Budget Woes: How the Cuts May Affect HIV Healthcare • Take the HIV Primary Care Survey
MAY 2013 • ISSUE 223 • AMErIcA’S AIDS MAgAzInE
Community Arts Mary Fisher Gets a Bead on Empowerment
Mom Knows Best Justin B. Terry-Smith Celebrates Mother’s Day
Duane Cramer Focuses on a Positive Agenda
$3.95 USA • $4.95 CANADA
What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. It combines 4 medicines into 1 pill to be taken once a day with food. STRIBILD is a complete single-tablet regimen and should not be used with other HIV-1 medicines. STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects: t Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. t Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include 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, and/or stomach pain. t You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.
t Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse. Do not stop taking STRIBILD without first talking to your healthcare provider, as they will need to monitor your health. STRIBILD is not approved for the treatment of HBV. Who should not take STRIBILD? Do not take STRIBILD if you: t Take a medicine that contains: alfuzosin, dihydroergotamine, ergotamine, methylergonovine, cisapride, lovastatin, simvastatin, pimozide, sildenafil when used for lung problems (Revatio®), triazolam, oral midazolam, rifampin or the herb St. John’s wort. t For a list of brand names for these medicines, please see the Brief Summary on the following pages. t Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera®). What are the other possible side effects of STRIBILD? Serious side effects of STRIBILD may also include: t New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD. t Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. t Changes in body fat can happen in people taking HIV-1 medicines. t Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.
What should I tell my healthcare provider before taking STRIBILD? t All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection. t 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. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking STRIBILD without first talking with your healthcare provider. t If you take hormone-based birth control (pills, patches, rings, shots, etc). t If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD. t If you 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. t If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby. 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 see Brief Summary of full Prescribing Information with important warnings on the following pages.
STRIBILD is a prescription medicine used as a complete single-tablet regimen to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD does not cure HIV-1 or AIDS.
I started my personal revolution Talk to your healthcare provider about starting treatment. STRIBILD is a complete HIV-1 treatment in 1 pill, once a day.
Ask if itâ€™s right for you.
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the stigma Saturday
M May ay 4, 2 2013 013 Gateway Village
Sponsor ponsored ed by by
MANY LIVES. ONE R ROAD. OAD. O AD. W WALK ALK T TOGETHER. OGETHER.
regional aids interfaith network
c o n t e n t s May 2013 32 Cover Lending His Voice to the I Design Campaign, Photographer and Activist Duane Cramer Talks with A&U’s Sean Black About Drawing on His Family’s Legacy in Order to Help Nurture a World Where We All Take Care of Each Other
The Beauty in Humanity:
Duane Cramer Creates a Visual
Dialogue Between Past & Present in Order to Expand Our Possible Futures 26 viewfinder 30 About Face
Activist Mary Fisher Continues
20 Left Field
to Find a Sense of Empower-
Just*in Time by Patricia Nell Warren
ment in Art, Both for Herself
and Others 16 Ruby’s Rap
At the Base of Sydney Harbour’s lifeguide
BridgeClimb, Ruby Comer 38
raps with Australian Advocate
40 Hep Talk
42 The Culture of AIDS 44 Lifelines
24 Poetry The Valiant Ones by Afzal Moolla
cover photo by Stephen Churchill Downes; Ruby photo courtesy BridgeClimb Sydney
48 The Scene
( A&U frontdesk )
Mother & Child Reunion A M E r I c A’ S A I D S M A g A z I n E
ayhem is a better word for May, the way I look at it. Mayhem from the stresses of living in an uncertain, unsafe world. What with the aftermath of the Boston bombings and the rising cases of a new strain of bird flu coming out of China...life is stressful! One looks to family to take the stress out of life. And mothers, in particular, for the way they accept us for who we are. Mother’s Day has always been a bittersweet event on my calendar. It’s because whenever it comes around, I feel guilty for all the years that I didn’t tell my mother about my HIV infection. Keeping it from Mom—who, at the age of seventy-eight, still volunteers as a grantwriter for a Southern California science foundation that furthers the careers of young scientists—was disrespectful at best and reckless at worst. After all, isn’t it our mothers who give us life, change our diapers, take our temperatures and give us Children’s Tylenol when we’re not feeling well? How many young men and women stay in the HIV closet far longer than they need to? No studies have been done about this phenomenon, but it’s worth noting that the HIV closet need not exist in the first place. Coming out of the HIV closet was a slow and grueling process for me; one far more difficult than publishing this magazine. The stigma that continues to surround AIDS also surrounds entire families. How many children hide in the medical closet if they happen to have cancer, leukemia, or any other “socially acceptable” form of illness? I suspect very few; I cite two of my sisters who had breast cancer, and they felt no need to hide their ailments. Everyone they knew and who loved them offered their support. Sadly, my sister Cindy died from cancer. But my other sister, Beth, is thriving and raising three beautiful children. Her strength gives me strength. But AIDS and HIV infection continue to carry an almost irreversible form of stigma. When Lady Gaga sings “Born This Way,” she
is, of course, referring to lesbians and gays being born with their sexual preference. But when it comes to having HIV, it is not, unfortunately, so blame-free in our culture. See for example Tyler Perry’s scandalous new movie, Tyler Perry’s Temptation, which squarely places blame on the person, rather than the virus. It is an awkward moment for Mr. Perry—hopefully he will help reduce AIDS stigma in his future film projects. Many Americans love his work but I would hate to see his own insensitivity to persons living with HIV replicated in his audiences. This is a role model we don’t need: to give permission to millions to look upon HIV infection as a self-destructive choice, rather than the medical condition that it is. Speaking of living with a life-threatening but also life-affirming disease such as HIV/AIDS, let’s not overlook the power of the photographic image. In this month’s cover story, photographer and activist Duane Cramer speaks to A&U’s Sean Black about how a picture can dispel a thousand myths: “At the time of my father’s death [from AIDS complications] the stigma, the shame and the guilt that I felt—it really silenced me, and it silenced my sisters and my mother too and it wasn’t until I became HIV-positive myself that I was really able to face my responsibility to talk to people [through my photography] about this disease.” Others have been energized by families, too. Justin B. Terry-Smith’s column celebrates the fact that those living with HIV can find new “mothers,” who will support and accept them in their search for health and happiness. In Chip Alfred’s interview with Mary Fisher, the artist and advocate expresses how learning about her positive status deepened her sense of motherhood. Now she is helping women in Zambia impacted by HIV, many of them mothers, along the route to empowerment. Let’s take a cue from Duane Cramer and create a family portrait that includes us all.
issue 223 vol. 22 no. 5 May 2013 editorial offices: (518) 426-9010 fax: (518) 436-5354
Editor in Chief & Publisher David Waggoner Managing Editor: Michael Needle Senior Editor: Dann Dulin Editors at Large: Chip Alfred, Sean Black Special Projects Editor: Lester Strong Literary Editor: Brent Calderwood Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, V. Anderson, Annie Buckley, Larry Buhl, Ruby Comer, Robert Dunbar, Nancy Ellegate, Diane Goettel, Sherri Lewis, Angela Leroux-Lindsey, Suzy Martin, Alina Oswald, Dale Reynolds, Elizabeth Rodgers, Mariel Selbovitz, Patricia Nell Warren, Jeannie Wraight Art Director: Timothy J. Haines Design Director: Mark Crescent Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Tim Courtney, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Tom McGovern, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 Chris Companik, 1957–2012 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: email@example.com. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2013 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. POSTMASTER: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA
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Letters to the Editor
“I admire and respect Anna Deavere Smith; she has accomplished much in her life.…Anna in your story says, ‘I think people still think HIV/AIDS is a disease for marginal people: gay people, drug abusers, black people, poor people, and prostitutes. And people who are not in those minorities probably don’t want to come forward and say, ‘I’m positive.’ They don’t want to do it because it’s not a good image.’ Well said!”
I admire and respect Anna Deavere Smith [cover story, “Transformative Art,” by Dann Dulin, March 2013]; she has accomplished much in her life. She has quite the résumé. Actress, writer, and educator, she is sort of a nurse, like her character on Nurse Jackie. She goes to Africa to connect with people living with HIV/AIDS and educate about AIDS. Anna in your story says, “I think people still think HIV/AIDS is a disease for marginal people: gay people, drug abusers, black people, poor people, and prostitutes. And people who are not in those minorities probably don’t want to come forward and say, ‘I’m positive.’ They don’t want to do it because it’s not a good image.” Well said! —Varly Matson Melbourne, Florida I saw Anna Deavere Smith in her one woman show, Let Me Down Easy. It was quite
Female Trouble The issue of the female condom is just burning me up [“Condoms 4 All,” by Chael Needle, March 2013]. As a woman I just don’t understand why women in America are not using condoms to protect themselves. This seems to be a non-issue among women in this country. I can’t speak for other countries. All sexually transmitted diseases are way up, so many women are infected. Also unwanted pregnancies are way up. To me it makes common sense for every woman to use a female condom; don’t expect the man to do everything. Because he won’t. Anyway, maybe Universal Access To Female Condoms will achieve some success. I totally support the Paper Doll campaign. Come on, women, let’s get with the program. —Doris Reinhart Arkadelphia, Arkansas
Neighborly Love Rosanne Cash seems to be a lovely and caring person [“Playing the Field,” by Dann Dulin, March 2013]. I just love her music, a true talent if ever there was one. The apple didn’t fall far from the tree. It’s so lovely the way she talks about Jim and George, her two gay neighbors [who inspired her song]. Rosanne’s support for the People Living with AIDS Project at The Church of St. Luke in the Fields is very inspiring and very wonderful. I never knew about this church and its programs, but I will make a special effort to support its work. I just love Rosanne for the person she is. Thank you for a very beautiful and inspiring story. —Rose Cantanucci Great Neck, New York Send e-mail to: firstname.lastname@example.org Send letters to: Mailbox, A&U, 25 Monroe Street, Suite 205, Albany, NY 12210 Or click on “Mailbox” on our Web site’s home page: www.aumag.org All correspondence requires name, address, and daytime phone number for confirmation. Letters may be edited for length and clarity.
