HIV Plus Magazine #87

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Is Kaposi’s Sarcoma Back? + Big Brother Is Watching + Can HIV Keep Your Kid Out of School?

H E A L T H + S P I R I T + C U L T U R E + L I F E

Advice You Need Now Dating and Nutrition

Latinos Get Real About HIV

Sex and the Single Senior Why HIV rates are rising among people over 50

SELF-MADE Mondo He’s already a TV star thanks to Project Runway, but HIV-positive designer and activist Mondo Guerra deserves far more than 15 minutes of fame

march/april 2012

www.hivplusmag.com

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in this issue

March+April 2012

18

status symbols 6 Government Intervention From New York to California, Big Brother bears down on people living with HIV.

8 California Porn: No Glove, No Love A tireless effort to make adult film sets safer finally results in action.

8 Why Your Meds Just Got Cheaper Cash-strapped drug programs get some assistance from manufacturers.

9 Higher Learning? One HIV-positive boy’s education is stalled because of discrimination.

around the globe 14 Gypsy of the year Hugh Jackman, Daniel Radcliffe, and Bernadette Peters help raise money for Broadway Cares/Equity Fights AIDS. haart beats

36 A Promising Trial Canadian researchers may ultimately develop a vaccine against HIV.

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38 Know Your Status, Test Yourself New in-home HIV test kits promise quick, private results.

38 killer Compound A new antiviral agent has potential for use in a gel to prevent HIV transmission.

39 K aposi’s: One of Multiple Cancer Complications

cover: Jason LaVeris/FilmMagic; this page (clock wise from top): courtesy life time t v; ge t t y images; photos.com

Kaposi’s sarcoma remains just one of several cancers threatening HIVers.

columns 44 MIND + MOOD How to deal with the worriers and micromanagers who can’t get past your status.

46 native voice Native medicine didn’t cure Shana Cozad, but it offered healing that changed her life.

ALSO 43 YOU 2.0: Dating and Nutrition Advice 48 ASK & TELL: David Furnish

18 Mondo, Unscripted

Returning to television with Project Runway All Stars, reality television’s nicest role model spoke to us about his transition from fashion hopeful to impassioned activist.

26 The Graying of HIV

The statistics involving older Americans and HIV are alarming, but you wouldn’t know it from the media or the medical establishment. l at i no s g e t r e a l a b ou t h i v

30 Direct Messaging

An award-winning social media campaign tries to end HIV’s hold on Latinos by speaking to the community’s sense of justice and family.

32 Finding Compañeros in the Face of Adversity A new book tells the stories of Latino HIV activists.

34 An Honest Conversation About HIV

Latinos are encouraged to open up about HIV in a new video series.

status symbols

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Government Intervention

photos.com

From New York to California, Big Brother bears down on people living with HIV

businessman stan cooper has been HIVpositive since the 1980s, and thanks to the federal government, the whole world knows it. Cooper is embroiled in a lawsuit heard by the Supreme Court late last year. A recreational flier, he allowed his pilot’s medical certificate to lapse after he tested positive for HIV in 1985. Years later, in 1994, Cooper reapplied for the certificate but, for fear of being disqualified, didn’t mention his HIV, nor did he reveal it the four times he renewed his credentials. Cooper now admits he was wrong, but says what happened next was worse. Operation Safe Pilot, a joint project launched in 2003 by the Department of Transportation and the Social Security Administration, cross-referenced the health records of Northern California pilots, uncovering disability benefits Cooper had received in 1995. When it was discovered that he had HIV, he was charged with three felonies. After pleading guilty to a misdemeanor false statement charge, Cooper sued the federal government, citing the 1974 Privacy Act, which prohibits federal agencies from releasing records on any individual, under most circumstances, without the person’s written consent. The Supreme Court will decide whether Cooper deserves financial compensation for the illegal disclosure, which has caused him to spend $200,000 on legal fees, he says. Meanwhile, Cooper’s HIV-positive status remains posted on a government website. “They stole my privacy,” Cooper told NPR in late November, referring to the SSA and the DOT’s Federal Aviation Administration. Cooper’s case isn’t an anomaly. As part of a new project funded by the Centers for Disease Control and Prevention, the New York

City Department of Health and Mental Hygiene is proposing sharing HIV-related information about individuals. The department already maintains a database of certain HIV-positive individuals and their sex partners, ostensibly for partner-notification services and potential studies. Should an HIV-positive person move to another city or state, department officials want to be able to share information on them, including their name, with the new jurisdiction. On top of that, the department hopes to keep information on the partners indefinitely. Currently, their names are deleted from the database one year after an investigation is closed. There is also a proposal from the department to inform doctors if a patient is “an ongoing public health risk” and to work more closely with the city’s police to collaborate on “crosscutting issues of policing and public health.” While a representative from the health department’s press office says the proposals are still being weighed, some New York–based HIV groups are concerned, especially since 34 states criminalize certain HIV-related behavior, including not disclosing one’s positive status before having sex. The Gay Men’s Health Crisis, for example, praised the city government for working to bring New York’s HIV numbers down but expressed alarm at the idea of sharing information on people’s sex lives. “Many states have specific HIV criminalization laws,” Ace Robinson, GMHC’s managing director of community health and research, public policy, and advocacy, said in a statement, “and this information could be used to prosecute people living with HIV, for what is otherwise lawful activities, in a number of circumstances.” —Neal Broverman

m a r c h /a p r i l 2 0 1 2 •

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STATUS SYMBOLS status symbols

Startling statistics come into focus for National Women and Girls HIV/AIDS Awareness Day March 10 While 26% of women in the United States are AfricanAmerican or Latina, these groups account for

82%

California Porn: No Glove, No Love

of AIDS cases among women

A tireless effort to make adult film sets safer finally results in action after a recent hiv scare and numerous cases of sexually transmitted infections among performers in Los Angeles’s adult film industry, the AIDS Healthcare Foundation has launched an intense campaign to enforce the already-on-the-books law that makes condom use mandatory on porn shoots, and it has already seen some success. The group gathered enough signatures to place a condom-use measure before voters in the city of Los Angeles this June, but in January the City Council went ahead and approved an ordinance with similar language, avoiding a costly special election and a possible court battle. The ordinance, which was dubbed the City of Los Angeles Safer Sex in the Adult Film Industry Act and passed overwhelmingly, requires condoms in all porn films shot within the city. That includes the San Fernando Valley, where an estimated 90% of all legal U.S. adult films are produced. Any production that receives a city filming permit will be subject to

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random inspections to make sure the moviemakers are complying, and permits will be pulled if they aren’t. AHF praised the decision, calling it “historic.” Now AHF is campaigning for similar measures beyond the city limits. It is gathering signatures to put a Los Angeles County ordinance on the ballot in November, and it is considering such an initiative for San Francisco. AHF president Michael Weinstein says these measures are like those currently governing tattoo shops, spas, and massage parlors, which require owners to obtain a public health permit. AHF officials also note that makers of gay adult films have had their performers use condoms for years, and furthermore, it’s already part of state law. Foundation spokesman Ged Kenslea says, “Condom use on adult film sets is, and has been, the law in California under blood-borne pathogens regulations. It is just a law that has not been uniformly enforced or followed.” —Winston Gieseke

Women are

twice as likely to contract HIV through heterosexual intercourse than are men

While women represent 25% of the people living with HIV in the United States, they represent

50%

worldwide and

60% in subSaharan Africa

Why Your Meds Just Got Cheaper

Cash-strapped drug assistance programs get some assistance from drug manufacturers Every year thousands of people living with HIV who have limited or no prescription drug coverage rely on the nation’s AIDS Drug Assistance Programs to obtain lifesaving prescriptions. However, the rising cost of medications and the lagging economy have made getting the medicines nearly impossible. At the end of last year, there were more than 4,000 people on ADAP waiting lists. But that may change. Activists from the ADAP Crisis Task Force convinced some of the biggest manufacturers of HIV meds to offer even more discounts to ADAPs. Last spring Boehringer Ingelheim Pharmaceuticals announced it would freeze the price of its antiretroviral Viramune for two years, and in August it agreed to lower prices on other HIV meds. Gilead Sciences, maker of Atripla, Truvada, and Viread, complied as well after the Los Angeles–based AIDS Healthcare Foundation staged a mock funeral at the company’s headquarters in memory of those who have passed away while on waiting lists for medication. The third company on board was Johnson & Johnson, whose subsidiary Janssen Therapeutics agreed in November to provide discounts on its meds and freeze prices through 2013 after similar protests. The big company notably missing all year was Merck, whose Isentress remained one of the nation’s priciest HIV drugs. AHF president Michael Weinstein urged the company to follow the others’ leads, saying, “We want to state loud and clear that Merck’s refusal to lower its prices for ADAPs is a death sentence for people with AIDS.” Then on December 21, AHF announced that Merck had officially joined the ranks by lowering Isentress’s price too and freezing it through December 31, 2013. Weinstein praised the move. “In this season of giving,” he said, “we extend a loud and clear ‘thanks’ to Merck for its action lowering prices on its lifesaving AIDS drugs for ADAP.” —W.G.

infographic sources: UNAIDS; Kaiser Family Foundation; Centers for Disease Control and Prevention; World Health Organization; photos (clockwise from top): ge t t y images; photos.com

Feminine Figures

Higher Learning? One HIV-positive boy’s hopes for a good education are stalled because of discrimination

from top: photos.com; ge t t y images

it’s been decades since we first learned about Ryan White, the Indiana teen who was shunned and expelled from his middle school when it was revealed that he had HIV. Our understanding of the virus and AIDS was not as advanced in the 1980s, but White’s candor taught the nation that discriminating against anyone with HIV is not only immoral, it should be illegal—as it now is, under the federal Americans With Disabilities Act, which passed in 1990. But late last year a teenage boy was turned away from a boarding school in Hershey, Pa., after administrators found out that he is HIV-positive. The 13-year-old, who has not been publicly identified, was told he could not enter the Milton Hershey School because officials were afraid he would expose the 1,850 other students to the virus. “I thought I would get into the school because of the type of student and person I am,” said the athlete and honor roll student through his attorney. But now, he said, his life “has turned into fear, anger, confusion, and tears.” Connie McNamara, a spokeswoman for the school, told ABC News that admin-

istrators see the boy as a “direct threat” because he could potentially have sex with another student. In November the AIDS Law Project of Pennsylvania filed a lawsuit on the boy’s and his family’s behalf, arguing that his rights have been violated under the disabilities act. Daniel C. Montoya of the National Minority AIDS Council predicted that the courts would rule in the boy’s favor, especially since the Department of Justice has prioritized pursuing HIV-related discrimination cases. “Perhaps the most saddening aspect of this story is that the school, whose stated mission is to ‘nurture and educate children in social and financial need,’ not only turned away a deserving student, but also missed an opportunity to educate its student body on tolerance, respect, and human dignity,” Montoya said in December. “Instead of teaching its students how to make healthy choices, the administration showed them that being HIV-positive is something to be ashamed of and that it is acceptable to discriminate against those who may be different.” —Michelle Garcia

