POZ June 2015

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H E A L T H ,

L I F E

&

H I V

Meet the Children Whitney Joiner and Alysia Abbott

Remembering parents lost to AIDS

CONTENTS

EXCLUSIVELY ON

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Mark S. King as grand marshal of the 2013 Atlanta Pride celebration

POZ STORIES

REAL PEOPLE, REAL STORIES

Together, our stories can change the way the world sees HIV/AIDS. They inspire others in the fight and break down the shame, silence and stigma surrounding the disease. Go to poz.com/stories to read stories by others like you and to submit your story.

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POZ OPINION

Advocates, researchers, politicians, thought leaders and folks just like you all have a point of view worth sharing.

Go to poz.com/opinion to read about topics such as living with HIV, improving care and treatment, and increasing prevention efforts and social justice.

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

30 TELLING THEIR STORIES Countless children have lost parents to AIDS. Today, they’re finding community—and much more—in a group called the Recollectors. BY TRENTON STRAUBE 40 SURVIVING LIFE ITSELF An essay by an outspoken activist, author and blogger on his relevance as a long-term survivor in the here and now. BY MARK S. KING 5 FROM THE EDITOR I’m Coming Out

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Your letters and comments

12 POZ Q+A

Kelsey Louie, CEO of Gay Men’s Health Crisis (GMHC), reinvigorates grassroots advocacy to demand an HIV cure.

14 POZ PLANET

Documentarian Jean Carlomusto • looking at HIV’s prime-time players • three cheers for a cure! • an LGBT center’s HIV TLC • a Positive Spin with gay black men • President Reagan’s silence on AIDS • POZ Stories: Nancy Duncan • Positive Pedalers • an HIV law roundup • Hoosiers & HIV

18 VOICES

Kris Hayashi of the Transgender Law Center on the disparities trans people face

21 RESEARCH NOTES

Taking PrEP for other STIs • a promising anti-HIV molecule • HIV goes latent by design • cost sharing of antiretrovirals under Obamacare

22 CARE AND TREATMENT

New bone care guidelines • FDA OKs two new Tybost-boosted PIs • success across hepatitis C genotypes for daclatasvir and Sovaldi • Harvoni works for HIV and HCV coinfection • PrEP can be a protective “bridge” for mixed-status couples

29 SURVEY SAYS

Tell us about your support networks

44 POZ HEROES

Khafre Abif edited Cornbread, Fish and Collard Greens, an inspirational anthology for people with HIV, and he’s working on five more—that is, when the bisexual dad isn’t planning the Cycle for Freedom ride.

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COMMENTARY ON HIV/AIDS

FROM THE EDITOR

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I’m Coming Out

I

HAVE A BUTTERFLY TATTOO. There, I said it. I’ve actually been kind of closeted about my tattoos.

(I currently have two, to be exact, but I reserve the right to get more!)

But there does seem to come a time for everything, even this somewhat silly “coming out” about my tattoos.

As an HIV-positive gay man, I believe that coming out is never-ending. I will hopefully continue to meet new people until my last day. And I will probably come out to them about something—my status, my orientation, my tattoos—every time. I’ve grown to like the process. Not many other moments offer you the chance to educate at the same time you separate the wheat from the chaff.

So it is with coming out that the things you disclose often aren’t as terrible as you feared, yet the unburdening is even more freeing than you imagined. Such was the case for our cover gals, Whitney Joiner and Alysia Abbott.

Each lost her gay dad to AIDS in 1992—and Whitney didn’t know anyone else who had lost a parent to the virus until she met Alysia about 15 years ago.

They stayed in touch, but the years passed by. Then, in 2014, an event co-sponsored by Visual AIDS about the children of parents lost to AIDS spurred Whitney and Alysia to launch the Recollectors, a group dedicated to remembering parents lost to the virus. Go to page 30 to read more about the Recollectors and remembrances of their loved ones.

In recognition of June as LGBT Pride Month, in addition to the Recollectors story, this issue includes other sometimes underrepresented LGBT-related perspectives. An essay by gay activist, author and blogger Mark S. King, for example, reflects on his relevance as a long-term survivor in the here and now. Go to page 40 to read his journey.

Although it’s arguable that Gay Men’s

Health Crisis (GMHC) itself is not underrepresented, it’s undeniable that the concerns of the people GMHC serves often are. Kelsey Louie, the new CEO of GMHC, has lifted those voices in his first year on the job. Arguing for a grassroots push for an HIV cure is a recent example. Go to page 12 for our Q&A with Kelsey.

GMHC co-founder Larry Kramer is the subject of a new documentary by Jean Carlomusto. The film marks the occasion of his 80th birthday with an intimate look at his life.

Go to page 14 to read more about the film, as well as learn more about the role of lesbians like Jean in the history of ACT UP. In addition to lesbians, other often underrepresented members of the LGBT acronym are bisexuals and trans people. Go to page 44 to read Khafre Abif share his story as an HIVpositive African-American bisexual father of two. And on page 18, Kris Hayashi, executive director of the Transgender Law Center, offers insights on inequities faced by trans people.

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com

Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol.

poz.com JUNE 2015 POZ 5

RESEARCH NOTES

BY BENJAMIN RYAN

6TH ANNUAL

POZ 100

Call for Nominations!

Celebrating

Early Deadline: August 7

LONG-TERM SURVIVORS PREVENTION

TREATMENT

CURE

CONCERNS

A new analysis of the global iPrEx study, which proved Truvada’s (tenofovir/ emtricitabine) efficacy as pre-exposure prophylaxis (PrEP), found that while average adherence to the drug was quite poor, American participants tended to adhere relatively well. This suggests that if the study had been conducted only among Americans, who made up 9 percent of its active arm, the average efficacy rate would have been significantly higher than 44 percent.

While the average adherence rate at week 8 of the study was 55 percent, those in Boston and San Francisco adhered at respective rates of 72 percent and 90 percent at that time. Among a cohort followed for 72 weeks, 27 percent had inconsistently detectable Truvada and 67 percent had always had detectable drug among the San Francisco participants. Those figures were generally reversed among participants in the Andes region, who made up 68 percent of active-arm participants.

New laboratory research has shown that what are known as broadly neutralizing antibodies (BNAs) can block HIV from entering or replicating inside of CD4 cells. This suggests that one day HIV-positive people could receive periodic treatment with BNAs instead of taking daily antiretrovirals (ARVs).

Researchers drew virus from the latent reservoirs of 29 HIV-positive people on ARVs who had a fully suppressed viral load. Testing how effectively various BNAs combatted the virus in the lab, they found that several, notably PGT121, VRC01 and VRC03, both blocked the virus’ entry into CD4s and stopped replication in infected cells. Clinical trials are underway to test whether using either individual BNAs or combinations of the antibodies can control HIV without the need for ARVs.

A small primate study has suggested that the radiation element of the leukemia treatment that Timothy Ray Brown (a.k.a. the Berlin Patient) received was not what functionally cured him of HIV. Brown was functionally cured after his 2007 treatment with a transplant of bone marrow taken from a donor with naturally HIV-resistant CD4 cells.

Researchers harvested blood stem cells from three macaque monkeys, then infected them with SIV, HIV’s simian cousin, and treated them with antiretrovirals (ARVs). Next, they ablated the monkeys’ blood and immune cells with radiation, and then transplanted their own SIV-free stem cells back into their bodies. The scientists then stopped ARV treatment.

The virus rapidly returned in two of the monkeys (a third suffered kidney failure and was euthanized)—meaning that the radiation may have greatly shrunk the size of the viral reservoir in blood cells but it did not cure the animals, just as it probably didn’t cure Brown, either.

A new nationally representative survey of American gay and bisexual men paints the image of a population largely unconcerned about HIV, unaware that antiretrovirals (ARVs) can prevent infection, and dismissive of men living with the virus as potential love or sexual interests. The respondents did list HIV/AIDS as the primary health concern facing the community.

However, looking just at men who didn’t identify as HIV-positive, 62 percent said they weren’t concerned about contracting the virus.

Just 30 percent said they’d been tested for HIV in the past year. And only 27 percent said they were comfortable with the idea of being in a long-term sexual relationship with an HIV-positive partner. Out of all the men, just 26 percent knew about Truvada as PrEP. Only 25 percent knew that taking ARVs greatly reduces the chance that someone with HIV will pass on the virus.

Americans Adhered Well to PrEP in iPrEx

Hope for ARV-Free Treatment

What Cured the Berlin Patient?

HIV Not On Young Gays’ Radar

POZ is seeking nominations for the 2015 POZ 100. This year’s list will celebrate individuals making a difference today in the fight against HIV/AIDS who became HIV positive in 1995 or earlier.

Established in 2010, the POZ 100 recognizes individuals and organizations committed to ending the HIV epidemic. This year, although the spotlight will be on HIV-positive long-term survivors, we encourage nominations for people of all ages.

Don’t delay! Submit your nomination for the 2015 POZ 100 today!

6 POZ JUNE 2015 poz.com

poz.com JANUARY/FEBRUARY 2015 POZ 6

CREDIT

Go to POZ.com/nominate to submit a nomination (self-nominations accepted) and to find more info.

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. You can also head to our social media pages at facebook.com/pozmagazine, pozmagazine.tumblr.com, or @pozmagazine on Twitter.

when you disclose. I know for some it is not always possible, but for those brave souls who step up and speak out, it is so empowering.

BUTCH MCKAY

Women aren’t victims. We’re agents of change. Together, we are an unstoppable force. @ANNEDIPRIZIO

EYES ON PREVENTION

LOVE CONQUERS ALL

In the Feature “Two of a Kind” (March 2015), Ademola Bello profiled a transgender couple living in New York City who are transcending HIV to find love and create their own modern family.