photo by Mary Ellen Mark
A Woman of Character
the bravura performance—her doing all those characters. The woman has quite the range in acting abilities. I am very impressed that she is out there educating people about HIV and AIDS. She is a true artist and humanitarian. —Sinclair Robideaux Spokane, Washington
B NewsBreak N HEADLINES On the Ground & Running What happens when the world’s largest youth-focused HIV and AIDS awareness and prevention campaign and the world’s largest condom brand, which has made sexual health and sexual well being an essential part of its work for more than eighty years, join forces? A world of difference! The MTV Staying Alive Foundation and Durex recently announced a multi-year collaboration to inspire youth around the world to take charge of their sexual health through creating and supporting innovative programs that seek to achieve an HIV-free generation and revolutionize sex education. Through “On the Ground,” Durex will help sustain ten of the current Staying Alive grantee projects in Latin America, Europe, Asia, and Africa by providing financial and mentoring and training support. Some of the grantees include: Dove Foundation—India (Varanasi, Uttar Pradesh): This foundation reaches out to rickshaw pullers, training them as peer educators, and promoting behavior change through this “street team” via stickers, T-shirts, and flags bearing safer sex messages. It is also starting training students as peer educators in high schools. Youth Advocates Zimbabwe (YAZ)—Zimbabwe (Chitungwiza): Every year, YAZ trains twenty young people in schools to become community peer educators, who use drama and music to educate about abstinence and consistent condom use. Peer educators also raise HIV/AIDS awareness through the arts while distributing fliers and pamphlets at three locations every month, among other activities such as regular sex worker outreach, condom distribution, and a sexual health speaking competition once a year. Jovenes Promotores por la VIH de Guadalajara—Mexico (Guadalajara): This organization is gearing up for the project, “5 Ways to Love Yourself.” Aimed at young people, the primary message of the project will center around “being able to make decisions on your sex life, having a relationship with one person, ways to have sexual pleasure safely, protected sex and getting tested for HIV.” The project will be produced by eighteen design and communication students and make use of a wide variety of media, including radio spots and apps. Youth Theatre Light—Russia (Samara): Youth Theatre Light will train theater professionals in their regions about integrating HIV prevention and the dramatic arts, among other activities. Queer Alliance—Nigeria (Delta State): Queer Alliance’s “Helping Ourselves Together” (HOT) project expands already established activities. Plans have been mapped out to expand the MSM peer educators’ network to two main cities within Delta State—the capital of Asaba and the college town of Abraka—so that information about HIV prevention and treatment is more accessible and available. Also planned: HIV and sexual health literacy sessions for up to 300; an open house (learning circles) HIV and sexual health workshop for up to 500 MSMs; training of fifteen peer educators; a training workshop on sexuality, rights and HIV for twenty HIV Counseling and Testing (HCT) counselors with the aim to address stigma and condom distribution. Other grantees are located in Belgium, Kenya, Cambodia, Indonesia, and Kerala, India. Another fruit of this collaboration is “Revolutionize Sex Education,” a youth engagement and education program that will make use of multiple platforms including documentary film, PSAs, and a Web site. For more information, log on to www.stayingalivefoundation.org.
Patient model. Pill shown is not actual size.
What is COMPLERA? ®
COMPLERA is a prescription HIV medicine that is used as a complete regimen to treat HIV-1 in adults who have never taken HIV medicines before and who have an amount of HIV in their blood (this is called “viral load”) that is no more than 100,000 copies/mL. COMPLERA contains 3 medicines – rilpivirine, emtricitabine and tenofovir disoproxil fumarate. It is not known if COMPLERA is safe and effective in children under the age of 18 years. COMPLERA® does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. Avoid doing things that can spread HIV-1 to others: always practice safer sex and use condoms to lower the chance of sexual contact with body fluids; never reuse or share needles or other items that have body fluids on them, do not share personal items that may contain bodily fluids. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others.
IMPORTANT SAFETY INFORMATION What is the most important information you should know about COMPLERA? COMPLERA® can cause serious side effects: tBuild-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold, especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. tSerious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include 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, and/or stomach pain. tYou may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. tWorsening of hepatitis B (HBV) infection. If you also have HBV and stop taking COMPLERA, your hepatitis may suddenly get worse. Do not stop taking COMPLERA without first talking to your healthcare provider, as they will need to monitor your health. COMPLERA is not approved for the treatment of HBV.
Who should not take COMPLERA? Do not take COMPLERA if you have ever taken other anti-HIV medicines. COMPLERA may change the effect of other medicines and may cause serious side effects. Your healthcare provider may change your other medicines or change their doses. Do not take COMPLERA if you also take these medicines: tanti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek) tanti-tuberculosis medicines: rifabutin (Mycobutin), rifampin (Rifater, Rifamate, Rimactane, Rifadin) and rifapentine (Priftin) tproton pump inhibitors for stomach or intestinal problems: esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), dexlansoprazole (Dexilant), omeprazole (Prilosec), pantoprazole sodium (Protonix), rabeprazole (Aciphex) tmore than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate tSt. John’s wort (Hypericum perforatum) If you are taking COMPLERA you should not take other HIV medicines or other medicines containing tenofovir (Viread, Truvada, Stribild or Atripla); other medicines containing emtricitabine or lamivudine (Emtriva, Combivir, Epivir, Epivir-HBV, Epzicom, Trizivir, Atripla, Stribild or Truvada); rilpivirine (Edurant) or adefovir (Hepsera). In addition, tell your healthcare provider if you are taking the following medications because they may interfere with how COMPLERA works and may cause side effects: tcertain antacid medicines containing aluminum, magnesium hydroxide, or calcium carbonate (examples: Rolaids, TUMS). These medicines must be taken at least 2 hours before or 4 hours after COMPLERA. tmedicines to block stomach acid including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine HCL (Zantac). These medicines must be taken at least 12 hours before or 4 hours after COMPLERA. tany of these medicines: clarithromycin (Biaxin); erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone), fluconazole (Diflucan), itraconazole (Sporanox), ketoconazole (Nizoral) methadone (Dolophine); posaconazole (Noxifil), telithromycin (Ketek) or voriconazole (Vfend). tmedicines that are eliminated by the kidneys like acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex) and valganciclovir (Valcyte).
A complete HIV treatment in only 1 pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and have no more than 100,000 copies/mL of virus in their blood.
Ask your healthcare provider if itâ€™s the one for you.
These are not all the medicines that may cause problems if you take COMPLERA. Tell your healthcare provider about all prescription and nonprescription medicines, vitamins, or herbal supplements you are taking or plan to take.
The most common side effects reported with COMPLERA are trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Some side effects also reported include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles) and pain.
Before taking COMPLERA, tell your healthcare provider if you: liverproblems, including hepatitis B or C virus infection, or have abnormal liver tests tHave kidney problems tHave ever had a mental health problem tHave bone problems tAre pregnant or planning to become pregnant. It is not known if COMPLERA can harm your unborn child tAre breastfeeding: Women with HIV should not breastfeed because they can pass HIV through their milk to the baby. Also, COMPLERA may pass through breast milk and could cause harm to the baby
This is not a complete list of side effects. Tell your healthcare provider or pharmacist if you notice any side effects while taking COMPLERA, and call your healthcare provider for medical advice about side effects.
COMPLERA can cause additional serious side effects: or worsening kidney problems, including kidney failure. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may need to do regular blood tests. tDepression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself. tChanges in liver enzymes: People who have had hepatitis B or C, or who have had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may need to check your liver enzymes before and during treatment with COMPLERA. tBone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do additional tests to check your bones. tChanges in body fat can happen in people taking HIV medicine. tChanges in your immune system. 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 if you start having new symptoms after starting COMPLERA. tNew
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088. Additional Information about taking COMPLERA: tAlways take COMPLERA exactly as your healthcare provider tells you to take it. tTake COMPLERA with a meal. Taking COMPLERA with a meal is important to help get the right amount of medicine in your body. (A protein drink does not replace a meal). Stay under the care of your healthcare provider during treatment with COMPLERA and see your healthcare provider regularly. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.
Learn more at www.COMPLERA.com
Brief Summary of full Prescribing Information
COMPLERA (kom-PLEH-rah) (emtricitabine, rilpivirine, tenofovir disoproxil fumarate) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information including Patient Information. What is COMPLERA? t
COMPLERA is a prescription HIV (Human Immunodeficiency Virus) medicine that is used to treat HIV-1 in adults – who have never taken HIV medicines before, and – who have an amount of HIV in their blood (this is called ‘viral load’) that is no more than 100,000 copies/mL. Your healthcare provider will measure your viral load.
(HIV is the virus that causes AIDS (Acquired Immunodeficiency Syndrome)). t
COMPLERA contains 3 medicines – rilpivirine, emtricitabine, tenofovir disoproxil fumarate – combined in one tablet. It is a complete regimen to treat HIV-1 infection and should not be used with other HIV medicines.
It is not known if COMPLERA is safe and effective in children under the age of 18 years old.
COMPLERA does not cure HIV infection or AIDS. You must stay on continuous therapy to control HIV infection and decrease HIV-related illnesses.
Ask your healthcare provider if you have any questions about how to prevent passing HIV to other people. Do not share or re-use needles or other injection equipment, and do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal fluids or blood.
Who should not take COMPLERA? Do not take COMPLERA if: t your HIV infection has been previously treated with HIV medicines. t
you are taking any of the following medicines: – anti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal); phenobarbital (Luminal); phenytoin (Dilantin, Dilantin-125, Phenytek) – anti-tuberculosis (anti-TB) medicines: rifabutin (Mycobutin); rifampin (Rifater, Rifamate, Rimactane, Rifadin); rifapentine (Priftin) – proton pump inhibitor (PPI) medicine for certain stomach or intestinal problems: esomeprazole (Nexium, Vimovo); lansoprazole (Prevacid); dexlansoprazole (Dexilant); omeprazole (Prilosec, Zegerid); pantoprazole sodium (Protonix); rabeprazole (Aciphex) – more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate – St. John’s wort (Hypericum perforatum)
If you take COMPLERA, you should not take: – Other medicines that contain tenofovir (Atripla, Stribild, Truvada, Viread)
What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects, including: t Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take COMPLERA 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 (feeling sick to your stomach) or vomiting – feel cold, especially in your arms and legs
– Other medicines that contain emtricitabine or lamivudine (Combivir, Emtriva, Epivir or Epivir-HBV, Epzicom, Trizivir, Atripla, Truvada, Stribild) – rilpivirine (Edurant) – adefovir (Hepsera) What should I tell my healthcare provider before taking COMPLERA? Before you take COMPLERA, tell your healthcare provider if you: t have or had liver problems, including hepatitis B or C virus infection, kidney problems, mental health problem or bone problems t
– feel dizzy or lightheaded Severe liver problems. Severe liver problems can happen in people who take COMPLERA. 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)
are breast-feeding or plan to breast-feed. You should not breastfeed if you have HIV because of the risk of passing HIV to your baby. Do not breastfeed if you are taking COMPLERA. At least two of the medicines contained in COMPLERA can be passed to your baby in your breast milk. We do not know whether this could harm your baby. Talk to your healthcare provider about the best way to feed your baby.
– loss of appetite for several days or longer
Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements.
– stomach pain t
are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child. 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 to your healthcare provider about how you can take part in this registry.