Gathering A Crowd

How do you communicate to young people that HIV is still very real? Make them the messengers

When it comes to turning ideas into reality, the Internet is a proven tool for carrying out a plan of action. Using the same idea behind websites like Kickstarter.com, which helps artists find money for their projects, the Joint United Nations Programme on AIDS is hoping to use its clout to help young people teach each other about HIV. Kazakhstan’s UNAIDS coordinator, Roman Gailevich, said recently that the key to empowering young people to educate each other and fight HIV is to allow them to grab the reins. CrowdOutAIDS.org is UNAIDS’s way of bringing youth together, allowing them to figure out the best ways to lower the alarming rate of HIV infections among those aged 13-29 and then to put these ideas into practice. Participants are already sharing thoughts and ideas. “It’s of paramount importance that you have young people living with HIV championing the AIDS response,” writes one commenter on the CrowdOutAIDS Facebook page for North America and Western and Central Europe. “There are many positive leaders around the world—inspiring and motivating… however, many of these people are not open about their status in their home communities,” writes another. UNAIDS will turn these online brainstorms into a plan of action and present it to the UNAIDS Secretariat for approval. Get involved and stay tuned. —Elycia Fishman

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around the globe

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DIPTENDU DUT TA/AFP/Gett y Images

 Libreville, Gabon (above) Before the 2012 Africa Cup of Nations soccer match between Gabon and Niger, Cameroonian football star Samuel Eto’o holds white balloons for an AIDS awareness ceremony, January 23.  New York City (from left) Hugh Jackman, Daniel Radcliffe, and Bernadette Peters at the New Amsterdam Theatre for the 23rd annual Gypsy of the Year fund-raiser, which raised a record $4.9 million for Broadway Cares/Equity Fights AIDS, December 6.

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 New York City (top) Christie’s auction house employees take bids for items once belonging to legendary actress Elizabeth Taylor, December 14. Taylor’s jewelry collection brought in $115 million, with part of the proceeds going to the Elizabeth Taylor AIDS Foundation.

Pasadena, Calif. (above) The AIDS Healthcare Foundation float, “Our Champion,” makes its way through the annual Tournament of Roses Parade, January 2. Honoring Taylor, the float won the parade’s prestigious Queen’s Award.  Belem, Brazil Brazilian soccer player Ronaldinho practices during a training session, September 27. The athlete recently announced he’ll be working with UNAIDS and Brazil’s Ministry of Health to promote AIDS awareness among his country’s young people.

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Previous Spread: Bruce Glikas/FilmMagic, ISSOUF SANOGO/AFP/Ge t t y Images; This spread (clock wise from top left): Spencer Plat t/Ge t t y Images, FREDERIC J. BROWN/AFP/Ge t t y Images, ANTONIO SCORZA/AFP/Ge t t y Images

STATUS SYMBOLS around the globe

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Returning to TV with Project Runway All Stars, reality television’s nicest role model spoke to us about his transition from fashion hopeful to impassioned activist

opposite page: pier/ge t t y images; this page: photos.com

By Neal Broverman

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facing down Heidi Klum, Isaac Mizrahi, Michael Kors, and Nina Garcia is one thing, but standing at a podium in front of hundreds of people is quite another, TV star and HIV activist Mondo Guerra says. “I get so nervous before I give a speech,” Guerra says. “Of course, you know there’s going to be 500 or 600 people, but you look out and it seems like 2,000.” After becoming a fan favorite on season 8 of Project Runway—partly by coming out about his HIV-positive status to Klum, Kors, Garcia, and Runway’s millions of viewers—Guerra turned his newfound fame into a platform. In between launching a jewelry line and competing on Lifetime’s Project Runway All Stars, Guerra has emerged as one of the country’s most high-profile Latino HIV activists. While sewing and designing come naturally to the 33-year-old, he’s finding his new role as an advocate also suits him rather comfortably. “When you get up [to the podium], you feel like people are there to participate, to listen to you, they’re really engaged in what you’re saying,” he says. “So it’s actually grown quite relaxing.” He attended the 15th annual U.S. Conference on AIDS in November and participated in a roundtable about homophobia and the disease during a plenary session at the event. Guerra, who is gay, describes the Chicago conference, which was buoyed by last year’s findings that post-exposure prophylaxis can dramatically lower HIV transmissions, as one of hope. “The overall spirit was very positive, enthusiastic, and optimistic,” he says. The conference was sponsored by the National Minority AIDS Council, a group that recently announced it was moving its focus from simply meeting the challenges of HIV to eradicating the disease. Along with fellow HIV-positive activist and Project Runway alum Jack Mackenroth, Guerra is the face of Living Positive 20

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by Design (LivingPositiveByDesign.com), a campaign presented by pharmaceutical company Merck. Guerra says the campaign’s message stresses the importance of a strong mind as well as a strong body. “We really want to convey to people living with the disease to continue to have a positive outlook on life,” Guerra says. “It’s a really simple message, but a really important one that someone living with HIV may forget on a day-to-day basis.” The campaign also encourages people to work with their health professional in a collaborative way.

“You have to check in with your doctor and keep in mind your viral load, your CD-4 count, and talk to him or her about any side effects that may be occurring,” Guerra says. “These are things you have to remember. It’s a responsibility.” Guerra and Mackenroth discussed the message of Living Positive by Design at a booth they manned at the Chicago AIDS conference. The reality stars also initiated what they call a “community project,” in which participants chose a fabric and a pin that were then put together to make a dress.

“Within my own little family—well, I’m Mexican, so it’s not that little—to see them educate themselves and talk openly about HIV makes me really proud to know that within my community, I’ve made a difference.”

previous spread: courtesy life time television; this spread (clock wise from left): courtesy life time television; ge t t y images (2)

Clockwise from left: Guerra on Project Runway All Stars; at the 2011 AIDS Walk New York opening ceremony; Guerra with, from left, amfAR ambassadors Cheyenne Jackson and Liza Minnelli and amfAR chairman Kenneth Cole at the New York Stock Exchange. The group rang the opening bell in honor of World AIDS Day in 2010.

“The project signifies how every individual can express themselves but that we’re all in this together,” he says. Guerra’s decision to put himself out there as a face and voice of HIV was not taken lightly. He knows he’ll likely be referred to as “the HIV-positive designer” for the foreseeable future, but the reception he received after season 8 touched him deeply. “After the episode aired [in which he revealed his status], there was so much positive response from so many different people,” Guerra recalls. “A lot of that was from people who were still keeping their

status a secret and letting the stigma really define who they were. It was keeping them from being honest. So coming off the show it’s been my responsibility to continue the conversation.” Guerra’s family was in the dark about his status until he told them the truth a few days before the coming-out episode aired. His fears of a reaction filled with anxiety and accusations were far from realized. Instead his family was warm and understanding. Since then they’ve only grown more vested in Guerra’s health. “My entire family has really stepped up

to the plate,” he says. “Now they have put a face to the disease and have sought out the materials to educate themselves. Within my own little family—well, I’m Mexican, so it’s not that little—to see them educate themselves and talk openly about HIV and ask me questions makes me really proud to know that within my community, I’ve made a difference. I hope that continues with my advocacy work.” ✜ Project Runway All Stars airs Thursdays at 9 p.m. Eastern/Pacific. Find out more about Mondo at LoveMondoTrasho.com.

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Patient model. Pill shown is not actual size.

INDICATION COMPLERA (emtricitabine 200 mg/rilpivirine 25 mg/tenofovir disoproxil fumarate 300 mg) is a prescription HIV medicine that contains 3 medicines, EMTRIVA® (emtricitabine), EDURANT™ (rilpivirine), and VIREAD® (tenofovir disoproxil fumarate) combined in one pill. COMPLERA is used as a complete single-tablet regimen to treat HIV-1 infection in adults (age 18 and older) who have never taken HIV medicines before. ®

COMPLERA does not cure HIV and has not been shown to prevent passing HIV to others. It is important to always practice safer sex, use latex or polyurethane condoms to lower the chance of sexual contact with any body fluids, and to never re-use or share needles. Do not stop taking COMPLERA unless directed by your healthcare provider. See your healthcare provider regularly.

IMPORTANT SAFETY INFORMATION Contact your healthcare provider right away if you get the following side effects or conditions while taking COMPLERA: • Nausea, vomiting, unusual muscle pain, and/or weakness. These may be signs of a buildup of acid in the blood (lactic acidosis), which is a serious medical condition • Light-colored stools, dark-colored urine, and/or if your skin or the whites of your eyes turn yellow. These may be signs of serious liver problems (hepatotoxicity), with liver enlargement (hepatomegaly), and fat in the liver (steatosis) • If you have HIV-1 and hepatitis B virus (HBV), your liver disease may suddenly get worse if you stop taking COMPLERA. Do not stop taking COMPLERA without first talking to your healthcare provider. Your healthcare provider will monitor your condition COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works, and may cause serious side effects.