Well-written. It renewed my belief that people should not be judged by their sexual orientation but by the strength of their humanity and integrity as human beings.

KAREN

What a powerful and heartbreaking article. We women have to come together to make our voices heard for ALL women. Cisgender women need to support transgender women. As much as the mainstream narratives of feminism—reproductive

rights, equal pay, etc.—are important, these lesser-known issues are of equal merit.

THERUGGEDVAGINA

I thought this was an excellent topic to discuss. Maybe in the future an article can be done on intersex people, too, who are HIV positive. I can think of a few!

DAVID

GIRL POWER

The POZ Q&A “Sisterhood in Action” (March 2015) featured Barb Cardell, the chair of Positive Women’s Network USA, and her thoughts on self-empowerment for all women with HIV/AIDS. Way to go, Barb. I’m so inspired every time I read an article where someone shares their story. You erase the stigma

In the POZ Treatment post “As PrEP Use in San Francisco Rises, Hope for Cutting HIV Rates” (March 6, 2015), we reviewed promising stats on how Truvada as preexposure prophylaxis can work in the real world.

PrEP is a great thing, guys. In five to eight years, generic versions of the drugs should appear, and hopefully we can reduce new infections to the point that HIV dies out. If you know you are at risk and don’t want to use other measures to prevent it, or just want to be super extra safe, please, talk to your doctor.

CALEBGALATEA

My partner did his PhD studying the toxicology of HIV drugs, including the ones found in PrEP. While he is clear that this will limit your chances of getting the disease, understand that these are mitochondrial-toxic drugs that can affect you systemically.

FEEDBACK

PrEP is an important tool, but it’s not the same as a woman taking oral contraception, as I have seen it compared to.

That said, I’m glad we’re working on non-fear-based ways to combat new infections, and I’m glad there are options available.

GRAHMWATERS

CURE SEARCH

In the online article “FDA Approves Early Human Trial of Potential HIV Functional Cure” (March 13, 2015), we went over the details of an early-phase gene therapy that seems to make immune cells resistant to the virus.

First of all, if this works, the procedure is many years away. Second, it will be extremely expensive and certainly not without danger.

Also, we cannot be sure that the effect will last. Note the words “functional cure.”

PEER AAGAARD

Any way to know if participants are needed for the clinical trial?

LARRY CRESS

Now more than ever, we must believe. Years away?

So what! Expensive? So what! Even if my children’s children get it, that’s a big win! Believe, people. The universe will hear us.

RULIS LOPEZ

POZ ON LOCATION

Here at POZ magazine, we try to get involved in the HIV/AIDS community as much as possible. Check out some social media highlights from our latest adventures!

poz.com JUNE 2015 POZ 7

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

From left: Kelsey Louie and Larry Kramer at the 2015 GMHC Spring Gala; Louie at the opening of a new HIV-specialized Duane Reade pharmacy at a GMHC HIV testing site; crowds at AIDS Walk 2014

A new CEO urges Gay Men’s Health Crisis to increase grassroots activism and fight for an HIV cure.

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ELSEY LOUIE BECAME THE CHIEF EXECUTIVE OFFICER OF GMHC, which is located in New York City, in June 2014. Previously, he was the chief operating officer of Harlem United, an HIV/AIDS community health center. He joined Harlem United in 2007 and worked his way up the ranks. Before that, he was the coordinator of counseling and education at GMHC, so his hiring as CEO was a kind of homecoming.

A native New Yorker, Louie holds a master’s degree in social work from New York University and a master’s degree in business administration from Columbia University. His education and experience have helped him hit the ground running (pun intended: Louie is an avid runner) as CEO of GMHC. Louie shares his thoughts on what’s been challenging and rewarding in his first year on the job, on plans for a new GMHC headquarters, on what keeps him motivated to stay in AIDS advocacy, and on reinvigorating HIV cure activism.

During the 2015 GMHC Spring Gala, you said: “I am troubled by how little activism there is challenging the systems to drive innovation. Our collective aspiration should be nothing short of a cure.” Your words were praised by GMHC co-founder Larry Kramer during his acceptance speech of the inaugural Larry Kramer Activism Award (photo above). He had been estranged from GMHC, but he accepted the award, in part, because of your outreach. How did this cure story begin?

First, we wanted to bring Larry Kramer back into the fold. What better way to do it than at our biggest event, minus AIDS Walk, which is our gala. We thought the best way was to create something to honor him not just once, but in an ongoing fashion.

So we created the Larry Kramer Activism Award. We asked him, and he accepted.

12 POZ JUNE 2015 poz.com

From there, he and I engaged in dialogue around my goals and my vision.

He pressed me on activism. We also had dialogue on the cure. My speech was developed through my emails to him. He and I were on the same page from the very beginning, so at the gala I made it clear to everyone that GMHC must demand a cure and a vaccine as a critical part of our work to end AIDS. Larry Kramer has always been right: It’s been over 34 years, and we still don’t have a cure. Science tells us that a cure is increasingly within our reach. Unfortunately, I don’t see enough elected officials pushing to make it a reality. There’s no elected official whose only goal is to have, say, better chemotherapy for cancer patients. It’s unacceptable for better treatment to be the only goal for people living with HIV/AIDS. GMHC is here to both support and antagonize the leaders and elected officials responsible for achieving what I would say is our collective goal of finding a cure. We want to be vocal supporters of Anthony Fauci, MD, and his efforts

ALL IMAGES: COURTESY OF GMHC

HIGH ASPIRATIONS

so far, but we also want to push him to do even more to find a cure. There’s been so much progress and so many people deser ve thanks, but GMHC can’t be complacent.

Larry Kramer taught us from the very beginning that silence equals death, and so our friends need to understand our job is to simultaneously both support and push them.

This being the third decade of HIV and this year being the 30th anniversary of our AIDS Walk, these are all reminders that now is the time to push for a cure because we are that much closer to the finish line of the epidemic with tools like pre-exposure prophylaxis (PrEP) in addition to condoms, as well as promising new research.

each year. These savings will fill funding gaps and support the expansion or addition of new programs.

GMHC’s lease runs through 2018. As a result, we’ve also begun the process of analyzing our long-term real estate needs. We’re looking at all options to see what’s best for our clients. This is an inclusive process where we’re actively engaging staff and clients at all stages of the decision-making.

As for our satellite HIV testing location in the Chelsea neighborhood of Manhattan, we’re still not sure. There are some advantages to having it as a satellite. It depends on the location of our new headquarters. We want to keep a presence in that area. Data shows that there’s a high prevalence of HIV there.

In addition, that testing center is very

started out working with people with addiction. Since then, I’ve worked in different fields—mental health, child welfare, LGBT issues and homelessness— and HIV/AIDS has permeated my entire work life. Professionally, I grew up on the program side, but I learned quickly that quality programming drives good advocacy and vice versa.

HIV/AIDS has also impacted my personal life. I’ve watched friends and loved ones suffer and/or live in fear, and as a gay man living in New York City, I wanted to make a difference.

I don’t want to keep seeing people be so sick that they can’t leave their house, and I don’t want to see another generation of young people subjected to the stigma, the discrimination and the social and legal inequality that puts them at risk

After a year on the job, what’s been most challenging and most rewarding?

It’s been a humbling experience to take the helm of the most storied HIV/AIDS service organization in the world. The most rewarding part without question is working with the clients and staff.

I’m fortunate to have a great team of employees with heartfelt dedication to their work. GMHC is really a home for our clients. They are our family, and incorporating their feedback into my transition plan has been key for me.

Another special moment, obviously both personally and professionally, was welcoming Larry Kramer back home at our spring gala. It was long overdue.

Facing complacency about fighting HIV is the most challenging. People are satisfied with past accomplishments, but not enough people are demanding a cure.

GMHC wants to reawaken the fighting spirit that led us to effective treatment.

Tell us about your plans for new headquarters, programs and services.

One of the first things I did in June 2014 was ask the senior team to conduct a comprehensive review of every dollar we spend, so I could make sure we were maximizing our resources.

This finally allowed us to tackle our real estate issue directly, and we’ll be combining our two floors into one without impacting a single program. As a result, we will be saving 25 percent on our rent

Kelsey Louie

“Our friends need to understand our job is to simultaneously both support and push them.”

close physically to Mount Sinai clinic, which is how we’re able to achieve our high rates of viral suppression. Once they test positive, we literally walk people over to the clinic.

We’ll also soon be expanding our existing mental health services to include a licensed mental health clinic and a licensed substance abuse clinic.

This not only expands the continuum of services that we can offer our clients, but also helps us better serve people who are HIV negative and at high risk.

Concurrently, it supports our sustainability plan because it enables us to bill health insurance plans, as well as Medicaid and Medicare.

How did you get involved in HIV/AIDS advocacy, and what keeps you motivated to continue?

I became a social worker in 2001 and

for HIV. I believe we can end this epidemic and find a cure and a vaccine, and now it’s time to finally deliver the knockout punch.

Many advocates say there’s a breath of fresh air at GMHC. To what do you attribute their enthusiasm?

I have decided to bring a level of rigor to the work that we do in combination with a focus on serving our clients. We want to make sure we can translate the work that we do into measurable outcomes.

For example, it’s great that we say that we serve more than 90,000 meals each year, but I also want to talk about what happens as a result.

