ADVOCACY REAL HEALTH FOCUS 9
Stand up for yourself, advises Mechelle Jones.
Blow Your Own Horn Advocate for what you need—and deserve.
10 REAL HEALTH FOCUS HIV & ADVOCACY
help,” Jones says, “because I always thought I was smart; I knew how to do things. But now I needed a different kind of information and help.”
YOU CAN’T DO THIS ALONE
The ﬁrst step, as Jones realized, is asking for help. Start at your hospital, clinic or doctor’s ofﬁce. Ask to talk with the case manager or social worker. They are trained to help you get ﬁnancial support and ﬁnd housing, food, a job, childcare and other services. If your clinic or doctor doesn’t meet your needs, turn to a local AIDS service organization (ASO) or community-based organization (CBO). At poz.com you will find a national services directory. Click on “services directory” at the top of the home page, type in your zip code and get information on all the nearest organizations and resources, including churches (many offer help for people living with HIV).
here’s much more to living with HIV/AIDS than health care alone. Staying healthy requires decent housing, income, food, a job, maybe childcare and some kinds of therapy. These things are available, but you need to ask for them—sometimes loudly. Speak up, stand up, reach out—do what it takes to get the services you need. Your health and welfare depend on it, and you deserve it. Mechelle Jones knows this from both sides of the coin. In 1995 she was told she had AIDS. “Not [just] HIV,” she says. “I had AIDS.” At the time, she was in the hospital with bacterial pneumonia (her third bout that year). When she got out, she returned to “my paciﬁer,” crack. Today, Jones’s virus is undetectable. Her drug use is a thing of the past, and she is an admissions coordinator at HELP/PSI, a large HIV care program in New York City. But she didn’t make the journey alone. “At ﬁrst it was really hard for me to ask people for
“I advocate for what I need because I am supposed to have it. I deserve it.” Jones’s ﬁrst requirement was housing, and her case manager helped. The U.S. Department of Housing and Urban Development (HUD) assists low-income people with HIV/AIDS and their families through the Housing Opportunities for Persons With AIDS (HOPWA) program. If you don’t qualify for HOPWA or can’t ﬁnd an agency that provides that program, don’t give up. Housing is your right, and other government programs can help put or keep a roof over your head. But advocating for yourself isn’t easy. “You can’t do this alone,” Jones says. “Find a support network. It may be NA [Narcotics Anonymous], AA [Alcoholics Anonymous] or another group. You need support to stay clean, to handle life and HIV.” Jones ﬁrst turned to a women’s HIV support group, then to her church. “I was raised in church,” she says, “so I went back to what I knew.”
HIV IS ONLY A PART OF LIFE’S JOURNEY
To help other people with HIV get services and support, Jones encourages them to build their self-esteem. “You can’t let AIDS deﬁne you,” she says. “It’s just one part of the journey. I advocate for what I need because I am supposed to have it. I deserve it.” Also, know your rights. For instance, you deserve protection from violence or discrimination based on having HIV. You deserve help if you want to disclose your HIV status to family, friends or an employer. You deserve good health care and access to medications. What if people with HIV are afraid to ask for the services they need? “I tell them, ‘You have to be able to stand up for yourself. Maybe someone told you once that you’d never be anything. Get past that hurt and pain. It’s a process, and it may take therapy. Once you feel good about yourself, you won’t let people take advantage of you.’”
