POZ September 2011

A SMART+STRONG PUBLICATION SEPTEMBER 2011 POZ.COM $3.99

H E A L T H ,

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H I V

The Kids Are All Right What a new generation says about sex, survival and growing up with HIV

Standing Strong Against Hate and HIV

Lafayette Sanders

David Kuria of the Gay and Lesbian Coalition of Kenya fights homophobic hate crimes in Africa.

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CATALYST FOR CHANGE

Watch our video interview with Don Blanchon, executive director of WhitmanWalker Health in Washington, DC, on poz.com/tv Read about the clinic’s expanding mission on page 42 of this issue.

Angelikah Demonikah shares the challenges of growing up positive.

POZ EXCLUSIVE PATIENT ZETA

Adult film actor Derrick Burts, a.k.a. Patient Zeta, tested HIV positive last October and reignited the issue of using condoms in porn. Search “Patient Zeta” on poz.com to read our interview.

(COVER) STEVE MORRISON; (DEMONIKAH) RICHARD FLEISCHMAN; (BURTS) COURTESY OF DERRICK BURTS

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36 ALL GROWN UP WITH HIV Thirty years into the epidemic, a new crop of kids faces adulthood—with HIV. From babies born with the virus to teens who acquired it behaviorally, members of this new generation struggle to navigate survival while making their way through the world. BY CRISTINA GONZÁLEZ 42 FACING THE FUTURE OF HIV CARE As the nation’s health care system reels from the economic meltdown and the uncertainty of upcoming reforms, many people with HIV are wondering about the future health of HIV care in America. But the changing landscape has produced some new models that point the way to a place of improved care for more people living with HIV. BY BENJAMIN RYAN 9 FROM THE EDITOR

23 WE HEAR YOU

14 FEEDBACK

24 WHAT MATTERS TO YOU

The Facts of Life

On curing the Berlin Patient and being homeless with HIV

Your responses to the criminalization issue How to find your mate with HIV

29 TREATMENT NEWS

16 POZ Q+A

David Ernesto Munar keeps himself—and the AIDS Foundation of Chicago—running at a brisk pace.

Other benefits of HIV drugs • more access to Medicaid for people with HIV • a resource for prisoners • FDA approves Edurant • a new Viagra-like condom • By the Numbers

18 WHAT YOU NEED TO KNOW

35 COMFORT ZONE

Michelle Obama mentions HIV/AIDS • 15 million people in care by 2015? • health care is in grave danger • auctioning off Elizabeth Taylor’s jewels • having sex with albino people does not cure AIDS • India-EU trade deal could put millions with HIV at risk

The power of music. Plus: 5 ways to beat the HIV blues

48 POZ HEROES

Jordan Mitzel proves size doesn’t matter when it comes to raising money for HIV/AIDS.

POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for a 8-issue subscription) by Smart + Strong, 462 Seventh Ave., 19th Floor, New York, NY 10018-7424. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 174. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2011 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® is a registered trademark of CDM Publishing, LLC.

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The Facts of Life

T

HE TWO CAMPS OF AMERICAN YOUTH GROWING UP WITH HIV today represent, alternately, a victory and an abject failure of public health.

Because of treatment advances, the lives of many perinatally infected children (those who contracted HIV in utero, during birth or via breast feeding) have been spared and now those children are navigating their way toward or through adulthood. They are the products of public health gone right.

What’s more, our ability to prevent mother-to-child transmission today, particularly in the United States, makes it far less likely that new children will join their ranks.

Other young people acquire HIV behaviorally, through having unprotected sex or sharing injection drug works. People ages 13 to 29 represent 34 percent of all new HIV infections in the United States. This staggering rate of infection despite HIV’s preventable nature is the direct result of a lack of comprehensive sex and health education in America. What we are not telling our kids is killing them. To be fair, some schools and parents do educate their kids about safer sex. But the fact that young people comprise more than a third of all new infections stateside speaks largely to a failure of public health and our unwillingness to address the facts of life.

They’re called the facts of life for a reason. Talking frankly to kids about sex keeps them safe. And if living with HIV for 15 years and disclosing and discussing sex openly with the general public and intimate partners has taught me anything, it’s that we can get over our hysteria about talking about sex—even with kids—when doing so maintains health and saves lives.

The stories of the young people featured in “All Grown Up With HIV” on page 36 highlight how their challenges differ from, and align with, those of us who are older and have HIV. What inspires me most about these young people with HIV is their determination to use their stories to help others stay safe, and their energy to fight for the health care and rights of all people living with HIV/AIDS. It’s a good thing. We’re gonna need them. With the combination of the economic crisis and proposed budget cuts, health care for people with HIV served by the AIDS Drug Assistance Program (ADAP) and Medicaid is not guaranteed. As you will read in “Facing the Future of HIV Care” on page 42, some organizations are positioning themselves to provide care in a new era.

We’ve been saying for months that the ADAP crisis is the tip of the iceberg.

Medicaid is under serious fire, and unlike Medicare, which affects a huge swath of the voting populace, Medicaid addresses the needs of the underprivileged who fall last on the scale of political sway. We must fight for the preservation of Medicaid—and the Affordable Care Act. One way we do that is to tell the people who will be running for reelection that we will vote against those who don’t make the health care of all Americans a priority.

Advocacy is a tough job. Luckily, a whole new generation of young people living with HIV are ready to fight for their lives—and ours. And fortunately, many of them are also old enough to vote.

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poz.com SEPTEMBER 2011 POZ 9

FEEDBACK has been cured is a bit overhasty. Undetectable viral levels are common in the course of HIV/AIDS—that is, until they suddenly start creeping up again. I hope that this never happens with Brown and that the disease has been entirely eradicated.

Yet the skeptic in me wonders whether this is just a protracted latent phase.

ED NEW YORK CITY

REVISITING THE BERLIN PATIENT “Patient No More� (June 2011)

by Regan Hofmann discussed how the groundbreaking treatment that cured Timothy Brown—a.k.a. the Berlin Patient—of HIV offers clues for developing a safe, affordable cure for all.

Editor’s note: You’re not alone in your skepticism, but the most sophisticated lab tests haven’t been able to detect any HIV in his body—including in places it’s known to hide.

The article states that “Brown’s virus was using CCR5 to infect his cells.� In fact, Brown had dual tropic virus; he had not only CCR5-tropic virus, but also CXCR4-tropic virus. This is one aspect of his cure that remains a mystery. Why did the CXCR4-tropic virus not come back? Maybe it was all destroyed with the chemo.

Thank you for the hope.

With the uncertainty we are facing, we sure could use some light. I personally won’t stop believing that one day, whether in my lifetime or not, a cure for everyone will be discovered and be made available. I encourage everyone else to continue believing that there will be a cure someday.

HENRY NEW YORK CITY

I am so proud of Tim! I am a friend of his, and we lived together [through] his ordeal in Berlin. Today, both of us living in San Francisco, we get to see each other dining,

MILE VERGARA PHILIPPINES

An encouraging and hopeful story. But I’m left wondering [if] this certainty that Brown

93

%

The amount of people who disclosed their HIV status to someone within the ďŹ rst year after diagnosis.

Have an opinion about this month’s POZ? Comment on a specific story on poz.com, post a general comment via poz.com/talktous, or send a letter to POZ, 462 Seventh Ave., Floor 19, New York, NY 10018.

26% LOVER/ PARTNER

walking around the city or just enjoying the view of the bay‌. As we say in Germany after a problem: Alles ist vorbei [It’s all over]!

MANUEL GALVEZ SAN FRANCISCO

There’s a large gap in this story, which, if ďŹ lled in, might be just as interesting as this “cure.â€? When did Brown discover he was HIV positive? What anti-HIV drugs was he using, and for how long, before being diagnosed with AML [acute myeloid leukemia]? Is it possible that those drugs caused his AML? TAMARA CITY WITHHELD

Editor’s note: Brown tested positive in 1995 and used different HIV regimens over the years. Whether HIV or his meds played a role in his AML, no one can say.

HOMELESS, NOT HELPLESS In “Shelter From the Storm�

(June 2011), Cliff Williams talked about his struggles to start HIV treatment during his ďŹ ve-year journey through the Philadelphia shelter system.

What a terrifying situation to be in: homeless and HIV positive. Through ACT UP Philly, Cliff has fought [for]

To whom did you ďŹ rst disclose your status?

his way and the way for many others to stable housing. Thank him for sharing his story with us— now that he is properly housed [he is] getting better at taking care of [himself]. But did it have to take ďŹ ve years?

The waiting list for housing for many in [Philadelphia] is a waiting list to die! Thank you POZ for covering real grassroots, heartfelt issues.

WAHEEDAH SHABAZZ-EL PHILADELPHIA

I’m a big fan of POZ magazine; it’s the voice of a lot of people—both the affected and infected—and a venue for their personal stories. You see, when people with the virus step out of the shadows of stigma, that old virus loses its strength. It is up to folks stricken with the virus to share their stories.

I call it sacriďŹ ce and service.

Sure I went through stages with my status; acceptance was hard; and, true, it has been life-changing. I encourage folks who have the virus to educate themselves.

CLIFF WILLIAMS PHILADELPHIA

Correction: In the article “Frontline Physician� (June 2011), we incorrectly stated that hepatitis C is a retrovirus.

HIV and hepatitis C are both RNA viruses.

36% CLOSE FRIEND

47% No

6% MY DOCTOR

Source: POZ March 2011 Survey

14 POZ SEPTEMBER 2011 poz.com

11% 7% MOTHER FORMER LOVER/ PARTNER

8% SIBLING 1% FATHER

3% OTHER RELATIVE

2% OTHER

53% Yes

Has disclosure become easier the more that you’ve done it?

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Visit www.iasociety.org.

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Standing Strong Against Hate and HIV

David Kuria of the Gay and Lesbian Coalition of Kenya fights homophobic hate crimes in Africa.

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THE POZ Q+A

BY ORIOL R. GUTIERREZ JR.

David Munar has been at AFC for 20 years.

AVID ERNESTO MUNAR IS THE PRESIDENT AND CEO OF THE AIDS Foundation of Chicago (AFC). He was appointed in February after serving the organization since 1991, most recently as vice president. In June, President Obama recognized Munar as one of nine “Champions of Change” in the fight against HIV/AIDS. Living with HIV since 1994, Munar has used his status to motivate himself to serve others with the virus. As a gay Latino, he also understands the struggles of the communities most disproportionately impacted by HIV/AIDS. Munar shares his vision for the future of AFC and his passion for running for the cause.

We’ve started our strategic planning process—it’s going to shape our goals for 2012, ’13 and ’14. This is a critical period before health reform is fully implemented [in 2014]. There also will be congressional action during that period on Ryan White funding. We’re aligning our plan with the National HIV/AIDS Strategy (NHAS).

I’m also interested in making sure we do everything we can to meet the needs of the three target populations identified in the NH AS—African Americans, Latinos and gay men—which also are the groups most affected in Illinois.