I’ve made it clear to the staff, the clients and hopefully to everyone else who cares that at GMHC we’re meeting the needs of our clients and the community we serve. ■

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POZ PLANET

BY TRENTON STRAUBE

BEHIND THE LENS

Jean Carlomusto on ACT UP lesbians, DIVA and her Larry Kramer documentary

Kramer has done so much, from cofounding ACT UP to writing The Normal Heart. Does your film focus on a specific aspect of his life? It’s an intimate look at his entire life, from his childhood to the present. Through much of 2014 he was really sick, so I did a lot of shooting in the hospital. Everybody, even the head of the [National Institutes of Health], has a certain degree of fear of Larry Kramer, but this makes you see his fragility, vulnerability and mortality. It’s a warts-and-all documentary. I wasn’t going to make Larry into a saint.

Did you personally know him from your early AIDS activist days? I wanted to interview Larry for the cable show, but he was persona non grata—he had called the president of GMHC a murderer in print. When I heard he was part of a group calling for a demonstration down on Wall Street [in 1987], I went with my camera and documented that first action, and after that I stayed very involved with ACT UP until the early ’90s. There was a whole movement of video artists. We were an

affinity group of ACT UP, called DIVA for Damned Interfering Video Activists. Our job, as we saw it, was to document actions so we could get the word out and, also, in case anyone got beat up.

Why is this film important for POZ readers? It has to do with a man who was at the forefront of Gay Men’s Health Crisis and ACT UP. The activist group ACT UP not only pushed a successful strategy that led to treatment for HIV but also demonstrated or against the [Centers for Disease Control and Prevention] to change the definition of AIDS so that women and poor people could get services.

Why did you get involved in AIDS activism? My roommate was gay, and I saw how [the virus] was impacting the gay y men I knew. Plus, my lover at the time was Jean Carlomusto’s film is an intimate diagnosed with look at Larry Hodgkin’s lymphoma. Kramer’s entire life.

My experience with her going through a serious health challenge let me see how homophobia was pervasive. I just knew AIDS was going to be horrible, and I wanted to get involved.

The role of lesbians in ACT T UP might surprise people.

I’m determined that people acknowledge ackno that lesbians were there and an we did fabulous things, including changing the definition of AIDS. I cover some of this in my previous documentary Sex in an Epidemic.

As you made the new film, did anything surprise you about Larry Kramer? Yes. That he’s a very shy and very sweet man.

Just don’t piss him off!

LOOKING AT HIV’S PRIME-TIME PLAYERS Guess how many recurring characters on all of television are HIV positive. Earlier this year, that number was one. His name is Eddie (played by Daniel Franzese of Mean Girls fame), and he appeared in the second season debut of HBO’s Looking.

But then came the season finale of How to Get Away With Murder, in which studly party-boy Connor (Jack Falahee) and his do-the-right-thing boyfriend Oliver (Conrad Ricamora) get tested for the virus as their relationship grows more intimate, only to find out that—spoiler alert!—it’s the conservative Oliver who tests positive.

When HTGAWM returns, it better spend some time showing

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From left: Oliver gets an HIV test on How to Get Away With Murder, and on Looking, Eddie, who has HIV, warms up to Agustin, who is not living with the virus.

us how these two guys deal with the situation.

After all, HBO has canceled Looking, so for now Oliver is all we’ve got to watch.

To counter this dearth of HIV representation in entertainment, LGBT watchdog group GLAAD along with the Elizabeth Taylor AIDS Foundation and AIDS United have been urging Hollywood to be more inclusive. As part of that effort, they released a journalism style guide titled HIV & AIDS in the News: A Guide for Reporting in a New Era of Prevention and Treatment.

(CARLOMUSTO) GETTY IMAGES/LARRY BUSACCA; (HTGAWM) ABC/MITCHELL HAASETH: (LOOKING) HBO/JOHN P. JOHNSON

Filmmaker Jean Carlomusto has been acting up and fighting AIDS since back in 1987, when she started a GMHC cable TV series called Living With AIDS. Here, she tells POZ about her newest work, the documentary Larry Kramer in Love & Anger. It debuts on HBO in late June in honor of Kramer’s 80th birthday.

Hot Dates / June 5: National HIV/AIDS Long-Term Survivors Day / June 8:

E! THREE CHEERS FOR A CURE! An Institute for HIV Cure Research We love to hear the word cure, and few organizations talk about it with as much zeal as amfAR, The Foundation for AIDS Research. The goal of its “Countdown to a Cure for AIDS” initiative is to develop the scientific basis of a cure by 2020. Lucky for us, amfAR puts its money where its mouth is. Specifically, amfAR will invest $80 million in grants toward cure-based research while another $20 million grant will establish the amfAR Institute for HIV Cure Research, which will be located at a yet-to-be-announced academic research facility. If you build it, a cure will come.

(MEGAPHONE AND POM POMS) THINKSTOCK; (LGBT CENTER) COURTESY OF THE CENTER/TRAVIS MARK; (ANTHONY) COURTESY OF POSITIVE SPIN

Human Trials for a Functional Cure In other cure news, the Food and Drug Administration has given the OK for human trials of a gene therapy that might lead to a functional cure (this is when

HIV is not eradicated from the body, but people are able to control the virus without daily meds). The new investigational therapy involves genetically altering an HIV-positive person’s stem cells so they’ll be resistant to the virus. If this Phase I trial proves the therapy is safe, then it must pass two additional phases of trials.

A Cure Rally Cry From an AIDS Icon When Larry Kramer—who co-founded GMHC and ACT UP and wrote The Normal Heart—accepted the first Larry Kramer Activism Award from GMHC, he gave what folks dubbed “The Cure Speech.”

“I no longer hear the word ‘cure’ from the remnants of ACT UP…or from anyone in our health care establishment,” Kramer said. “Thus what an irony to be asked back into the arms of GMHC, just when a new executive director, Kelsey Louie, who

feels and says much the same e as I did and do, has taken over.

“Kelsey said the words that won over my acceptance: ‘We must aspire to a cure once and for all. Let’s demand a cure and a society that values people with HIV enough to pay for it. Only if we aspire to more can we demand more. Only if we demand more will we get more.’

“My first child sounds like a chip off the old block. I salute him and all of you for being here to join me in supporting Kelsey and his and our new GMHC. The power to change history is still within our grasp. We cannot wait another 34 years.

This evil still being waged against us must cease. The battle cry now must be one word: CURE. CURE. CURE.” For more on GMHC, turn to page 12 for our POZ Q&A with Louie.

Guy Anthony

ACT UP started in this room, part of New York’s remodeled LGBT Community Center.

AN LGBT CENTER’S HIV TLC HIV services have always been a cornerstone of Manhattan’s LGBT Community Center. In fact, a requirement to provide them was included in the deed to buy the building back in 1983.

Much has changed since then: HIV treatment, pre-exposure prophylaxis, same-sex marriage equality. Plus, the center recently completed a $9.2 million renovation to better meet the needs of its 6,000 weekly visitors.

What hasn’t changed is the center’s focus on HIV. “It’s infused into so much of what we do,” says the center’s executive director, Glennda Testone.

Support groups there cater to both the newly diagnosed and long-term survivors. Youth programs teach how to talk about sexual health. Family programs cover everything from pre-conception medical issues to parenting while HIV

positive. And gender identity programs both support and educate transgender women, a group that’s at high risk of HIV. The center runs the only LGBT-specific state-certified substance abuse treatment program, and upward of 60 percent of participants are HIV positive. “Whether substance abuse is the root of seroconverting or it’s a coping mechanism,” says Testone, “our program, since it’s for and by the LGBT community, can address these issues in ways that mainstream programs cannot.”

And of course, the center also provides HIV testing and much-needed meeting spaces for the community. ACT UP was birthed at the center, and it still meets there each week. On last year’s World AIDS Day, the center held its first movie screening in the renovated auditorium.

And what played? The Normal Heart.

Caribbean American HIV/AIDS Awareness Day / June 27: National HIV Testing Day

A POSITIVE SPIN “Everyone’s story of living with HIV is unique.” That tagline appears before each video on “Positive Spin,” the new HIV educational project from AIDS.gov. Its goal is to raise awareness about the five stages of the HIV care continuum, from knowing your status to suppressing the virus.

Because of HIV’s disproportionate impact on African-American men who have sex with men (MSM), the project includes the personal stories of five HIV-positive gay black men.

One of them you’ll know as POZ blogger Guy Anthony. Visit the site and follow #mypositivespin for compelling—and inspiring—stories.

poz.com JUNE 2015 POZ 15

POZ PLANET

BY TRENTON STRAUBE

SOUNDS OF SILENCE Nancy Reagan Turned Down Rock Hudson’s Plea for Help Nine Weeks Before He Died. You probably remember this recent BuzzFeed news item. Newly released documents revealed that a dying Hudson had asked the Reagan White House to help him see a doctor in France. He was refused.

“These documents are the tip of the iceberg,” Charles Francis, president of the Mattachine Society of Washington, DC, tells POZ. “There are hundreds and hundreds of boxes of material from A vintage button and a newly Reagan staff that are still sealed, unprocessed White and locked away.” If the group’s name sounds uncovered House memo familiar, that’s because it has been around a while. Co-founded in 1961 by gay rights pioneer Frank Kameny, it was relaunched in 2011 by Francis and repurposed as “archives activism”—with the goal of researching and restoring deleted LGBT political history.

One area they’re interested in is Reagan’s nearly sevenyear delay in addressing AIDS. He became president in 1981, the same year that AIDS was first widely reported, but he didn’t mention the disease in a public speech until 1987.

“A key historical question,” Francis says, “is ‘How did that happen?’ Many have conjectured that it was Reagan himself [who refused], but another line of inquiry, which interests me, is the role of staff.”