TAKE A CHANCE ON TRUST
Working with a case manager isn’t all that different from working with your health care provider. In order to get the most out of the relationship, trust and honesty are necessary, and that process needs to go both ways. Jones found her ﬁrst case manager cold and unsympathetic, so she asked for (and got) a different one. If one of her clients encounters the same problem, she says, “I would tell them to ask for another case manager. They are there to serve you. That’s their job. If they’re not making you feel like a person, you can ﬁre them. They work for you.” And you have to do your part to build the relationship. At ﬁrst, Jones says, “I felt, ‘You don’t know me. I have to explain things to you, and then you are going to judge me. Forget that—just sign what I need so I can go ahead.’ But it didn’t work. They wanted to know about my kids, how I got HIV.” As it turned out, Jones being honest with the case manager was just as important as her being honest with her doctor. Case managers can help a lot more if you tell them about your life, the things you ﬁnd hard and the burdens you carry. People coming out of jail or prison, Jones says, face a particularly high hurdle: “In jail, the case manager’s job is to control you. They didn’t even call you by your name, but by a number.” When you get out, things are different. “Now you have choices. People do care about you.” You have to try, though, which may mean taking a chance. Jones says you can develop a good relationship with a case manager “just by stepping out on some trust. Give the case manager the beneﬁt of the doubt so that he or she will look at you as a person—not as an ex-con or a drug addict, but as a person in need.” And deserving of help.
Helpful Hints From Mechelle Jones’s experiences, both as a person living with HIV and an HIV services provider, she offers these tips for learning how to advocate for yourself. SPEAK UP. You deserve a good life, and that includes safe housing, good nutrition, help with childcare and finances and freedom from discrimination. All of these things, plus many more, are available, but
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you may have to ask for them. OPEN UP. Build a relationship with your case manager. Talk about what you find challenging and what you need to stay healthy. Managers can’t help you solve a problem they don’t know about. GET SUPPORT. Living with HIV holds many challenges, and other HIV-positive people can be very
understanding and helpful. A support group can help you stay sober or adherent to your meds. BUILD TRUST. Once you believe in yourself, others will believe in you. This will build trust and confidence. In turn, you will be able to ask for and get the resources you need. If you require therapy to get to that place, ask for it. It’s just one of the services you deserve.
HIV & ADVOCACY REAL HEALTH FOCUS 11
How HIV treatment advocacy can heal you, your community and the world
n the early 1980s a medical revolution took place. It started with HIV-positive people and their allies demanding that their health care providers include their thoughts and wishes in all aspects of their HIV treatment. When it became clear that doctors often had little knowledge of how to treat the deadly new disease, and that research on HIV and the immune system was moving at a snail’s pace, the revolution quickly developed into another kind of advocacy—to change how HIV research was prioritized, funded and conducted. Thus, the patient empowerment and treatment advocacy movements were born.
Tearing Down the Ivory Tower
At the beginning of the epidemic, in the 1980s, researchers sat in the equivalent of an ivory tower, deciding how much money to put into HIV research and how to conduct that process—all without consulting people with HIV or the doctors who were treating them. Moreover, the standard drug approval procedure—whereby a drug could take 10 to 15 years to make it from the test tube, through human testing and onto pharmacy shelves—was never designed to move at the quick pace necessary to ﬁght a deadly viral disease. When people with HIV questioned the slow-going business of drug approval, they were told that this was simply how the system worked, and to accept it. Fortunately, AIDS advocates were not quieted by such status quo responses. A new mantra—perhaps the deﬁning war call of the earliest and bravest activists—was born: SILENCE=DEATH.
Advocates quickly realized, however, that if they wanted to revolutionize AIDS research, and become informed decision makers in their own care, they would have to do their homework. This meant learning about immunology and biology, drug chemistry and details on research and funding. Fortunately, sympathetic doctors and researchers joined their cause and helped with the education process, thereby becoming AIDS advocates as well. Ultimately, this diverse bunch of self-educated people with HIV and their allies threw down the gauntlet to challenge the heads of the National Institutes of Health (NIH), which funds most of the country’s biomedical research, and the U.S. Food and Drug Administration (FDA), which oversees new drug approval. Not to mention, they had to face the U.S. Congress. These newborn activists demanded that the agencies involve people with HIV at every aspect of the research process—from funding appropriations for HIV/AIDS research to deciding about whether to approve a new drug.
Though it took a gargantuan effort, and plenty of public demonstrations, the activists were largely successful. Today there are community advisory boards for most types of HIV research conducted, not just in the United States, but all over the globe. What’s more, Congress passed a law in the early 1990s that gave people with HIV early access to potentially lifesaving drugs and shaved months and sometimes years off the FDA drug approval process.