– have a fast or irregular heartbeat t
Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take COMPLERA, your HBV may get worse (flare-up) if you stop taking COMPLERA. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV with your healthcare provider. – Do not let your COMPLERA run out. Refill your prescription or talk to your healthcare provider before your COMPLERA is all gone. – Do not stop taking COMPLERA without first talking to your healthcare provider. – If you stop taking COMPLERA, your healthcare provider will need to check your health often and do blood tests regularly to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking COMPLERA.
You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time.
COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works, and may cause serious side effects. If you take certain medicines with COMPLERA, the amount of COMPLERA in your body may be too low and it may not work to help control your HIV infection. The HIV virus in your body may become resistant to COMPLERA or other HIV medicines that are like it.
Especially tell your healthcare provider if you take: t an antacid medicine that contains aluminum, magnesium hydroxide, or calcium carbonate. If you take an antacid during treatment with COMPLERA, take the antacid at least 2 hours before or at least 4 hours after you take COMPLERA. t
a medicine to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). If you take one of these medicines during treatment with COMPLERA, take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA. any of these medicines (if taken by mouth or injection): – clarithromycin (Biaxin) – erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone) – fluconazole (Diflucan) – itraconazole (Sporanox) – ketoconazole (Nizoral) – methadone (Dolophine) – posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend)
medicines that are eliminated by the kidney, including acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex), and valganciclovir (Valcyte)
The most common side effects of COMPLERA include: t
trouble sleeping (insomnia)
Additional common side effects include: t
stomach pain or discomfort
skin discoloration (small spots or freckles)
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 COMPLERA. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 (1-800-332-1088).
What are the possible side effects of COMPLERA?
How should I take COMPLERA?
COMPLERA can cause serious side effects, including: t See “What is the most important information I should know about COMPLERA?”
Stay under the care of your healthcare provider during treatment with COMPLERA.
Take COMPLERA exactly as your healthcare provider tells you to take it.
Always take COMPLERA with a meal. Taking COMPLERA with a meal is important to help get the right amount of medicine in your body. A protein drink does not replace a meal.
Do not change your dose or stop taking COMPLERA without first talking with your healthcare provider. See your healthcare provider regularly while taking COMPLERA.
If you miss a dose of COMPLERA within 12 hours of the time you usually take it, take your dose of COMPLERA with a meal as soon as possible. Then, take your next dose of COMPLERA at the regularly scheduled time. If you miss a dose of COMPLERA by more than 12 hours of the time you usually take it, wait and then take the next dose of COMPLERA at the regularly scheduled time.
Do not take more than your prescribed dose to make up for a missed dose.
New or worse kidney problems, including kidney failure, can happen in some people who take COMPLERA. Your healthcare provider should do blood tests to check your kidneys before starting treatment with COMPLERA. If you have had kidney problems in the past or need to take another medicine that can cause kidney problems, your healthcare provider may need to do blood tests to check your kidneys during your treatment with COMPLERA. Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: – feeling sad or hopeless – feeling anxious or restless – have thoughts of hurting yourself (suicide) or have tried to hurt yourself
Change in liver enzymes. People with a history of hepatitis B or C virus infection or who have certain liver enzyme changes may have an increased risk of developing new or worsening liver problems during treatment with COMPLERA. Liver problems can also happen during treatment with COMPLERA in people without a history of liver disease. Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with COMPLERA.
Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do additional tests to check your bones.
Changes in body fat can happen in people taking HIV medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the main part of your body (trunk). Loss of fat from the legs, arms and face may also happen. The cause and long term health effect 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. Tell your healthcare provider if you start having new symptoms after starting your HIV medicine.
This Brief Summary summarizes the most important information about COMPLERA. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about COMPLERA that is written for health professionals, or call 1-800-445-3235 or go to www.COMPLERA.com Issued: January 2013
COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE 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. ©2013 Gilead Sciences, Inc. All rights reserved. CPAC0023 03/13
AIDS in New York: The First Five Years Speaking before Congress in 1984, months before he died of AIDS-related complications, Roger Gail Lyon stated: “I came here today with the hope that this administration would do everything possible, make every resource available—there is no reason this disease cannot be conquered. We do not need infighting, this is not a political issue. This is a health issue. This is not a gay issue. This is a human issue. And I do not intend to be defeated by it. I came here today in the hope that my epitaph would not read that I died of red tape.” From June 7–September 15, 2013, the New-York Historical Society will present an exhibition entitled “AIDS in New York: The First Five Years” and offer a stunning array of the history, from the first rumblings of a “gay plague” to the stepped-up efforts from activists, clinical researchers, and policymakers. Drawing from the archives of the New-York Historical Society as well as the New York Public Library, New York University, and the National Archive of LGBT History, the exhibition will display everything from clinicians’ notes and diaries to video clips and pamphlets. Roger Gail Lyon’s quilt panel is also one of the artifacts. “For those who lost partners, children, siblings, parents, and friends, the memory of the fear and mystery that pervaded New York at the beginning of the AIDS epidemic remains vivid,” said curator Jean S. Ashton in a prepared press release. “For many people today, though, these years are now a little-understood and nearly forgotten historical period. Yet the trajectory of HIV/AIDS changed paradigms in medicine, society, politics, and culture in ways that are still being felt, and the disease remains with us, affecting some 100,000 New Yorkers and more than one million Americans today. This exhibition explores a history that we continue to live.” The exhibition will follow a timeline segmented into three sections, from a vision of New York in the pre-AIDS period, energized by the artistic and sexual freedom post-Stonewall, through the burgeoning anger and frustration that gave birth to the ACT UP movement later on. A companion photography exhibition, “Children With AIDS: 1990-2000,” will feature thirty black-and-white photographs by Claire Yaffa from her collection, The Changing Face of Children with AIDS. Other public programs are being developed by New-York Historical to take place concurrently with its exhibition. For more information, log on to www.nyhistory.org.
HIV Primary Care Survey This is a critical time for people living with HIV/AIDS to share their opinions and perspective on the changing healthcare delivery landscape and its impact on HIV care and treatment. Healthcare reform (the Affordable Care Act) and the President’s National HIV/AIDS Strategy are driving the way we access healthcare and approach HIV prevention, care and treatment. HealthHIV’s survey seeks to gain the perspective of the positive community and will be used to inform our advocacy and education efforts. As a nonprofit organization, HealthHIV advances effective prevention, care and support for people living with, or at risk for, HIV/AIDS by providing education, capacity building, health services research, and advocacy to organizations, communities and professionals. Your input is important in shaping the response to HIV care delivery. This survey should take approximately ten minutes to complete. Thank you in advance for your participation. To take the survey, log on to: https://www.surveymonkey.com/s/ZQQDHJQ.
’day, me mate!” declares an everso-affable voice as I enter Cambridge Hotel in the Surry Hills section of Sydney, Australia. It’s Raj Patel, guest relations officer, and he pleasantly grabs the suitcase out of my hands. Whew, the older I get the more makeup I need—thus my bags get heavier and heavier! This place is conveniently located just off Hyde Park and its contemporary lobby is highlighted with vivid energetic secondary colors. After check-in, Raj and I ride the petite elevator, which sports hypnotic neon lights at its baseboard. They change colors through muted Plexiglas. Anyone for disco?! We arrive on the thirteenth floor and he flings open the door to my grand homey suite with all the comforts. There’s a balcony that has a breathtaking city view to kill for as one sips a glass of Bordeaux! Once settled, I call me ol’ Aussie friend, Steve Bloom. Steve has quite a story. He was married to a woman for twenty years, had two daughters, and is now partnered with a man, Jason. He’s currently writing about this emotional experience and in the meantime, he facilitates a support group for men in heterosexual relationships who are coming to terms with their same-gender attraction. In the group they deal with many issues surrounding coming out, married life, and HIV issues as well. Steve is also an active participant in AIDS fundraisers, and regularly volunteers for Montefiore Home, an aged care
provider. Though his career has been in IT, he’s presently making a move toward being a life coach, while taking courses developed by Anthony Robbins and Cloé Madanes. After I visit the Australian Federation of AIDS Organizations (AFAO) and OzHarvest, which rescues food from hotels, retailers, and restaurants to help feed the hungry, Steve suggests I meet him in the lobby/cafe of BridgeClimb, in The Rocks area of Sydney. I had no idea what I was in store for. Ruby Comer: [We greet, and, as we sit down at a tiny table, Steve smacks down a ticket before me—a pass to CLIMB the Sydney Harbour Bridge! I’m flabbergasted and shout.] You want me to climb…what? Steve Bloom: Ruby Comer, trust me, this will be an exciting adventure. I know you’re afraid of heights, but believe me, you’re hooked in all the time and it’s a slow progression until you actually get to the top. I’m going to the…top…?! Oy vey. [I shake my head as my eyes rise to the ceiling.] Okay…[I could never refuse an escapade with a man.] Let’s get a bite to eat first. Since we have about forty-five minutes until the next tour we munch on a chicken, avocado, and lettuce sandwich with soda water.
Cambridge Hotel, Sydney, Australia
Tell me about your support group, Steve. I think you
mentioned that you’re now president of the group, right? Yes I am. It’s called GAMMA (Gay And Married Men’s Association) and the group is supported by ACON (AIDS Council of New South Wales). We have regular discussions on sexual health including AIDS, a terrible disease that still scares me. Do you get tested? Yes, I go for regular sexual health checkups. My first time was probably 2010 when I came out and started having regular sex with different men. It’s possible I was screened prior to that as I used to donate blood and had several surgeries. Did you and your wife test during your marriage or before you married? No, there was no need. She was the first and only woman I had ever had sex with before and after we got married. I also did not have sex with men until I came out. When you began your relationship with Jason did you get tested? Yes. I had begun having sex with men so I thought it prudent to have regular tests for the full gamut of sexually transmitted infections. At my request Jason also had testing done. I wanted to make sure we both knew one hundred percent what continued on page 44
ruby illustration by Davidd Batalon; hotel photo courtesy Cambridge Hotel; Bloom photo by jason Lockwood
by Ruby Comer
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Hello Justin, I do admire you so much! I added you as a friend [on Facebook] but never wanted to patronize you by coming up with clichés. I’m an African woman living in the U.K. I have a big family as you can imagine...and I have a cousin who I have supported since he lost his father at the age of eight years. I’m turning forty this August and, for me, he’s the son I was meant to have even though I’m only eleven years older than him. I knew he was gay before he realized it himself. But I let him be so that he could find his own way. From his first experience, he contracted HIV; now the challenge is saving him! I’m doing my best— he’s ok as he’s on a therapy that is, for now, supporting his immune system! Unfortunately, in our family, there’s no room for a gay man let alone one with HIV! I love my little cuz, and I will support him till the end of my life (I’m constantly researching new discoveries!). I’m here for him and I’m glad you are here for everyone...keep being you and be the best you can be! But don’t forget to live. Anything I could do to give him more support? —Hannah xoxo Let me first say thank you so
much for being so real with me in your approach. It is amazing to see someone who has taken this young man and stood in as one of his parents when he had none. They say that usually mothers know about their child’s sexuality even before the child does. My parents did the same with me. They knew I was gay but let me find my own way in my own sexuality. I’m very sorry that he contracted HIV, and I’m glad you do not feel guilty about it. My parents, I know, felt guilty when they were informed I was HIV-positive. I told them that they did nothing wrong and that they had nothing to do with my contracting HIV. By therapy I think you mean treatment and this is good. Remember, though, that he needs to stay on that treatment and he might want to seek out a counselor or someone to talk to when he feels a little depressed. Family can be tough at times. Remember to be there for him and make sure he knows that you are there for him. He might not want to talk about it now with you, but he will eventually come around. When my mother was told about my HIV status I hadn’t had a chance to tell her myself. It turns out my own cousin told her mother, who told
my mother. I got a phone call from my family with all of them crying on speaker phone. They asked me sobbing, “Do you have AIDS? We heard you had AIDS!” I replied, “No I do not have AIDS.” They asked again, “Justin do you have HIV?” Then I replied, “Yes I have HIV.” They started crying even more. I told them, “You have to be strong with me and not cry for me.” After that moment they stopped crying and started supporting. For example, my mother and other family members sponsor me for the Washington, D.C. AIDS Walk/5K. They call to check up on me and they still treat me the same as if I didn’t have HIV. For more support I would suggest that he find a support group. Depending on age/race, etc., he might feel more comfortable with a certain demographic. The analogy that I made up is “Being with others in the same boat might make you want to paddle faster to get to your destination.” It might help him stick to his treatment regimen and keep his doctor’s appointments, as well. It sounds like you love him like a mother would and I think that is fantastic. Happy Mother’s Day!◊
photo by Don Harris © Don Harris Photographics, LLC. all rights reserved
Justin B. Terry-Smith has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal.blogspot.com. Now, with this column, Justin has found a way to give voice to the issues that people write to him about. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at email@example.com.