Do not take COMPLERA if you are taking the following medicines: • other HIV medicines (COMPLERA provides a complete treatment for HIV infection.) • the anti-seizure medicines carbamazepine (Carbatrol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®, Epitol®), oxcarbazepine (Trileptal®), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, Phenytek®) • the anti-tuberculosis medicines rifabutin (Mycobutin), rifampin (Rifater®, Rifamate®, Rimactane®, Rifadin®) and rifapentine (Priftin®) • a proton pump inhibitor medicine for certain stomach or intestinal problems, including esomeprazole (Nexium®, Vimovo®), lansoprazole (Prevacid®), omeprazole (Prilosec®), pantoprazole sodium (Protonix®), rabeprazole (Aciphex®) • more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate • St. John’s wort (Hypericum perforatum) • other medicines that contain tenofovir (VIREAD®, TRUVADA®, ATRIPLA®) • other medicines that contain emtricitabine or lamivudine (EMTRIVA®, Combivir®, Epivir® or Epivir-HBV®, Epzicom®, Trizivir®) • rilpivirine (Edurant™) • adefovir (HEPSERA®) In addition, also tell your healthcare provider if you take: • an antacid medicine that contains aluminum, magnesium hydroxide, or calcium

carbonate. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA • a histamine-2 blocker medicine, including famotidine (Pepcid®), cimetidine (Tagamet®), nizatidine (Axid®), or ranitidine hydrochloride (Zantac®). Take these medicines at least 12 hours before or at least 4 hours after you take COMPLERA • the antibiotic medicines clarithromycin (Biaxin®), erythromycin (E-Mycin®, Eryc®, Ery-Tab®, PCE®, Pediazole®, Ilosone®), and troleandomycin (TAO®) • an antifungal medicine by mouth, including fluconazole (Diflucan®), itraconazole (Sporanox®), ketoconazole (Nizoral®), posaconazole (Noxafil®), voriconazole (Vfend®) • methadone (Dolophine®) This list of medicines is not complete. Discuss with your healthcare provider all prescription and nonprescription medicines, vitamins, or herbal supplements you are taking or plan to take.

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PALIO Date: 01.17.12 • Client: Gilead • Product: Complera • File Name: 19991_pgitvd_journal_ad_hivp_lo3.indd • Trim: 7.875” x 10.5” • Bleed: 8.125” x 10.75”

HIV1/23/12 Plus7:42:04 PM

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COMPLERA is a prescription medicine used as a complete single-tablet regimen to treat HIV-1 in adults who have never taken HIV medicines before. COMPLERA does not cure HIV or AIDS or help prevent passing HIV to others.

COMPLERA.

A complete HIV treatment in only 1 pill a day. Ask your healthcare provider if it’s the one for you.

Before taking COMPLERA, tell your healthcare provider if you: • have liver problems, including hepatitis B or C virus infection • have kidney problems • have ever had a mental health problem • have bone problems • are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child • are breastfeeding; women with HIV should not breast-feed because they can pass HIV through their milk to the baby Contact your healthcare provider right away if you experience any of the following serious or common side effects: Serious side effects associated with COMPLERA: • New or worse kidney problems can happen in some people who take COMPLERA. If you have had kidney problems in the past or take other medicines 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 can happen in some people who take COMPLERA. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling anxious or restless, or if you have thoughts of hurting yourself (suicide) or have tried to hurt yourself • 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

Common side effects associated with COMPLERA: • trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression Other side effects associated with COMPLERA: • vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), and pain 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 healthcare provider for medical advice about side effects. 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. 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 • Stay under the care of your healthcare provider during treatment with COMPLERA and see your healthcare provider regularly

Please see Patient Information for COMPLERA on the following pages.

Learn more at www.COMPLERA.com

FDA-Approved Patient Labeling Patient Information COMPLERA® (kom-PLEH-rah) (emtricitabine, rilpivirine and tenofovir disoproxil fumarate) Tablets

COMPLERA may help: • Reduce the amount of HIV in your blood. This is called your “viral load”. • Increase the number of white blood cells called CD4+ (T) cells that help fight off other infections.

Important: Ask your doctor or pharmacist about medicines that should not be taken with COMPLERA. For more information, see the section “What should I tell my healthcare provider before taking COMPLERA?”

Reducing the amount of HIV and increasing the CD4+ (T) cell count may improve your immune system. This may reduce your risk of death or infections that can happen when your immune system is weak (opportunistic infections).

Read this Patient Information before you start taking COMPLERA and each time you get a refill. There may be new information. This information does not take the place of talking to your healthcare provider about your medical condition or treatment. What is the most important information I should know about COMPLERA?

COMPLERA does not cure HIV infections or AIDS. • Always practice safer sex. • Use latex or polyurethane condoms to lower the chance of sexual contact with any body fluids such as semen, vaginal secretions, or blood. • Never re-use or share needles.

Ask your healthcare provider if you have any questions about how to prevent passing COMPLERA can cause serious side effects, including: 1. Build-up of an acid in your blood (lactic acidosis). Lactic acidosis can happen in HIV to other people. some people who take COMPLERA or similar (nucleoside analogs) medicines. Lactic Who should not take COMPLERA? acidosis is a serious medical emergency that can lead to death. • Do not take COMPLERA if your HIV infection has been previously treated with Lactic acidosis can be hard to identify early, because the symptoms could seem like HIV medicines. symptoms of other health problems. Call your healthcare provider right away if you • Do not take COMPLERA if you are taking certain other medicines. For more get any of the following symptoms which could be signs of lactic acidosis: information about medicines that must not be taken with COMPLERA, see “What • feeling very weak or tired should I tell my healthcare provider before taking COMPLERA?” • have unusual (not normal) muscle pain • have trouble breathing What should I tell my healthcare provider before taking COMPLERA? • have stomach pain with Before you take COMPLERA, tell your healthcare provider if you: - nausea (feel sick to your stomach) • have liver problems, including hepatitis B or C virus infection - vomiting • have kidney problems • feel cold, especially in your arms and legs • have ever had a mental health problem • feel dizzy or lightheaded • have bone problems • have a fast or irregular heartbeat • 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. Its purpose 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. Call your healthcare provider right away if you have any of the following symptoms • are breast-feeding or plan to breast-feed. The Centers for Disease Control and of liver problems: Prevention recommends that mothers with HIV not breastfeed because they can pass • your skin or the white part of your eyes turns yellow (jaundice). the HIV through their milk to the baby. It is not known if COMPLERA can pass through • dark “tea-colored” urine your breast milk and harm your baby. Talk to your healthcare provider about the best • light-colored bowel movements (stools) 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 • nausea and nonprescription medicines, vitamins, and herbal supplements. • stomach pain 2. Severe liver problems. Severe liver problems can happen in people who take COMPLERA or similar medicines. 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) when you take COMPLERA.

You may be more likely to get lactic acidosis or severe liver problems if you are COMPLERA may affect the way other medicines work, and other medicines may female, very overweight (obese), or have been taking COMPLERA or a similar 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 medicine containing nucleoside analogs for a long time. it may not work to help control your HIV infection. The HIV virus in your body may become 3. Worsening of Hepatitis B infection. If you also have hepatitis B virus (HBV) infection resistant to COMPLERA or other HIV medicines that are like it. and you stop taking COMPLERA, your HBV infection may become worse (flare-up). A “flare-up” is when your HBV infection suddenly returns in a worse way than before. Do not take COMPLERA if you also take these medicines: COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV • COMPLERA provides a complete treatment for HIV infection. Do not take other HIV medicines with COMPLERA. therapy with your healthcare provider. • the anti-seizure medicines carbamazepine (CARBATROL®, EQUETRO®, TEGRETOL®, • Do not let your COMPLERA run out. Refill your prescription or talk to your healthcare TEGRETOL-XR®, TERIL®, EPITOL®), oxcarbazepine (TRILEPTAL®), phenobarbital provider before your COMPLERA is all gone. (LUMINAL®), phenytoin (DILANTIN®, DILANTIN-125®, PHENYTEK®) • 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 • the anti-tuberculosis medicines rifabutin (MYCOBUTIN ), rifampin (RIFATER , RIFAMATE®, RIMACTANE®, RIFADIN®) and rifapentine (PRIFTIN®) often and do regular blood tests to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking • a proton pump inhibitor medicine for certain stomach or intestinal problems, including esomeprazole (NEXIUM®, VIMOVO®), lansoprazole (PREVACID®), omeprazole COMPLERA. (PRILOSEC®), pantoprazole sodium (PROTONIX®), rabeprazole (ACIPHEX®) • more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium What is COMPLERA? COMPLERA is a prescription HIV (Human Immunodeficiency Virus) medicine that: phosphate • is used to treat HIV-1 in adults who have never taken HIV medicines before. HIV is the • St. John’s wort (Hypericum perforatum) virus that causes AIDS (Acquired Immunodeficiency Syndrome). If you are taking COMPLERA, you should not take: • contains 3 medicines, (rilpivirine, emtricitabine, tenofovir disoproxil fumarate) • other medicines that contain tenofovir (VIREAD®, TRUVADA®, ATRIPLA®) combined in one tablet. EMTRIVA and VIREAD are HIV-1 (human immunodeficiency • other medicines that contain emtricitabine or lamivudine (EMTRIVA®, COMBIVIR®, virus) nucleoside analog reverse transcriptase inhibitors (NRTIs) and EDURANT is an EPIVIR® or EPIVIR-HBV®, EPZICOM®, TRIZIVIR®) HIV-1 non-nucleoside analog reverse transcriptase inhibitor (NNRTI). • rilpivirine (EDURANT™) It is not known if COMPLERA is safe and effective in children under the age of 18 years. • adefovir (HEPSERA®)

Also tell your healthcare provider if you take: The most common side effects of COMPLERA include: an antacid medicine that contains aluminum, magnesium hydroxide, or calcium • trouble sleeping (insomnia) carbonate. Take antacids at least 2 hours before or at least 4 hours after you take • abnormal dreams COMPLERA. • headache • a histamine-2 blocker medicine, including famotidine (PEPCID®), cimetidine • dizziness (TAGAMET®), nizatidine (AXID®), or ranitidine hydrochloride (ZANTAC®). Take these • diarrhea medicines at least 12 hours before or at least 4 hours after you take COMPLERA. • nausea • the antibiotic medicines clarithromycin (BIAXIN®), erythromycin (E-MYCIN®, ERYC®, • rash ERY-TAB®, PCE®, PEDIAZOLE®, ILOSONE®), and troleandomycin (TAO®) • tiredness • an antifungal medicine by mouth, including fluconazole (DIFLUCAN®), itraconazole ® ® ® (SPORANOX ), ketoconazole (NIZORAL ), posaconazole (NOXAFIL ), voriconazole • depression (VFEND®) Additional common side effects include: • methadone (DOLOPHINE®) • vomiting Ask your healthcare provider or pharmacist if you are not sure if your medicine is • stomach pain or discomfort • skin discoloration (small spots or freckles) one that is listed above. Know the medicines you take. Keep a list of your medicines and show it to your • pain •

healthcare provider and pharmacist when you get a new medicine. Your healthcare provider and your pharmacist can tell you if you can take these medicines with COMPLERA. Do not start any new medicines while you are taking COMPLERA without first talking with your healthcare provider or pharmacist. You can ask your healthcare provider or pharmacist for a list of medicines that can interact with COMPLERA. How should I take 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. • When your COMPLERA supply starts to run low, get more from your healthcare provider or pharmacy. It is very important not to run out of COMPLERA. The amount of virus in your blood may increase if the medicine is stopped for even a short time. • If you take too much COMPLERA, contact your local poison control center or go to the nearest hospital emergency room right away. What are the possible side effects of COMPLERA? COMPLERA may cause the following serious side effects, including: • See “What is the most important information I should know about COMPLERA?” • New or worse kidney problems can happen in some people who take COMPLERA. If you have had kidney problems in the past or take other medicines 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 • 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.