Members of ACT UP took to the streets to fight for their health.
These successes transformed not only HIV research, but virtually every aspect of HIV care in the United States. Activists work alongside medical experts to draft federal treatment guidelines and constantly engage legislators about the need for increased funding to support the AIDS Drug Assistance Program (ADAP) as well as housing and social services. HIV activists have also changed doctor-patient relationships. Now, people with HIV take center stage in the treatment decision process—and many doctors like it that way.
Advocating for the Future
Today, activists have begun to meet new challenges: how to train and raise the next generation of treatment advocates—not only to inﬂuence research, but also to ﬁght for access to HIV prevention and care services. Another challenge is how to engage and involve HIV-positive African Americans, Latinos and other people of color in this process. For people with HIV there are also opportunities to learn more about the virus and get involved in advocacy efforts. Here are a few:
(ACT UP) GETTY IMAGES/MICHAEL ABRAMSON; (LINDSEY AND KASEGE) MACKENZIE STROH; (BRYANT) ANDREW MCLEOD
Danielle Houston, the director of Project LEAP—a 17-week training program based at the Center for AIDS in Houston—stresses that good advocacy relies on understanding HIV treatment and barriers to care in the United States. She’s working with the Black Treatment Advocates Network (BTAN) to develop similar types of training programs in cities across the country, in order “to build a class of informed advocates” who will take up the work that remains to be done. If you don’t have access to these kinds of trainings, there are a number of great sources available on the Internet or by telephone, including POZ.com. Look there for links to helpful resources.
Another way to give voice to the needs of people living with HIV is to get more involved with local service organizations. Most need volunteers. This can be an excellent way to learn about issues while contributing to the quality of services provided. Local HIV service planning bodies—Ryan White Planning Councils are a good example—are another way to contribute. A great ﬁrst step is to simply attend a meeting. Most HIV funding at the local level is controlled by planning bodies, which require input from the communities affected by the epidemic.
To ensure people in your community have accurate information about HIV treatments and that AIDS research considers their needs, attend free local HIV treatment educational forums at AIDS service organizations (ASOs) or universities. Also apply for scholarships to conferences and trainings run by the National Minority AIDS Council and the Black AIDS Institute, or join local advisory boards at clinics where AIDS research takes place.
For Justin B. Terry-Smith, activism meant starting a blog (justinshivjournal. blogspot.com). Terry-Smith says his blog is as much therapy as it is activism. “It has deﬁnitely helped me get a lot of stuff off my chest and open up to the world about HIV and how I have to deal with it,” he says. At its core, advocacy is about one simple thing—speaking truth to power. June Jordan, a black poet and activist, frequently talked about the healing effect of good advocacy. This is particularly poignant for people with HIV. In a 2000 interview with Essence magazine, she summed it up this way: “To tell the truth is to become beautiful, to begin to love yourself, value yourself. And that’s political, in its most profound way.”