How has the job transition been on a personal level?

What is AFC doing in anticipation of the

David Ernesto Munar keeps the AIDS Foundation of Chicago running at a brisk pace—when he’s not running marathons to raise funds to fight AIDS.

D

People have been enormously supportive. I’m proud of my institution for promoting from within, especially someone who is openly HIV positive. I’m still trying to get some of the work I did as vice president covered. But I still want to stay in policy work.

16 POZ SEPTEMBER 2011 poz.com

2012 U.S. presidential election and the XIX International AIDS Conference (AIDS 2012) to be held in Washington, DC?

COURTESY OF ANDREW COLLINGS

Going the Distance

What are your most pressing concerns?

We’re starting to look at the presidential campaign cycle. The National HI V AIDS Strategy really gives us a framework to engage candidates about their positions on HIV/AIDS. We’re going to push candidates, particularly on whether they’re on board with global and domestic targets.

For about 20 years we’ve supported candidate questionnaires. It ’s ver y important that we get to every Republican candidate. If they choose not to respond, that’s their choice. But it’s our responsibility to make sure that they hear from us.

As for AIDS 2012, we’re interested in working through the HIV Prevention Justice Alliance and other partners on advocacy training. We’re still figuring it out, but we’re exploring the idea of having a pre-conference session.

Tell us about AFC’s Team to End AIDS.

Team to End AIDS has been a really great fund-raiser for AFC. We train people to complete endurance events. Participants raise funds from their family and friends. This year we have five different events that we’re training people with HIV for in Chicago.

We have also partnered with other groups in DC, Houston and Los Angeles that are using the [t2ea.com] website, the [Team to End AIDS] brand and marketing materials to fund-raise for themselves.

It’s exciting to see this program grow.

I’m personally training for several events this year [and some are for Team to End AIDS]. I’m training for my first triathlon. I’m doing a half marathon and a full marathon. I also got a slot in the New York City marathon. If I haven’t collapsed yet, I’ll run the marathon in Honolulu.

I’m excited that [AFC is] sharing this passion for fitness with other people who care about AIDS, including people with HIV. What are your thoughts on the results of the HPTN 052 study?

We’re excited about the news [that antiretroviral medications can reduce HIV transmission by 96 percent in heterosexual serodiscordant couples], but we’re waiting for the results of other

[similar] trials to see if they produce similar results.

The study results give us a new tool to advocate for universal treatment access. It can help us advocate for [AIDS Drug Assistance Program] expansion. It makes a compelling argument for why we need comprehensive health reform in the United States.

Addressing stigma is going to be key for us to fully realize the benefits of “treatment as prevention.”

We have large numbers of adolescents, which means large numbers of young gay Latinos who are exploring their sexuality. We have a real opportunity to make sure that young gay Latinos start their sex lives practicing safer sex.

If there is one big issue to focus on in the Latino community when it comes to HIV/AIDS, it would be the silence. Latinos who are openly HIV positive have a real opportunity through our own personal stories to break that silence.

What about PrEP versus PEP to prevent

As a long-term survivor, what have you

HIV with meds pre- or post-exposure?

learned living with HIV?

We still have to figure out ways to use [pre-exposure prophylaxis or PrEP] appropriately. There are enormous implementation obstacles, like financing and identifying the subpopulations for whom it’s most indicated.

The virus doesn’t transmit a reader’s manual. I wish it did. Everything changes in your life. Your perspective changes.

Your relationships with family, friends and partners change. You have to think about health insurance. There’s scarcely

“The virus doesn’t transmit a reader’s manual. I wish it did.

Everything changes in your life.”

One of the big issues around [postexposure prophylaxis or PEP] is figuring out strategies to get it to people soon after exposure [to HIV]. The science says for PEP to work, a person has to receive antiretroviral medications within 72 hours of exposure, but preferably before 24 hours.

That means we need to have PEP well promoted. We need to have accessibility to PEP in the evenings, weekends and holidays. And like PrEP, the financing for PEP is a challenge.

What are the biggest challenges facing Latinos when it comes to HIV/AIDS?

Latinos are not a monolithic community.

There are lots of subcommunities—by nationality, by level of assimilation, if you’re foreign born or U.S. born, documented or undocumented. Support that’s culturally appropriate is a big issue.

In the Latino community, we’re still experiencing violence around HIV. Folks don’t want to talk about things that are “distasteful” and stigmatizing like HIV, which makes HIV education a challenge.

any support for how to navigate all that.

I’ve actually been shocked at what little You could hardly miss the PrEP support is available for news late last year, aspeople media with of allHIV rushed to announce to kinds learn to live with HIV. Thisthe is a“pill big flaw can prevent But another in that our AIDS serviceHIV.” system. pharmaceutical prevention techIt’s not been easy. If we don’t deal with nique has had trouble even making these issues, thenthose a society benefiting its name among who need it from treatment asheard prevention, exammost.

Have you of PEPfor (postexposure prophylaxis)? ple, can’t happen.

People who are walking First given to medical around traumatized by theirworkers HIV diagnoin hospitals after accidental sisexposures are not good candidates for treatment. (through a needlestick, I avoided treatment forHIV a long time. I say), PEP consists of an regimen taken for was afraid of28 thedays, side beginning effects andwithin of having 72 hours—preferably less—of a daily reminder of HIV that I possiwas not ble exposure to the virus. In studies ready to accept. It’s something a lot of of workplace exposure, PEP has people experience. charted as much as an 80 percent Thankfully, success rate.I’ve received support, but living with or at risk of a lot People of it has been randomly finding HIV should know about the pockets of support when IPEP, leastyet expected information is hard to find. In 2010, it. AIDS Someadvocates of it cameand from incredibly supproviders portive and caring people living with created at least two web sites— PEPnow.org PEP411.com.

Both I HIV who saw and what I needed before offer PEPI info, including where to knew what needed.

■ get it. Like PrEP, PEP has adherence challenges, side effects and costs.

GoBut to blogs.poz.com/davidmunar for—ML updates only for 28 days.

from Munar on his POZ blog.

poz.com SEPTEMBER 2011 POZ 17

WHAT YOU NEED TO KNOW

BY CRISTINA GONZÁLEZ

15M by 2015

The First Lady (Finally) Mentions HIV/AIDS We love the POTUS and FLOTUS (President of the United States and First Lady of the United States) for getting tested for HIV publicly in Kenya during his presidential campaign. Now, we love Michelle Obama for mentioning HIV/AIDS in her June 22 speech in South Africa, saying: “You can be the generation that ends HIV/AIDS in our time—the generation that fights not just the disease, but the stigma of the disease.... HIV is preventable and treatable and should never be a source of shame.” Now, if we could only get her to mention that HIV/AIDS is the No. 1 cause of death of women ages 15 to 44 worldwide and that AfricanAmerican women are 18 times more likely to get HIV than their white peers.

World political and health leaders gathered in June at the United Nations for a special session of the General Assembly focusing on HIV/AIDS. The high-level meeting, held as needed, is designed to provide Ban Ki-Moon, secretary general of the United Nations, with a global update on the state of the pandemic. At the end of the meeting, a proclamation is released highlighting new goals based on the updates. Two of this year’s key goals were “no children born with HIV by 2015” and “15 million people in care by 2015.” While some criticized the language and stipulations of the proclamation, we just wondered: Who’s gonna pay for all those pills? Especially when many pharmaceutical companies that manufacture HIV treatment refuse to join international patent pools or provide affordable pricing in lowand middle-income countries.

Health Care for People With HIV in Grave Danger

We’ve been saying for months that the current AIDS Drug Assistance Program (ADAP) crisis is but the tip of the iceberg. The number of people on ADAP waiting lists has grown to 8,506 people in 13 states at press time (remember, this doesn’t account for all those who just got booted out of ADAP altogether because of hastily applied and all-too-handy changes in Medicaid eligibility requirements). And baby, we ain’t seen nothing yet. Especially if Congress cuts back on Medicaid benefits. Think of this: While 200,000 people with HIV in the United States depend on ADAP, at least another 200,000 people with HIV rely on Medicaid for their care. That number could skyrocket. In 2014, when the Affordable Care Act kicks in, many people on ADAP will be shifted to Medicaid. At the same time, we may finally start testing more people for HIV and, as a result, find more of the 20 percent of Americans estimated to be living with HIV who don’t know it. Can you imagine what those two things will do to the system? Not a problem, as long as Medicaid and the Affordable Care Act stay in place. It’s time to set political preferences aside and fight for our lives. Do you know your senators and representatives? Now is the time to make their acquaintance. Call ’em. Let them know you won’t die without a fight. Go to http://www.usa.gov/Contact/Elected.shtml to find your elected officials.

18 POZ SEPTEMBER 2011 poz.com

(OBAMA) GETTY IMAGES/MICHELLY RALL; (BLOOD) ISTOCKPHOTO.COM/BUBAONE; (CAPITOL) ISTOCKPHOTO.COM/SLOWGOGO; (U.N. LOGO) DREAMSTIME.COM/MARK EMGE

Michelle Obama in South Africa

HOT DATES / September 18: National HIV/AIDS and Aging Awareness Day /

India–EU Trade Deal Could Put Millions With HIV at Risk

Caption here.

No one could rock jewels like Elizabeth Taylor.

(TAYLOR) GETTY IMAGES; (CHILD) GETTY IMAGES/TONY KARUMBA; (AZAD) GETTY IMAGES

Dame Elizabeth Taylor’s Jewels to Be Sold at Christie’s

The dazzling treasure chest of the late Dame Elizabeth Taylor, lifelong friend of people with HIV and powerful AIDS activist, will go on the block at Christie’s auction house in New York City. Christie’s will devote its entire Rockefeller Center headquarters gallery space to an unprecedented, 10-day exhibition of her collection beginning December 3. A portion of the proceeds from the exhibition admissions, events and publications related to the sales will be donated to the Elizabeth Taylor AIDS Foundation. Taylor also cofounded amfAR, the Foundation for AIDS Research. To read more about her, visit poz.com/elizabeth_taylor

Having Sex With Albino People Does Not Prevent or Cure AIDS

An albino child in Tanzania

Did we really just write that? Yes, we did.

Because some black magic teaches that albino people are an HIV cure. As a result, hundreds of albino people in Tanzania have been killed, and many young albino women and girls raped. Albino “hunters” in the East ast African tourist mecca (home to Mount Kilimanjaro) harvest albino hair, blood, genitals and other body parts to sell on the he black market or to use in bogus cure regimens. Prompted by an international outcry, the Tanzanian government arrested ested suspects (including police) and offered red protection to albinos. Yet reports of attacks ttacks continue. While the albino death toll rises, ises, so does the number of new HIV cases. es.

September 27: National Gay Men’s HIV/AIDS Awareness Day

Michel Sidibe, executive director of UNAIDS, says that about 86 percent of people with HIV/AIDS around the globe who are on treatment are taking generic ARVs made in India.