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). How do I store COMPLERA? • Store COMPLERA at room temperature 77 °F (25 °C). • Keep COMPLERA in its original container and keep the container tightly closed. • Do not use COMPLERA if the seal over the bottle opening is broken or missing. Keep COMPLERA and all other medicines out of reach of children. General information about COMPLERA: Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use COMPLERA for a condition for which it was not prescribed. Do not give COMPLERA to other people, even if they have the same symptoms you have. It may harm them. This leaflet summarizes the most important information about COMPLERA. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about COMPLERA that is written for health professionals. For more information, call (1-800-445-3235) or go to www.COMPLERA.com. What are the ingredients of COMPLERA? Active ingredients: emtricitabine, rilpivirine hydrochloride, and tenofovir disoproxil fumarate Inactive ingredients: pregelatinized starch, lactose monohydrate, microcrystalline cellulose, croscarmellose sodium, magnesium stearate, povidone, polysorbate 20. The tablet film coating contains polyethylene glycol, hypromellose, lactose monohydrate, triacetin, titanium dioxide, iron oxide red, FD&C Blue #2 aluminum lake, FD&C Yellow #6 aluminum lake. This Patient Information has been approved by the U.S. Food and Drug Administration Manufactured and distributed by: Gilead Sciences, Inc. Foster City, CA 94404 Issued: August 2011 COMPLERA, the COMPLERA Logo, EMTRIVA, HEPSERA, TRUVADA, VIREAD, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc. or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other trademarks referenced herein are the property of their respective owners. © 2012 Gilead Sciences, Inc. All rights reserved. 202123-GS-000 02AUG2011 CON11822 1/12

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THE GRAYING OF HIV

pier/ge t t y images

The statistics involving older Americans and HIV are alarming, but you wouldn’t know it from the media or the medical establishment BY NEAL BROVERMAN m a r c h /a p r i l 2 0 1 2 •

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Every Monday, Richard gets together with 12 other HIVpositive seniors for their weekly support group in New York City. The majority of the members are like Richard (his last name was omitted at his request), older gay men who have been living with HIV for many years. But there are some new faces too. “One or two have been recently diagnosed, like within the last one or two years,” Richard says. “Some say, ‘How could I have been so stupid?’ There’s a mixture of surprise and regret.” Thirty years after the first diagnosis, seniors are the fastest-growing segment of the HIV-positive population. In fact, according to various scientific studies, half of all HIV-positive Americans will be over 50 by 2017. It’s not just the graying of longtime survivors leading to the surge. Older Americans are contracting HIV in alarming numbers too. One in seven new HIV or AIDS diagnoses is in a person over 50. While we rarely see people over 60 (or even 50) in movies or on television as anything other than chaste grannies and grumpy old men, plenty of people in their sunset years are getting their groove on. The New York City Department for the Aging reminds people in its fact sheet on HIV and seniors, “Older Americans continue to be sexually active; they are also less likely to use protection because pregnancy is not an issue post-menopause.” Erectile-dysfunction drugs have made later-in-life sex more of a possibility than in previous decades. That’s good news for many seniors: Older people having sex at least once a month report higher levels of happiness than those abstaining. The bad news, though, is that Viagra and Cialis haven’t necessarily changed older men’s behavior when it comes to protection. A recent study found that 50-year-old men are six times less likely to use a condom than men in their 20s. Older women, as sexually active as men, figure high in the growing ranks of HIVers. For widows and divorcées stepping into the dating pool for the first time in decades, HIV may not be a top-of-mind consideration.

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“HIV is really affecting black women 45 and over,” Grammy Award–winning singer and longtime AIDS activist Patti Austin tells HIV Plus. “We’re so happy to get laid that we’re not doing the research beforehand.” Whether the cause is embarrassment or guilt, studies indicate older Americans are less likely to speak to their doctors about HIV-related concerns than their younger counterparts. But getting good medical information is important because there are several risk factors that make seniors more susceptible to transmission, according to James Masten, Ph.D., author of Aging With HIV: A Gay Man’s Guide. “There is very little outreach and education targeting midlife and older people,” Masten says. “And while we can remain sexually active well into older age, there is a cultural bias that older adults are not sexually active, and prevention efforts are not developed to target this population. This is even more significant as changes in our bodies, such as thinning skin, increased dryness of mucous membranes, and changes to our immune system, put us at greater risk for HIV infection.” Only about a third of older men and a fifth of older women discussed sex with a doctor since they turned 50, according to a national survey by University of Chicago researchers. The lack of communication goes both ways too. “I think part of it is the perception among doctors that after you reach a certain age— 40 or 45—you don’t have sex,” Richard says. “If you’re a senior and going to a 30-year-old ageist doctor who assumes you’re over-thehill and not having sex, they’re not looking at you as a human being with the full potential for risks.” Doctors and senior patients treating testing as an afterthought has repercussions, says Helena Bushong, a 61-year-old HIV-positive transgender woman living in Chicago. Bushong knows many “late-testing” lesbian, gay, bisexual, and transgender seniors who didn’t come in for a test until after experiencing HIV-related symptoms for months, sometimes years. Some may have thought the symptoms were simply age-related. “These seniors may have been living with the disease for years and are just emotionally unprepared to deal with the consequence of

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being told they have a life-changing disease such as HIV, on top of everything else they may have been living with as an older LGBT adult,” she says. Improving the lives of LGBT elders is the mission of SAGE (Services and Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders), a national organization based in New York. The organization is adapting to a growing number of clients living with HIV; the support group that Richard attends is SAGE-sponsored and was the first such group for HIV-positive seniors. “Social isolation among LGBT elders, delayed care seeking, and lack of prevention messages aimed at older people all combine to create big challenges…including more risk of infection,” says Michael Adams, SAGE executive director. Something affecting all HIV-positive seniors, whether gay or straight, is their aging bodies. The production of T cells declines as we grow older and drops off dramatically around age 55. Before antiretroviral therapy, survival rates were much lower for older HIV-positive people than those contracting the virus in their 20s and 30s. “There are no specific treatment guidelines currently available that focus on management in the older HIV-infected adult,” reads “HIV Infection in the Elderly,” a 2008 article in the Clinical Interventions in Aging journal. “Additionally, there is limited information on the efficacy and safety of selected antiretroviral regimens for older patients.” Little has changed since that article was published. It’s still not clear how drug regimens affect someone after decades or how a 60-year-old body and a 30-year-old body differ in dealing with combination therapy. Some studies have indicated that a decrease in kidney function, common with age, can lead to higher drug toxicity, but little is conclusive. Don’t expect answers to these health questions soon. Even though people are living longer with HIV and transmission rates are not slowing down, advocacy for HIV-positive seniors remains limited. There is no national organization devoted to this group lobbying Congress for more funding, whether for prevention campaigns, home health care, or studies on the long-term effects of antiretroviral treatment. The nonprofit AIDS Institute launched the National

HIV/AIDS and Aging Awareness Day (September 18) in 2008, though it’s little known. Effectively or not, the AIDS Institute is at least attempting to shed light on the problem of this invisible community. Richard, in New York, says the newcomers to his group “know HIV is not the death sentence it was 20 years ago,” but because of entrenched stigma, most people in his support group are terrified of disclosing their positive status to others. “The reaction is always unexpected,” he says. “If you have a new caregiver, you don’t know what kind of prejudices they’re going

to have. That can definitely affect the quality of care, if the person taking care of you is phobic about the disease.” Bushong, in Chicago, wants HIVpositive seniors to become a topic in the national conversation immediately. “I believe the medical field is grossly unprepared for what’s coming down the pipeline,” she says. “There will be an epidemic of aging patients with HIV/AIDS in the next 10 years, many with other preexisting conditions. The question [for health care providers] is, How do we give value to people who society has already told have none?” ✜

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Direct Messaging

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standing that discrimination is wrong. Then it turned those arguments into a social media campaign, launched last year, called “La Homofobia Tiene Muchas Caras” (“Homophobia Has Many Faces”). The federation got its message across with a website, Contra Homofobia (Against Homophobia), posts on Facebook and Twitter, and community gatherings. “La Homofobia Tiene Muchas Caras” was named one of 2011’s outstanding social media campaigns by the Gay and Lesbian Alliance Against Defamation. “A lot of Latinos have faced discrimination firsthand, so they know that is inherently wrong,” Calderón says. “So that’s a message that connected right away.” The federation’s point about family was an eye-opener in community meetings, Calderón says. It had to make the case that homophobia isn’t only violence or harassment. “It almost always starts at home, and it can be subtle,” said the group’s president, Lillian Rodríguez López, while announcing the campaign on the steps of New York City Hall in May. She made clear that family should come first no matter what. “These are our family members, these are our loved ones, these are our friends, this is our community,” she said, “and everyone deserves dignity and equality.” —Lucas Grindley