Don’t Forget Your Advocates Annual Out! Checkup Speak “I was an activist before I was diagnosed, and I’m sure I’ll be an activist until the day I die. I hope that the work I do engenders greater compassion and dignity for all people with HIV, and that using my voice will help me feel free and help other people living with HIV be free.” Kali Lindsey, New York City Diagnosed in 2003 “Sometimes people in our community feel that it’s easier to just say, ‘Well, things are going to happen anyway, regardless of my input, so why bother.’ But historical evidence shows that activism and advocacy can bring about change. HIV can be so divisive, but I believe we can overcome all of that—that we have the resources, intelligence, strength, passion, diversity and faith in our community.” Larry Bryant, Washington, DC Diagnosed in 1986 “I’m an advocate because I want to prevent future cases of HIV and to give hope to those who are infected. I was diagnosed with HIV while pregnant with my daughter and had to overcome many challenges. It’s important to ﬁght the stigma surrounding the virus and to make it easier for others to do so.” Fortunata Kasege, Houston Diagnosed in 1997
Called to Action
hile exploring ways to lower the disproportionately high rates of HIV among African Americans, the Black AIDS Institute (BAI) made an astute observation. Community leaders were not provided with the support networks and scientiﬁc knowledge they needed to become motivated, successful advocates for HIV prevention and treatment. To ﬁll this void, this summer BAI created the Black Treatment Advocates Network (BTAN). The group has its work cut out for it. “Black Americans account for an estimated 50 percent of all people living with HIV and represent the largest group affected by HIV/AIDS, but they number among the least in care,” says Raniyah Abdus-Samad, a training and capacity building manager with the Black AIDS Institute. “[We knew we had to] mobilize African Americans to change the trajectory of the epidemic in our communities.” One of those communities is Philadelphia, rated among the 10 most populated cities in the United States. Philly also ranks high on the list of locations where African Americans are particularly hard hit by the HIV/AIDS epidemic. In a city where blacks make up roughly 43 percent of the population, almost 66 percent of those living with HIV in Philadelphia are black. And Philadelphia isn’t alone. Houston, the largest city in Texas and the fourth-largest city in the United States, has an HIV rate two times greater than the national average. African Americans comprise almost 50 percent of all people living with HIV/AIDS in the city, despite the fact that they are less than 25 percent of the city’s total population. Further southeast, in Mississippi—a state where African 14 REAL HEALTH FOCUS HIV & ADVOCACY
Americans make up only 37 percent of the state’s population—blacks represent an estimated 73 percent of the total number of people living with HIV and an estimated 77 percent of total new HIV cases in 2009. The list continues, but one question remains: What can we do about the numbers? In answer, the Black AIDS Institute proposed creating BTAN, a national program to provide existing community leaders with appropriate HIV/AIDS science literacy and treatment training. The goal? To engage and mobilize black communities in the ﬁght against HIV/AIDS. “BTAN’s goal is to create sustainable programs to give black people the tools to respond to the AIDS epidemic in their communities,” Abdus-Samad says. “We believe to do so, you must also create networks of advocates to strengthen local leadership and give them the skills they need to end the AIDS epidemic in black America.” So the institute partnered with Merck, a manufacturer of HIV pharmaceuticals, to create an advocate training program. But BTAN also Advocate wants to build a better bridge Cedric Sturdevant connecting black Americans is launching living with HIV/AIDS to a local HIV training quality care and treatment. program in To achieve this goal, Jackson, Miss. BTAN plans to meet several objectives: build a trained network of black HIV/AIDS advocates; strengthen local and national leadership; raise HIV/AIDS science literacy; increase awareness of HIV/AIDS clinical trials among people living with the virus, and solicit them to volunteer for those trials; boost the number of qualiﬁed black Americans who serve on scientiﬁc advisory boards; advocate for HIV policy change; and identify and mobilize more peer advocates and organizational leaders. Another huge BTAN objective is more psychological: Dispel myths in the black community about HIV/AIDS care. “There is a widespread distrust of medical institutions
When the Black AIDS Institute looked at the soaring national HIV infection rates among African Americans, the solution seemed clear: No one can save us but us. To start the rescue mission, the institute mobilized an army of black treatment advocates.
in black communities,” Abdus-Samad says. “This distrust stems from a legacy of mistreatment of black people by medical institutions. And though the most famous example may be the Tuskegee syphilis experiment, there are countless other instances.” These instances are what created myths regarding treatment and care, plus caused a lower level of science literacy, Abdus-Samad says. “Because we don’t trust the messenger, consequently we don’t trust the message being given.” In 2010, BTAN trained 100 black treatment advocates through pilot programs in three cities ravaged by HIV/ AIDS: Philadelphia, Houston, and Jackson, Mississippi. “All three cities have large black populations with high HIV prevalence rates,” Abdus-Samad says. “How the program works in these three pilot cities will also provide us with information as we move forward to expand the network in cities with similar epidemics.” To solicit advocates for the pilot programs, BTAN contacted local AIDS service organizations and community boards. Those accepted into the program participated in a week-long training session coordinated by the institute. Topics ranged from a basic HIV science review to HIV testing and diagnosis, treatment strategies, key challenges in HIV care, patient-provider relationships and community
mobilization. Participants also addressed the ways social issues and stigma inﬂuence treatment and care. Once pilot-program participants complete formal science and advocacy training from the institute and its partners, they will be tasked with pursuing BTAN’s agenda, previously outlined. These trained advocates from each city will then move forward with their own advocacy projects, creating resources to help patients and professionals stay informed and current on HIV treatment and science, local issues and advocacy skills, AbdusSamad explains. “Recruitment is very important for BTAN as this is a national movement working to change the HIV science and treatment landscape,” Abdus-Samad says. “We are planning to expand the network into a few more cities next year as well as expand the national network. This will allow interested people from any city to become part of BTAN.” The group plans to roll out these initiatives into other cities during the second half of 2011. “We are currently looking at numerous cities we think would be good locations for the 2011 expansion project,” Abdus-Samad says. “There is no right or wrong city to go into, but we want locations that will provide good lessons on how to continue our network’s growth.”