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Meningitis: More Research Needed by Patricia
Nell Warren WITH GAY AND BI MEN ON HIGH ALERT, THE
n April 12, a West Hollywood gay lawyer named Brett Shaad died of bacterial meningitis. Enough political panic and media misinformation has erupted around this case that I’m returning to the subject, having done a column last year that discussed New York City meningitis cases between 2010–12. When I analyzed the news coverage in New York City, I noticed the relentless focusing on gay male cases, especially those who were HIVpositive. Some news stories, notably those coming from right-wing sources like Fox News, didn’t even mention the three women and a child whose cases swelled the local statistics. So rightist reporting left the impression that all local cases were gay and bi men. Later, NYC health authorities made their own move that looked politically suspicious. In March 2013, despite a long-established fact that HIVpositive gay and bi men are more vulnerable to meningitis because of their depressed immune systems, authorities recommended vaccination for all sexually active MSMs, regardless of their HIV status. This gave the impression that NYC meningitis was being sexually transmitted, even though this disease is not a sexually transmitted disease. As I write this column in late April, there’s more breaking news. After an alarm sounded by West Hollywood city councilmember John Duran, the AIDS Healthcare Foundation arranged for thousands of gay and bi men to get free meningitis vaccinations. Fuel is added to the fire by late admissions from L.A. health offi-
cials that three other Southern California gay men died of meningitis starting in December 2012. Late mention has even been made of some cases last summer— total not given—of meningitis among L.A.’s homeless population. The alert about these cases was ignored till now. I continue to notice how some media continue positioning bacterial meningitis
as if it is a “gay disease,” since they mention only the gay male cases of meningitis. Even some indie media, and activists, are comparing this alleged outbreak to the emergence of AIDS in the gay community in the 1980s—which creates an impression that bacterial meningitis is edging towards being a new AIDS. However, looking beyond these inflammatory and problematical statements, we do have to verify if a gay/bi vulnerability to meningitis might in fact be growing—at least in urban areas like New York City and L.A., where there are large LGBT populations. According to medical literature, bacterial meningitis can be caused by three main organisms: Neisseria meningitidis, Streptococcus pneumoniae, and Haemophilus influenzae. On top of this, there are identifiable strains of
these bacteria. NYC health authorities mentioned a virulent strain of bacteria that kills one in three patients rather than the usual one in five. We have to look at the CDC, the agency in charge of our national definitions, protocols, and recordkeeping. Here’s what the CDC says about meningococcal disease: “It is a leading cause of bacterial meningitis in children 2 through 18 years old in the United States. Meningitis is an infection of the covering of the brain and the spinal cord. Meningococcal disease also causes blood infections. About 1,000–1,200 people get meningococcal disease each year in the U.S. Even when they are treated with antibiotics, 10-15% of these people die….Anyone can get meningococcal disease. But it is most common in infants less than one year of age and people 16–21 years. Children with certain medical conditions, such as lack of a spleen, have an increased risk of getting meningococcal disease. College freshmen living in dorms are also at increased risk.” The CDC’s mortality figure on this disease translates into 100 to 150 deaths a year. In this description, CDC says nothing about gay and bi men, or MSMs, as a risk group based on sexual activity or even HIV status. Medical literature mentions that the bacteria can’t live outside the human body for very long. Nevertheless it is contagious—spreadable by coughing, sneezing or social kissing, or even shared use of dishes and cigarettes—which is what makes meningitis such a danger in student situations like college dorms and cafeterias, according to Brown University continued on page 46
illustration by Timothy J. Haines
“THREAT” LEAVES US WITH MORE QUESTIONS THAN ANSWERS.
Listening to Women
’m going to admit right away that I’m pro-feminist, and have been for many, many years. That does not make me a “better” person in any way. All it has done is force me to be more aware of issues affecting more than fifty percent of our population, and, if possible, to help work towards making some difference where I can. This particular column deals with women, but I think the information is crucial for all of us. From its onset more than thirty years ago, HIV/AIDS has traditionally been seen as a “gay man’s” disease, generally punishment for unacceptable behavior. Yes, eventually the world’s medical establishment figured out that the virus was, and had been, running rampant with an overwhelming infection rate in Africa and some other parts of the “Third World.” But even then we were bombarded with images of dying children first, drawing attention to the virus and showcasing its “innocent victims” (in my opinion). As we all know, infected gay men in the U.S. and around the world took to the streets, demanding action in terms of medical treatment and some dignity (usually gaining neither, and being ignored or arrested or both) since we were seen as nothing more than despicable creatures—though loud and persevering— that “deserved” what we were getting. It took years for us (and by “us” I mean everyone from the medical establishment to gay men, and basically the rest of society) to realize how many women were being infected at an alarming rate, and yet we really weren’t inviting them to the proverbial table. They/women weren’t silent—we often chose to simply not listen. Historically, that’s pretty much been the norm I’m afraid, perhaps even today: a division or very wide gap between men and women in general, let alone concerning health issues that affect us all.
This magazine has certainly given voice to women and their unique experiences and needs in the past, but I wonder how many men have paid attention? For instance, are we all aware that according to CDC statistics, in 2010 an estimated twenty-five percent of adults and adolescents aged thirteen or older diagnosed with HIV in the U.S. were women?
Do we all know that Black/African-American women and Latinas are disproportionately affected by HIV infection compared with women of other races/ethnicities? Or that one of the biggest risk factors contributing to HIV infection in women is sexual abuse by their husbands/partners who refuse to wear condoms, and are suspected (by their wives/partners) of having unprotected sex outside of the relationship (either with prostitutes or other infected women, or the “down low” syndrome) or using dirty needles during their secretive substance use? In many cases, women won’t even know they’re infected for years, carrying the virus inside without a clue as they assume their husbands/partners are faithful. And, as the culture of violence against
women continues to plague our society, women feel voiceless and ignored, subject to battering, spousal rape (a relatively new term to a long-time problem!) or worse when they ask their man to wear a condom. And then they begin getting sick, and eventually find out the news, often when it’s very late in their illness, and they’re also trying to raise children. Gay men have learned, for the most part, to protect themselves by wearing condoms themselves, or expecting partners to wear them. Or they practice safer sex. Or they make the decision to throw caution to the wind, roll the dice, and make the conscious choice to not protect themselves. That, too, is a choice between partners, whether anyone else likes it or not. But the reality is that HIV is not solely a woman’s responsibility. Again, most women are infected because of cheating husbands/partners whom the “good little wife/girlfriend” is supposed to trust. Preventing transmission in women is just as much the responsibility of men. Period. In a way it’s like saying rape is a woman’s “problem.” IT IS NOT! Rape is a MAN’S problem. Period. In my eyes, it’s really the same thing. Until we begin to really change the culture of male dominance and violence against women in our society and around the world—treating them honestly and with the absolute respect and dignity they deserve as human beings—their rate of infection will continue to climb, and many of them won’t even know it. And the reality is only men can make this change. Chuck Willman has had poetry, erotica, and essays published or forthcoming in a variety of anthologies, journals, and magazines. He is also the author of After (JMS Books). He lives in Las Vegas with his partner of twenty-four years.
illustration by Timothy J. Haines
SISTERS SHOULDN’T ALWAYS HAVE TO DO IT FOR THEMSELVES
Christopher (left) has lived with HIV since 2011.
Get the facts. Get tested. Get involved. www.cdc.gov/ActAgainstAIDS www.cdc.gov/ActAgainstAIDS
The Valiant Ones they left so abruptly the valiant ones countless many known many more nameless the truest sons and singers husbands and poets lovers and wives daughters and farmers workers and sisters brothers and friends they left so abruptly with quiet pride steely courage gentle dignity they left so abruptly leaving us our tomorrows brighter hopeful filled with promise they left so abruptly so that we may breathe the breath of liberty the air of freedom the warmth of justice they left so abruptly leaving with us their parting gift
freedom nkululeko swatantrata libertĂŠ azadi vhudilangi libertad they left so abruptly yet we remember them all today in the days that slipped away and in the many more that we await they left so abruptly yet they remain hewed into our memories etched in our consciences engraved in our hearts they left so abruptly and yet they endure with us within us now and forever more â€”Afzal Moolla Afzal Moolla was born in exile in New Delhi, where his South African parents represented the African National Congress in the liberation struggle against Apartheid in South Africa. Moolla traveled with his parents, spending time in Cairo and Helsinki, before returning to South Africa in 1990 following the release of Nelson Mandela and other political prisoners and the unbanning of the ANC and other Liberation Movements. He currently works in Johannesburg.