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Researchers at the Hispanic Federation, a New York–based network of Latino nonprofit agencies, found two messages they believe will help curb the spread of HIV among Latino men, and both take aim at homophobia. With statistics from the Centers for Disease Control showing that men account for three quarters of new infections among Latinos, and that gay men account for 81% of those, it was obvious to the Hispanic Federation that its community’s homophobia has serious consequences. Men concerned about being outed don’t get tested for HIV, and they don’t ask for services and treatment when diagnosed. In a lot of ways, gays are similar to undocumented immigrants, says José Calderón, a senior vice president at the federation who oversees its HIV/ AIDS programs. Both are “forced to live in the shadows” and with “all of the problems that creates, being afraid to access things that might be right there for you.” Calderón said the Hispanic Federation wanted to talk about the problem with the “movable middle,” those who “may have some hang-ups because of the way they were raised.” The organization convened focus groups that identified two winning arguments against stigma—one that appeals to Latinos’ sense of duty to their families, and another to their innate under-

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An award-winning social media campaign tries to end HIV’s hold on Latinos by speaking to the community’s sense of justice and family

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Finding Compañeros in The Face of Adversity A new book tells the stories of Latino HIV activists

Gregorio learned he had HIV only after heading to the emergency room to treat a persistent cold. “[My cold] got so bad that I eventually started having breathing problems. I asked my roommate to take me to the hospital.… I woke up three or four days later. I had all sorts of equipment around my body. I had a tube going through my nose that even left a mark in my nose. I saw two of my best friends standing beside me. I cried. At the same time, it was comforting to see

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them.… The doctor had called my family and told them my condition was severe and that I could die.… Then, a medical student told me, ‘You have a type of pneumonia that is common among people with HIV. You know you’re HIV-positive, right?’ I told him ‘No.’ The impact was such that I thought about suicide; to throw myself out the window. But I think what kept me and gave me strength was my mother. Even in the worst of times, I have been close to my mother.” ✚✚✚ Ramón came down with candidiasis, an infection that frequently causes white patches in the mouth. “I thought it’d go away in a few days. But it didn’t. I got scared. I went to the doctor. I saw her face changing. ‘You got AIDS,’ she told me. My world fell apart. ‘How much life I got?’ That was the first thing that came to my mind.” Ramón spent all night crying and thinking about his future: “What am I going to do?” “When am I going to die?” “My children are so little.”

Ramón chose to talk to his two teenage children individually. He first talked with his daughter. “She cried like Mary Magdalene. But she told me she loved me and supported me.” It was a little more difficult for his son than his daughter. “My son took it differently. He was serious and didn’t say a word. I felt very bad, like the whole world had collapsed. I cried and then fell asleep. Next morning, he comes to me. He hugs and kisses me. [He said,] ‘I’m sorry, but I didn’t know what to say. I don’t know what to tell you. The only thing I can say is that I love you and you can count on me.’ ” ✚✚✚ “When I became HIV-positive, of course, part of me lost control,” says Renato. “Mentally I was sure—I was 23—and I knew I was never going to make it to 30. So I decided I had to do everything that I wanted to do in my life. I learned French, I got certified in scuba diving, I joined a gym. I started going back to Puerto Rico all the time. I spent a lot more time with my friends and developing

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Honest and accurate portrayals of Latinos, people with HIV, or gay people in media are few and far between. But a groundbreaking new book, Compañeros: Latino Activists in the Face of AIDS by Jesus Ramirez-Valles ($25, University of Illinois Press), combines them all, sharing the hopes, fears, dreams, and everyday lives of 80 HIV-positive Latinos who are gay, bisexual, or transgender. The first book of its kind to let Latino activists with HIV speak for themselves, Compañeros (meaning “companions”) is filled with stories both tragic and uplifting. Here are just a few.

the close friendships, and I got a boyfriend who was also HIV-positive. It has been a blessing. Everyone that I knew from that era, when I was 23, is dead. I feel an incredible gift that I’m alive. It has made me much more aware of the beauty of living.… My spiritual life has really brought me a lot closer at a spiritual level than I think I had been before. My consciousness for social justice I think is influenced by HIV so much and all the things that I’m doing are really a product of HIV.” ✚✚✚ “My mother accepts me, and she loves me,” Jacobo says. “She knows I’m HIV-positive and supports me, even though she is getting very old, she comes from a rural area and had very little education. Right now, she is a very important part of my life. She encourages me, ‘Son, we all are going to die. When? We don’t know. So trust in God and ask him to guide you and to help you go on.’ ” ✚✚✚

During one of his hospital stays in Chicago, Jimmy met a man who told him about the support services provided by the hospital. Jimmy was interested in going but afraid of walking in by himself, so he asked the man if he could take him. Jimmy went and since then has participated in a social support group. “I met many people; lots of people who have been living with this for many years,” Jimmy says. “Some of them have lived with this for up to 15 years. I realized that I wasn’t alone. I also realized that I was wasting my time with those depressions. The compañeros helped me.… They encourage me and give me hope.” ✚✚✚ “When I became positive, I thought I’d die in two weeks,” Marc says. “I’d go out and see people on the streets but they had no value for me anymore. I’d be crying all the time, thinking I was about to die. [My boyfriend] helped me a lot. I had nothing. I had no job, and he told me, ‘Don’t worry, you’ll have

what you need while we figure out what to do with this illness.’ I felt very supported— without it, it would have been devastating for me.” Marc then found a support group for Latinos with HIV through the AIDS Foundation of San Francisco. “I felt like I was the only person who was [HIV] positive,” he says. “When I went to the group, I found a lot of friends. Some of them were actually friends of mine, who had never told me they were positive too.” ✚✚✚ “When I first came out, I was like this HIVpositive poster child,” Jack says. “I was young, and nobody was speaking in [my hometown] about being positive. So people started taking notice of this young Latino boy that was positive and wasn’t afraid to say he was. Any opportunity that presented itself, I was on it.” Published with permission from Compañeros: Latino Activists in the Face of AIDS (University of Illinois Press).

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An Honest Conversation About HIV Some Latino activists are taking the old saying “Honesty is the best policy” and acting on it in a thoroughly modern way. Cuéntame, a project of the social justice–oriented Brave New Foundation, is a social media group whose name translates as “count me” or “tell me your story.” Based in Culver City, Calif., the project is using Internet videos to let Latinos tell their stories and raise awareness of a variety of issues. Its video series An Honest Conversation deals with lesbian, gay, bisexual, and transgender issues, including HIV, which disproportionately affects gay men, Latinos, and gay men who are Latino. It’s not easy to raise awareness when people are reluctant to discuss these matters, which is common among Latinos, says Jessica McMunn Macias, a story and content producer for Cuéntame. “It’s very taboo in our community,” she says of LGBT topics and HIV. “An Honest Conversation’s goal is to open up the conversation with families.” Last October, at the first gay pride event ever held in conservative Lubbock, Texas, Macias found a Latino gay man willing to open up about being HIV-positive. “It was just fate,” she says of encountering Ronnie, a 42-year-old nurse now living in Los Angeles. From an event stage, she asked if anyone would like to share a story. He tapped her shoulder and said he would. In that appearance and a follow-up shoot the next day, there emerged a compelling, often tragic, but ultimately hopeful tale. In the video Ronnie (last name withheld by request) talks about being gay-bashed and otherwise abused, hiding his homosexuality to join the military, being found out and discharged, and eventually receiving his HIV diagnosis. He says he “gave up” for about two years afterward, drinking and partying to escape. But after receiving admonitions from an aunt, he finished college and became a nurse, and now he is helping others. All his experiences, he says, have informed his life. “I have 34

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been beaten up as a kid. I’ve been sexually assaulted as a kid. I’ve been beaten up as an adult. I’ve been shot at, I’ve gone overseas, I’ve been in the military—I thank God that I’ve done all this, because I can walk into a room as a nurse now, and I can look at a person’s face…and I know exactly what happened,” he says, giving as an example a girl who was beaten up because she was a lesbian. “The only thing I need to figure out is, What do I need to do for her to get her out of that situation?” He goes on to enumerate the lives he’s saved and say young people “need to be themselves. You are who you are.… There’s an actual life out there for you to live.” Ronnie had not previously spoken publicly about having HIV, and none of his friends and only part of his family knew. “I’m tired of not just being able to say it,” he says in the video. Of his decision to participate in the project, he tells HIV Plus, “I share my story in hopes of helping others in situations like my own, and to express that regardless of what life offers you, you have to look forward, grasp tightly to your dreams, take pride in who you are and what you offer to those whose lives you affect on a daily basis.” Macias notes that reaction to his video has been overwhelmingly supportive, with many complimentary comments posted online, such as “You have a lot to be proud of” and “Thank you so much for your bravery and your trust in us.” She adds, “Ronnie gives good advice. He’s really an inspiration… and he’s able to mentor a lot of kids.” Ronnie’s video and others can be viewed on the campaign’s Facebook page and at MyCuentame.org/HonestConversation, Macias says, and there’s a possibility the videos will be shown in other venues to help the project toward its goal. “We’re trying to open up that conversation with families,” she says. —Trudy Ring

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Latinos open up about HIV in a powerful new video series

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A Promising Trial

Nikolai Larin

Utilizing the same methods used to vaccinate against polio, Canadian researchers may ultimately develop a vaccine against HIV while an estimated 30 HIV vaccines are being tested around the world, one trial in Canada promises to be unique. After decades of research, development, and high hopes, scientists at the University of Western Ontario are ready to test a new type of vaccine known as SAV001 that they hope will prevent HIV infections. What makes this trial different, said lead researcher ChilYong Kang, Ph.D., is that this is the first preventive vaccine to use a “killed whole” HIV-1 virus to activate a person’s immune system. This version of the virus, however, would be genetically altered so it would not be able to cause HIV infection. For insurance, the virus is also inactivated by using chemicals and radiation. Kang said this process has not previously been used on HIV because it was unknown whether a safer version of the virus could be made in large quantities. However, a similar approach has been employed for polio, flu, hepatitis A, and rabies vaccines. The first 40 people began vaccination trials to make sure SAV001 was not toxic. The next phase will occur among 600 HIVnegative people with have a high risk of infection. The last phase

will be a three-year study of 6,000 volunteers, half of whom will receive a placebo. Kang acknowledged that SAV001 is not particularly helpful for people with HIV, so the next venture for his team is to develop a therapeutic vaccine for those already living with it. Because HIV is a persistent virus that even affects one’s DNA when introduced to the body, it is notoriously difficult to eradicate. For people with HIV who have not developed AIDS, a therapeutic vaccine would “hopefully educate our white blood cells so they can destroy and clear the viral infection,” he said. After two years of evaluation, SAV001 has won approval from the U.S. Food and Drug Administration. This will allow the research team to recruit American volunteers for the vaccine. The FDA is known for having the most stringent approval requirements for such vaccination trials. “FDA approval for human clinical trials is an extremely significant milestone for our vaccine, which has the potential to save the lives of millions of people around the world by preventing HIV infection,” Kang said in a statement. —Michelle Garcia