In the ’80s, explains Francis, the power and scope of congressional and presidential staff exploded, and they acted as gatekeepers. For Reagan, this included people like Gary Bauer and Carl Anderson. The theory is that highly ideological staff could have surrounded the president and kept out any dissent on AIDS for several years.

To see if this is the case, the Mattachine Society has been filing Freedom of Information Act (FOIA) requests to access files in the Reagan Library. That’s how they uncovered Hudson’s plea for his life, Francis says, noting it was “buried in a box of materials about hospital assistance—it had nothing to do with AIDS.” They also found a Bauer memo to Reagan recommending that no homosexuals serve on the AIDS commission.

Despite roadblocks to accessing presidential libraries— Francis was told a FOIA request is expected to be processed in four years!—the Mattachine Society continues its detective work. For example, by following leads from its Reagan research, the archive sleuths are asking the Centers for Disease Control and Prevention for all memos and notes surrounding a May 1987 meeting with CDC director James Mason, Reagan and Bauer.

Hmmm. We can’t wait to learn what they dig up.

POZ Stories: Nancy Duncan Nancy Duncan contracted the virus in 1985, from a boyfriend she knew had injected drugs in the past. But when the first HIV test came out that same year, she didn’t take it, because: “No meds, no cure—HIV was very much a death sentence.”

In 1990 she began to get fevers, shortness of breath and fatigue—the beginning of Pneumocystis pneumonia (PCP). When she asked a family doctor to test her for HIV, he thought she was crazy and refused. Soon she was hospitalized and tested. The general practitioner told her the results were “not good” and directed her to the local county hospital. “That was the extent of my inadequate HIV counseling,” she recalls.

16 POZ JUNE 2015 poz.com

Luckily her mother offered support, which Duncan needed to help care for her 10-year-old son. Eventually, though, she became so ill she had to stop working as a letter carrier and was forced to tell her son the truth. “He said, ‘Please don’t tell my school,’” Duncan recalls. “He started doing badly in school and gaining weight.

I felt so bad for him and my mom.”

Life got much worse in 1996 when she was diagnosed with lymphoma cancer.

Although she couldn’t even walk, she was determined to see her son’s 18th birthday.

She underwent chemo, which killed the cancer, and then she started an HIV treatment new to the scene: combination therapy. It worked. Her CD4 count improved, and so did her health.

Today, Duncan, 57, is a peer educator at Planned Parenthood of Nassau County in New York, and she has a supportive HIV-negative partner. Her mission is to stop HIV infections by telling others her POZ Story. What’s more, her son is now 36 and proud of his fearless mom.

Visit poz.com/stories to read more.

(MATTACHINE MATERIALS) COURTESY OF THE MATTACHINE SOCIETY; (TYPEWRITER) ISTOCKPHOTO.COM/CHICTYPE; (DUNCAN) COURTESY OF NANCY DUNCAN

Why didn’t Reagan address AIDS in a public speech until 1987?

87?

HIV LAW ROUNDUP UP JERSEY BOYS

(PEDALERS) COURTESY OF POSITIVE PEDALERS; (GAVEL, BOOK AND STATES ) THINKSTOCK

Positive Pedalers cycle toward a 20-year milestone.

Back in 1995, while cycling in the second California AIDS Ride—a weeklong fundraising tour from San Francisco to Los Angeles—the late Jonathan Pon realized the need to recognize participants who were living with HIV. By the next year’s ride, Positive Pedalers was launched.

Twenty years later, the group is still pedaling, and it now boasts 13 chapters across the United States, with three in the San Francisco Bay Area alone. At first, all members of Positive Pedalers were living with the virus. That’s no longer a requirement today, though of the group’s nearly 1,400 participants, all but about 200 are HIV positive.

Members take part in any number of bike rides across the country and sometimes the globe, most notably those that raise funds for HIV/AIDS causes, such as the AIDS LifeCycle (which basically replaced the California AIDS Ride), the Braking AIDS Ride in New York and the SMART Ride in Miami. In addition, Positive Pedalers produces two rides each year: the Jonathan Pon Memorial ride and the Paul Hulse Century ride.

Individual chapters of the group also organize training rides and fun rides, plus non-cycling events. And members often step up as guest speakers at local community events to raise awareness and break down stigma.

In fact, the group’s stated mission is to “eliminate stigma through our positive public example.” But this can be tough to accomplish during one of the tours. The AIDS/LifeCyle, for example, draws over 3,000 people, of whom maybe 300 are Positive Pedalers. How to stand out?

“Our jerseys are an important part of our identity,” says Greg Mahusay, a Positive Pedalers board member. “Some members also attach a bright orange PosPeds flag on their bike. It’s always great to see a member cycling with the flags and our jersey. It’s a reminder that HIV is still here and that people living with HIV are raising funds, raising awareness and eliminating the stigma of HIV.” Each year, Positive Pedalers holds ds a contest to design its T-shirts and cycling jerseys. For 2015, which marks the group’s 20th anniversary, Carlos Urrutia designed what board member Greg Mahusay calls an “explosion of sentiments.” The words represent the many feelings that “Carlos os experienced as he turned to Positive tive Pedalers for guidance during a time me that required compassion, patience nce and support in his own life.”

• First, good news from Rhode Island: When law-makers in that state tried to pass a bill to criminalize e the behaviors of people with HIV, advocates from the Positive Women’s Network (PWN-USA) -USA) organized public testimony against gainst the bill—and helped defeat it.

• A military high court reversed the HIV assault conviction of Kansas airman David Gutierrez for exposing multiple partners to HIV at swingers parties. Noting that prosecutors failed to prove that Gutierrez’s actions were likely to transmit the virus, the ruling overturns 25 years of precedent and effectively ends similar prosecutions in the military.

• The Positive Justice Project (PJP) released seven principles for modernizing HIV criminalization laws. They’re found in a one-pager you can download called “Guiding Principles for Eliminating Disease-Specific Criminal Laws.”

• In San Diego, Thomas Guerra pleaded no contest to not telling his partner that he had HIV. The case, in which his partner did contract the virus, made national headlines, including the POZ feature “Burden of Proof: Is Criminalizing HIV Ever a Good Idea?”

Guerra faces a possible six months in jail and a $1,000 fine.

• Finally, all eyes turn to Alabama, Texas and Missouri, where lawmakers have been considering bills to criminalize HIV. Let’s hope our advocates will enjoy a Rhode Island repeat.

HOOSIERS & HIV

Why needle exchanges are needed in Indiana and Wisconsin More than 100 residents have contracted HIV in southeastern Indiana since December, most of them through sharing needles while injecting a prescription painkiller called Opana.

Although Hoosiers don’t need a prescription to buy needles, doing so requires registration. To promote clean needle usage, Governor Mike Pence OKed a short-term needle exchange in hard-hit Scott County. But activist and local Indiana University professor Carrie Elizabeth Foote tells Healthline that such measures will fail because state laws are linked to nondisclosure.

“It’s only after people know their status that one could be potentially criminalized,” she says, “so folks who do not know their status are not at risk.” Meanwhile, the state health department launched a “You Are Not Alone” campaign to raise awareness of HIV testing, safe sex, needle disposal and drug abuse. Perhaps Indiana should also restore funding for Planned Parenthood.

According to the Huffington Post, Scott County has been without an HIV testing site since its Planned Parenthood facility, which didn’t provide abortions, was shuttered two years ago.

In related news, a spike in heroin use has spurred the AIDS Resource Center of Wisconsin to promote its needle exchange program. In 2010, the center exchanged 1 million needles; last year, that number tripled to 3 million through 15 locations.

poz.com JUNE 2015 POZ 17

VOICES

BLOGS AND OPINIONS FROM POZ.COM

NOT ENOUGH

T

he transgender movement is more visible now than ever.

Still, the heightened recognition has not translated into an increase in acceptance or a reduction in violence. Two new reports highlight the discrimination and inequities.

“Paying an Unfair Price: The Financial Penalty for Being Transgender in America” details the economic insecurities that leave many trans people in unemployment and poverty.

Trans people in the United States face financial penalties simply because they are transgender. They are economically vulnerable because of two primary failures of law: Pervasive discrimination and a lack of legal protections mean that trans people struggle to find work and safe housing, make less on the job and have higher out-of-pocket medical costs than their non-trans peers.

Failure to adequately protect trans students means that trans people and their families often face hostile, unsafe or unwelcoming school environments.

Harassment, bullying and violence make it difficult, if not impossible, for trans students to obtain the skills and education they need to succeed.

“Understanding Issues Facing Transgender Americans” provides an overview of issues facing trans people in the United States, including: Violence: According to the 2013 hate

18 POZ JUNE 2015 poz.com

violence report from the National Coalition of Anti-Violence Programs, trans people were much more likely to experience threats, intimidation, harassment, discrimination and sexual violence. The report found that trans women and trans people of color are much more vulnerable to violence. In 2013, more than half of LGBT homicide victims were trans women of color.

Suicide Risk: Forty-one percent of respondents to the National Transgender Discrimination Survey reported having attempted suicide. Those who were bullied, harassed, assaulted or expelled because they were trans or gender nonconforming in school reported elevated levels of suicide attempts (51 percent).

Homelessness and Discrimination in Housing: One in five trans people have experienced homelessness because of discrimination or family rejection. They also face discrimination from agencies that should be helping them, with nearly one in three (29 percent) reporting being turned away from a shelter. One in five trans people (19 percent) in the United States have been refused a home or apartment, and more than one in 10 (11 percent) have been evicted because of their gender identity.