13 ienna y
ANCESTRY & ART Photographer Duane Cramer Talks with A&U’s Sean Black About His “Family” Portraits by Sean Black
uane Cramer’s clean, intimate photographic style grew out of an ingrained aesthetic that was planted early on in his childhood psyche by the (photographic) representations of his ancestral lineage. This familial dialogue underscores the diverse collection of creative works by this photographer, activist and family archivist, who is also this month’s cover story subject. Alongside fashion editorials, media campaigns, and portraiture, Cramer has photographed countless celebrities (Samuel L. Jackson, Sheryl Lee Ralph), advocates and politicians (Marjorie Hill, PhD, Bill Clinton, U.S. Rep. Maxine Waters), and writers (Toni Morrison, Armistead Maupin). While showcasing a rich array of his evocative images Duane Cramer is visually articulating a relationship between the impressionable, familial imagery which surrounded him as a child and the richly inspired portraits he crafts today. Look, for example, at his iconic portrait of RuPaul. Classically presented in inky black and white the image is steeped in flattering grey tones throughout. While the “Supermodel” herself is sheathed in a provocative lace stocking-dress splayed with faux fur in tow, Cramer’s mastery softens the camp and undulating sexual ambivalence while placing focus on the sweeping motion of the statuesque and glamorized
Left: Maasai Women, Four Generations of Family, Maasai Village, Tsavo West, Kenya, Africa, February 2005, Ilford photographic film, silver gelatin print, 16 by 20 inches Opposite: Raymond, Mission Bay, San Francisco, California, October 1999, Ilford photographic film, silver gelatin print, 16 by 20 inches
TISTRY beauty. Ru is undeniably captured with both vigor, and presence—“boldness” as Cramer describes. The framing breathes while gently containing a personality of grand proportions. Our eyes and attentions are directed to the proud and humanized gaze of his subject—an authenticity to which the creator demands. A&U was able to catch up with Duane about his vocation (he doesn’t consider it work rather an opportunity to “live”) and zero in on the inspirations of his masterful work: Sean Black: What led you to photography and why are you so passionate about it as a medium for expression? Duane Cramer: Growing up, there was a lot of art in my house, family portraits, photo albums, and, looking at them, I fell in love with the idea of recording special people and memorable events. As a child I loved looking through the beautiful photo albums and listening to the stories about the people in them. It gave me a sense of possibility for myself as well as a sense of pride in the accomplishments of my relatives. Capturing those special moments in the lives of others is something that animates and inspires my work to this day. My passion for photography comes from its immediacy and its ability to record unique moments in time like those I saw as a child of relatives and family friends. You are noted for crafting “insightful images” that “intimately reveal the richness and humanity” of your subjects—could you expand upon this? I love showcasing the humanity and inner beauty in each person; I have an eye for the unusual and unexpected which allows me to expose what is unique and special in each person. Showing the beauty and boldness, I love being able to show other people what I MAY 2013
A&U Gallery get to see through my images. When did you decide to use your talents to communicate creative messages? I’m not sure that there was a specific moment or point in time exactly. In my own way, I’ve always tried to imbue my work with a creative spirit, when I worked at a big corporation and now through my photography. When I was diagnosed with HIV I began to advocate on behalf of HIV awareness, prevention education, and social justice. For a decade working full-time on photography, I focused on portraiture and developing and creating concepts and imagery for social marketing campaigns. It’s been my joy. Who are some of your heroes? That’s a tough one because I’ve met so many inspiring people over the years. In general, I’m inspired by those who’ve dared to do the unexpected and who both remind me and show me that there is another way in which to see and understand the world in which we live. Heroes that first come to mind outside of my own ancestry are: Gordon Parks, James Van Der Zee, Martin Luther King, Jr., James Baldwin, and President Barack and Michelle Obama. You reference world leaders, writers, and activists, as well as photographers. How do you think that photography can “show” others a form of hope? Yes, the actions of our greatest leaders have not only positively changed our point of view, but also our direction. Photographs have the ability to reveal, document and change people’s hearts and minds. I hope my work shifts how people see the world and acts as a catalyst to create a better way. Having lost your father to an AIDS-related illness and living with HIV yourself since 1996, how have your own life experiences Opposite: RuPaul, Hollywood, California, November 2004, Ilford photographic film, silver gelatin print, 16 by 20 inches Right: Mayor Willie L. Brown, Jr., San Francisco City Hall, San Francisco, California, May 2003, Ilford photographic film, silver gelatin print, 16 by 20 inches
advanced your keen sense of portraiture? HIV forever changed the meaning and importance of life for me. It is now the lens through which I see and experience life. I realize that life is short but offers infinite possibilities through which changes to our situations and life circumstances can occur. Even when we think we are at the end of our own rope a new perspective or opportunity is often right around the corner—I know this firsthand. The life stories of my family have played a significant role in my sense of portraiture (photographic and paintings). When my father died there was significant stigma and
shame attached to HIV/AIDS. Remembering those days animates my activism to eliminate stigma and discrimination. Seeking and identifying the unique aspects of soulful strength in each person comes from my deep belief that true liberation is the freedom to live one’s life with dignity, purpose and a sense of one’s place in the world. I try to bring that out and share that in my work. Visit duanecramer.com for more of Duane Cramer’s work. Follow him on Instagram at: EyeSeeIt. Sean Black interviewed Duane Cramer for this month’s cover story.
About Face More than Two Decades After a Speech that Changed the Face of AIDS in America, Mary Fisher is Still Delivering
by Chip Alfred
divorce. A year later he told his ex-wife he was HIV-positive. At first, Mary’s focus was on Brian. “I found myself just being there for him. I didn’t think I was at risk. I really didn’t understand.” But her biggest concern was for Max, then two years old, who tested negative. After she tested positive, “that’s when my life changed really. The world started spinning. I just almost couldn’t believe that it would be true.” And the inevitable self-questioning began. “Why me? Am I going to die?” Fisher went public with her diagnosis in a front-page story in the Detroit Free Press, then she persuaded GOP leaders to allow her to speak at the national convention in Houston. Her speech, “A Whisper of AIDS,” has been recognized as one of the greatest of the twentieth century. It is included in Words of a Century: The Top 100 American Speeches, 1900–1999, along with other monumental addresses like “I Have a Dream” by Dr. Martin Luther King, Jr. Not
only was Fisher’s an eloquent, stirring plea for compassion and public attention to AIDS, it was a game-changing moment in history—especially for women. On the heels of Elizabeth Glaser speaking about AIDS at the Democratic National Convention, Fisher’s comments made it clear to the American public this wasn’t a gay men’s disease and that everyone needed to join the fight. In “A Whisper of AIDS,” she said: “I represent an AIDS community whose members have been reluctantly drafted from every segment of American society. Though I am white and a mother, I am one with a black infant struggling with tubes in a Philadelphia hospital. Though I am female and contracted this disease in marriage and enjoy the warm support of my family, I am one with the lonely gay man sheltering a flickering candle from the cold wind of his family’s rejection.” Nobody—especially Fisher—anticipated the impact her remarks would have or the
photo by Shell Photographics
t was the summer of 1992. A beautiful blonde woman stepped up to the podium at the Republican National Convention and twenty seven million viewers watched in stunned silence as she spoke. Mary Fisher delivered a thirteen-minute oration that, according to the New York Times, “brought AIDS home to America.” For most people, Fisher didn’t look like their perception of a person living with HIV—which made her remarks that much more powerful. “I have come tonight to bring our silence to an end,” she said. And so she did. Fisher grew up in Detroit, the product of a prominent, privileged Republican family. In private school, she nurtured her passion for art, but didn’t seriously pursue it until later in life. “In those days, being an artist was not something you worked at,” she recalls. “It wasn’t what my father would say was a good vocation.” She attended University of Michigan, but left to pursue her first career as a television producer. Fisher worked in broadcasting until the mid-1970s, when she was offered an opportunity to join President Gerald Ford’s advance team—the first woman to hold such a position. After a short-lived first marriage, she moved to New York City and met Brian Campbell. The couple married in 1987, gave birth to a son, Max, and a few years later adopted a second child, Zach. In 1990, Campbell asked for a
photo by Mal Cooper
doors it would open. Speaking invitations and media interview requests came pouring in from all over the world. “It changed the way people looked at the disease and gave me an opportunity to speak to people in power,” she remembers. “I talked to many groups of women that looked just like me. Maybe they would never have heard that message.” That same year, Fisher founded the Family AIDS Network, a support and advocacy group which later evolved into a research foundation at the University of Alabama, the Mary Fisher CARE (Clinical AIDS Research and Education) Fund. Fisher has served on the Leadership Council of the Global Coalition on Women and AIDS and as an ambassador for the Joint United Nations Programme on HIV/AIDS (UNAIDS). She has authored six books, from My Name is Mary in 1996 to her most recent autobiographical tome released in 2012, Messenger: A Self MAY 2013
been part of my life,” she explains. “A lot of it is using art to get out my message.” She founded the ABATAKA (a pan-African term for “community”) Project, after several trips to Africa meeting with HIV-positive women. “I saw the need to create for them empowerment,” she discloses, “to give them skills so they would be able to perhaps get a job, finish school, send their children to school, buy food.” She taught them the art of hand-beading and began incorporating their work into the jewelry she designs and sells on-line. Proceeds from the collection benefit African women affected by HIV and the ABATAKA Foundation. Amazed that the famous speech she made twenty years ago is relevant to a new generation, Fisher says, “I am grateful that it lives on.” At the same time she’s saddened that we continue to face some of these obstacles today— stigma, shame and stereotypes. She acknowledges the strides we’ve made in AIDS awareness Mary Fisher speaking at Goldenand prevention, but emphasizes stein Gallery in Sedona last fall we still have our work cut out for us. “We are not talking about it enough and letting people know it’s still an issue,” she asserts. “We’re not doing the education, so we’re Portrait. She describes the first book as a last will and testament to her sons—believ- not doing what it takes to keep the epidemic from growing.” As an HIV-positive ing at the time her children would soon be parent, her greatest wish is this: “I want orphaned. (Brian Campbell died from my children to know that their mother was AIDS-related complications in 1993.) The not a victim. She was a messenger.” The author refers to her latest book as the one message? “Stand up for what you believe she had to write because she didn’t die. in…and try to inspire people to love and to Messenger chronicles Fisher’s journey as “a serve others.” pilgrim on the road to AIDS” with humor and hope, as she becomes a courageous, savvy survivor. Her story is one of an indiWatch “A Whisper of AIDS” at www.youtube.com/ vidual who’s been a source of inspiration user/maryfisherart. Visit www.maryfisher.com for and strength for women across the globe. more information about Mary Fisher’s art and In a candid memoir, she shares her strugadvocacy. To purchase any of Mary Fisher’s gles with alcoholism, AIDS and breast books, log onto www.maryfisher.com/ cancer, and how she learned to heal with advocacy/books-publications. dignity and faith. Still an in-demand public speaker, Chip Alfred is an Editor at Large for A&U and a Fisher, sixty-five, is now an internationally- nationally published freelance journalist based exhibited artist living in Sedona, Arizona. in Philadelphia. Her collections include quilts, sketches, Dann Dulin is Senior Editor of A&U. jewelry and prints. “My art has always
the seeds of
Image Maker & HIV Advocate Duane Cramer Joins Merck’s HIV Education Campaign, I Design, to Encourage Us To Shoot Through Our Own Lens Especially When Focusing on Our Health
by Sean Black
ore than being an acclaimed photographer and a champion for those, who like himself, are living with HIV, Duane Cramer is a family man. “My mother always reminded us [he and his three sisters] that we ‘came from something.’ I see that every time I look upon my father’s quilt panel,” shares the former member of the board of directors of the NAMES Project/AIDS Memorial Quilt, who lost his father to AIDS-related complications in 1986. Joe J. Cramer, Jr., PhD, “a trailblazer,” states Duane, was a successful “Big Five” accountant and an associate dean of the business school at Howard University in Washington, D.C. It isn’t just the words of his mother or the image of his father that reminds him that he “came from something,” it’s also the act of sewing itself. “My family [like
Photographed by Stephen Churchill Downes
most] wanted to be seen well and sewing allowed them to dress and present themselves at their very best,” explains Cramer about the textile art that has extended its usefulness throughout the past two and a half decades to the construction of quilted totems for those we’ve lost to AIDS. “It has been a family tradition, passed down generation after generation. It is part of who we are,” he proudly shares. Perhaps this sense of individualized tailoring is what, in part, drew Duane to become a spokesperson for I Design, a campaign spearheaded by the global healthcare leader Merck already in partnership with fashion designer and Project Runway All-Stars’ Mondo Guerra [A&U, January 2013]. The campaign continues its mission since its inaugural launch last year to encourage patients living with HIV to work with their
doctors to “tailor” their HIV treatment plan by approaching HIV treatment “through their own lens,” says Duane. Featuring interactive, Web-based tools, including downloadable digital and mobile apps, a conversation checklist and a digitized textile and design template, which illustrates a personalized approach, I Design creatively assists, engages, and fosters individuals to have meaningful discussions with their doctors about their individualized HIV management needs. It helps keep track of and manage their health. Focusing on designing your future is now as important as our sewn remembrances of the past. Those of us like Duane and his immediate family, who have served as handmaidens of the Quilt, know firsthand of the heartache attached to this painful yet empowering act of love. But imagine shed-
ding tears over needle and thread alongside your mother and siblings for your father. Delicately pricking the stenciled fabric as each tiny stitch pierces your heart—from the outline of a cloth-transfer of his likeness in his youthful days, to the edges fastening the golden letters bearing his name. Then in the fall of 1996, shortly after returning home from the Quilt display (around your thirty-fourth birthday), you discover that you’re HIV-positive yourself. “My best friend died of AIDS twentyseven years ago,” touchingly shares Cramer, now fifty. “My best friend was my father. I really miss him. It is through the experience of my father’s death as well as other relatives and friends who have died from AIDS that I find the power within to make a positive change and to stand up for myself [and others as well]. I think, too, if others can come from a place of empowerment then they are helping their community.” “At the time of my father’s death the stigma, the shame and the guilt that I felt—it really silenced me,” shares Duane. “It silenced me, and it silenced my sisters and my mother too and it wasn’t until I became HIV-positive myself that I was really able to face my responsibility to talk to people about this disease.”