Paying It Forward
Four years ago, Cedric Sturdevant lay in a hospital bed fighting complications from AIDS. The experience profoundly changed his life. When he recovered, he became an HIV/AIDS advocate to help others affected by the virus. Jackson, Mississippi, where Cedric Sturdevant lives, is not a city where mobile HIV testing vans park outside gay clubs, condoms are distributed at barbershops and bars, or information on sexually transmitted infections, testing and prevention is plastered on walls. But Jackson is a city where HIV/AIDS infection rates among Mississippi youth are the eighth highest in the country. What’s more, between 2005 and 2009, Hinds County, Sturdevant’s home, had the highest number of new AIDS cases in the state. During the ﬁrst year that Hinds County’s rates soared, Sturdevant was diagnosed HIV positive. The next year, in 2006, he almost died from AIDS complications. His mom helped nurse him back to health. Shortly after his recovery, Sturdevant joined My Brother’s Keeper, a nonproﬁt founded to reduce health disparities among minorities and provide prevention information, care and treatment to people living with HIV and other diseases. He became a training facilitator and managed support groups, worked on community level interventions and listened to clients and their problems. He also ﬁelded phone calls from newly diagnosed young men with questions about HIV treatment and meds. Often, he was at a loss for words. “I would get phone calls from 18- and 19-year-old men. I wanted to be able to talk to them about the importance of treatment and how the disease works in the body to stop them from spreading HIV,” Sturdevant recalls. One day, while checking his e-mail, Sturdevant found an
application for the Black Treatment Advocates Network (BTAN), a new program created by the Black AIDS Institute. Sturdevant was amazed. BTAN offered everything he needed: basic and comprehensive science reviews, treatment options and advice on communicating with caregivers and patients. He signed up immediately. Sturdevant participated in a week-long training conducted by professionals in the ﬁeld that was tailored for Jackson’s black community. It focused on the low levels of science literacy and the prevalence of treatment myths and HIV stigma. For many advocates in the program, it was the ﬁrst time they’d received formal HIV training. After completing the program, Sturdevant returned to My Brother’s Keeper with a whole new understanding of the virus. Now, he was better equipped to do his job. Armed with manuals, websites, literature and an established network of other advocates, Sturdevant tackled HIV treatment, policy and prevention issues. Now, Sturdevant is launching a new program called the Treatment Academy. It will be a condensed version of BTAN training managed by BTAN grads. The program is for people living with HIV, caregivers and other advocates, and it will highlight the importance of treatment. “I’m glad I became involved,” Sturdevant says. “Next year, I’m looking forward to working with BTAN in Jackson, to get more educated. The more I do the work, the more I learn. I’ll be able to help people living with HIV, take care of them and help prevent the spread of the virus.”
HIV & ADVOCACY REAL HEALTH FOCUS 15
How to Be an Amazing HIVAdvocate
Your willingness to take action as an advocate could greatly influence your life—and those of millions of people living with HIV. You can attend meetings, sign petitions, make donations, call or write elected officials, volunteer at an AIDS service organization or attend rallies and demonstrations. Whatever your choice of action—Real Health encourages you to get involved— know that you can make a big difference. Below are some of the major HIV/AIDS advocacy groups. Visit their websites or give them a call to see how you can get involved.