Health: Discriminatory health care exclusions and unequal access to health care deny trans people coverage for

medically necessary care, including hormone therapy, counseling and other transition-related care. Even when trans people have full health insurance coverage, however, they often face discrimination by health care providers.

HIV/AIDS: Trans people, especially trans women of color, are at high risk for HIV. One in four black trans people in the United States have HIV/AIDS. Discrimination, stigma, social isolation and bias among health and social service providers, and a lack of targeted prevention efforts, have all contributed.

Discrimination in Public: In a 2014 study in Massachusetts, 65 percent of trans people reported discrimination in public accommodation in the past 12 months. Public bathrooms were places of frequent, sometimes serious harassment and abuse. Only 17 states and the District of Columbia prohibit such discrimination over gender identity, covering 36 percent of Americans.

Identity Documents: Official documents, like driver’s licenses, birth certificates, Social Security accounts and passports, that do not match a trans person’s gender presentation can obstruct employment and travel, as well as expose them to harassment, violence, refusal of service and job loss.

As we keep advancing, we must continue to enact more needed protections and societal changes. ■

TORBAKHOPPER

This edited excerpt of an opinion piece titled “When Visibility Is Not Enough,” by Kris Hayashi, executive director of the Transgender Law Center, explores the social, economic and health inequities trans people continue to face.

RESEARCH NOTES

BY BENJAMIN RYAN

ALL IMAGES: THINKSTOCK

PREVENTION

TREATMENT

CURE

CONCERNS

Taking PrEP for Other STIs

A Promising Anti-HIV Molecule

HIV Goes Latent

by Design

Cost Sharing of ARVs Under Obamacare

Taking a daily dose of the antibiotic doxycycline may be an effective form of pre-exposure prophylaxis (PrEP) against various bacterial sexually transmitted infections (STIs), including gonorrhea, chlamydia and syphilis.

Researchers recruited 30 HIV-positive men who have sex with men (MSM) who’d contracted syphilis at least twice since being diagnosed with HIV. The men were randomly assigned to either take doxycycline—the same drug you may have taken for teenage acne—each day for 36 weeks, or to receive financial incentives for keeping STI-free for that long. Compared with those in the financial incentive group, the study participants who took doxycycline were 73 percent less likely to contract any of the three STIs before reaching the 12-week mark after completing the antibiotics.

However, since the study was so small, the researchers could not be very confident about the 73 percent figure.

They concluded that their findings justify a larger study of STI PrEP.

Scientists have created a powerful molecule that blocks SIV (HIV’s simian cousin) from infecting monkeys’ immune cells and that may work as a long-acting treatment and a vaccine for HIV in humans.

Before infecting a cell, HIV and SIV first make contact by latching onto the CD4 receptor on the cell’s surface, and then to the adjacent CCR5 receptor.

The researchers took an antibody-like molecule that attaches to the CD4 receptor and connected it with a protein fragment that binds tightly to CCR5. The idea was to block the virus’s attempt to connect to immune cells. Next, they created genetic instructions for primate cells to manufacture this structure and inserted the coding into a harmless virus that could integrate it into those cells.

Four monkeys received the treatment, and four did not.

After multiple SIV exposures, none of the treated monkeys contracted the virus; all the control animals did.

Attempts to cure HIV are frustrated by the fact that the virus enters a latent, non-replicating state in certain immune cells, becoming invisible to anti-HIV meds. New research contradicts the belief that viral latency is an evolutionary accident, unessential to the HIV’s survival. Using computer modeling and other laboratory research, scientists projected that natural selection has favored strains of HIV that enter latency. HIV typically first comes into contact with mucosal tissue, which has a relatively low level of immune cells. If the virus infected and killed all of the adjacent cells, it would be less able to make its way into the body and establish a chronic infection. But if some infected cells go latent, they can get around this problem. The scientists’ research showed that HIV also has the ability to stop or start replication on its own; this shift is not caused by the infected cell.

Research has buoyed recent legal complaints that certain Obamacare marketplace health plans discriminate against people with HIV by placing antiretrovirals (ARVs) in the highest tier for cost sharing.

Looking at cost sharing for nucleoside reverse transcriptase inhibitors (NRTIs) in 48 plans from 12 states in the federal marketplace system, researchers found that a quarter of the plans used such “adverse tiering” for NRTIs. The HIV-positive members of those plans paid an average of triple the amount for ARVs as those using the other plans. The premiums in the adversetiered plans did tend to be lower than the other plans.

However, the cost sharing for HIV medications in the adverse-tiered plans meant that an HIV-positive member would still pay an average of $3,000 more per year than with the nondiscriminatory plans. Plans from half the states under examination have been included in a complaint about adverse tiering to the U.S. Department of Health and Human Services.

poz.com JUNE 2015 POZ 21

CARE AND TREATMENT

BY BENJAMIN RYAN

FDA OKs Two New Tybost– Boosted PIs

NEW BONE CARE GUIDELINES

An international panel of medical experts has released new guidelines on managing declining bone density among people with HIV. “The guidelines will hopefully further raise awareness of the possibility of osteoporosis and fragility fracture in HIV-infected patients, which is going to be an increasingly important problem as the HIV population ages,” says lead author Todd T. Brown, MD, PhD, an associate professor of medicine and epidemiology at Johns Hopkins University.

The guidelines recommend that those at high risk of fractures resulting from fragile bones receive a DEXA screening to measure bone density. This includes men 50 and older, post-menopausal women, people who have already suffered such fractures, those at greater risk for falling, and those who have been taking glucocorticoids (a class of steroid) for at least three months.

Men in their 40s and pre-menopausal women 40 and older can use the FRAX scoring system, which measures fracture risk based on lifestyle and medical history. If the results suggest a more than 10 percent risk of a fracture during the next decade, a DEXA scan is recommended.

For those with osteoporosis or low bone mineral density, clinicians should discuss prescribing antiretroviral (ARV) regimens without Viread (tenofovir) and protease inhibitors boosted by Norvir (ritonavir) or Tybost (cobicistat).

The guidelines also address osteoporosis treatments and provide recommendations about consuming proper amounts of calcium, supplementing vitamin D, and adopting other bone-health-promoting lifestyle changes such as weight training, quitting smoking and cutting back on drinking.

22 POZ JUNE 2015 poz.com

The U.S. Food and Drug Administration (FDA) approved two new combination tablets that each include an existing protease inhibitor that is boosted by Tybost (cobicistat).

The two new drugs, Prezcobix (darunavir/cobicistat) and Evotaz (atazanavir/cobicistat), are to be used in combination with other antiretrovirals (ARVs) to treat HIV. As single drugs, darunavir is marketed as Prezista while atazanavir’s brand name is Reyataz.

“The approval of Prezcobix and Evotaz makes taking protease inhibitor–based regimens easier for patients,” says Joel Gallant, MD, MPH, medical director of specialty services at Southwest CARE Center in Santa Fe, New Mexico.

Fewer pills may also mean lower co-pay costs, he adds.

Like Norvir (ritonavir), Tybost operates by raising the drug levels of other ARVs. Tybost is already a component of the single-pill regimen Stribild (elvitegravir/cobicistat/ tenofovir/emtricitabine), which was approved in 2012.

Research on Evotaz found that using Tybost as a booster led to essentially the same rates of viral suppression as an equivalent regimen that was boosted with Norvir instead.

Prezcobix’s success rate is based on research showing the efficacy of Norvir–boosted Prezista, as well as a study g that boosting g showing ezista with Prezista bost instead Tybost (in other words, king Prezcobix) taking ds to similar leads els of levels ezista Prezista he in the dy. body.

Updates from the 2015 Conference on Retroviruses and Opportunistic Infections

Success Across Hep C Genotypes for Daclatasvir and Sovaldi

HARVONI WORKS FOR COINFECTION

Twelve weeks of Bristol-Myers Squibb’s (BMS) daclatasvir and Gilead Sciences’ Sovaldi (sofosbuvir) offered a 97 percent hepatitis C virus (HCV) cure rate in a recent Phase III trial among those with HCV genotypes 1 through 4 who were coinfected with HIV. The trial also included people with compensated cirrhosis of the liver.

Out of 151 participants who had not been treated for hep C before, two-thirds were randomly assigned to receive 12 weeks of treatment, while the other third took daclatasvir and Sovaldi for just eight weeks.

Another 52 people who had failed a previous hep C cure attempt underwent 12 weeks of treatment. The daclatasvir dose could be adjusted depending on an individual’s HIV treatment regimen.

While 97 percent of those treated for 12 weeks were cured, just 76 percent of those treated for eight weeks were so fortunate.

Shortly after the trial results were announced, BMS filed for U.S. Food and Drug Adminis-

In a recent Phase III trial, 12 weeks of treatment with Gilead Sciences’ Harvoni (ledipasvir/sofosbuvir) cured hepatitis C virus (HCV) in 96 percent of people who were coinfected with HIV. “This is an absolutely fabulous result,” says Daniel Fierer, MD, an infectious disease specialist at Mount Sinai Hospital in New York City, “showing again that HIV infection does not compromise treatment outcomes in this modern era of potent anti-hepatitis C medications.”

The study involved 335 coinfected participants, 98 percent of whom had HCV genotype 1, while 2 percent had genotype 4. Fifty-five percent had failed a previous hep C cure attempt; the rest were undergoing treatment for the first time. Twenty percent had compensated cirrhosis of the liver.

All of the participants had a fully suppressed HIV viral load and were taking one of three HIV regimens: Atripla (efavirenz/tenofovir/ emtricitabine), Complera (rilpivirine/ tenofovir/emtricitabine), or Truvada (tenofovir/emtricitabine) plus Isentress (raltegravir).

tration (FDA) approval of 12 weeks of the combination treatment, specifically for people with genotype 3 of hep C. A decision is expected by mid-September.