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Know Your Status, Test Yourself New in-home HIV test kits promise quick, private results

According to the Centers for Disease Control and Prevention, approximately 240,000 Americans have HIV but don’t know it. In addition to not getting the crucial treatment they need, these carriers who unknowingly infect others are believed to be responsible for 70% of the estimated 50,000 new HIV infections in the U.S. every year. While the CDC recommends that all individuals between the ages of 13 and 64 be routinely screened for the virus, a major concern is the alarming number of people (estimated at 20%) who test positive but don’t go back for their results. A possible solution may be point-ofcare or “rapid” tests that, like a home pregnancy screen, may soon be purchased over the counter and administered in private. Using a small sample of blood or fluid swabbed from inside the mouth, these tests promise to provide a visual result in approximately 20 minutes. Two companies are currently working to provide rapid in-home tests. Chembio Diagnostics, which currently offers its HIV STAT-PAK line of rapid HIV tests to government and donor-funded programs internationally, is developing a version to be sold domestically for the home market, while OraSure Technologies announced in early January that it was seeking final Food and Drug Administration approval for its OraQuick Rapid test, a proposed over-the-counter product for home use. In the professional market, the company’s OraQuick Advance Rapid test, currently in use in hospitals, clinics, and doctors’ offices, has already sold over 20 million units in the U.S. In conjunction with the over-thecounter version, OraSure will offer support and treatment referrals via the Internet and a specialized toll-free call center. Douglas A. Michels, OraSure’s president and CEO, hopes the in-home test will enable more people to learn if they’re positive so they can seek the treatment they need. “The completion of our submission to the FDA is a critical milestone in our efforts to secure approval and expand the tools available to combat the spread of HIV,” he says. —Winston Gieseke

Killer Compound A new antiviral agent has potential for use in a gel to prevent HIV transmission

to date, the search for a vaginal gel to prevent HIV transmission has produced disappointing results—but the discovery of a new antiviral agent offers renewed hope. Late last year scientists from Texas A&M University and the Scripps Research Institute came up with a molecular compound able to destroy the virus before it can infect cells. It differs significantly from some other active ingredients that have been used in gels, says researcher Zhilei Chen, Ph.D., an assistant professor of chemical engineering at Texas A&M. A vaginal gel that proved ineffective in a recent trial used the anti-HIV drug tenofovir, which targets a protein that HIV uses to reproduce once it has entered a cell. The compound that Chen’s team discovered, called PD 404,182, keeps the virus from entering cells, she says. “We found that when HIV comes in contact with this compound, it breaks open and loses its genetic material,” she says. “In a

sense, the virus ‘dissolves.’ ” They also found that the compound remains active in vaginal fluids. “In the form of a vaginal gel, the compound would serve as a barrier, acting almost instantaneously to destroy the virus,” Chen says. An effective vaginal gel would be a huge step forward in fighting transmission of the virus because it would give women a means of HIV prevention they could control, rather than relying on their male partners, some of whom have great resistance to condom use. A gel employing PD 404,182 could likely also be created for rectal use by gay men, Chen notes. Development of such gels remains some distance off, however. Chen and her team are currently seeking funding for research into improving the compound’s efficiency and to make sure it is safe for use by humans. Still, they believe they have a groundbreaking discovery. “We believe PD 404,182 acts through a unique and important mechanism,” she says. —Trudy Ring

By the Numbers: The Names Project AIDS Memorial Quilt Year started: 1987 Names on the quilt: More than 91,000 Size: 1,293,300 square feet Weight: More than 54 tons Total number of panels in 1987: 1,920 Total number of panels today: 47,000, each one memorializing the life of a person lost to AIDS

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Global Challenges, New Solutions HIV researchers earn funds for their innovative cure theories

bill and melinda gates are no strangers to spreading their wealth to help search for solutions to the developing world’s problems. Through the Grand Challenges in Global Health project, the Gateses have awarded more than 100 researchers grants to test theories on solving problems including malnutrition, sanitation, and, of course, HIV. In November, 13 grants were given with the focus on finding new approaches to curing HIV. One group of researchers in Virginia, led by Philip Gerk at Virginia Commonwealth University in Richmond, will begin testing how fatty acid transporters can deliver antiretroviral drugs to the central nervous system as well as to lymphatic tissue, where latent HIV tends to hide. Zhengxian Gu at the biopharmaceutical company PTC Therapeutics will examine how a type of small molecule activates HIV. This research can help drugmakers understand how to eradicate

latent HIV reservoirs. Alison Hill and Daniel Scholes Rosenbloom of Harvard University, in collaboration with Johns Hopkins University’s Seyed Alireza Rabi and Greg Laird, have proposed a type of gene therapy that would reactivate T cells that are latently infected with HIV, accompanied by a so-called suicide gene triggered by the virus itself. The suicide gene would then kill the infected cells, an action that could eventually lead to a cure. “Our goal is to eradicate all of the latently infected cells, not just 99% of them,” Rosenbloom told The Harvard Crimson. “Our approach will not be a complete cure, though it will nonetheless be an important step to achieving one.” Rosenbloom added that this method would require a steady regimen of gene therapy, since latently infected cells seem so much like regular, healthy cells. —Michelle Garcia

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Melinda and Bill Gates in India

Kaposi’s: One of Multiple Cancer Complications

Despite recent alarms sounded about Kaposi’s sarcoma, it remains just one of several cancers threatening HIVers There’s been talk recently of a possible resurgence in Kaposi’s sarcoma, a form of cancer once common among people with AIDS, but the truth is, it’s not the only cancer HIVers should worry about, scientists say. Kaposi’s, marked by disfiguring purple skin lesions, was infamously dubbed the “gay cancer” in the epidemic’s early years. In the mid 1980s about 25% of Americans receiving their initial AIDS diagnosis had Kaposi’s, but the incidence has declined sharply, down to about 2% after the introduction of highly active antiretroviral therapy in the late 1990s. Reports of a cluster of cases in San Francisco in 2007 and observations by researchers in 2010 have led some commentators to worry that Kaposi’s is back in a big way. But Kaiser Permanente Northern California scientist Michael Silverberg, whose team is studying the relationship between HIV and cancer, says there is really no spike in Kaposi’s, and it’s one of several cancers for which HIV-positive people face heightened risk. In a study released late last year, the team looked at 10 different types of cancer and found that six of them are more common among people with HIV than those who do not have the virus: Kaposi’s, Hodgkin’s and non-Hodgkin’s lymphoma, melanoma, anal cancer, and liver cancer. They also found that risk of most cancer types studied was higher when CD4-cell counts, a measure of the immune system’s strength, were lower. While some previous research blamed lifestyle factors common among HIVers, such as tobacco and alcohol use, for increased cancer risk, this study indicates that suppression of the immune system is a key element as well. That may be a reason to start antiretroviral drugs soon after an HIV diagnosis, and Silverberg and his group are now studying the effect of when treatment begins. He further suggests that HIVers address lifestyle factors—quit smoking, reduce alcohol consumption, eat healthily—and be screened regularly for cancer. That’s good advice for everyone, but “even more critical for HIV patients,” he says. —T.R.

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www.egrifta.com

Actual Actualpatient patientliving living with withHIV HIVsince since1996 2000

YOU’VE WORKED TO CONTROL YOUR HIV. NOW, TIME TO WORK ON YOUR

HIV-RELATED EXCESS BELLY FAT. In two separate clinical trials of HIV-infected people with lipodystrophy, each lasting 6 months, EGRIFTA® reduced HIV-related excess belly fat by an average of 18% in the first trial, and 14% in the second trial. This reduction in excess belly fat resulted in an approximate 1-inch reduction in waist size. Individual results may vary. On average, patients on EGRIFTA® did not lose weight. Like HIV, HIV-related excess belly fat is a chronic condition. In clinical studies: • People who used EGRIFTA® continuously for 1 year maintained their results over this time period • People who stopped taking EGRIFTA® after 6 months had their HIV-related excess belly fat come back EGRIFTA® is believed to work with your own body to produce natural growth hormone to reduce your excess belly fat. Indication: EGRIFTA® is a daily injectable prescription medicine to reduce the excess abdominal fat in HIV-infected patients with lipodystrophy. Limitations of use: • The impact and safety of EGRIFTA® on cardiovascular health has not been studied • EGRIFTA® is not indicated for weight-loss management • It’s not known whether taking EGRIFTA® helps improve compliance with antiretroviral medications • EGRIFTA® is not recommended to be used in children Important Risk Information Do not use EGRIFTA® if you: • Have pituitary gland tumor, pituitary gland surgery, or other problems related to your pituitary gland • Have or had a history of active cancer (either newly diagnosed or recurrent) • Are allergic to tesamorelin or any of the ingredients in EGRIFTA®, including mannitol or sterile water • Are pregnant or become pregnant Before using EGRIFTA,® tell your healthcare provider if you: • Have or have had cancer • Have diabetes • Are breastfeeding or plan to breastfeed • Have kidney or liver problems • Have any other medical condition • Take prescription or non-prescription medicines, vitamins, or herbal supplements EGRIFTA® may cause serious side effects, including: • Serious allergic reaction. Stop using EGRIFTA® and get emergency help right away if you have any of the following symptoms: rash over your body, hives, swelling of your face or throat, shortness of breath or trouble breathing, fast heartbeat, feeling of faintness or fainting • Swelling (fluid retention). EGRIFTA® can cause swelling in some parts of your body. Call your healthcare provider if you have an increase in joint pain, or pain or numbness in your hands or wrist (carpal tunnel syndrome) • Increase in glucose (blood sugar) intolerance and diabetes 111122-103209 12/11

• Injection-site reactions, such as redness, itching, pain, irritation, bleeding, rash, and swelling. Change (rotate) your injection site to help lower your risk for injection-site reactions The most common side effects of EGRIFTA® include: • joint pain • numbness and pricking • pain in legs and arms • nausea • swelling in your legs • vomiting • muscle soreness • rash • tingling • itching EGRIFTA® will NOT cure HIV or lower your chance of passing HIV to others. 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 Consumer Brief Summary of EGRIFTA® on following page.