AIDS Alliance for Children, Youth & Families 1600 K St., NW, Suite 200 Washington, DC 20006 202-785-3564 aids-alliance.org Established in 1994 to give voice to the needs of women, children, youth and families living with and affected by HIV/AIDS. Consider taking part in their Advocacy Day to meet your elected lawmakers and their health staffs. AIDS Policy Project 215-939-7852 aidspolicyproject.org This grassroots org, based in Philly and San Francisco, works hard to make sure researchers and our government stay focused on the cure. AIDS Treatment Activists Coalition (ATAC) 611 Broadway, Suite 613 New York, NY 10012 617-267-0998 atac-usa.org ATAC regularly meets with pharmaceutical companies to ensure the needs of people living with HIV/AIDS are ﬁrst and foremost. They also hold bootcamps to train treatment advocates. AIDS Vaccine Advocacy Coalition 119 W. 24th St., 7th Floor S. New York, NY 10011 212-367-1279 avac.org The last we checked, there’s still no vaccine for HIV. Hence, we really need these guys. Check out their “Take Action” page to get involved. Black Treatment Advocates Network(BTAN) Black AIDS Institute 1833 W. 8th St., Suite 200 Los Angeles, CA 90057 213-353-3610 blackaids.org An initiative through the Black AIDS Institute, BTAN trains and mobilizes treatment advocates.
16 REAL HEALTH FOCUS HIV & ADVOCACY
Its mission is to link black Americans living with HIV to care and treatment. Campaign to End AIDS (C2EA) 877-END-AIDS c2ea.org With a phone number like that, how can you resist calling? C2EA has several work groups— open to all—promoting advocacy strategies to end the HIV/AIDS epidemic in all communities. Center for HIV Law & Policy (CHLP) 65 Broadway, Suite 832 New York, NY 10006 212-430-6733 hivlawandpolicy.org Volunteer your time and skills to these defendersfor-truth. You will provide critical support to CHLP’s mission of securing the human rights of people affected by HIV. Communities Advocating Emergency AIDS Relief (CAEAR) Coalition P.O. Box 21361 Washington, DC 20009 202-789-3565 caear.org If you’re interested in advocating for federal policies to meet the care, treatment, support service and prevention needs of people living with HIV and the organizations that serve them, check out the “Take Action” page on CAEAR’s website. Gay Men’s Health Crisis (GMHC) 119 W. 24th St. New York, NY 10011 212-367-1000 gmhc.org One of the oldest HIV/AIDS organizations in the country is in constant need of new talent— and not necessarily “gay” or “men.” Visit the “volunteer” page of its website to learn more. GMHC’s annual AIDS Walk New York has raised more than $105 million for HIV programs and services in the tri-state area. Housing Works 57 Willoughby St., 2nd Floor Brooklyn, NY 11201 347-473-7400 housingworks.org Not only is Housing Works committed to ﬁghting the twin crises of HIV and homelessness, but
its New York City shops offer cute vintage clothes to boot (you can also shop online!). Plenty of opportunities to get involved here. International AIDS Vaccine Initiative (IAVI) 110 William St., 27th Floor New York, NY 10038-3901 212-847-1111 iavi.org IAVI’s mission is to ensure the development of safe, effective, accessible, preventive HIV vaccines for use throughout the world. Visit the “How to Help” section on IAVI’s website to make this mission possible. International Rectal Microbicides Advocates (IRMA) rectalmicrobicides.org No, IRMA is not just the name of your great aunt—it also stands for a collaboration of more than 1,000 advocates, policy makers and leading scientists from around the world searching for a rectal microbicide. National Minority AIDS Council (NMAC) 1931 13th St., NW Washington, DC 20009 202-483-6622 nmac.org Since 1987, NMAC has advanced its mission through a variety of public policy education programs, national conferences, training sessions and treatment and research programs— all of which need hands-on participation. Treatment Access Expansion Project (TAEP) 32 Sheridan St. Boston, MA 02130 617-390-2584 taepusa.org The only national organization whose mission focuses solely on improving access to care and treatment for low-income people with HIV/AIDS. Treatment Action Group (TAG) 611 Broadway, Suite 308 New York, NY 10012 212-253-7922 treatmentactiongroup.org These guys (and gals) know their HIV science and policy inside and out. Wherever major HIV (and TB and hepatitis) decisions are being made, TAG is there. Check out this TAG team and lend your support.