Drawing from his own experience, he is vocal, not only about his HIV status but about being gay as well. When we spoke this past April, he was presenting at the 5th Annual Bolder Than OUT Conference, which identifies itself as a “change agent” for equality, social justice, and dignity for the black LGBT community. “I was able to encourage people to be honest in every area of their lives in order to make a difference.” Tirelessly advocating for educationbased programs promoting awareness and preventing the spread of HIV is ultimately what prompted Duane to take on his role with the I Design campaign. Moving into its second year of promoting self-expression among individuals in their own HIV treatment regimens, the campaign celebrated a re-launch with Duane on-board this past February 7, in recognition of National Black HIV/AIDS Awareness Day. Looking forward, the I Design Campaign will be continuing its aim and soon be rolling out a series of community-based events in different cities across the United States. “It encourages people to share their own truth with their doctors to develop treatment programs that are going to be far better for themselves, so it’s about fostering conversation and open communication,” emphasizes Duane. Reflecting, he admits, “I have had that experience [miscommunication with his physician] more than one time and it’s frustrating. Sometimes the lack of communication even resulted in misdiagnoses or refusal of treatment. But each time I advocated for myself—I got better results. Active communication is vitally important so that you can talk about side effects, alternative treatments and other health
issues. It can make all the difference.” Duane Cramer uses the “My Health Matters” and the “My Positive Agenda” applications available via desktop or mobile device. “We are all different— some people are more vibrant, some people are more outgoing and some people are more introverted. This a menu of choices and tools that anyone can utilize that will work for them. So if someone is not as verbal, they can track all of this information daily/weekly on their own in one or more of these applications and take their notes or checklist and share it with their doctor. Additionally, this way the information is captured and not lost. It helps so that people don’t forget certain ways they felt, or certain side effects that they may have experienced between their visits. “I will tell you there were times in the past before I started using these applications and not keeping notes that I may have been having some issues and I’d go to my doctor and, if at that time I was feeling well, I’d forget about sharing important information. These applications make sure I don’t miss anything; it even sets reminders on when to take your meds.” Both “My Health Matters” and “My Positive Agenda” are downloadable from the I Design Web site.
Duane’s paternal grandfather, Joe Cramer, Sr., (right) and a friend, circa 1925 in Houston, Texas
The panel of Joe J. Cramer, Jr., PhD, (block He has a number of other activities coming up that further center around community outreach, a passion of his, for the African-American MSM community across the nation: Philadelphia Black Pride, Houston Splash Pride, DC Black Pride in the nation’s capital, and Miami’s SIZZLE event. “It’s a road show of sorts. I’m doing photography at the events and more.” Talking candidly about his mission to help as well as the “fabric” of who he is, has been a passion for this former Xerox business executive, University of Southern California degree holder and later VP for Better World Marketing who often shot the final images for their globally
hopeful ad campaigns. Emerging number 4680) as sewn into the Quilt as a highly sought-after photograco-chair of the Millennium March on pher in the worlds of both fashion and Washington in 2000; VP on the board of editorial, the warm and engaging photogdirectors at Frameline, San Francisco’s rapher has worked for international pubLGBT film festival, for many years; and lications ranging from Harper’s Bazaar, an active delegate with both the Black OUT magazine, and the New York Times. AIDS Institute and the CDC’s “Testing When not shooting high-profile notaMakes Us Stronger” campaign, the first bles or everyday people of equal subnational HIV awareness and testing camstance, he is an active philanthropist paign sponsored by the federal govern(clearly) who gives generously of his time ment under the National AIDS Strategy to ASOs like the Iris House in Harlem, which focuses specifically on the needs of with a sole focus on increasing the welfare of black gay and bisexual men. (Log black women with HIV. He was a foundon to: http://hivtest.cdc.gov/stronger/ ing member of his San Francisco homeindex.html.) “This effort is close to my town’s first LGBT community center; a
Charles Ervin Phillips & Drake Joseph Brown [left to right], Steps of the Church of the Immaculate Conception (Catholic), Washington, D.C., August 20, 2000, Ilford photographic film, silver gelatin print, 16 by 20 inches heart and was nominated by GLAAD as one of the top ‘mainstream’ ad campaigns last year,” he happily reports. Pausing to consider the younger generation of his family, the consummate uncle reminds me of the alarming disproportion that the adolescents of his community and his relations bear. In 2009, the CDC reported that African-American youth accounted for sixty-five percent of new infections for HIV. With concern he concedes, “This is particularly personal to me because all of my four nephews and my one niece are between thirteen and nineteen years of age.” Beyond his compassion and a deeply rooted respect from whom and where he’s come, an inherent talent and appreciation of photography was planted in his makeup. “Growing up,” he shares, “there were always really beautiful portraits in the homes of my different family members— my grandparents, my aunts, my uncles. The photographs were arresting with lots of expressions of hope and dignity and I knew many of the people in the photos. I was also really struck by the images of people [ancestors] dating back to the 1800s. I later learned that many of the photographs were actually taken by my family members, many by my uncle, Edsel M. Cramer.” Duane’s eldest uncle was an intellectual and a well-known visual artist born in 1923 and commissioned in his later years by distinguished individuals like the 41st President of the United States, George H. W. Bush, to do large-scale oil-on-canvas portraits in his family home in Houston of his children, including son and future 43rd President George W. Bush. Duane not only inherited his uncle’s talent, he inherited many pieces of his work including four painted portraits MAY 2013
done by Edsel, commissioned by his brother (Duane’s late father) of him, his sisters and his grandparents which now hang in his California studio. Of the photographs handed down by his maternal grandfather, Freddie Brazos, Duane enlightens. “They [photographs] were on the walls, in family albums, sometimes in very simple wooden frames and other times in very ornate precious metals. A lot of these images too were in personal photo albums. Over time I have become the collector and family historian of these images, which are really inspiring. I see so much perseverance, hope and beauty in them.” The San Francisco African American Art & Culture Complex (AAACC) has acquired a collection of thirty reproductions of the historic family portraits of the “Cramer-Brazos” clan, which makes the center the largest holder of Cramer’s own work and archive of images handed down to him. Furthering his heritage, he is also planning on releasing a book of AfricanAmerican historic images later this year. “They are really aspirational photos and I was able to see a lot of diversity. When I think about very specific images, I think about this one image in particular of my grandfather and a friend of his—another gentleman, circa 1925. They are each sitting on the arms of a high-back chair and their shoulders are touching—it’s clearly a studio portrait and they are both dressed very well and are very distinguished. It is a really beautiful intimate image of two men together. Another of my favorite pictures [of his own making] is of my first nephew,
Drake Joseph Brown, and his young cousin, Charles Ervin Phillips III, together. Many pictures are of families that are clearly of mixed race and mixed ethnicity with their children looking so proud. I say “Wow” when I think about what these people had to overcome in order to survive and thrive. These images and stories were burned into my memory at a very early age.” Recalling a poignant anecdote about his father, Duane shares. “I will never forget one of the quotes my father had typed up on his IBM Selectra II [typewriter], and taped to the walls in the house: ‘What is not documented does not exist.’ When I initially thought about what that quote meant, I thought that he must have been referring to theoretical and financial accounting practices. But what I came to understand from him is that documenting comes in many different forms; it is in written form, photographic form, so these images of my family, which are both photographic and painted, are documents. “So what I am doing is carrying on the legacy of documenting my family as well as the experiences of so many people whether heads of state, or celebrities or people living with HIV/AIDS. I am able to show to the world [and future generations] that these people existed and embody a shared sense of humanity. “ To see examples of Duane Cramer’s work go to this month’s Gallery and log on to: www.duanecramer.com. Facebook: Duane Cramer, follow Duane on Twitter @DuaneCramer, on Instagram: EyeSeeIt. For more information about Merck’s campaign I Design log on to: www.projectidesign.com. For more information about Stephen Churchill Downes, log on to www.scd11.com. Editor at Large Sean Black interviewed Kylie Minogue for the February cover story.