“However,” says Susanna Naggie, MD, MHS, director of infectious diseases research at Duke Clinical Research Institute in Durham, North Carolina, “similar to the fate of the [Olysio (simeprevir) and Sovaldi] regimen, the individual costs of two drugs is certain to be more expensive than competing FDA-approved regimens, leaving the future of a daclatasvir plus [Sovaldi] regimen unclear except in extenuating cases.”

ALL IMAGES: THINKSTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)

PrEP CAN BE A PROTECTIVE “BRIDGE” FOR MIXED-STATUS COUPLES According to a new study, when the HIV-negative partner in a mixed-HIV-status heterosexual couple takes Truvada (tenofovir/ emtricitabine) as pre-exposure prophylaxis (PrEP), this provides a highly effective “bridge” to preventing infection until the HIV-positive partner starts antiretroviral (ARV) treatment and reaches an undetectable viral load.

“Our results show that when given access to PrEP, couples wanted it and used it and garnered extremely high benefits from it,” says Jared Baeten, MD, PhD, a professor of global health at the University of Washington in Seattle and the head of the

Partners Demonstration Project, which is an ongoing trial of 1,013 mixed-status heterosexual couples in Kenya and Uganda.

The HIV-negative partners were offered PrEP until the HIV-positive partners, none of whom had been treated before, had opted to begin ARVs and been on them for six months. The researchers compared their results with data from m the group that took a placebo instead ad of Truvada in a previous study dy of mixed-status couples, called lled Partners PrEP. That study’s y’s findings suggested that, without ARVs or PrEP, there would d be an average of 5.2 transmissions ons per year for each 100 couples. s.

The Partners Demonstration Project saw only two transmissions during their study period, or 0.2 transmissions per year for each 100 couples. This means that the PrEP bridge and ARV treatment together lowered the risk of transmission by an estimated 96 percent. For those who actually adhered to the protocol, its protective effect appeared even higher, since both individuals who tested HIV positive had apparently stopped taking PrEP.

poz.com poz po p oz o z ..c .co co m JUNE co J U N E 201 JU JUN 20 2 2015 011 5 P 0 POZ OZ 2 OZ 23 3

POZ SURVEY SAYS

BY JENNIFER MORTON

Life Support

Living with HIV can be pretty hard sometimes, which is why it’s important to find a group of people or some individuals who can offer you support and encouragement when you’re feeling down. POZ asked you to tell us about your support networks. Here are your responses:

HOW WOULD YOU RATE YOUR CURRENT SUPPORT NETWORK?

WHO MAKES UP YOUR CURRENT SUPPORT GROUP?

DOCTOR/NURSE/HEALTH CARE PROVIDER

EXCELLENT

63%

21% GOOD

27%

FRIENDS

56%

FAMILY

41%

POOR

29%

...

30%

CASE MANAGER

24%

CO-WORKERS/ PEERS

1) To be able to talk openly and honestly 2) To feel less lonely and isolated 3) To seek out information

HAVE YOU EVER DISCUSSED LIVING WITH HIV IN A SUPPORT GROUP?

46%

54%

NO

11%

CHURCH OR RELIGIOUS COMMUNITY

10%

YES

OR WITH A COUNSELOR OR THERAPIST?

HAVE YOU EVER VISITED THE POZ/AIDSMEDS COMMUNITY FORUMS?

Yes 58%

Source: March 2015 POZ Survey

YES

NO

...

TOP 3 REASONS FOR VISITING A SUPPORT GROUP:

THINKSTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)

40

❤

PARTNER/SPOUSE

FAIR

23%

60%

%

42%

No

Visit forums.poz.com to connect with others poz.com JUNE 2015 POZ 29

From left: Whitney Joiner and Alysia Abbott founded the Recollectors.

CHILDREN WHO LOST PARENTS TO AIDS ARE FINDING COMMUNITY IN A GROUP CALLED THE RECOLLECTORS. (JOINER AND ABBOTT) BILL WADMAN; (ILLUSTRATION) THINKSTOCK

BY TRENTON STRAUBE

Whitney Joiner, a journalist then in her early 20s, was having drinks with colleagues when she mentioned that her dad had died of AIDS complications.

“Oh,” one of them responded, “my girlfriend’s father died of AIDS too.”

A simple enough statement, but one of exceptional weight. Though Joiner knew there had to be others like herself, she had never met any of them. Soon, Joiner and the girlfriend, Alysia Abbott, met up for lunch. Turns out, both their fathers were gay and died in 1992. Unlike Joiner’s dad, who was divorced from his wife and closeted to his two children in suburban Kentucky, Abbott’s father had been out and proud; after his wife died in a car wreck when Abbott was very young, he and his only child moved to San Francisco, where they became immersed in the bohemian Haight-Ashbury scene of the 1970s.

After their lunch, the two remained in touch, but life moved on. Abbott and that co-worker got married and had children; Joiner moved to Texas, then

poz.com JUNE 2015 POZ 31

Each story by a Recollector—the pronunciation stems from the verb “recollect,” as in “to remember”—is uniquely compelling and heartbreaking (see the sidebar for brief samples). Many are told as first-person accounts, either edited by Joiner or Abbott, or excerpted from memoirs. In addition, the site offers oral histories, Q&As, resources and family photos.

The group also maintains two Facebook pages: a private one where members can converse candidly, and a public one for posts to share openly. About 120 Recollectors are members of the Facebook page, but others are active in different ways. Their ages range from mid-50s to early 20s.

32 POZ JUNE 2015 poz.com

They span the country—with a few international members— and although a great number of them lost gay dads, the group, like the epidemic itself, spans races, genders, sexual orientations and socioeconomic backgrounds. Some are also HIV positive. “What’s important,” Abbott says, “is that the content represent the diversity of the Recollector experience.

We’re reaching out to Recollectors who are African American, Latino, those whose parents were drug addicts. We want to welcome those members without judgment.”

The way the group works, Joiner explains, is that someone will contact them—“I’m one of you!”—and then get directed to the private page. After a while, if they’re comfortable with it, she and Abbott help them craft stories for the website.

Not everyone is comfortable with that. Others are pressured to remain silent—like the Recollector whose family member is running for public office, or the one who wants to share reminiscences of his beloved father, but the circumstances of his death—the family’s church refused to bury him because

(PHOTOS) COURTESY OF THE RECOLLECTORS

returned to New York City. As the he 20th anniversary of their fathers’ rs’ men deaths approached, the two women talked more frequently, spurred by hed Abbott’s work on her now-published ther. r book, Fairyland: A Memoir of My Father. hile “We thought, ‘It’s been a while now; why don’t we know more people like us?’” Joiner recalls. Soon, the idea for a project emerged: Why not start a group, or publish an anthology and set up a website to do outreach and collect stories?

Then in February 2014, Abbott participated in a panel discussion titled “The Personal and the Political: Losing Parents to AIDS” that was sponsored by the New York Public Library and Visual AIDS. The program’s promotional material summed up the need for what became the Recollectors: “The amount of people whose parents died of AIDS may number in the hundreds of thousands nationally, and in the tens of thousands in New York City. Yet they have never been heard from as a community.… This event is to start this conversation.

What are the experiences of people whose parents died of AIDS? How do they understand these experiences?

What do they need?”

It was a pivotal event for Abbott, inspiring her to more advocacy and connecting her with other survivors.

Meanwhile, the project she and Joiner envisioned was moving forward, thanks to funding from a successful Kickstarter campaign, and in October 2014, TheRecollectors.com—“a storytelling site and community for the many children and families left behind by parents who died of AIDS”—was born.

Each story of a parent lost to AIDS offers a uniquely informative and gripping piece of history. Most of these very brief, edited examples are taken from TheRecollectors.com.

1) Sherise Eason, 9, with her mother and baby brother, 1991. In an oral history as told to Whitney Joiner, Eason says: “It’s now been over 14 years since [my mom] died, and it’s taken me that long to fully acknowledge her death.

But I have a grown daughter now, and I’ve let go of that anger. I can’t imagine what my mother went through. Her only crime was that she fell in love with a man who was infected.”

2) Crystal Gamet with her mother, Deborah Kellner Arnett, 1986. Gamet offers a loving homage to her mother, who was illiterate and lived in the Allegheny Mountains of rural Pennsylvania. “My mom never knew that she could have lived a long life.

That led to her dying, I think. When I later watched How to Survive a Plague, I wished my mom had known about that kind of stuff, that she just had community so that she didn’t have to feel less than human. I think she didn’t actually know you don’t have to die. She died in 2004”—almost a decade after the advent of lifesaving HIV meds.

3) Reed Vreeland and his mother, Sandra, 1989. Vreeland was born with

HIV. “Knowing I had the same thing that I was watching her die of, that was hard to grapple with,” he tells POZ. “I felt isolated.

But sharing the stories has been a healing process for Recollectors.”

4) Stefan Lynch and his father, Michael, 1986. Lynch says that growing up with his dad and “the Aunties” in Toronto’s gay activist culture taught him “how to really have fun, even when life is not easy and even when people are dying.”

5) Sara Rafsky with her dad, Bob, 1987.

Rafsky’s father is featured in the ACT UP documentary How to Survive a Plague. The film’s 2012 debut at Sundance, she says, marked “a transformation” in her life. “This was not something I discussed openly, not with friends, family, anyone—and then, overnight, I’m doing Q&As in front of hundreds of strangers.”