Ask your healthcare provider if EGRIFTA®, the first and only FDA-approved medicine for HIV-related excess belly fat, may be right for you. For more information, visit www.egrifta.com or call the AXIS Center at 1-877-714-AXIS (2947).

T:7 in S:6.625 in

Consumer Brief Summary for EGRIFTA® (tesamorelin for injection) EGRIFTA® (eh-GRIF-tuh) (tesamorelin for injection) for subcutaneous use Read the Patient Information that comes with EGRIFTA® before you start to take it and each time you get a refill. There may be new information. This leaflet does not take the place of talking to your healthcare provider about your medical condition or your treatment. What is EGRIFTA®?

• EGRIFTA® is an injectable prescription medicine to reduce the excess in abdominal

fat in HIV-infected patients with lipodystrophy. EGRIFTA® contains a growth hormone-releasing factor (GRF) • The impact and safety of EGRIFTA® on cardiovascular health has not been studied • EGRIFTA® is not indicated for weight-loss management • It is not known whether taking EGRIFTA® helps improve compliance with antiretroviral medications • It is not known if EGRIFTA® is safe and effective in children. EGRIFTA® is not recommended to be used in children Who should not use EGRIFTA®? Do not use EGRIFTA® if you: • have pituitary gland tumor, pituitary gland surgery, or other problems related to your pituitary gland • have or have had a history of active cancer (either newly diagnosed or recurrent) • are allergic to tesamorelin or any of the ingredients in EGRIFTA®. See the end of this leaflet for a complete list of ingredients in EGRIFTA® • are pregnant or become pregnant. If you become pregnant, stop using EGRIFTA® and talk with your healthcare provider. See “What should I tell my healthcare provider before using EGRIFTA®?”

What are the possible side effects of EGRIFTA®? EGRIFTA® may cause serious side effects including: • Serious allergic reaction. Some people taking EGRIFTA® may have an allergic reaction. Stop using EGRIFTA® and get emergency help right away if you have any of the following symptoms: – a rash over your body

will measure your blood sugar periodically • Injection-site reactions. Change (rotate) your injection site to help lower your risk for

injection-site reactions. Call your healthcare provider for medical advice if you have the following symptoms around the area of the injection site: – redness – bleeding – itching – rash – pain – swelling – irritation The most common side effects of EGRIFTA® include: – joint pain – nausea – pain in legs and arms – vomiting – swelling in your legs – rash – muscle soreness – itching – tingling, numbness, and pricking 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 EGRIFTA®. For more information, ask your healthcare provider or pharmacist. Call your healthcare provider for medical advice about side effects. To report side effects, contact EMD Serono toll-free at 1-800-283-8088, ext. 5563. You may report side effects to the FDA at 1-800-FDA-1088. Keep EGRIFTA® and all medicines out of the reach of children. General information about the safe and effective use of EGRIFTA®: Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use EGRIFTA® for a condition for which it was not prescribed. Do not give EGRIFTA® to other people, even if they have the same symptoms you have. It may harm them. Do not share your EGRIFTA® syringe with another person, even if the needle is changed. Do not share your EGRIFTA® needles with another person. This Patient Information leaflet summarizes the most important information about EGRIFTA®. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about EGRIFTA® that is written for healthcare professionals. For more information about EGRIFTA®, go to www.EGRIFTA.com or contact the AXIS Center toll-free at 1-877-714-2947. What are the ingredients in EGRIFTA®? Active ingredient: tesamorelin Inactive ingredients: mannitol and Sterile Water for Injection

© 2012 EMD Serono, Inc. 110815-130056 8/11 All rights reserved. EGRIFTA® is a registered trademark of Theratechnologies Inc. Distributed by EMD Serono, Inc., Rockland, MA 02370

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How should I use EGRIFTA®? • Read the detailed “Instructions for Use” that comes with EGRIFTA® before you start using EGRIFTA®. Your healthcare provider will show you how to inject EGRIFTA® • Use EGRIFTA® exactly as prescribed by your healthcare provider • Inject EGRIFTA® under the skin (subcutaneously) of your stomach area (abdomen) • Change (rotate) the injection site on your stomach area (abdomen) with each dose. Do not inject EGRIFTA® into scar tissue, bruises, or your navel • Do not share needles or syringes with other people. Sharing of needles can result in the transmission of infectious diseases, such as HIV

• Increase in glucose (blood sugar) intolerance and diabetes. Your healthcare provider

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What should I tell my healthcare provider before using EGRIFTA®? Before using EGRIFTA®, tell your healthcare provider if you: • have or have had cancer • have diabetes • are breastfeeding or plan to breastfeed. It is not known if EGRIFTA® passes into your breast milk. The Centers for Disease Control and Prevention (CDC) recommends that HIV-infected mothers not breastfeed to avoid the risk of passing HIV infection to your baby. Talk with your healthcare provider about the best way to feed your baby if you are taking EGRIFTA® • have kidney or liver problems • have any other medical condition Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. EGRIFTA® may affect the way other medicines work, and other medicines may affect how EGRIFTA® works. Know the medicines you take. Keep a list with you to show your healthcare provider and pharmacist when you get a new medicine.

– hives – swelling of your face or throat – shortness of breath or trouble breathing – fast heartbeat – feeling of faintness or fainting • Swelling (fluid retention). EGRIFTA® can cause swelling in some parts of your body. Call your healthcare provider if you have an increase in joint pain, or pain or numbness in your hands or wrist (carpal tunnel syndrome)

you 2.0 dating

Heart Healthy

Dating is hard even without the complications that HIV brings. Activist Marvelyn Brown, who appears in the national Greater Than AIDS campaign, shares her advice on successfully navigating single life

I’m single and HIV-positive. How soon do I tell someone I’m interested in? How do I tell them? I’ve been positive for nine years, and I’ve been in the dating world the entire time. In the beginning I would just send a text because it was just easier to press “send” than to actually say I was HIV-positive. But now I go by something I would like to call Marv’s Method because it works best for me. I find it easier to tell a guy that I am HIV-positive during the first phone conversation I have with him (just not in a public place). I just come right out and say it without adding sugar or salt for better taste. I choose this method because I have always been the type where my love grows in seconds, and I don’t want to wait for days, weeks, or months to go by without telling him. I feel the more I fall for this guy or the more feelings I have for him, the more it will hurt if he chooses not to stay. It may be harder than a text, but this new method still manages to protect my heart and feelings.

From top: Foodie Photography’ courtesy apple inc.

Email your dating questions to Brown at mail@hivplusmag.com and visit MarvelynBrown.com to find out more about her work.

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Bite by Bite

A good diet is one of the most important components for staying in top form. HIV-positive chef Ramon Ruiz gets you on the right track with one of his favorite healthy recipes ramon ruiz is a new york–based private chef, a frequent contributor to the Examiner food section, a blogger for Foodbuzz and Food Frenzy, a co-proprietor and chief baker at Gingerbirdstore organic bakery, and founder and creative chef for an underground supper club, a private dining society. He describes his culinary aesthetic as “healthy and conscious with bold flavors [served] in a simple, delicate way.” “As someone recently diagnosed with HIV, I understand the importance of healthy eating habits, not only among those in the HIV community but in society as a whole,” Ruiz says. “The use of fresh ingredients and a well-balanced diet is as important as our drugs and has become a very important component of our daily regimen.” Ruiz extols the benefits of a macrobiotic diet, saying that fresh, unprocessed, mostly vegetarian dishes have a positive impact on our longevity, vitality, and happiness. Here is one of his favorite healthy recipes, one that’s fulfilling, delicious, and nourishing. —Neal Broverman

Barley-Mushroom Risotto Feel free to load up on this high-fiber power grain. According to health experts, one cup of barley contains 16% of your recommended daily fiber intake. This delicious recipe will be great side dish for roasted meats, fish, or vegetables. • 5 cups chicken broth, vegetable broth, or water • 1 cup pearl barley • 1 medium onion (chopped) • 2 cloves garlic (chopped) • 2 bay leaves (whole) • 1/2 teaspoon thyme (dried or fresh) • 1 pound mushrooms (sliced) • 2 tablespoons cilantro (chopped) • 2 teaspoons olive oil • 1/3 cup Parmesan cheese Preparation 1. In a saucepan, bring broth or water to a boil. In a large skillet over medium heat, add 1 teaspoon oil, thyme, onion, and bay leaves, and sauté until onions are soft and translucent but not burned, about three to five minutes. Then add barley and one cup of the hot broth or water. Reduce heat to low and simmer until most of the broth or water is absorbed, about eight to ten minutes. From this point on, add only one cup of the hot liquid at a time; stir and allow it to become absorbed before adding more. Repeat this process until all the hot liquid has been used. This whole process takes approximately 45 minutes to an hour. 2. In a large skillet, heat the rest of the oil and sauté the mushrooms until tender. Add garlic and cook for a few more minutes. Stir in the barley mixture. Add cilantro and cheese. Don’t forget to remove the bay leaves before serving. Bon appétit!

Read more about Ruiz at RamonRuizPersonalChef.blogspot.com. m a r c h /a p r i l 2 0 1 2 •

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Gary McClain, Ph.D.