The European Union (EU) and India are negotiating a free-trade agreement that could delay or restrict the manufacture of generic meds by extending patents, requiring exclusivity and enacting harsher border enforcement rules. Those measures could drive up prices for Indian ARVs, limit dosage options and delay access to treatment.

Further complicating matters, the Indian health minister called homosexuality “a disease, imported from the West.” Ghulam Nabi Azad made the statement at—get this—a recent HIV/AIDS conference. Despite the fact that a video of his comments aired on Indian television, Azad claims he was misquoted and was referring to HIV as a disease.

Activists have denounced his comments, and UNAIDS issued a statement supporting efforts by India’s National AIDS Control Organization to battle HIV stigma and to provide HIV services for men who have sex with men and transgender people.

Ghulam Nabi Azad

HOMOPHOBE?

WE HEAR YOU Judicial Prejudice and HIV

During the past several years, we’ve seen a disturbing trend in the frequency and severity of legal cases that criminalize people with HIV. Criminalization backfires as a public health measure because it deepens stigma and makes people afraid to get tested and treated for the virus. Thirty-four states and two U.S. territories have statutes that criminalize HIV exposure and transmission, according to the Positive Justice Project, and at least 80 prosecutions for consensual sex, biting and spitting have occurred in the United States in the past two years alone. Many of those prosecutions were despite the fact that there was no transmission of HIV. (In some cases condoms were used—which meant there was little risk for HIV infection— and in the cases involving spitting or biting, there has never been a recorded case of HIV transmission through saliva.) Here, we share some of your recent comments on HIV criminalization.

Most of the egregious prosecutions of HIV-positive people are unconstitutional to begin with. The Nebraska law making autonomous bodily functions like sneezing or vomiting a felony for HIV-positive people is a case in point, as is the case of the woman sentenced to eight years for “failing to disclose,” despite two witnesses and a front-page newspaper article indicating otherwise. In these cases, the convictions are patent violations of basic constitutional principles regarding the evidence of guilt and could [lead to legal] appeals that could [end up in] the Supreme Court.

—Jeton Ademaj, City and State Withheld

ISTOCKPHOTO.COM/JAMES STEIDL

Last time I checked, it takes two people to have sex. The [HIVnegative] partner is just as responsible as the person who is HIV positive, because, in most cases, they have a choice to use a condom…. Also, the results from the recent National Institutes of Health HPTN 052 study show that [in heterosexual HIV-serodiscordant couples], if the HIV-positive partner is on antiretroviral treatment, there is only a 4 percent chance of HIV transmission—even if no condom is being used.

—Daniel Angelis, City and State Withheld

Someone needs to do something to combat the ignorance that is putting young men in prison for a long time even though the transmission of the virus did not take place.

Having [safe] sex and still being put in prison? The people bringing these cases have a lot to answer for.

—Joel Jordan, Marshall, Texas

What are the repercussions for [HIV-positive] individuals who are with partners and knowingly infect them, and don’t care? I honestly think that this has to be addressed. Many people are having sex, unwittingly, with partners who are engaging in secretive and risky sexual behaviors. These people need a voice in the conversation, but not the paranoid and insane voice that is permeating bad legislation.

—Liz Morten, City and State Withheld

Visit POZ’s new criminalization page at poz.com/criminalization to find out what you need to know to stay safe and free.

poz.com SEPTEMBER 2011 POZ 23

WHAT MATTERS TO YOU

BY TIM MURPHY

Finding True Love With HIV

Achieving a happy relationship can be easier than you think—despite the obstacles presented by HIV.

I

F THE NEWS THAT HAVING A PARTNER CAN BOOST YOUR HEALTH makes you wonder, “How will I ever find someone to love me with my HIV?” stop stressing. Though isolation and stigma—not to mention the challenges of facing ongoing health concerns and navigating how and when to disclose your status—can be obstacles, they are not closed doors. Many HIV-positive people, both gay and straight, have overcome them. Just ask Bonetta Graves.

Graves remembers the first time she met her dream man, William Spratley, in their hometown of Hopewell, Virginia. “I loved his maturity and experience,” says Graves, 42, now a medical case manager in Manning, South Carolina. “I’ve always had an old soul.”

But at that time, 1987, Graves was anything but old: She had just turned 18—and Spratley was 38. “My parents disapproved,” she says. “But I was headstrong.” Moreover, both she and Spratley were doing crack—in fact, they first met when Spratley’s nephew brought Graves by Spratley’s place on a drug run. “I was wild in my youth,” admits Graves, who kicked drugs more than a decade ago.

Their romance was short-lived: In 1989, Spratley went to prison on a drugrelated charge of violence. After visiting him there a few times, Graves told him, “I can’t wait around for you.” A year later, Graves, working in the federal Job Corps in Maryland, learned she had HIV. “I cried for three days,” she says. She told Spratley,

24 POZ SEPTEMBER 2011 poz.com

but he waited years to be tested, fearing a positive diagnosis would stigmatize him in prison. Eventually he got tested—and it was negative. Graves had gotten HIV from someone else.

The following years were not kind to Graves. She became seriously ill with pneumonia in 1991, recovered and continued doing drugs on and off. At a rehab program, she met an HIV-negative man.

They married and had two (HIV-negative) girls, now 14 and 11. The couple also kept doing drugs—and then he started abusing her. “There were stitches, broken ribs,” she recalls. But because he was the breadwinner and accepted her despite her HIV, she stayed with him.

“I felt like I had to because he was ‘taking care’ of me.” Her self-esteem was low—because of her drug habit, she says, not just HIV. “I hadn’t done anything with my life, so I was timid when it came to relationships. My HIV [didn’t help].”

Graves kicked drugs for good after her mother died in 1999. “I had two kids, and I was tired of all the drama. I was ready to move on, but he would never leave,” Graves says. Finally, in

JAMES QUANTZ JR.

Bonetta Graves lives with HIV and the love of her life, William Spratley.

2005 the couple decided to divorce.

A new chapter loomed. “I was elated but scared, because I had to raise two girls on my own,” she says. “But I vowed I wouldn’t get with a new man just because he had money and looked good.”

Then she heard that Spratley was out of prison, where he’d been drug-free since 1994 and had become a legal advocate to other prisoners. Graves ventured introducing her girls to him. “He hugged them and opened his heart to them,” she says, “and honey, after that, it was on.”

Just like that? Graves said that the fast reunion felt right, like they were picking up naturally where they’d left off years before. “It was like the missing piece of the puzzle,” she says. “Plus, he was gentle. There was no arguing.”

Six years later and drug-free, Graves and Spratley seem to have found the clarity of mind to do things right this time around. They’ll marry next year.

Saturdays, Spratley takes the girls to the library, and the whole family loves to thrift shop and fly kites together, a special

hobby of Spratley’s.

Graves has advice for other HIVpositive folks looking for love. “Don’t ignore red flags,” she says—such as early indications of violence. “Hang in there looking for [the right] love, because you never know when the tables will turn.”

Graves says full, honest communication is what’s allowing her and Spratley to succeed this time. Spratley agrees: “She doesn’t let me run from things,” he laughs. “There’s no woman more perfect for me.”

HOW TO: MEET YOUR MATE Advice From the Experts

SHANTRELL JACKSON, cybercenter associate at Atlanta’s SisterLove, HIV-positive coordinator of its Dating and Disclosure workshop: “If you want others to be OK with your HIV, you have to be OK with it. Support groups really helped me.

“Don’t settle because of HIV. Date someone you see yourself being with.

“I don’t disclose my HIV right away.

That’s too serious, too soon. When I do, I do it in a public place where I feel safe and secure.” If they reject you?

“You don’t want to be with someone who’s not comfortable with all of you.

But don’t necessarily expect them to be OK with it right off the bat.

“To make it work long-term, you need honest communication, even if that means couples counseling.”

CHRISTOPHER MURRAY, LCSW, Manhattan psychotherapist with longtime HIV-positive clientele: “Take the time you need to disclose— you’ll know when you’re ready.

Experiment with both telling up front and waiting a little. Just [don’t] do anything unethical or unsafe [like having unprotected risky sex without disclosing].

“Give people time to adjust to your HIV. Some people will say, ‘It’s fine,’ and you’ll never hear from them again.

But others take a little time, then, a few months later, it’s no biggie.”

Positive Women Share Secrets to Their Success

TONYA RASBERRY, peer counselor, Auburn, Washington, has been with her HIV-negative partner for a few months: “You can learn to achieve good communication by really listening, putting yourself in the other person’s shoes.

I am learning to do that in my new relationship, and I’ve never been happier.”

SHANA COZAD, HIV prevention educator, Tulsa, Oklahoma, has been with her HIV-negative partner “since the dawn of time”: “Be super-duper open and honest. A sense of humor goes a long way, too.

“Sex can be intimidating. Don’t expect it to be all fireworks and trumpets [at first]. Just be fine that they aren’t totally panicking.

“Someone who scorns or shames you about having HIV is a huge no-no.

I don’t care how many margaritas they’d had or if they say they’re sorry.”

ANDREA HARRINGTON, HIV prevention specialist, Philadelphia, has been married to her HIV-positive partner for six years: “Never be ashamed because you’re positive. I thought HIV made me damaged goods, not worthy of love. But being HIV-positive did not mean I had to settle for substandard. I [waited] until my prince came, willing and

accepting of all of me. My husband and I found each other while basking in the light of a newly found independence called self-worth.

“To make it work, you must be open with each other. Secrets are for the Colonel’s chicken recipe.”

Find a Friend or Date Online

The largest online HIV match-up service—for love or friendship— is POZ Personals, with more than 125,000 members and a new, easy-to-use design. Sign up for a free or premium account at personals.poz.com Some tips for using POZ Personals: ●

● ●

●

●

Post a clear photo of yourself.

Profiles with photos get more attention. Avoid dark sunglasses, hats, strange lighting and poses.

Go casual and be sure to smile.

Be honest. Say who you really are and be clear about what you’re really looking for.

Let your personality shine through. The more info you provide in your profile, the more likely someone will find something in common with you and strike up a conversation.

Sign up to be Catch of the Day on your Edit Profile page.

poz.com SEPTEMBER 2011 POZ 25

TREATMENT NEWS

BY LAURA WHITEHORN

More Access to Medicaid for People With HIV

(TEST TUBE) ISTOCKPHOTO.COM/RICHARD WOZNIAK; (BANDAGE) ISTOCKPHOTO.COM/ROB MCROBERT

Antiretroviral meds may give birth to non-HIV benefits.

Test-Tube Babies Researchers have been experimenting with HIV drugs lately—not to lower viral loads (we already know how to do that), but for other health benefits. Here are some intriguing ways HIV meds might be used, all still in early experimental stages.

Will these meds perform in your body as they do in the test tube? Stay tuned. ● FIGHTING CANCER WITH KALETRA: The drug lopinavir (found in Kaletra) seems

to kill cervical cells that have been infected with the human papillomavirus (HPV)—cells that can go on to become cancerous if left to their own devices.