6) Viviana Maldonado and her father, Jose, 1998. A Mexican immigrant, her dad was an Evangelical preacher in Nebraska, ministering to Latino workers when he was diagnosed with AIDS. “I was always thinking, When is this going to blow up?” she says, expecting to be bullied and shunned. “What happened was incredible:

Everyone was supportive. My father was really loved in the community.”

7) Jason Schmidt and his father, Mark, 1980 or ’81. In an excerpt from his memoir A List of Things That Didn’t Kill Me, Schmidt tries to deal with his dad’s way of life. “They say there’s no zealot like a convert,” he writes, “and Dad was definitely a convert; having grown up in the closet, he’d found his full gay self in Seattle at the age of thirty. And thirty-two-year-old gay Dad was pissed off about all those wasted years of having sex with women just to impress other people with how straight he was. Thirty-two-year-old gay Dad was pissed about a lot of things.”

8) Gillian Bannon with her father, Larry W. Mahon, 1989. “My dad was a leather man, super creative, very openly gay,” Bannon tells POZ. “I idolized him, and he understood me.” Losing him and his gay friends left Bannon feeling lonely. Discovering the Recollectors, she says, “feels like I’ve been given the keys to the safest playground on earth.

I get to talk about my dad, and I don’t have to worry about anything I say. It’s open acceptance. It has been amazing.”

poz.com JUNE 2015 POZ 33

34 POZ JUNE 2015 poz.com

“I’M ABLE TO SHARE MY STORY NOT JUST TO HEAL MYSELF BUT TO BE THERE FOR OTHER PEOPLE.” Similarly, Vreeland says, the Recollectors offers a place to mourn and celebrate lost parents. “It’s a beautiful way to bring them back into our lives, not from a place of pain and isolation but from a place of community and healing.”

LGBT community. After Stefan Lynch lost his gay father and step-dad, he remained active in the queer community for years by becoming the director of what’s now COLAGE, a group for children of LGBT parents.

“The Recollectors feels very much like early COLAGE conferences,” he says, “except with social media instead of hotel ballrooms. Even though I’m not having the ‘I’m not alone!’ feelings that many are, the Recollectors stories are gripping

BOTH PHOTOS: BILL WADMAN

he had AIDS—remain deeply upsetting to his mother.

“What we’re fi nding,” Abbott says, “is that there are a lot of never-healed wounds. It was such a painful experience because there was so much shame and secrecy around it.

There was a lot of, ‘Let’s put this away and not talk about it anymore.’ So it was never processed.”

To confound the situation, Abbott says, many Recollectors were young as they watched their parent die; they were often told what to do and say, and today, with the insight that comes with maturing, they carry regrets about the way things happened.

The Recollectors group offers a space to heal. “There is something powerful about being an adult and telling the story,” Abbott says. “It’s an active process instead of a passive one.” As such, it can even be viewed as a form of activism through storytelling.

Joiner experienced this fi rsthand. She had not spoken about her dad with many people, but as the Recollectors campaign kicked off, she realized she had to lead by example.

“I was really scared and nervous about it,” she recalls. “It’s a story you carried with you your whole life and you want to tell it in the right way, but then I faced a deadline and it was like, I just have to put it out there for the greater good.”

She benefitted from the process on a personal level too: She’s now closer to her brother and mom.

“Not that we spend much time talking From left: Joiner’s dad never came about it now,” she clarifies, “but it used to out to her as gay.

Abbott’s dad feel like there was this elephant in the raised her in gay room. I guess I didn’t realize how isolated San Francisco.

I felt until I heard all the other stories, but now everything feels more integrated.” What’s more, she adds, “sometimes I felt close to my father, sometimes not.

But now he’s close all the time, and that’s nice.”

“I’ve seen that sharing stories can be a healing process,” says Reed Vreeland, a Recollector who lost his mother to the virus and was himself born with HIV. “I’m able to share my story now, not just to heal myself but to reach out and be there for other people coming out of the pain of their experiences.”

Today, Vreeland is the director of policy at Housing Works, which fights HIV and homelessness (he has also worked at POZ). But like many Recollectors, he wasn’t always so open about HIV. He tells of going to high school in New York City with Sara Rafsky—the two even had a class together—but neither knew the other had any connection with AIDS. It wasn’t until adulthood that the two reconnected and he realized her deceased father was Bob Rafsky, a prominent activist featured in the documentary How to Survive a Plague.

“One reason I wanted to join the Recollectors,” Vreeland says, “was because of the sense of isolation I felt growing up.

While my family was supportive, my father is not HIV positive and I knew few people who had common experiences.

With Recollectors, we have a connection that would be difficult to have under normal circumstances.”

In fact, the “Oh, that happened to me too!” moments have been huge for Recollectors, says Abbott, noting as an example members’ conflicted thoughts about World AIDS Day.

public eevents, paid staff and audio recordings, and the two are always recordin on the lo lookout for other Recollectors.

because they take me back to the time I was a teenager in the middle of a plague that was killing my family while my peers worried about the right haircuts and curfews curfews.””

Other Recollectors have a more fraught relationship with today’s gay scene. “The specter of AIDS speaks to an era when gay meant being on the outside and dangerous,” Abbott explains. “People who came of age later want to distance themselves from that because it’s not a TV-friendly picture of being gay.” This leaves some Recollectors feeling out of sync with both the straight world and the LGBT community.

Of course, being gay or dying of AIDS “doesn’t make someone a saint,” as Abbott puts it. “But we still want to tell those stories.” And they do, as in the excerpt from Victoria Loustalot’s memoir This Is How You Say Goodbye: A Daughter’s Memoir, in which she grapples with the fact that her HIVpositive father refused to go with her mother to get tested. “I try to understand that he married because he felt that he had to,” she writes. “He was raised in a different time in a conservative pocket of a liberal state. His parents were strict.

I try to understand.… But still. To not think at all of my mother and to refuse to support her. To be so unfeeling. How can I be proud to call such a man my father?”

This story, too, helps fi ll in missing chapters of AIDS history—as will future Recollector stories and projects.

Abbott and Joiner already envision face-to-face meet-ups,

Recollectors has been nothing short of Recollecto life-alterin “Other than the birth of life-altering. my son, th this is the most amazing thing that has ha happened to me since my dad’s death,” she says. Bannon was very close with her fat father, Larry W. Mahon, whom she describe describes as a “super creative” leather man very active act in San Diego’s gay scene.

In her early 20s, 2 she even got an apartment near his. “I ido idolized him,” she says, “and he totally understood unders me. Dad was like Peter Pan—he never neve grew up—and I loved it.”

His death in 19 1994, and the loss of most of his friends, was de devastating to Bannon.

In early 2014 2014, she came across Abbott’s Fairylandd and the two connected online.

“Before last yea year, it was a lonely existence,” Bannon says. The Then she joined the Recollectors.

“I feel like I’ve b been given a secret key to the safest playgroun playground on earth,” she says. “No bullies, no bigots. Just open acceptance.”

At first she was reluctant to post on the public Facebook page—“I page—“ had dreams I would lose my job,” she says—bu says—but when she gave it a try, the items garnered mor more Likes than her other posts.

Emboldened, she’s now becoming an advocate, speaking publicly ab about her experiences.

Before the Recolle Recollectors, she says, “I was never able to watch Philadelphia Philad or any [AIDS] movies.

But now I watched The Normal Heart and How to Survive a Plague—I couldn’t believe I didn’t know about dumping ashes on the White House lawn,” she adds, referencing ACT UP’s 1992 action when members dumped the cremated remains of loved ones on the lawn to protest government indifference.

“This year has been an awakening for me,” Bannon continues. “It’s been food for my soul. I feel better, more confident. And it’s making me reflect on who I want to be.”

It’s also inspiring her to work on her own memoir.

Meanwhile, Abbott’s book is about to reach a much wider audience. She recently had dinner with Sofia Coppola—yes, the Oscar winner—who is producing a fi lm version of Fairyland. Coppola is working on the script with Andrew Durham, who will direct and who also, it turns out, is a fellow Recollector. During the meeting, Coppola mentioned that fashion icon Tina Chow, who died of AIDS complications in 1992, had two children.

“I want to fi nd them,” Abbott says today. “There are just so many stories—and they’re all so very powerful.”

To connect with the group, email info@therecollectors.com, or visit therecollectors.com or facebook.com/therecollectors.org.

poz.com JUNE 2015 POZ 35

AN ESSAY BY MARK S. KING ON HIS RELEVANCE AS A LONG-TERM SURVIVOR IN THE HERE AND NOW

CREDIT

Surviving

CREDIT

Life Itself Mark S. King in 1985, the year he tested HIV positive, and now

T

HE YOUNG WOMAN SITTING ACROSS from me on the bus is in her mid-20s. She turns to her companion and her voice grows serious.

“I know someone who died,” she says in the hushed tone reserved for tales of mortality. Her friend looks up from his phone. “He was a good friend of my brother,” she goes on. “He was killed in a motorcycle accident a few months ago. It was just awful.” As her friend offers words of comfort, my own thoughts produce a rueful smile and a nagging question.

Just one? You know just one person who died?

By the time I was her age, death in my social circle was so commonplace the body count approached the toll of a commercial airline tragedy.

I listen as the woman reverently shares the details of the accident, of the shock waves that surged through the family, of what the dead friend was like and who freaked out at his funeral. And then a bittersweet realization strikes me.

The friend she lost has a story of his very own. It is the chronicle of one tragic death, with all of its intimate details and reverberations. His story will be repeated by the young woman for years, and by her brother and by the remaining loved ones of the absent friend. And they will grieve and remember this individual death and grant it the weight of a rare tragedy.