resident Obama’s fiscal year 2014 budget plan includes increases in funding for ADAP and the various components of Ryan White and sustained or increased funding for CDC prevention services, HOPWA, and NIH and the Veterans Administration. Yet, even in the interim, he’s not finding support. When Congress recently passed a spending bill to fund the government through the remainder of fiscal year 2013, the continuing resolution was missing vital funds for individuals living with HIV/AIDS: $35 million in emergency relief funds for AIDS Drug Assistance Programs (ADAP) that had been put in place by President Obama in late 2011. According to the Foundation for AIDS Research, every state will be affected and lifesaving medications for individuals in the progam will disappear from pharmacy cupboards. The most in need, once again, will be the last in line. And the situation is compounded by the fact that $10 million in emergency funding for Ryan White Part C clinical programs was discontinued. In addition, sequestration cuts will deduct over five percent from ADAP and Ryan White Part C providers. Add to this global HIV-related health cuts—even though the President has prioritized funding for the Global Fund to Fight AIDS, Tuberculosis and Malaria, the funding request for the President’s Emergency Response to AIDS Relief (PEPFAR) is the lowest it has been in four years. Advocates, including the members of the HIV Medicine Association, responded to these puzzling, life-altering budget cuts. When asked about why Congress would not support President Obama’s proposal, HIVMA Chair Michael Horberg, MD, MAS, FIDSA, suggested that, if asked, nearly all in Congress would vow support for HIV-impacted Americans. “In fact, I think there’s even broad support for Ryan White. It’s been a clear success. It has shown how real quality healthcare can be delivered in a coordinated fashion and really
Hill & Mountain? by Chael
WEAKENED FEDERAL SUPPORT OF HIV/AIDS SERVICES PUTS OUR HEALTH AT RISK
have tremendously positive results,” he continues, pointing to a recent poster at CROI by Dr. Laura Cheever, associate administrator of the Health Resources and Services Administration (HRSA), about what the CDC calls the “care cascade,” a continuum of engagement in HIV care, from those infected but unaware or not linked to care to those experiencing viral suppression on treatment. Remember those CDC statistics that showed only twenty-five percent of those who are living with HIV in the U.S. are virally suppressed? An HRSA study found that seventy percent of all people who have ever been to a Ryan White visit, at least once in a year’s time, are virally suppressed. That’s evidence of real success. “But in these times of economic restraint, some Senators and Representatives have a very short-term vision and don’t realize the longterm economic benefit of keeping HIVinfected patients healthy, because we know it improves their long-term health outcomes; we know it reduces transmission of the virus; and we know it improves longterm health costs. “The data is clear that investment in Ryan White, investment in care, getting patients to the right provider, making sure they get the right care, getting them tested, and into care, including getting them the right medication, is cost-effective in the long-term. To think nothing of the fact that it is the morally right, the medically right, and the public-health right thing to do.” Is there anything other than reaching out and putting pressure on Congress that people living with HIV/AIDS can do at the grass-roots level? “One is tell your stories. Tell your stories about how these programs have so significantly helped. Not just where further efforts are needed but also the stories of how things have been successful that would have only happened because of Ryan White, because of increased AIDS funding, because of increase in access to healthcare. That’s very critical,” says Dr. Horberg,
adding that, similar to what the HIVMA has tried to do, alliances among physicians, researchers, and patients on the local health level can be nurtured or, if in place, strengthened to create a “unified voice” because “alongside increasing Ryan White, increasing the general programs for AIDS, and fully funding the Affordable Care Act, the research at the National Institutes of Health and the CDC has what’s helped us make these gains. That cannot be ignored. All of these groups have worked so well in concert, especially in recent years, that we don’t want to see these destroyed by shortsighted policy and funding.” Telling our stories is not the only thing we can do, but, as Dr. Horberg, suggests, it may make the abstract more concrete. And that kind of reality is harder to ignore. “I say this repeatedly: When we go to advocate, I can supply the statistics until [policymakers] are blue in the face but they need to be able to put a human face on [HIV/AIDS]....They need a face. And the more stories we can collect, and we can tell, it’s incredibly powerful.” Says Dr. Horberg: “We support the President’s budget. We are very disappointed that there is an apparent decrease in PEPFAR and global AIDS because we think that’s also shortsighted, even from our own domestic interests but certainly from a worldwide role from a medical standpoint. But we do believe that more funding is not just appropriate but necessary—to continue the medical success we’ve seen and extend that medical success.” Chael Needle wrote about HDAC inhibitors and overcoming HIV latency in the April issue.
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Man to Man FOR MSMs: TREATMENT HOPE FOR HCV— AND A WARNING
(the only one for which telaprevir is indicated), five did not have insurance that would cover telaprevir for this unapproved purpose, and one had unmanageable interactions with his ART regimen. In addition, five people spontaneously cleared HCV before starting therapy and two
refused treatment. Eighty-five percent of the twenty treated participants were white and the median age was forty-four years; eighteen had the more difficult-to-treat HCV subtype 1a. The good news: Sixty-five percent had IL28B CC gene pattern associated with good interferon response. Summarizing these results, Fierer said that starting pegylated interferon/ribavirin treatment during acute rather than chronic HCV infection doubles the sustained response rate in half the time, and adding telaprevir is “twice as good” and cuts treatment time in half again. He suggested that triple therapy should be a new standard for treatment of acute genotype 1 HCV in HIVinfected patients. But he added a few caveats, when talk-
ing with A&U magazine: “First, this was not a randomized, controlled study. Second, it was a small sample. And third, even with these favorable results, there were about a third not cured. I was hoping to cure more patients with this regimen.” A warning for MSMs Beyond the study caveats, there was an implication about Fierer’s presentation that was more provocative: the group Fierer studied. Since the mid-2000s Fierer’s team has been following HIVpositive gay and bisexual men with sexually transmitted hepatitis C, some of whom have experienced rapid liver disease progression. He’s been following these men, he says, because of his concern that men who have sex with men are generally unaware of the risks of HCV. And they should be aware, he says. “There is a new risk group for hep C now, and that’s HIV-positive men who have sex with men. If they are having sex with other HIV-infected men, they are also putting themselves at risk for hep C. The CDC is not identifying these men as a risk group, but the fact is hepatitis can be transmitted sexually. It’s not as easy to get as HIV, but it can and does happen.” Fierer added that, included in his study results should be a prevention message. “Condoms are still needed, so wrap it up, guys.” Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His young adult novel, The Genius of Little Things, debuted in January 2013. His comic mystery novel, We’re Here to Help, will be available later in 2013.
illustration by Timothy J. Haines
here’s more evidence of the effectiveness of new antiretroviral drugs in treating the hepatitis C virus (HCV). This time it’s a study, presented at the 20th Conference on Retroviruses and Opportunistic Infections (CROI 2013) in March in Atlanta, that showed adding telaprevir (Incivek) to pegylated interferon and ribavirin shortens the duration of therapy and improves the likelihood of a cure for HIV-positive men with acute sexually transmitted hepatitis C. Daniel Fierer from Mt. Sinai Medical Center in New York City performed an open-label pilot study to see if adding the direct-acting HCV protease inhibitor telaprevir to interferonbased therapy could increase response to treatment for acute HCV infection and shorten the duration of therapy. Fierer included eligible patients consecutively enrolled at a single clinical practice between July 2011 and September 2012. Patients were sexually active HIV-positive men who have sex with men, who were recently found to have newly elevated ALT (alanine aminotransferase) and tested positive for HCV genetic material or antibodies. Within six months of their first noted ALT elevation, participants were started on a twelve-week triple combination regimen of 750 mg (or 1125 mg if using efavirenz) thrice-daily oral telaprevir, 180 mcg onceweekly injected pegylated interferon 2a (Pegasys), and twice-daily weight-based oral ribavirin. Of the forty participants initially enrolled, half were never treated; seven had HCV genotypes other than genotype 1
[books] AIDS in the End Zone Kendra Albright and Karen Gavigan, editors Sarah Petrulis, illustrator University of South Carolina University of South Carolina library science professors Kendra Albright and Karen Gavigan collaborated with incarcerated youths at the South Carolina Department of Juvenile Justice to produce a thirty-one-page graphic novel about HIV and AIDS. Titled AIDS in the End Zone, it features the punchy style and verve of a comic book while conveying weighty information about prevention, testing, and treatment. Albright and Gavigan guided the young men, aged fifteen to nineteen, as they wrote the storyline and dialogue, and illustrator Sarah Petrulis provided the artwork. Gavigan’s research demonstrates that graphic novels can be used to boost literacy, particularly among teenage boys. Author Jon Scieszka (The Stinky Cheese Man and other Fairly Stupid Tales) points out that boys read less than girls, and they are more likely to call themselves “nonreaders.” Their reading test scores lag behind girls’ scores in every age group, according to the U.S. Department of Education. However, boys can be motivated to read by connecting them with nontraditional reading materials—what Boise State
University professor Dr. Jeffrey Wilhelm calls marginalized texts. In a forthcoming book titled Let Them Read Trash, Wilhelm defines marginalized texts as video game novels, vampire books, dystopian fiction, series books, on-line fan fiction, and others. With AIDS in the End Zone, Albright and Gavigan have found an inventive way to capture the interest of teenagers, and to bridge Left to right: Karen Gavigan (professor/researcher); Sarah Petrulis (illustrator); and Kendra Albright (professor/researcher) the literacy gap with boys. The book exerts a gravitabullying, treachery, and retribution. They face tional pull because it contains visual elemoral choices, personified by a devil on their ments and because it was written by shoulders—and they live with the life-alterteenaged boys themselves, giving it the edgiing consequences of their actions. This book ness and immediacy adolescent readers find allows teenagers to safely deal with the fallout appealing. The book is designed to engage from bad choices made by kids just like so-called reluctant readers and nonreaders them. who nevertheless persist in reading comic Public health educators are striving to books, manga, graphic novels, and other stop the spread of HIV infections in South nontraditional texts. Carolina, which ranks eighth in the nation In AIDS in the End Zone, newcomer for new cases. Interspersed with facts about Marcus lands a spot as starting quarterback condom use and impaired judgment caused on the varsity football team. Teammate Brad by alcohol and drugs, this graphic novel may schemes to depose him as star quarterback prove to be instrumental in educating by setting him up with Maria, who is HIVteenagers about the disease. Albright’s positive. This graphic novel, like literature in research examines the impact of informageneral, provides a safe tion and education campaigns on lowering space in which HIV/AIDS infection rates among Ugandans. teenagers can rehearse Now, Albright and Gavigan will seek to what they will do when determine if AIDS in the End Zone succeeds faced with consequenin increasing teenagers’ knowledge and tial decisions without understanding of HIV and AIDS while suffering the real-life motivating them to avoid the high-risk repercussions. Not only do the young men at the behaviors that lead to the spread of HIV and DJJ write about the dan- other sexually transmittable diseases. —Sally Hessney gers of drinking alcohol and having unprotected sex, they explore univerSally Hessney is a program assistant at a nonprofit sal themes of sex, organization, where one of the educational mispower, and victimhood. sions is to educate teenagers about the dangers of The main characters binge drinking, prescription drug abuse, distracted engage in blackmail, driving, STDs, and other consequential issues.
iphotos courtesy University of South Carolina
The Culture of AIDS
A Calendar of Events Last year, President Barack Obama said: “Testing remains a special priority—and thanks to quick and accurate tests, finding out your HIV status has never been easier. The Affordable Care Act now requires many health insurance plans to provide recommended preventive health services with no out of pocket costs, giving millions of Americans better access to HIV testing. Another CDC program, the Expanding Testing Initiative, has conducted 2.8 million tests in its first three years. Together, these and other efforts will help prevent new infections and ensure that people living with HIV lead healthy lives—moving us towards our goal of an AIDS-free generation.” Consider these prevention facts:
More than half of adults in the U.S. have never been tested for HIV. Currently, at least one in three people who test positive for HIV test too late to make use of the full benefit of treatment.