Lopinavir seems to target the precancerous cells without harming other cells in the cervix. The dose needed to shut down the cells is some 10 to 15 times higher than the lopinavir concentration in Kaletra, so researchers are developing and testing a high-potency topical version.

For women with HIV, who have much higher rates of HPV-related cancers than negative women, this could be a very useful development. And it seems likely that it would work on anal cells too, thus defending against HPV-related anal cancer. ● REDUCING INFLAMMATION WITH TENOFOVIR OR SELZENTRY: HIV not only kills

off some immune cells, but also revs up the immune system, keeping cells active when they should be resting. Tenofovir (an HIV drug found in Viread, Truvada and Atripla) might suppress or reduce this chronic activity. This could, in turn, prevent some immune damage that takes place in people living with the virus—even when HIV meds are keeping their viral loads undetectable—and it may even help reduce the risk of conditions associated with inflammation.

And since 2009, Selzentry (maraviroc) has been known to suppress immune inflammation. This entry inhibitor continues to be studied for that effect.

A policy change made recently by the U.S. Centers for Medicare & Medicaid Services (CMS) allows states to tap into resources of more than 1,000 Medicaid projects supporting people living with HIV. Previously, positive people could only get Medicaid if they had an AIDS-related disability or very low income. The change makes care available to more people, alleviates some pressure on AIDS Drug Assistance Programs and helps states expand Medicaid as required by the Affordable Care Act, slated for full implementation in 2014. All the more reason to resist threatened cuts to Medicaid!

Help for Prisoners

If you’re reading this issue of POZ in a jail or prison cell, or if you have a friend or family member doing time, there’s a free newsletter for you. Prison Health News, produced by two HIV/AIDS activist groups in Philadelphia, carries articles by prisoners and information that can serve as a lifeline to positive people behind bars. For a free sub, write to Prison Health News c/o Philadelphia FIGHT 1233 Locust Street, Fifth Floor Philadelphia, PA 19107.

poz.com SEPTEMBER 2011 POZ 29

FDA Approves a New HIV Drug

The U.S. Food and Drug Administration (FDA) has approved Edurant (rilpivirine), a new non-nucleoside reverse transcriptase inhibitor (NNRTI)—the class of HIV meds that also includes Sustiva (efavirenz). Edurant is approved for people who haven’t taken HIV drugs before.

Like all HIV meds, it’s taken with other drugs to make a complete combo. (Search “Edurant” at poz.com for more information.) And watch for a new tablet that will combine Edurant and Truvada (tenofovir/emtricitabine) for an all-in-one HIV regimen. It’s expected later this year.

They’re Putting Viagra in Condoms???

Technically, no. But a new line of condoms is being lined with a Viagra-like gel to increase blood flow and banish erectile dysfunction. Condoms successfully reduce the risk of HIV if used properly, which may be difficult if a man cannot get (or stay) hard. Erectile dysfunction caused by ill-fitting or incorrectly applied condoms or by a stop in the action makes it tougher for some men to practice safer sex. The CSD500 latex condom, a.k.a. the “Viagra condom,” is awaiting regulatory approval in Europe. Next stop, stateside? Here’s hoping.

BY THE NUMBERS

How often men who have sex with men (MSM) should get an HIV test, even in the absence of unprotected sex or multiple partners, according to the CDC’s Morbidity and Mortality Weekly Report this past June. This changes the CDC’s prior recommendation of yearly testing for MSM.

The prevalence of positive tests among a group of MSM who thought they were negative, according to the same report.

The range of vitamin D supplementation HIV-positive people in the United States need each day, according to an expert panel of the Endocrine Society. This is about two to three times the daily amount needed by their negative peers.

The number and proportion of African Americans among those people who tested positive.

In the works: A condom to help you get hard (and have safer sex)

30 POZ JUNE 2011 poz.com

Liver disease is the No. 1 cause of death for people with HIV, whether or not they have hepatitis. Taking HIV meds consistently is the No. 1 step in maintaining liver health.

ISTOCKPHOTO.COM/MAARTJE VAN CASPEL

The number of people who tested positive for HIV in a CDC initiative that screened nearly 2.8 million Americans between October 2007 and September 2010.

ISSUES

Treatment

SEPTEMBER 2011

ARVs as prevention: Great promise and the questions that remain

By Deirdre Grant

Antiretrovirals (ARVs) used to treat HIV infection have proved to be powerful tools for HIV prevention. Scientific evidence shows that early treatment of ARVs in HIVpositive people dramatically reduces their risk of transmitting the virus to their partners.1 Promisingly, recent studies show that ARVs can also be used as prevention in HIVnegative people. However, there is much to learn about this new method of prevention intervention and even successful study results raise many questions that need timely attention from stakeholders if the promise of research is to be turned into practice.

Proof of concept In November 2010, the first ever pre-exposure prophylaxis (PrEP) effectiveness data were published in the New England Journal of Medicine. These data came from a multi-national study known as iPrEx. It showed that a PrEP regimen of once-daily TDF/FTC (marketed as Truvada), a drug approved for use in combination therapy to treat HIV, reduced the risk of HIV infection by approximately 44 % in HIVnegative gay men, other men who have sex with men (MSM), and transgender women.2 Participants in the TDF/FTC arm of the study who better adhered to the study regimen (as measured by levels of drug detectable in the blood of these participants) showed even higher rates of protection against infection. All trial participants also received a comprehensive HIV prevention package, including testing for other sexually transmitted infections (STIs), risk reduction counseling, and condoms.

The results of the iPrEx trial built on momentum from the CAPRISA 004 trial, which proved the efficacy of a 1% tenofovir gel, called a microbicide. This study, conducted in heterosexual women in South Africa, showed that the gel reduced risk of HIV by approximately 39%. The field of ARV-based prevention saw two proof-of-concept results in less than six months. And while each of these data sets was limited to its study population and respective regi-

men, the field was buzzing in anticipation of the results of other ARV-based prevention trials.

Trial stopped early Data from additional PrEP effectiveness trials were not expected until late 2012 or early 2013.3 Thus, the field of HIV prevention was caught off-guard when in April of this year a study, known as the FEM-PrEP trial, closed ahead of its anticipated end date.

The FEM-PrEP trial was designed to study the safety and effectiveness of once-daily oral TDF/FTC for HIV prevention in heterosexual women at sites in Kenya, South Africa, and Tanzania. It was implemented by FHI, a global health and development organization, in partnership with local research centers and funded by the U.S. Agency for International Development (USAID), with early funding from the Bill & Melinda Gates Foundation.

After a scheduled meeting of its independent data monitoring committee (IDMC), it was revealed that over three quarters of the anticipated HIV infections had occurred in the study, and there was no difference in the number of infections between the group receiving TDF/FTC and the group receiving a placebo pill. The trial team concluded that continuing the trial to its scheduled end in an attempt to demonstrate effectiveness was futile in these circumstances.

Detailed analyses are underway to help understand this outcome. However, this does not change the effect seen in the iPrEx trial, which showed that daily oral TDF/ FTC was effective in reducing HIV risk in MSM.

Better adherence to the iPrEx study regimen greatly increased protection against HIV infection.

What does this early trial closure mean for oral PrEP in women?

It is still unclear whether or not oral TDF/FTC works to prevent HIV in women. Daily oral TDF/FTC was not effective at reducing risk of HIV infection in women participating in the FEM-PrEP trial, but researchers are uncertain whether this result was due to a) low adherence to the

study product by the women in the trial, b) whether TDF/ FTC does not prevent HIV in the trial populations where it was conducted, c) whether TDF/FTC given in this regimen simply does not prevent HIV in women, or d) another unknown factor.

For PrEP to be effective in preventing HIV infection during sexual exposure, the right amount of drug has to be in the right place (i.e., the vagina or the rectum) at the right time (before or perhaps shortly after sexual contact). Currently, it is unknown what regimen will provide the drug levels needed for protection in either the vagina or the rectum. Researchers have not yet identified a threshold drug level for providing protection, although one may be identified over the course of future trials and related research. However, one possible explanation for the FEM-PrEP results is that the TDF/FTC levels in the vagina that resulted from daily oral pill use were inadequate to prevent HIV infection. In the CAPRISA 004 microbicide trial, 1% tenofovir gel did reduce women’s risk of HIV infection. This gives evidence that if enough ARV is present in the vagina at the time of exposure, ARV-based tools can work for women. Exactly which tools are effective—oral versus topical medication, vaginal ring, or long-acting injectable dosing—remains to be seen. Additional research is needed to help answer these questions.

settings and populations. The U.S. National Institutes of Health is looking into the possibility of funding demonstration projects in a handful of U.S. cities.

At the same time, the U.S. Centers for Disease Control and Prevention (CDC) is working on Public Health Service (PHS) guidelines for PrEP. In January, the CDC published interim guidance on PrEP for health care providers who may want to provide PrEP to high-risk MSM.4 A draft of the PHS guidelines is expected to be ready for public comment in late 2011.

It was also made public earlier this year that Gilead, the pharmaceutical company that produces Truvada (TDF/ FTC), is planning to file an application with the U.S. Food and Drug Administration (FDA) for a prevention indication.5 If approved, this could help with financing and monitoring of TDF/FTC as PrEP. Currently, Truvada is only available via a prescription for off-label use.

Conclusion ARV medications that are powerful life-saving treatment for millions of HIV-positive men, women, and children are now showing great promise for HIV prevention.

Development of and access to these new prevention tools should be prioritized among federal governments, public health agencies, and other stakeholder s to bolster current prevention options and curb the global HIV epidemic.

It is unknown what PrEP regimen will provide the drug levels needed for protection against HIV in either the vagina or the rectum.

What’s next?

In addition to the ongoing research to help determine the effectiveness of oral PrEP and ARV-based microbicides in women, there are a range of follow-up activities that have been spurred by the positive results of iPrEx showing that daily TDF/FTC can reduce risk in HIV-negative MSM. The iPrEx open-label extension (OLE) study is a continuation of the iPrEx study designed to provide additional information about the safety of PrEP and the behavior of study participants when PrEP is taken over a longer time period. Importantly, the study may also shed light on whether or not participants behave differently during sexual contact knowing the intervention is partially effective.

The study began in June 2011 and will follow participants for 72 weeks. It is open to all iPrEx trial participants, and HIV-negative participants will be offered daily TDF/FTC. There will be no placebo arm in this study.