See Me, Not HIV How to deal with the worriers and micromanagers who can’t get past your status are there people in your life who, the day you told them about your HIV, started relating to you as if you had those three letters tattooed on your forehead? A client I’ll call Rafael threw his hands up in exasperation when he was talking about a conversation with his best friend. “I caught a nasty cold, like the colds she’s seen me catch and shake off since we’ve known each other. Now she gives me this terrified look, as if she’s watching me take my last damn breath.” Another client, Jennifer, was recently diagnosed. “I’m trying to decide who’s going to take the news in stride and who’s going to start trying to micromanage my life. I know who’s going ask me if I’m eating and taking my meds every time they see me.” As you disclose your positive status, there are people who are going to take it in stride and relate to you as they always have, though, at least initially, with some extra concern about how you’re feeling physically and emotionally. Often this is temporary and just requires some patience and reassurance on your part as they adjust to the news, not unlike the process that you have gone through. You may need to give each other support in navigating the best way to bring your HIV status into the relationship. And then there are those people who for some reason can’t seem to move past your status, as if everything you say or do is somehow connected to HIV. There are a lot of reasons why people behave this way. Their concern can be the result of their own sense of helplessness, like freaking out over a head cold, for example, or trying to tell you what you should be eating or drilling you on whether you are getting enough rest. They may try to make their own helplessness go away

by trying to manage your life. In other words, these people are projecting their own helplessness onto you. You may also have people in your life who assume that you want them to show concern or who want to assure you that they’re willing to talk about your HIV status (over and over). So where does that leave you? Well, in control, for one thing. And here are some steps you can take to establish the role you want HIV to play in your relationships. Be a role model. Yes, your friends and family are keeping an eye on you. You can show them that you’re dealing with your HIV by taking good care of yourself. Signs of that healthy diet and exercise routine may help reassure them that you are managing just fine. Actions speak louder than words, as they say. Try some “patient” education. Encourage your loved ones to ask you questions. Give them facts you think they can understand and that will also provide enough information that they will have a sense of what you are facing. You might want to offer answers to the questions you suspect your loved ones have but are afraid to ask. Look for teachable moments. When an issue arises, address it in the moment rather than saving it up as material for your next lecture. If a loved one says or does something that shows insensitivity or lack of understanding, or treats you as if you can’t take care of yourself, use that moment to gently let them know how their behavior makes you feel. Some humor can help. “My name is still . I didn’t change it to HIV.” [Smile.]

Be your authentic self. When things don’t feel all that rosy, don’t pressure yourself to pretend otherwise. Let the people you are closest to know when you are having one of those days that we all have from time to time. And then let them be there for you, as they have been in the past. By the way, the people who care about you may be struggling with their own emotions and may need some support from you. Be gentle, but firm. There is a fine line between being micromanaged and being made to feel disempowered. Set limits by letting people know that you are taking responsibility for your health, that you appreciate their concern, and that you will let them know if you need their help. Some people may need to hear this more than once before it sinks in. Keep in mind that the people who care the most about you can also be a little flat-footed at times, but they are acting out of love. Patience can go a long way here. Be optimistic, but don’t expect miracles. We can’t control how other people choose to think or feel or behave—to assume otherwise is a losing proposition. People come around in their own way and in their own time or, sadly, sometimes not at all. Gather people around you who can see you as you, not a diagnosis. You are a multifaceted human being. You are not HIV. Gary McClain is a counselor in New York City with a specialty in coping with chronic health conditions. His books include The Complete Idiot’s Guide to Breaking Bad Habits and Empowering Your Life With Joy.

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Shana Cozad

Oh Sisters, My Sisters Native medicine didn’t cure Shana Cozad of AIDS, but it did offer healing that changed her life

she squeezed my hand hard as the midwife checked her cervix. Her eyes teared up a bit. I cautioned her lovingly that this was all a normal part of the new maternal process. She took a deep breath. So did I. My niece is pregnant. She is 14 years old and will give birth sometime in early March. Internally, I wrestle with the deep guilt that I wasn’t able to prevent this pregnancy somehow or that I wasn’t able to help her abstain from being sexually active so early on. She is an extremely beautiful girl, with the body of a goddess, a face of loveliness. And today we will receive the results of her first HIV test. Guilt, worry, and excitability ever present, here we are together. Her results are negative, and she and I give a big sigh of relief. I think about how I must do an excellent job teaching my daughters (ages 10 and 9) about protected sex. They have used condoms for water balloon fights in the backyard, which is my unconventional attempt to normalize them and make them commonplace in our home. So many people fear condoms today. In my education classes in high schools, teenage girls consistently squirm and giggle with shyness. The girls often say they don’t know how to ask a guy to wear a condom or what they would do if he refused. Some teenage boys say they wouldn’t trust a girl who asked him to wear a condom, fearing she may have something to hide. And so it seems that 30 years into the AIDS epidemic, we are still at square one. How do we help keep another generation from being infected? In my own story I talk at length about what it is like getting sick often, the hospital stays, the pneumonias, the meds and doctor visits.

HIV can be a full-time job; never mind trying to have a relationship or raise a family. There is often stony silence as I show PowerPoint slides of the pills, the lab draws, and the staggering cost of it all. I do my best to make teens realize that HIV can affect an entire family, even if only one member is infected. Our Native elders say that women hold special medicine, and it stretches beyond our mere ability to make babies. The summer after my AIDS diagnosis, I delved deep into my traditional healing ways. I sought the cure, yet instead found healing, which has turned out to be far more valuable. In Rabbit Lodge, the days before the Sundance (a ceremony occurring on Wyoming’s Northern Arapaho reservation), I sat across from the elders and listened intently. They had allowed me to embrace the hoop, a metal ring wrapped in sage that one uses for prayer, which was an honor, given that I was not a member of this particular tribe. The hoop is very sacred, as it belonged to all the people, and it had made me cry and mourn as if from ages of sadness and grief. They said it was good that my tears fell upon the earth, our mother. Most revealing was their lack of fear. The elders knew what I had but were not afraid to shake my hand, pat my shoulder affectionately. In a time when many were afraid to breathe the same air I did, their courage was remarkable. They explained that they knew about this virus, this sickness for mankind. They understood it to be here for an important reason. “We have wounded her,” they said. “Our mother earth is suffering. She is weak and cannot replenish herself. It is like she has this same sickness, yet the sickness is not a virus, it is us.” Images of trash, toxic waste, oil spills,

and melting ice caps raced through my head. “She has given us a mirror to see ourselves in. Change, or be sick like her.” Then they bowed their heads and prayed in their indigenous tongue. When they finished they gazed upon my innocence and said, “You will be fine.” Little did they realize I had previously been told I’d not survive more than two to five years. To hear from them that I would be fine was like an official miracle had been pronounced. Yet now, almost 20 years since those words were spoken, it is inarguable: They spoke the truth. And what of other young Native women? Where is their miracle? In our urbanization and assimilation we are further estranged from our traditions. Few speak the languages anymore. Fewer still attend traditional ceremonies. Our people walk in two worlds, and we dance disastrously with alcohol, drugs, poverty, and lack of education. We appear to live in Third World conditions, compared to those living the American dream. And our girls and women must embrace a sexual strength that we have never before had or needed. Oh sisters, my sisters. It is my prayer, my wish, that the female population everywhere around this mother earth will wake from our slumber and learn a new way. To the future daughters of my daughters, I say it is time for the change, and we can and must handle it. We will speak it, educate it, teach it, sing it, dance it, and especially cry it until this new liberation of our female strength has embedded its way among us all. As a Native American married mother of four, HIV speaker, activist, writer, and blogger, Shana Cozad lives a whirlwind survival story.

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“ I think there are a lot of people who basically hit the snooze button on the alarm clock. People aren’t writing about AIDS as much anymore. ” in a nonexclusive relationship or in an exclusive relationship where you don’t know the status of your partner. What brought you to the fight against HIV and AIDS? I lost many, many friends in the ’80s. And I watched them die very solitary, stigmatized deaths. The first friend I knew who died from HIV, his family never had a chance to come and say goodbye to him because he was too embarrassed to tell them he was battling HIV and AIDS. I found his loss profoundly moving.

as chairman of the elton john aids foundation, David Furnish does all he can to see that his young son, Zachary, will one day live in an AIDS-free world. Last November the activist and filmmaker delivered a keynote speech at the United States Conference on AIDS in Chicago, discussing the Greater Than AIDS initiative (GreaterThan.org), of which the Elton John AIDS Foundation is a founding partner. Up next is the foundation’s annual Academy Awards party, a tradition since 1993. While last year’s event raised an impressive $4 million for the fight against HIV/AIDS, Furnish’s ceaseless efforts go far beyond monetary contributions. —Winston Gieseke What led the Elton John AIDS Foundation to cofound Greater Than AIDS? Just the opportunity to partner with many wonderful people, like the Kaiser Foundation, Walgreens, Johnson Publishing, and Ebony magazine. We’re finding, despite the fact that we’ve been living with this disease for 30 years, that the greatest challenge we’re facing is stigma. The biggest hurdle we have to overcome is getting people to overcome their fear and their inhibitions so they can go into safe, easy environments and learn their HIV status as soon and as privately as possible so they can act accordingly.

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How important are events like the U.S. Conference on AIDS? Very important, because I think there are a lot of people who basically hit the snooze button on the alarm clock. People aren’t writing about AIDS as much anymore. I get very frustrated every time I pick up a newspaper on World AIDS Day and find the story buried on page 26, if it’s covered at all. What would you like to say to the younger generation? If you’re in a situation to prevent yourself from contracting any disease, you should do so. [Which means] wearing a condom if you’re

What about scientifically? There’s lots of promising research out there. With the tools we already have, the weapons we have at our disposal, we’ve come a long way. Treatment is almost coming down to the point where it equals prevention. When you talk about a 96% reduction in viral load and a 96% reduction in passing the virus to another person, it’s a huge step. I hope we keep making greater steps in that direction. How did becoming a father motivate the work you do? I would like to see my son live in a world without AIDS. And since we know with the programs we’re doing around the world that we can prevent mother-tochild transmission in HIV-positive mothers, we can literally visualize an AIDS-free next generation—and my son is going to be a part of that. That’s a dream that I really hope will become a reality. ✜

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Fighting the Stigma

What are some of the main hurdles you’d like to see overcome? I would like to see homophobia addressed a whole lot more on a national level. And on a local level I think the government can continue to do more in terms of a policy direction. And I’d like to see, hand in hand with that, people feeling much less stigmatized about knowing their HIV status and living positively with AIDS. I’d really like to see all of those things swept away so that HIV is something people talk about like many other medical conditions we face in life.

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