June 27, National HIV Testing Day, provides a special opportunity for you to raise awareness in your community. Check with your local AIDS service organizations or faith-based institutions to learn about events in which you can participate. Or, start your own event. The AIDS.gov Web site has plenty of resources for you to help out, including suggestions like posting an announcement on your Web or social media site or Tweet about the awareness day. For more information, log on to www.aids.gov.
One in five in the U.S. do not know that they are living with HIV.
Ruby’s Rap continued from page 14
our health status was. Good for you guys. Help me understand, mate, about your sexuality…. Well, I have had feelings of same-sex attraction most of my life but growing up I never really could identify with being gay despite the fact that my favorite uncle was openly gay. I came out November 2010 to my family, friends, and co-workers in the space of about two weeks. Soon after, Jason and I became partners, then I helped my wife find a new partner, and all six of us enjoy time with each other as often as possible. My children are well adjusted.
there was a famous ad campaign known as “the grim reaper.” I was about twenty-five and living with my parents in a suburb of Sydney called Rose Bay. It seemed that people were dying everywhere from this disease and this campaign certainly painted a very scary picture of the situation. They call us for our tour. After a short but educational training period, we are out the door with our dynamic, skilled, caring, and lightly comedic guide, Richard Graham, who leads us to the summit. My god what an all encompassing panoramic sight to behold. Steve was right. BridgeClimb is not to be missed.
What a lovely scenario. Y’all created your own extended family. My daughters are twelve and fourteen, and I was married to a wonderful woman. I still love her and fortunately we have a great relationship, which is a testament to her love and understanding of me.
[As we leave the premises, we walk along Circular Quay.] What concerns you most right now about the epidemic? I’m concerned about the number of guys, particularly young guys under the age of thirty out there still having unprotected sex when the risks are still high and we still have no cure. I can’t understand it. I’m so conscious of safe sex. It’s a given in my opinion.
Do you remember how you first heard about HIV/AIDS? I remember back in the late eighties
Rightly so, but I guess that’s the difference between those kids and us, huh? When you’re young like that, the mentality can be
askew. There’s less experience and more risk. It’s up to us, though, to educate and safeguard them. [Just in front of us is the iconic dreamlike Sydney Opera House.] Steve, you’re right on the brink of a new career. Tell me about it. I’m not doing it yet, but I’d like to do some individual coaching particularly for guys coming out of heterosexual relationships and into gay relationships. I’d also like to facilitate groups for health, change, and well-being using coaching, MBSR (Mindfulness Based Stress Reduction), and Laughter Yoga. Laughter? Now that makes healthy sense to me. [Steve shoots a full-size grin.] I love working with people, Ruby….For me this sort of work is incredibly fulfilling. Helping someone make positive changes in their life and learning about themselves is very rewarding. Pain is reality and inevitable. The suffering, we choose and can avoid. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com.
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life support; and the strain of meningitis in question. In fact,” Brian Shaad went on, “the strain mentioned has killed heterosexuals and homosexuals alike since cases in NYC were first reported in 2010. This is not a gay disease. With regards to his attendance at the White Party in Palm Springs we have no evidence he even attended the party.” Then, days after his death, headlines broke that L.A. health authorities had neglected to mention the death of another L.A. gay man, Rjay Spoon, on December 16, 2012. He, and two other cases, are now said to be among thirteen cases of meningitis in L.A. County last year. But Spoon’s death was hardly a secret. Back in December, his partner, Casey Hayden, had posted about it on his Facebook page, asking if any Friends had information on how Spoon might have contracted it. No public attention was paid to Spoon’s case until Shaad’s death hit the news. The L.A. Department of Health is now being accused by some community commentators of not being forthcoming about Spoon’s death, as well as the other two fatal cases, and of not being proactive enough on recommending vaccinations for large numbers of men. At a press conference, DPH’s Dr. Maxine Liggins insisted that they were merely following the protocols for this disease. Which brings us back to the CDC, which establishes these protocols. As I go to press with this story, the Los Angeles gay community is demanding that local health authorities start specific reporting on gay/bi meningitis cases. But more questions need to be answered as well. Exactly how many cases have occurred in southern California in the last year, including those 2012 homeless cases that most people ignored till now? Have gay/bi/MSM cases of meningitis increased enough nationally since 2010 that the CDC and local authorities should start mentioning them as an at-risk group, along with infants and college students? What do we really know about any relationships among these gay/bi cases? L.A. health authorities insist they don’t use the word “outbreak” unless they can connect cases. Do we know which of the three types of bacteria, and strains of bacteria, caused each case? How many of the
deaths were HIV-positive men? Can a gay or bi man develop a weakened immune system from some cause unrelated to HIV, that might render him more vulnerable to bacteria right in his own nose? Does he have a history (some gay and bi men do) of frequent antibiotics treatment for STDs, that might have caused his own nasally resident strain of bacteria to mutate into a more virulent strain like the one mentioned in New York City? Clearly, as the Meningitis Foundation has said, more research is needed on this still-somewhat-mysterious disease. Meanwhile, certain media, health authorities, commentators and activists should stop profiling meningitis in terms of gay men only. For sure, meningitis is scary because its source isn’t always known and it can kill with such speed. But comparing it to the historic emergence of AIDS is politically dangerous and medically inaccurate. In a recent commentary, gay activist John Aravosis points out the danger of religious-right forces now adding meningitis to their list of arguments that gays are a public-health menace and shouldn’t be allowed to marry. The danger will be especially sharp if new research proves that MSMs still constitute only a fraction of the nation’s cases for a single year. Further reading: Meningitis Foundation of America: www.meningitisfoundationofamerica.org/templates/section-view/18/index.html “Killer at College”: www.nbcnews.com/id/20519953/ns/ health-infectious_diseases/t/killer-collegemeningitis-threatens-students/#.UW18fyucXJs NIH on changes in meningitis epidemiology 1998-2007: www.ncbi.nlm.nih.gov/pubmed/ 20001736 WebMD on meningitis vaccinations: www.webmd.com/vaccines/meningococcal-vaccine-for-adults Author of fiction bestsellers and provocative commentary, Patricia Nell Warren has her writings archived at www.patricianellwarren.com. Reach her by e-mail at firstname.lastname@example.org.
photo by Stephen Churchill Downes
student information. For this reason, a growing number of states now mandate that students must be vaccinated against meningitis, or at least informed about the importance of vaccination. The Meningitis Foundation of America emphasizes this significant fact: “The bacteria which cause bacterial meningitis live in the back of the nose and throat region and are carried at any given time by between 10% and 25% of the population. It causes meningitis when it gets into the bloodstream and travels to the meninges. What triggers this movement in a small number of unfortunate people remains the subject of research.” This interesting fact of meningococcal bacteria living right in the noses of one quarter of Americans explains why a cluster of bacterial meningitis cases can appear seemingly out of nowhere, leaving public health authorities looking in vain to find the “index case.” L.A. attorney Brent Shaad was alleged by several media sources to have attended the White Party in Palm Springs—an event well known for its frenzy of MSM sexual activity. Shaad’s family were furious at the media allegations. In an Instinct magazine interview, Shaad’s brother Brian pointed out that the L.A. Times never contacted the family about Brett’s case. So, according to Brian, the Times got various facts wrong, “including the time of his death; day admitted to hospital; status of
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More than twenty-five stars from television, movies and theater defined the true meaning of the word “trouper,” at the 29th Annual Southland Theatre Artists Goodwill Event (S.T.A.G.E.) on April 6. Stars like Carole Cook, Kimberley Locke [A&U, December 2008], Andrew Rannells, Vicki Lewis, Florence Henderson, Patrick Cassidy [A&U, May 2005], and Alex Newell dedicated their time and talent to benefit AIDS Project Los Angeles (APLA). This year’s theme was “Broadway, My Way” and voices filled the rafters of Saban Theatre in Beverly Hills. Highlights for audience members included Bruce Vilanch [A&U, August 1998], who made them laugh when he donned a tutu for A Chorus Line’s “At the Ballet” and Emmy and Tony-winning Tyne Daly, who performed “Rose’s Turn” from Gypsy right before the all-company finale. The presenting sponsor, Wells Fargo, doubled its longtime support of the event this year, with a $50,000 cash contribution to support the event and APLA. The event, directed by David Galligan [A&U, December 1999] this year and every year since its start, raised more than $285,000 for HIV/AIDS direct care, education, and advocacy services offered by APLA, including its Vance North Necessities of Life Program food pantries, freestanding and mobile dental clinics, and in-home health services, among others. For more information, visit apla.org and stagela.com. Clockwise from top left: Glee’s Alex Newell; stage star Lillias White; Tyne Daly; Mary Jo Catlett; The Voice’s Mackenzie Bourg
photos by Josh Patterson Photography/joshpattersonphotography.com
A MESSAGE FROM YOUR IMMUNE SYSTEM
Learn today how HIV treatment may help. Starting treatment early may help you live a longer, healthier life. Treatment guidelines issued by the US Department of Health and Human Services (DHHS) recommend starting HIV medicines for all people with HIV, regardless of their CD4 count. Talk with your healthcare provider about your treatment options and all the factors you need to consider before starting HIV medicines. Sign up for a free eNewsletter to receive healthy living tips, information on HIV treatment, a list of events in your area, and more. Register at TREATHIVNOW.COM. ÂŠ 2013 Gilead Sciences, Inc. All rights reserved. UN15658 02/13
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