Advocates are also pushing for demonstration projects for PrEP in MSM in the U.S. and elsewhere. These projects would look to test a pilot program in a small area or population to look at how PrEP would be used in a “real world” setting, outside of a clinical trial setting. They can provide answers to many outstanding questions (e.g., What if PrEP were offered at local health clinics? What would that program look like? How would people access it? What is realistic for testing frequency?), as well as provide essential data for PrEP use and implementation in a range of

2

Deirdre Grant, Senior Program Manager, AVAC

Couples Voluntary HIV Counseling and Testing for Men Who Have Sex with Men

By Patrick Sullivan and Robert Stephenson

Couples Voluntary HIV Counseling and Testing (CVCT) is a new HIV prevention intervention for men who have sex with men (MSM) in the U.S.1 CVCT is notable for several reasons: it addresses a critical deficit in HIV prevention interventions for MSM;2 it is responsive to recent data which suggest that addressing male couples may be a high-leverage approach for reducing HIV transmissions;3 and it offers an opportunity for American prevention scientists to learn from and expand upon the experiences and successes of previous models of CVCT developed in Africa.

SEPTEMBER 2011

What is CVCT? CVCT is an HIV testing service in which two members of a couple receive all phases of the HIV counseling and testing process — pre-test counseling, collection of specimens, return of test results, and post-test counseling — together, in the same room. The original CVCT intervention was developed in Rwanda in the late 1980s by Dr. Susan Allen.4 Dr. Allen was implementing an HIV screening program for women in Rwanda, and recalls women who received HIV test results noting the importance of also testing their husbands. In response, the CVCT service was developed, and has since become a mainstay of HIV prevention programs in many parts of Africa.5 At first glance, CVCT may appear to run contrary to many conventions of HIV testing. Early in the epidemic, the consequences of receiving an HIV-positive test result, or perhaps of being tested for HIV at all, were dire, and many protections were put in place around the testing process. Among these protections was the right to confidentiality. These protections were needed, given the stigma of HIV which continues even today. However, now legal protections are stronger, especially in light of the Americans with Disabilities Act protections. HIV is a disease that is manageable, if not curable. And testing is now routinely recommended for Americans aged 13–64, even if no behavioral risk is identified.6 Although clients in many medical settings are allowed to be accompanied by a support person when discussing their medical test results and treatment plans with their health care provider, many HIV testing services do not extend this same opportunity to clients seeking HIV screening. This practice is unique to some HIV testing processes, which can send the message that testing is a matter so private that even intimate partners cannot observe it, and inadvertently promotes stigma associated with testing. For those who are sexually active and test HIV-positive, it also creates a further source of anxiety and obligation to tell one’s sex partners about his or her diagnosis. It has long been recognized that disclosure of HIV-positive status to sex partners is a critical step in preventing sexual transmission of HIV. However, disclosure is difficult for many people living with HIV.

al AIDS epidemic, provides technical assistance for support of CVCT services in all PEPFAR-supported countries.

CVCT is effective for several reasons, all of which support the concept of testing being an effective prevention strategy. First, both members of a couple know their HIV status. This may seem an obvious point; however, the prevalence of late HIV diagnosis among the greater population,8 and the high prevalence of unrecognized HIV infection among MSM, especially MSM of color, 9 underscore the importance of knowing one’s serostatus.

Second, disclosure of HIV status is part and parcel of the intervention, so that at the end of the session both partners know each other’s statuses. This is important because our own work suggests that only about six out of ten MSM in the U.S. discuss their HIV serostatus before having sex with a new male partner.9 Third, the CVCT intervention allows the couple a space to discuss how they wish to manage the issue of HIV in their relationship, with access to a supportive and trained counselor.

For MSM in the U.S., it may be especially important to focus new HIV prevention interventions among couples. According to our analyses of CDC behavioral surveillance data, most new HIV infections in MSM were estimated to arise from main sex partners, not casual ones. 10 This is because MSM tend to have sex more frequently, are more likely to have anal sex, and are less likely to use condoms, with main partners versus casual partners. Therefore, assuring correct knowledge of HIV serostatus and promoting harm reduction within male couples is a logical way to get maximal impact from an HIV testing intervention. Furthermore, this intervention allows a structured opportunity for couples to discuss and clarify their agreements about monogamy or rules about additional sex partners.11

It has long been recognized that disclosure of HIV-positive status to sex partners is a critical step in preventing sexual transmission of HIV.

Why is CVCT effective as an HIV prevention intervention?

African studies of CVCT show a reduction in HIV transmission among serodiscordant couples by about 50% compared to testing only one partner in a couple. CVCT has been described by the Centers for Disease Control and Prevention (CDC) as a “high-leverage” intervention in African settings.7 The President’s Emergency Plan for AIDS Relief (PEPFAR), a U.S. initiative to address the glob-

GMHC

GMHC.ORG

Is CVCT acceptable and appropriate for male couples?

The CVCT service is not for everyone. It should always be offered with an alternative of individual voluntary HIV counseling and testing (VCT). As part of pre-test counseling in CVCT, counselors are trained to assess the willingness of partners to agree to some basic rules, such as keeping their partners test results confidential, and making any decisions about disclosure jointly. If these conditions are not agreeable to both partners, then individual VCT is recommended.

Preliminary research conducted at Emory University Rollins School of Public Health suggests that CVCT is well received by many MSM couples. In the past 2 years, focus group discussions with MSM in Atlanta, Chicago, Pittsburgh and Seattle have produced results identifying several main themes.12 First, many MSM who learned about CVCT put the service in the context of relationship

3

ISSUES

Treatment

Editor: Robert Valadéz Assistant Editor: Nathan Schaefer Art Director: Adam Fredericks GMHC Treatment Issues is published by GMHC, Inc. All rights reserved.

Noncommercial reproduction is encouraged.

GMHC Treatment Issues 446 W. 33 Street, New York, NY 10001 gmhc.org © 2011 Gay Men’s Health Crisis, Inc.

(i.e., the couple could be tested in a time no longer than the time required to test the two partners separately). The usual time for providing the CVCT intervention is between 45–60 minutes, inclusive of all testing and counseling procedures.

In the pilot work conducted at Emory University, signs in the reception area of the testing service announced the availability of services for couples. However, anecdotal evidence suggests that in other testing settings where CVCT is not available, MSM couples ask to be tested together, implying not only a demand for this service, but an expectation to be able to test as a couple. Routinely required information about demographics, risk behaviors, and testing outcomes are collected using state-administered forms, so provision of testing is documented.

A call to action

milestones, seeing testing together as an expression of commitment to the relationship. In every focus group, at least one participant likened the ritual of testing together to the ritual of marriage for male-female couples. Also, many HIV-positive participants reported having used individual VCT as a pretext to disclose their HIV-postive status to partners in the past, and expressed interest in the CVCT service as a facilitated means of disclosure in the future. Participants generally felt that the service would be most appropriate for couples who had developed a certain degree of trust, especially longer-term couples. Since August 2010, Emory University Rollins School of Public Health has offered CVCT as part of a randomized prevention study at a community-based organization, where positive reception of the interventions is consistently reported by participants.

Rates of new HIV diagnoses among MSM are on the rise after periods of declining HIV reports in the late 1990s.13 Discouragingly, only 20% of HIV prevention interventions are targeted specifically for MSM, despite the fact and MSM are estimated to comprise over half of new annual HIV infections.14 CVCT is an intervention that is proven to reduce HIV transmission in male-female couples, is recommended for male couples outside of the U.S., and can be provided with minimal additional training of existing counselors. CVCT also addresses HIV infection risk from main sex partners, who are a major source of new HIV infections among MSM. In short, the HIV epidemic among MSM is in critical need of effective prevention interventions, and CVCT is a promising new tool.

CVCT is also congruent with calls to reduce HIV transmission by promoting the stability of male couples,15 such as through laws favoring marriage equality for same-sex couples. Testing a couple together is an opportunity to validate the couples’ legitimacy, and to recognize and applaud their desire to address the realities of HIV in their relationship.

In the coming year, four HIV prevention organizations in Chicago and Atlanta will roll out the CVCT service for male couples, and continue evaluation of the service for MSM. Community forums will also be hosted in Chicago, Atlanta, and other cities to share information about the service and begin a dialogue about the role of couples testing in comprehensive HIV prevention services for MSM.

How can CVCT be integrated into existing HIV prevention programs and organizations?

Patrick Sullivan, Associate Professor of Epidemiology, Emory University

Support for GMHC Treatment Issues was made possible through charitable contributions from:

The Shelley & Donald Rubin Foundation

An important aspect of the U.S. adaptation of the CVCT intervention for MSM is that the adaptation was undertaken by a diverse group of HIV prevention researchers and program experts, including representatives from community-based organizations. From its inception, priority was placed on developing a prevention service that could feasibly be integrated into existing HIV prevention practice settings. For example, the intervention was developed to be time-neutral from the HIV counselor perspective

4

Robert Stephenson, Associate Professor of Global Health, Emory University For a full list of references, please visit: gmhc.org/research/ treatment-issues.

SEPTEMBER 2011

COMFORT ZONE

BY CRISTINA GONZÁLEZ

Five Ways to Beat HIV Blues With Music 1. JOIN THE BAND. Dust off the drums and invite friends over for a jam session. There’s no pressure to ever make it out of the garage—just have fun bonding over a shared interest, building a sense of community and rockin’ out.

2. BE A SPECTATOR. You don’t have to play an instrument to be musical. Hit up free concerts in the park (classical, hip-hop, rock!), support your community theater, or treat yourself to a live blues or jazz show.

GETTY IMAGES (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

GETTY IMAGES

3. CREATE RHAPSODY. Give the healing gift of music to others. Does your local hospital offer music therapy? Volunteer your time and talents. You’ll be doing what you love and will get joy by giving it.

Life, in Harmony

4. TAKE A LESSON OR SIX. There’s that flier again: “Guitar lessons. Call…”

Tempted? Go for it!

Learning something new can be a healthy distraction—and a great way to get out, meet new people and get in tune with life.

The song that pushes you to the finish line. The rhythm that has you strutting down the street.

The tune that helps you remember. The one that makes you forget. That’s the power of a well-written lyric, a moving solo or a peaceful melody. That’s the power of music. Whether you play and sing or just watch and listen, chances are you’ve already experienced the regenerative gifts of song—on both your mental and physical health. Music can lower your blood pressure, help you find peace or inspire you to get moving. It’s a creative outlet, a distraction and a simple pleasure. So, find your perfect beat, turn it up and drown out the stress of HIV.

5. START A MIX CD OF THE MONTH CLUB. Invite friends over for wine and cheese —and ask everyone to bring a mix CD. You’ll discover fresh tunes and new friends—all while building an impressive music library.

poz.com SEPTEMBER 2011 POZ 35

36 POZ JUNE 2011 poz.com

All Grown Up With HIV Thirty years into the epidemic, a new crop of kids faces adulthood—with HIV. From babies born with the virus to teens who acquired it behaviorally, members of this new generation struggle to navigate survival while making their way through the world. The stories of these four brave young people are examples for how to succeed in spite of HIV. They also serve as cautionary tales, reminding us of the price we pay for not teaching our children well. Let lessons be learned.

BY CRISTINA GONZÁLEZ

HAROLD MILLER

CREDIT

T

HE HEADLINE-MAKING NATIONAL SURVEY OF FAMILY GROWTH, released this year by the federal government, reported that teenage abstinence was on the rise—from 22 percent in 2002 to about 28 percent by 2008. But the media coverage buried the lead: Seven out of 10 people in their late teens and early 20s are having sex.