AIDS Action 1424 K St., NW, Suite 200 Washington, DC 2005 202-530-8030 aidsaction.org One of the nation’s leading HIV/AIDS policy organizations. Its mission states, “We will work until it’s over”—but the group can’t do it alone.
PLEASE TELL US WHAT YOU THOUGHT OF THIS REAL HEALTH FOCUS We’d like to know if this Real Health Focus was helpful to you. Please fill out the following survey and return it in the attached postage-paid envelope. Thank you for your feedback. 1
I read this Real Health Focus as…
❑ A person living with HIV/AIDS ❑ A health care or social service provider for people living with HIV/AIDS
❑ A family member, partner, friend or coworker
❑ Very likely ❑ Somewhat likely ❑ Not likely ❑ I am already involved in treatment access or
of someone living with HIV/AIDS
❑ Other: ____________________________ 2
After reading this Focus, has your understanding of the importance of patient empowerment and self-advocacy… ❑ Increased greatly
research advocacy efforts
❑ Increased slightly ❑ Stayed the same 3
stand my disease and my treatment options
❑ Seek out a case manager or social worker to
After reading this Focus, how likely are you to be tested or to encourage others to be tested for HIV?
After reading this Focus, has your desire to become a more active member of your HIV health care team… ❑ Increased greatly
❑ Increased slightly ❑ Stayed the same ❑ I am not HIV positive
If you are HIV positive, what will you do after reading this Focus? (Check all that apply.)
❑ Engage my health care provider to better underlearn about services that might be available to me
❑ Contact my local AIDS service organization to find out how I can help other people living with HIV
❑ Definitely likely ❑ Somewhat likely ❑ Not likely 4
After reading this Focus, how likely are you to become involved in advocacy efforts focusing on treatment research or access issues?
❑ Get involved with advocacy efforts that improve treatment and services for people living with HIV
❑ Give this Focus to another HIV-positive person ❑ I am not HIV positive 9
Please rate the overall quality of this Real Health Focus:
❑ Excellent ❑ Fair
❑ Good ❑ Poor
10 When were you born? 19____
After reading this Focus, has your interest in learning more about HIV treatment, including how it works and what options are available…
❑ Increased greatly ❑ Increased slightly ❑ Stayed the same 6
After reading this Focus, how likely are you to become more involved in your local community, or to help empower other people living with HIV so they can better advocate for themselves?
❑ Very likely ❑ Somewhat likely ❑ Not likely ❑ I am already involved in peer-support programs in my community
What is your gender?
❑ Male ❑ Female
❑ Transgender ❑ Other
12 What is your sexual orientation?
❑ Straight ❑ Bisexual
❑ Gay/lesbian ❑ Other
13 What is your ethnicity? (Check all that apply.)
❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other: ________________
Please fill out this confidential survey at realhealthmag.com or mail it to: Smart + Strong, ATTN: Real Health Focus Survey, 462 Seventh Avenue, 19th Floor, New York, NY 10018
The Well-Traveled Road Ahead: A Basic Guide to HIV Care
While no two people living with HIV are the same, experts know enough about the virus and its treatment to make basic health care recommendations, especially for those who are newly diagnosed and haven’t yet started taking meds. This poster reviews what can be expected for people starting their HIV journey. The chart is based on treatment guidelines from the U.S. Department of Health and Human Services (DHHS), the federal agency that oversees health care policy for people living with HIV/AIDS in the United States.