This might not be an issue if many of them weren’t having unsafe sex. But they are, in droves. Philadelphia, for example, has the highest rate of teen sexual activity in the country—and the lowest rate of condom use.

It should come as no surprise then that Philadelphia also has the nation’s fifth highest teen HIV rate. The story is repeated all over the country. In Tennessee the number of people ages 15 to 24 who were newly infected with HIV jumped 32 percent between 2005 and 2009. Overall, Americans between ages 13 and 20 comprise 34 percent of the country’s new HIV infections.

Globally, people younger than 25 account for more than half of all new HIV cases.

As long as we deny that kids are having sex and refuse to teach comprehensive sex ed, offering instead abstinence-only or abstinence-until-marriage, kids will remain powerless to protect themselves while gripped by raging hormones. You don’t need a degree from the Harvard School of Public Health to foresee the consequences to individual and public health.

When we teach kids not to have sex in order to protect their virginity, the message often comes through as, “You can do anything except put a penis in a vagina.” As a result, many young people have oral and anal sex, often unprotected, in the name of abstinence. Others, lacking any sex or HIV education at all, see no reason to put on a condom (similarly, they don’t know the risks in sharing injection drug equipment). Add these practices to the incidence of sexual abuse of young people, and you have a recipe for an HIV epidemic.

Paige Rawl, Other kids are growing up with HIV—those who contracted HIV in utero, at now 17, was birth or through breast feeding from their HIV-positive mothers. While motherborn with HIV. Read to-child transmission has been nearly eliminated in the United States, there are a her story fair number of survivors who were born with the virus. on page 41.

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All these young people face similar challenges: learning to discuss and disclose HIV while developing social skills; dealing with HIV stigma while striving for self-esteem and self-empowerment; committing to the responsibility of daily treatment at a time of carefree youth; being accountable for their health and the health of others while they are still developing a sense of responsibility; and facing mortality at an age when feeling invincible is the norm. On top of this, they face the additional challenges of anyone living with HIV: handling the diagnosis of a serious and lifelong disease; finding, getting to, paying for and tolerating care and treatment; negotiating personal and family relationships in the face of HIV; dealing with mental health issues; and fighting stigma, discrimination and fear.

What is amazing is how well many young people deal with HIV. The first-person accounts of the strong, brave, smart “kids” on the next pages show that with the right attitude, the right support system and connection to care and treatment, growing up with HIV doesn’t have to rob kids—and society as a whole—of the glories of youth.

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Having found power in disclosure and selfadvocacy, musician Lafayette has found a new life. Now that he has broken down his own stereotypes about HIV, Lafayette is trying to help other people do the same.

I was in the doctor’s office. I was 13; it was a few months after my mother passed away. My grandmother took me for a checkup, and I was then told about me being HIV positive.

My grandmother knew what I didn’t: My mom died of HIV, HIV that she passed along to me. They told me, and I took the meds but didn’t learn anything about HIV. At that age, I had no idea about the stigma or life spans.

Having to take medications was like taking vitamins: You don’t know what it’s for, you just do it ’cause it’s good for you.

And then high school hit. I started to hang around kids my age, and everybody was talking about sex, and HIV came up in the picture. I wanted to tell them I was positive, but I didn’t know that much about it to tell and to be able to defend myself. I didn’t want to be looked at as different. So I didn’t disclose. There were so many feelings, and I was so angry for so long. It took me a long time to get over the anger at my mom—that she didn’t tell me herself, when we were so close and shared everything, and then to find out this big thing and to deal with it on my own. I was angry at her, God, myself, everybody. And then there was my grandmother.

My grandmother was the primary guardian to my sister and me after my mother passed.

My sister, who is not HIV positive, was too young to remember my mother’s death. My grandmother, who is a sweet and caring woman but also very traditional, put me in a box of fear. She made me believe that disclosing my status would change how people treated me, how they looked at me. It wasn’t true, to me—I knew someday people would understand and accept me for me.

When I was maybe 17 or 18, I woke up every day thinking about HIV and [I wanted to make it go away, to pretend it wasn’t there] so I stopped taking medication. I would hide it, pretend. I was young and irresponsible. And I was having sex.

The turning point came with my last two girlfriends. I disclosed to [the first one] right off the bat. Still we were reckless and irresponsible, and she got pregnant. She had a miscarriage, and to this day she’s negative. Second relationship, almost the same thing. She had an abortion. I was sitting in an abortion clinic, and I thought, “How the hell did I end up here? I’m reckless, and the people I’m with are Lafayette reckless.” That was my wake-up call, the moment Sanders tells kids of “You have to get your shit together.”

HIV is I hooked up with iChoose2live [a youth organifor real.

STEVE MORRISON

Lafayette Sanders, 24, West Philadelphia, Perinatally Infected

RICHARD FLEISCHMAN

zation designed to encourage self-esteem and awareness about HIV and other issues]. I thank God for everyone He has placed in and out of my life. He uses who He chooses when He chooses. If it weren’t for me meeting [hip-hop artist] Lee Mekhai at a show in Philly, I wouldn’t have found out about iChoose2live and the founder Shenille Melton. That opened a lot of doors for me as far as reaching the youth.

Since I had already taken a course for certification in HIV Peer Education through Philadelphia FIGHT’s program, Project TEACH, I thought about disclosing my status. For 10 years, my grandmother was the voice discouraging me from disclosing. I was secluded. She drilled into me that disclosing was not safe, that “the neighbors are gonna look at you this way, no one is gonna look at you the same way or accept you.”

But as I began to educate myself about the virus, how it works and what it does, I began to lose the fear of disclosing. Then after I linked up with iChoose2live, I came out in a big way through interviews and the work [I did with that group].

My grandmother kicked me out when I told her I would be doing an open interview about me being positive with The Philadelphia Inquirer, which [was published] on September 13, 2010. [At that time,] I had no job, no money, I was struggling. But a lot of positive things came from my disclosure. People emailed me to thank me for being honest about my HIV status. I was intrigued and blessed that my story could help others. I started speaking to groups at the children’s hospital. Kids looked up to me.

I’ve learned that kids in public schools aren’t being taught what they really need to know. HIV is that disease that’s swept under the rug; no one talks about it. And youth are spreading [the virus] because they’re uneducated, misinformed and not being reached out to enough. I honestly think there should be mandatory classes in all middle schools through college for educating about HIV/ AIDS [and other sexually transmitted infections].

Positive people my age need to be out there.

You can’t have a 48-year-old man talking to kids about this. No one listens. You need someone like me, someone who is living with [HIV]—then it becomes more real. It’s a great feeling to be able to do that. And that’s just me! One person. Imagine if everyone was doing it, if everyone got together.

We may not be able to stop this pandemic, but we can inform, educate and empower, and we can slow down the rates of HIV transmission.

I would like to write a book about my life living with HIV and just my life in general. I know my story and experiences within these past 24 years can help educate, empower and change other people’s lives—people of all ages. My story will heal lives all over and most importantly let everyone know the power of God. He’s the only reason why I’m still alive and healthy.

I’m looking forward to the future, staying healthy and changing people’s lives.

Angelikah Demonikah, 27, Minneapolis, Behaviorally Infected

Open and direct about her diagnosis, Angelikah is moving forward.

While pursuing her college degree and navigating social and romantic relationships, Angelikah is resolute about how she will live her life.

I found out I was positive July 29, 2008. When I contracted HIV, I was drinking and using drugs. I made a stupid mistake with someone I didn’t really know, and it came back to bite me.

I tested for HIV when I was in [therapy and drug] treatment a few months later. Seven days after I got out of treatment the health department came to my door and told me I was positive.

Two years later I found out that the person I contracted it from knew he had it and didn’t bother telling me or using a condom.

Though I am angry about this, I accept personal responsibility.

You never know what someone has, and it is up to you to protect yourself and make smart decisions.

Angelikah After I found out, I relapsed and spent the next Demonikah year getting high to avoid dealing with it. Then says being public can one day I realized that being HIV positive was a reduce stigma. reason to take care of myself, not to self-destruct,

so public—that anyone dating me has to really consider whether they are comfortable with their family and friends criticizing them for dating someone who is positive. Finally, there is a lot more conversation around sex, which is probably a good thing.

I do feel stigmatized, singled out. I believe anyone who is openly positive will be, but the more of us who are out there speaking out the less this will happen. I can honestly say, though, that while I can count my bad experiences on one hand, there is no way I could ever tally up how much love, support and understanding I have received. And ultimately, people have surprised me. I find that people are a lot more open-minded than I originally anticipated.

I feel it is important for people, especially young women and heterosexuals, to start talking about HIV. There is still too much misconception about it being a gay disease or something that only happens in Africa. People need to know HIV does not discriminate. All it takes is one decision. I know that.

so I sobered up. Since then, I have been doing better than ever.

Ever since the day I found out, I have been completely open with everyone—friends and family. The day I told my dad, that was the hardest. I just didn’t want him to worry about me.

But he took it as well as he could, and everyone has been incredibly supportive.

I did have access to therapy—I’ve been diagnosed bipolar for about 13 years so I stay in therapy and take mood stabilizers to keep the symptoms in check. It helped me become active, prompting me to speak out online and on TV. So basically I’ve been not just open but public.

The biggest obstacle of living with HIV, so far, has actually been dating. Though I haven’t really had anyone reject me based on my status, there are extra complications. I am a lot more selective about who I date, for example. I have to feel I can trust someone to understand, so in a sense it weeds out the people who aren’t worthwhile. And while some people accept it and are OK with my status, I know—because I am

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On his own since the age of 13 and still trying to make sense of his diagnosis and when and how to seek treatment, David is slowly carving out his life. While working part-time jobs and making ends meet with the help of government housing programs, he is taking it one day at a time.

I got HIV when I was 19 through unprotected sex with someone I met on the A train.

Crazy, right? I was single and having fun and struck up a conversation. It happens. Except this time, for me, it was different.

Fast forward a few months later. I’m sick, I’ve lost 40 pounds, I’m hospitalized. The doctor took one look at me and tested me. I got a call from the doctor while I was at work. I was positive.

In that moment, that second, I became the hateful stereotype my family always believed. When I had run away [six years earlier] I thought I was going to prove my family wrong, show them my life was going to be OK. And now…I’ve let myself down. I’m ashamed and guilty.

I came out when I was 13. Thirteen. My first time had been at the age of 11, with a classmate. A boy. Two years later, after I came out, my Christian family excommunicated me. I’ve been on my own ever since.

Until I was 17, sex was the way to survive. I jumped around from friends to friends eventually attaching myself to a man 10 years older than me. I hung out with heroin addicts, I had unprotected sex, I engaged in prostitution.

David During that time, I had no support to keep me Goode came out safe—except the LGBT Center. I started volunteering when he and getting tested every six months. [But I was still was 13.

STEVE MORRISON

David Goode, 24, Brooklyn, Behaviorally Infected

having sex,] and the sex wasn’t always so safe. I just depended on someone else to have a condom. And they usually didn’t.

I’m not on treatment, and I haven’t seen a doctor. To think I have full access to treatment, a single gay male, and other people can’t. A mother with children in Zimbabwe can’t. I feel guilty.

Some days I feel like a leper, an untouchable. I feel different.

People are out of touch with people who have HIV because positive people don’t stand up, they have no voice. And the government and prevention programs, they instill fear instead of spreading awareness.

If I had met someone my age who was also positive, it might have changed things a little bit. I might have played it safe, protected myself. It would have been more real to me.

Now I know, this is real. We’re getting it, it’s still around. So we have to protect ourselves and others. Respect yourself and others. Don’t be that person who gave it to you.

Everyone probably knows someone who is HIV positive, and it would help us if [positive people were more open about their status]. That way when senators or someone had to decide on cutting back on funding, they would know someone it would hurt. [If more people were open about their status,] it

way]. I went from [being] popular to having no friends.

In eighth grade, I made the soccer team. I was going to be part of a team. Then someone told my coach I had AIDS. At our first away game, my coach approached me on the bench, in front of other players, and asked, “By the way, I heard that you have AIDS. Is that true?” I said no, because I don’t have AIDS, I am HIV positive and there is a difference.

I was so upset. This was a coach. Someone who should know. I told mom, who confronted my coach at school. She admitted to asking me and went on to say, “The soccer team could use my HIV status to an advantage, and the other team will be afraid, and I can score goals.” I withdrew from the school and finished out my year with homeschooling.

My mother has been so supportive. And my family. I didn’t have to disclose to them; my mom told them before she even told me. But you need support of different kinds. Since the bullying, the coach, the discrimination, I’ve started seeing a counselor and started taking an antidepressant. It’s OK to look for help, and it’s OK to get help.

I realized that I can help other people too. I wanted to take a bad situation and turn it into something good by helping

“Kids in public schools aren’t being taught what they need to know about HIV.” would help with the stigma—it wouldn’t be someone dirty from the street they don’t know; it would be their brother or sister or neighbor.

We can end stigma, and we can end AIDS. We have to stand up at once.

Paige Rawl, 17, Indianapolis, Perinatally Infected

She is a high school student, an athlete, a teen. Having encountered and overcome enormous stigma, Paige has flourished—making a place for herself in a world that hasn’t figured out how to make a place for youth living life with HIV. My name is Paige, and I’ve been positive for 17 years. My mom unknowingly passed it on to me, and she found out her status right before I turned 3. She contracted the disease from my father—we’re not sure how or when he contracted HIV. That’s just the way it goes.

My mom told me I was positive when I was in fifth grade.

But I didn’t get it. I took the pills because that’s what you do when you’re young and your mom gives you pills. And then middle school happened.

In sixth grade I confided in my best friend; I told her I’d been HIV positive since birth. Within two weeks, she had told her sister and other people, and they told others, and eventually the whole school knew. Everyone. People threatened to beat me up; they left a note on my locker saying “No AIDS at [school name].” They gave me a nickname: “PAIDS.” They told each other not to drink after me, as if HIV was contagious [that

others know about HIV and the precautions they should take.

So I became a peer sex educator and a certified HIV/AIDS educator through the American Red Cross.

I also started looking for support groups and even tried to start one. I searched the Internet, I asked questions, and I was referred to Camp Kindle [a free summer camp for kids living with or affected by the virus]. Meeting other kids [like me] has given me people to talk to, people who can relate to what I’m going through.

These days, I am open about my status to everyone. I take the time to speak to my peers, raise awareness and share my story. Funny, after disclosing to my former best friend in sixth grade and it spreading through the school, it just became easier to tell people who didn’t already know. For the most part, there’s a positive response. The fear that I should not have disclosed my status so soon just doesn’t exist anymore.

I know firsthand that there are still big misconceptions out there about how you can and cannot contract HIV. [We need] more education among youth in the U.S., and there should be more support groups. Youth need to see themselves reflected in what’s taught, in the information they are given.

The hardest part about living with HIV is the stigma that goes along with it. But I have hope. Two years ago, I was the freshman class president, on the JV cheerleading squad and on the soccer team. Last year, I was part of the student government and on the varsity squad. I volunteer, I share my story, I travel. I have hope. ■

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CREDIT

FACING THE FUTURE OF HIV CARE As the nation’s health care system reels from the economic meltdown and the uncertainty of upcoming reforms (including those in the Affordable Care Act, scheduled to take full effect in 2014) and possible cuts to Medicaid and Medicare, many people with HIV are wondering about the future health of HIV care in America. But the changing—and fiscally challenged— landscape has produced some new models that point the way to a place of improved care for more people living with HIV.

BY BENJAMIN RYAN

STEVE MORRISON

W

HEN DON BLANCHON TOOK over as executive director in 2006, the W hitman-Walker Clinic in the District of Columbia was in crash mode. Founded in 1978 as a nonprofit LGBT community health center, WhitmanWalker had become, through the 1980s and ’90s, a powerful weapon in the district’s fight against HIV. But by the time Blanchon arrived, the clinic seemed doomed by the grim funding realities chipping away at the U.S. health care industry as a whole and HIV service providers in particular.

Staff spirit was as anemic as the clinic’s cash flow. “People felt defeated or demoralized by the challenges they’d been up against over a number of years,” says Blanchon, whose career path has been driven by his younger brother’s death from AIDS in 1999. “The organization’s morale was really low,” Blanchon says, “and its community reputation was too.”

Crippled by a reliance on ever-dwindling private donations and precarious government grants, the clinic had even missed payroll once in 2005.

Under Don Cut to April 2011: Blanchon takes the podium Blanchon, Whitmanat a glittering gala celebration of the clinic’s Walker is headed in Lazarus-like resucitation. To commemorate the the right milestone, he announces the organization’s direction.

rebranding as Whitman-Walker Health, reflecting the broadened nature of the services the clinic provides.

To achieve this transformation, Blanchon first had to shrink the operation through painful layoffs and program closings—moves that helped the clinic escape budget shortalls approaching $4 million in both 2007 and 2008.

“The real crux of the issue was that the AIDS service organization business model we relied on appeared to be a dying model that would not continue long-term,” Blanchon says.

How did the clinic then flower and expand, producing close to a million dollar operating gain on its nearly $20 million 2010 budget? Blanchon followed the lead of several other major LGBT community health centers around the countr y, embarking on the long process of transitioning WhitmanWalker into what is known as a “federally qualified health center” (FQHC). At press time, the clinic had attained “lookalike” status and was on the cusp of full FQHC designation.

As a look-alike clinic, Whitman-Walker can receive greater Medicaid and Medicare reimbursement rates, as well as access to federal grant money and the authority to purchase medications at a discounted rate. When it becomes a fully designated FQHC, it will have greater access to grant money, in addition to malpractice coverage and federal stimulus money designated specifically for FQHCs. To qualify as an FQHC, Whitman-Walker has had to address the health needs of a wider swath of the population,

poz.com SEPTEMBER 2011 POZ 43

no longer restricting services mostly to clients with HIV. Now the clinic serves the entire LGBT community—and beyond.

This expansion allows Whitman-Walker to draw on more diversified funding sources. In 2005, a whopping 90 percent of the clinic’s budget came from donations and grants. Today that proportion has dropped to a little less than half. Nearly a third of Whitman-Walker’s funds now comes from an expanded inhouse pharmacy. A fifth comes from third party insurance— mostly the enhanced Medicaid reimbursements.

The decision to broaden the patient population, Blanchon says, was actually a return to the clinic’s roots as a leader in the LGBT health movement. Blanchon, who is heterosexual, says that his devotion to championing LGBT rights blossomed after he watched the way his brother and other dying gay friends were treated during the early years of the AIDS crisis.

“I’m really motivated by how well we can take care of people,” he says. “And the fact that every person needs [and deserves] a very affirming place where they can get care.”

Whitman-Walker’s roots lie in 1960s idealism, which produced the U.S. community health clinic movement. The movement gathered steam during the 1970s, paralleling the emergence of the post-Stonewall gay rights movement.

Volunteer-based gay clinics began appearing in urban areas around the country.

Then along came AIDS. Many clinics, such as WhitmanWalker in DC, Callen-Lorde in New York, and Fenway in Boston, sharply narrowed the scope of their services in the 1980s to meet suddenly desperate health care needs.

“For 20 years, in some major metro areas, our LBGT community health centers became the leading HIV providers,” says Robert Greenwald, JD, director of the Harvard Law School’s Health Law and Policy Clinic and a national advocate on HIV-related health policy. “In other parts of the U.S., we saw new HIV clinics emerge and operate literally across the street from more traditional health centers. And they never met in the middle.”

Federal funding streams have also worked to fracture and specialize community health services. A major push came from the 1990 Ryan White CARE Act. As the Providers “payer of last resort,” the program’s original intent and patients at was to fill gaps in care, treatment and services.

WhitmanBut between the high rate of HIV-positive people Walker

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who are uninsured and the restrictive eligibility requirements for coverage—not to mention HIV stigma, which discourages some positive people from using general purpose medical centers—hundreds of thousands of people with HIV have filled Ryan White–funded HIV clinics over the years. In 2010, Ryan White funds provided an estimated $2.3 billion for about a half million lower-income people with HIV. But the CARE Act’s resources, which are discretionary and subject to periodic reauthorization from Congress, have proved notoriously insufficient. At press time, more than 8,500 people were on waiting lists for drug coverage through the AIDS Drug Assistance Program, one of Ryan White’s four funding divisions. And Republicans were pushing for further cuts that would slash the budget by billions, according to The AIDS Institute. Total demand for Ryan White funds has increased more than 30 percent during the past five years, while funding has remained flat—even without threatened cuts.

Seeing that Ryan White funding is an unreliable foundation for long-term financial stability, some community clinics have shown grace under fire and, like Whitman-Walker, have used their budget crises as a catalyst for change.

Some saw the light awhile back. In 1999, Chase-Brexton Health Services Inc. in Baltimore led the way as the first historically LGBT health center to expand its operations to serve more diverse patient populations and become a federally qualified health center. Its director of clinical programs and public policy, David Haltiwanger, PhD, says the organization was inspired in part when its staff noticed that, sitting beside regular HIV patients in the waiting room, there were many (HIV-negative) family members who also needed care.

Legacy Community Health Services Inc. in Houston saw the writing on the wall during the uncertain 2000 reauthorization of Ryan White, at a time when the CARE Act funded three quarters of the clinic’s budget. So it broadened its scope of operations to welcome all uninsured and underinsured community members. It became a look-alike in 2005 and a full FQHC in 2007. It now boasts four separate clinics across Houston and a client base embracing LGBT, HIV-positive, Latino and African-American communities. Offering more pediatric and maternity services has helped diversify Legacy’s funding streams by giving it greater access to reimbursement through Texas’s highly restrictive Medicaid program.