HIV POSITIVE? GET CARE AND SUPPORT
Surviving and thriving with the virus means teaming up with an HIV-experienced health care provider. You should see your provider every three to four months for physical exams and important blood tests including:
Everyone should know his or her HIV status. About 1 in 5 people living with HIV isn’t aware of having it. If you haven’t been tested for HIV, do it. And tell your friends and family to get tested too.
● CD4 cell counts: Keeps track of the number of CD4s (sometimes called T cells). A normal
count is between 500 and 1,500. Your CD4s are a type of white blood cell that fights infections, and your CD4 count shows how healthy your immune system is. Your CD4 count should be kept as high as possible!
STAY NEGATIVE Use condoms and don’t share needles—it’s that easy. Check out AIDSmeds.com for more info on how to stay HIV negative. And when in doubt, test!
Viral load: Measures the amount of HIV in your blood. Viral load should be kept as low as possible.
Drug-resistance testing: Shows if a person’s HIV won’t respond to certain meds.
Chem screen: Measures important chemicals in the blood. It monitors the health of major organs in the body (such as the liver and kidneys) that can be affected by HIV, other infections or medications.
If you can’t afford care or if you need other financial assistance, ask for help from a case manager or social worker at your clinic or AIDS service organization. There are federal and state programs to help cover the costs of care and treatment, along with housing and food.
The ultimate goal of HIV treatment is to stop HIV from reproducing in your body. This protects your immune system and helps keep you healthy and alive longer. Many studies have proved that HIV meds work, but it’s a partnership. You will rely on your meds to be safe and effective, and your meds will rely on you to take them correctly on time—every time—so that they can best protect your health. Here are some questions to ask your health care provider when choosing HIV meds (an HIV combo): ●
Potency: Is the combo powerful enough to fight my virus and keep my viral load undetectable?
Safety: What kind of side effects will the meds have? How will they affect my overall health now and in the future?
Convenience: How many pills, taken how many times a day?
Works well with others: Do they interact with other meds I’m taking?
WHAT TO WATCH FOR
There’s no “right” or “wrong” time to start HIV treatment. It depends on a few things, including your mental readiness to take pills every day—without skipping doses. But there are a few key health factors to watch for. According to the DHHS, any of the following are grounds for recommending HIV therapy: ● You
have serious symptoms of HIV infection or an AIDS-related health problem
Your CD4 count is below 500 (especially below 350)
You have HIV-related kidney disease (nephropathy)
You require treatment for hepatitis B
WHICH PILLS? OR a Norvir-boosted protease inhibitor (PI) plus two NRTIs. The DHHS has designated some HIV drugs “preferred” choices. These are the ones you and your health care provider will want to consider using first, based on studies that show they are powerful, long-lasting, tolerable (fewer side effects) and easy to use. Here they are, in alphabetical order, by drug class:
2 daily +
There are five classes of HIV meds; each one attacks the virus at different stages. Docs recommend taking a combination of meds. For HIV-positive people starting HIV treatment for the first time, a typical combo contains: An integrase inhibitor plus two nucleoside reverse transcriptase inhibitors (NRTIs), OR a non-nucleoside reverse transcriptase inhibitor (NNRTI) plus two NRTIs, INTEGRASE INHIBITOR-BASED REGIMEN
Isentress (raltegravir) and Truvada (tenofovir + emtricitabine)
Atripla (efavirenz + tenofovir + emtricitabine)*
PROTEASE INHIBITOR-BASED REGIMEN
Prezista (darunavir) and low-dose Norvir (ritonavir) and Truvada (tenofovir + emtricitabine)
Reyataz (atazanavir)and low-dose Norvir (ritonavir) and Truvada (tenofovir + emtricitabine)
PREFERRED REGIMEN FOR PREGNANT WOMEN
Kaletra (lopinavir + ritonavir) and Combivir (zidovudine + lamivudine) *Women in the first trimester of pregnancy or likely to become pregnant should not use Atripla.
Source: Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents
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Be Greater Than AIDS www.BlackAIDS.org
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. Introducing the Savings Coupona for ISENTRESS. Eligibility restrictions, terms, and conditions apply.a To find out more, call 1-866-350-9232 or 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.
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