The Harlem United Community AIDS Center in New York City nearly collapsed in 1999. Arguing to file for bankruptcy, half the board of directors walked away. But those who stayed and forged ahead were able to revamp their business model, steadily adding medical services over the years to bring in more Medicaid dollars, and eventually achieving designation as an FQHC for the homeless in 2007. Today, Harlem United offers a vast array of wrap-around support services for more than 13,000 New Yorkers, about 7,000 of whom are HIV positive.

Their ever-growing budget has run operating gains for well over a decade and is now approaching $40 million.

Having made the changes before the depth of today’s economic and health care crises, these clinics were ahead of the curve. Of Whitman-Walker’s experience, Blanchon says, “We’re going, ‘Wow, sometimes it’s important to be lucky.’”

COURTESY OF SCOTT HENRICHSEN

O

ther groups have yet to engage in makeovers.

According to a recent policy paper from the Ryan White Medical Providers Coalition and the HIV Medicine Association, many HIVfocused clinics are still bursting at the seams with patients while facing near-crippling budget shortfalls.

“Part of our problem,” says William McColl, political director for AIDS United in Washington, DC, “is that HIV care is so specialized. We’ve got an entire system that’s been propped up in some ways by this specialty care that Ryan White–funded programs have provided. Providers don’t really make money [with] HIV. It costs a lot, and there’s not a huge reimbursement.

We’re going to have to force that system to change.”

Ready or not, HIV providers of all stripes face a major financial upheaval in the next three years as the country heads into a full-scale launch of health care reform in 2014, when the Patient Protection and Affordable Care Act takes full effect. If the reform goes through as planned, any American whose income is at or below 133 percent of the federal poverty level will become eligible for Medicaid. This, on the surface, is great news for previously ineligible lower-income people with HIV. It’s also good news for HIV providers who have already positioned themselves to reap greater benefits from Medicaid dollars—if, that is, they can handle a possible influx of new patients, as well as current patients who may use services more frequently once they have greater access to insurance coverage.

“The most important thing that could happen for people liv ing w ith HI V/A IDS in our countr y is health care reform [being implemented],” says Rebecca Haag, president and CEO of AIDS Action Committee of Massachusetts.

Here’s the catch: An estimated 70 percent of all people now receiving HIV care from Ryan White funds are at or below the poverty level. So if political battles over the next three years don’t sink the health care legislation, at least that 70 percent of an estimated 530,000 HIV-positive Ryan White beneficiaries will switch over, partially or wholly, to Medicaid. Meanwhile, Ryan White comes up for reauthorization in 2013. While the National HIV/AIDS Strategy has called for the long-term continuation of Ryan White, with diminished future needs for the program, the government may decide not to go along.

This will leave in limbo all the dollars Ryan White provides to social support services such as case management.

In addition, as Ronald Johnson, vice president of policy and advocacy at AIDS United, warns, the Republican-proposed cuts to Medicaid could drastically change the landscape.

HIV policy gurus are gearing up for a fight to protect those still-crucial aspects of the CARE Act. “Ryan White is going away over my dead body,” insists Harvard’s Greenwald. “But Ryan White should be what it was originally intended to be— filling gaps in access to care and essential support services.

“I think,” he continues, “that the federal government is clear in terms of where its investments are going—in Medicaid, in federally qualified health centers and, frankly, in mainstreaming HIV. Our reliance on Ryan White and the idea that we’re going to have a separate and distinct freestanding HIV health care system are not the reality.”

These changes, while financially driven, may provide other benefits, such as helping destigmatize HIV by removing it from its silo and making it a medical concern like any other. In addition, shifting HIV-positive patients to general clinics may free up infectious disease specialists to focus on acute infections while encouraging positive people to care for the whole of their health, not just the challenges presented by HIV. That’s important because as positive people live longer, the scope of their medical concerns expands to include many aspects of health that are not the specialty of HIV doctors.

An alternative, or in some cases, an add-on, to the federally qualified health center business and care model is what’s

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Today, Blanchon says, WhitmanWalker Health is healthy.

STEVE MORRISON

known as a patient-centered medical home.

Groups like Harlem United, Fenway and the HIV program at St. Luke’s–Roosevelt Hospital Center in New York City are in various phases of adopting this all-encompassing approach to care, a designation that may also give U.S. clinics access to greater Medicaid reimbursement.

Gathering a vast array of services under one roof is not a new concept for many HIV providers. The combination of financial pressures and the intrinsic urgency and complexity of HIV care has long pushed them to innovate toward such comprehensive care.

Prov iding care that produces solid results—measurable through the electronic records systems required for both FQHC and medical home designations—also positions these clinics to succeed within the health care reimbursement system of the future. In coming years, Medicaid and Medicare will likely put pressure on medical providers to contain costs and prove they are giving quality care with good health outcomes.

Which is something that community clinics have known about since they began, pinching pennies along the way.

“We’re always just sort of living on the edge,” says Jay Laudato, interim executive director of Callen-Lorde in New York City.

“You have to run very lean to make it work.”

“To Whitman-Walker’s credit,” he says, “I think they devised a plan for stability and followed it.” Diversifying funding streams may even offer some cushion against the blow of federal funding cuts.

Those among the ever-swelling crop of patients at Whitman-Walker—which experienced a 30 percent one-year increase in the population it serves, to 13,000, last year—have seen their health care and social service options broaden as their clinic has found its way to financial solvency.

Whitman-Walker provides everything from primary and specialty health care to dental care, pharmacy, mental health and legal services, plus public benefits assistance, case management and a day program. It has instituted what’s called the Red Carpet Service for new patients, incorporating the patient into care all at once, all under one roof.

“I call Whitman-Walker my one-stop shop,” says Chanelle Smith, a 44-year-old transgender woman in Washington who has been receiving HIV care at the health center since 2007. “Everything is here.” Including, perhaps, the future of HIV care. ■

Do Your Bit

Fight for Ryan White Concerned about the potential loss of Ryan White money to provide crucial support services?

Worried about threatened cuts to Medicaid? David Haltiwanger, PhD, director of clinical programs and public policy at Chase-Brexton Health Services in Baltimore says there is something you can do: “People living with HIV [should] call or write their member of the House of Representatives or their senators and say, ‘I benefit from these services.’ I know I’ve heard advocates here in Baltimore, speak very movingly about how, ‘I don’t think I would be alive today if it weren’t for the Ryan White program and the services I’ve gotten that were funded through it.’”

Find out how to call and write your representative or senator at contactingthecongress.org

The Future of Funding for AIDS Service Organizations (ASOs) Go Beyond Ryan White “If you’re an ASO that has done wonderful things for your clients, but has used Ryan White funds exclusively, then your agency may be on thin ice in an era of change,” warns Chase-Brexton Health Services’ David Haltiwanger.

At risk are the wrap-around social support services that have been the mainstay of ASOs since the beginning of the epidemic.

According to policy experts, organizations that don’t have medical services as a part of their business model are at increasing risk of financial trouble. Some ASOs are aware of this—and planning ahead. For example: AIDS Project Los Angeles (APLA) says it is in a good position to greet the changes of the next

few years and is looking to expand its reach. Under a program called Bridge to Reform, a segment of Californians will receive a waiver over the next year for an early chance to use the expanded Medicaid eligibility rules that are planned to go into effect nationally in 2014. With the likelihood that the 3,000 at-risk HIV-negative clients APLA serves in its prevention programs will soon get access to health coverage, the ASO has applied for federally qualified health center status. As an FQHC, the group hopes to receive federal funds to develop a primary care system to meet its current prevention clients’ overall health care needs, as well as to provide a wider spectrum of care to HIV-positive clients who already receive its services.

David Ernesto Munar, president and CEO of AIDS Foundation of Chicago (AFC), says his organization plans to unroll a series of pilot programs during the next few years that will more closely connect their support services with medical programs. In the process, the group hopes to uncover funding sources such as Medicaid that will recognize the vital and inextricable contribution AFC’s work has made toward successful health outcomes.

Ronald Johnson, vice president of policy and advocacy at the Washington, DC–based AIDS United, says some ASOs may need to explore the option of merging with a local clinic.

Harvard’s Robert Greenwald, JD, suggests that ASOs explore becoming Medicaid providers or a part of private health exchange networks. So long, that is, as these teams work together to make sense of a new reimbursement system (and that Medicaid doesn’t get slashed).

“They’re going to have to figure out how to manage those multiple funding streams,” Greenwald says. “Some of them will survive; some won’t.”

“If the end result is better integration of HIV/AIDS into medical care overall,” says Michael Kaplan, executive director of Cascade AIDS Project in Portland, Oregon, “I’ll be thrilled.”

poz.com SEPTEMBER 2011 POZ 47

HEROES

BY LAUREN TUCK

Kid Wonder

Jordan Mitzel was born in the spring of 1998.

Addicted to crack and diagnosed with fetal alcohol syndrome and HIV, he was abandoned by his birth mother. Luckily for the lone baby boy, Beverly Mitzel and Sonja Austin adopted him when he was 5 days old. Throughout his 13 years, his family has adopted five more children, two dogs, two cats, three birds, a guinea pig and fish.

Despite his (literal) shortcomings—Jordan says he is very little compared with his teammates— the sports superstar has prevailed on and off the athletic fields. May 2011 marked his fifth AIDS Walk Charlotte, in North Carolina and he has raised more than $31,000 for the Regional AIDS Interfaith Network (RAIN), making him one of the walk’s biggest donors. From collecting recyclables for their deposit returns to decorating his neighbors’ yards with plastic pink flamingoes— catchily called “Flock-a-Friend”—for a $25 donation to the cause, he finds new and unique ways to raise money to help others with HIV. What three adjectives best describe you?

Caring, fun, determined (and good at sports).

What is your greatest achievement?

Helping change people’s ideas about HIV. A lot of people tell me I remind them they should do more. They see what I am doing, and they get involved. That’s good, and I am proud of that.

Sometimes people tell me they are proud of what I am doing and then tell me that they have someone in their family who has HIV or AIDS. Then, they usually hug me.

If you could change one thing about living with HIV, what would it be?

Not to have to take medicine every day because sometimes it makes me sick. I know if I don’t take all this medicine I can get really sick and maybe even die.

What person in the HIV/AIDS community do you most admire?

Ryan White. He is my hero. He had it a lot harder than me. He could not even go to school like a regular kid, and people were afraid to be around him. Sometimes people are still scared of people with HIV, and that is why it is important for them to know we are just regular people who want to do regular things but who have to take medicine to keep us healthy. I got to meet Ryan White’s mother, and she said she was proud of me for all of the money I have raised.

48 POZ SEPTEMBER 2011 poz.com

JAMES QUANTZ JR.

If you could be any animal, what would you be?

I would be a white tiger because they are strong, powerful and very rare. They are born different than regular tigers, but that is what makes them beautiful and special.

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