I

DIDN’T GET MANY CHANCES to do that, living as a young gay man in Los Angeles in the 1980s. There were very few singular deaths. It seemed like everyone was doing it. And among them, a dozen friends close to me, struck down within months of one another, with whom I shared a history of youthful secrets, joys and indiscretions, never to be spoken between us again.

Already I have indulged in a regrettable pastime that aggravates me when others pander to it. I am counting my lost friends like selfishly guarded chips in a morbid poker game, claiming my grief as if the high tally amplifies the legitimacy of my loss. There is no hierarchy of misery. The death of one person close to you is quite enough.

And yet there are harrowing, undeniable moments from my past, drawn from 30 years living with HIV, that have shaped my attitudes and the senseless tragedies that befall us.

I can conjure them but I must do it deliberately, for they are held captive in secluded corners of my mind and I release them with great caution. Perhaps now is the right time to unlock a few of those images.

The fluids in Lesley’s dying body percolating like a coffee maker as we stood at his bedside awaiting his last breath. The anguished admission by my brother, Richard, that he helped his critically ill lover swallow a deadly, Seconal-laced cocktail in order for him to die on his own terms and avoid the final indignities of AIDS. My visit to Pablo in intensive care during his pitiful throes of dementia, nodding my head reassuringly as I tried to decipher his final, incoherent pleas.

They are a litany of despair, these heartrending tales, but I feel compelled to reveal them as part of another common exercise: to authenticate my history as a “long-term survivor.” I have misgivings about that unsettling designation because it doesn’t

42 POZ JUNE 2015 poz.com

speak to my other, parallel life experiences and it suggests a dismissal of my relevance in the here and now.

I

N THE DECADES SINCE THOSE sorrowful days, I have faced a host of perilous circumstances apart from AIDS, including a car crash, drug addiction, serious medical procedures and weapons pointed in my direction.

Like everyone else, positive and negative alike, I am a survivor of life itself.

That life has included falling in love, changing careers, teasing my friends, watching my cats wrestle one another, and looking forward to whatever lies ahead with a deep sense of gratitude and joyful anticipation.

And it is this prism—one that includes AIDS as only a segment of my life—through which I view the world today.

My status as a long-term HIV survivor does not make me a champion or a museum piece to be examined and admired. I am a man in the prime of his life. My age and maturity guide me, not the virus that has failed miserably to kill me.

The grief-stricken young man I once was held no clue about the mystifying speed with which time passes. The swift interval between the early days of AIDS and merciful treatment breakthroughs confounds me even now. Suddenly I blinked, and when I opened my eyes I was 40 years old and the world was a far different place.

M

ANY OF US REMEMBER THAT new world, when people with AIDS were saved by a miraculous “cocktail” of new medications. Living with HIV before the mid-1990s, when these medications were introduced, has become the popular line of demarcation for entry into the fellowship of long-term survivors.

My work in HIV advocacy continued during this time while others retreated to lives away from daily reminders of the epidemic. I did not fault them for that, in fact I envied them, but the army of our earliest activists, forged in the first years of the plague, had diminished.

By then, women and people of color had gained more traction and acknowledgment in the HIV arena, though without the national fervor or the generous support enjoyed by the original, largely gay agencies.

It was a time of such hope and encouraging progress, but if you scratched the surface of these victories you found they were dependent on privilege, money and access. Deaths continued unabated behind a dark curtain of racism and poverty.

The gay community began to avert its eyes from the continued infections of people unlike ourselves, and I joined many other exhausted activists who abandoned town hall forums devoted to HIV for the celebratory relief of the dance floor.

Massive circuit party events became a vibrant diversion, summoning revelers by promoting their dubious contributions to AIDS service organizations. After a generation of relentless mortality I felt entitled to the party, to the steroids and the gym membership and the body-thumping beats of house music.

That is, until the festivities morphed into drug-fueled bacchanalias that required ambulances with the same regularity

“OUR HEARTBREAKING PAST IS IMPORTANT HISTORY THAT SHOULD BE PRESERVED. IT IS NOT A PREVENTION STRATEGY.” that had once been needed at AIDS hospices. I fell victim to their excesses, and my drug addiction and recovery process removed me from HIV advocacy for the next several years.

(PREVIOUS PAGES) COURTESY OF MARK S. KING

I

BLINKED AGAIN AND NOW find myself here, sitting in my home office as a man in his 50s. My workspace is populated with relics of the epidemic, the walls filled with posters from AIDS Walks and photos of protests and triumphant arrests. A vast collection of name badges from AIDS conferences are strung from a single hook in an enormous, colorful bouquet. And everywhere around me are reminders of the missing. Pictures of friends whose faces will not age. Borrowed sweaters in the closet that need never be returned.

They comfort me, these tangible reminders of strife, victory, love and loss. They help me embrace and appreciate my life history. Perhaps I don’t find the title of “long-term survivor” so unsettling after all. There are worse things.

Most of all, the trauma that had once consumed me is now shrouded in the fog of a fading dream.

What remains are the wondrous developments of the present, like treatments that have also rendered people with HIV noninfectious and the amazing potential of pre-exposure prophylaxis (PrEP), a pill to prevent someone from contracting the virus. The advent of PrEP is the most significant prevention advancement in a generation. It is just the kind of miracle we once prayed for as we sat silently in pews at memorial services.

But astoundingly, these developments have been nearly as controversial as they have been celebrated.

There are thoughtful conversations about the cultural and medical effects of PrEP. What a shame they are being drowned out by clanging arguments about who is using condoms and who is not. The ludicrous chatter about who is a whore, a role model or a rebel foolishly reduces human sexual behavior to a problem that must be solved. Much of it seeks to impose sexual sterility in the way homophobic conservatives once denounced all gay bedroom antics, whether they were risky or not.

I remember what sex was like before gay men started using condoms. It was glorious. It still is. I always thought that finding our way back to enjoying sex without a barrier was kind of the point. Even the popular slang for sex without condoms, “barebacking,” evokes some kind of deviant sexual pathology. The entire history of human sexuality would suggest otherwise.

I watch the absurd finger-pointing today, the naïve segregation of positive and negative, the lack of empathy granted to human failings, the tendency of the newly infected to call the police before they call a doctor, the fracturing of the advocacy efforts built over decades, and I weep for the community we once were.

O

UR HAND-WRINGING OVER HOW to engage young people bemuses me, particularly our morbid fascination with aggressively foisting upon them the horrors we once endured, as if clubbing them with fear will somehow make them rethink their youthful transgressions. Our heartbreaking past is important history that should be preserved. It is not a prevention strategy.

Trying to imprint our life lessons on the young is a fool’s errand practiced without effect for millennia. I have never walked up to anyone who served in Vietnam and asked him to sit down and tell me all about it. I may respect the elderly soldiers in Veterans Day parades, but whatever post-traumatic disorders or multiple losses we may share fail to unite us. I watch them roll by in wheelchairs, festooned with medals and shriveled into nothingness, and then I have the audacity to wonder why younger gay men don’t consider my life experiences relevant.

Our influence as long-term survivors may be limited, but we can find meaning and engagement as cultural elders and mentors. To whatever degree younger people are receptive, we have so much to offer about the nuances of treatment, the various side effects and the failings of the pharmaceutical complex that we have rallied against so effectively through the years.

Regardless, nothing should deter us from being of service to one another. We must support the emerging networks of other survivors and work to find solace in our shared history. We are a displaced segment of a community that once ministered to us.

Our bond is vital to finding solutions to the issues we face as an aging population.

As wearying as our battles have been, as unwelcome as we may sometimes feel in the modern advocacy movement, we have plenty to contribute. We had better do it while we still can.

I am sensitive to the passage of time because I have seen lives with great promise left unfulfilled. I may no longer fear dying, but I am sorely afraid of not taking full advantage of these precious additional years that were once unimaginable. Regrets, the things unsaid and undone, are what frighten me and urge me onward.

The mysteries of life and time will be revealed in due course: to the woman on the bus grieving her singular loss, to those who would howl at the moon over behaviors they do not understand, to survivors grappling with the meaning of tragedy, to young people negotiating the sexual terrain, to you and to me and to all the rest.

Enlightenment awaits. All we have to do is blink.

Go to blogs.poz.com/marksking and myfabulousdisease.com to read more insights from activist, author and blogger Mark S. King.

poz.com JUNE 2015 POZ 43

HEROES

BY CASEY HALTER

Khafre Abif is the editor of Cornbread, Fish and Collard Greens: Prayers, Poems & Affirmations for People Living with HIV/AIDS, a 616-page anthology of inspirational poetry and prose by and for people living with and affected by the virus.

The book includes works from more than 125 contributors around the world and was born out of Abif’s desire to help build and support a more multifaceted reality for people living with HIV. “For some time, I have been struggling with the question of ‘To what community do I belong?’” says Abif, an Atlanta-based father of two, who found out he had HIV in 1991. “I think I’ve received more stigma around being bisexual than I have being positive.”

Abif didn’t come out about either his sexuality or his status until 2005, about the same time he started out as an activist. The former librarian has since blogged for The Body and appeared in several HIV documentaries, among a variety of other advocacy projects.

“For me, it is not enough to be tolerated.

I need to be loved and respected,” he says.

In fact, Abif currently has five more HIVfocused anthologies in the works: for positive women (under the title Sistah’s Speak), heterosexual men (He Ain’t Heavy), young people (It Is Our Turn to Speak), transgender people (TransVoice: Shout Out Loud) and the religious community (A Pastor’s Prayer for People Living with HIV/AIDS).

A heads-up to prospective writers: Abif is calling for submissions for all five books, with publication tentatively set for 2016.

“The stories people tell have a way of taking care of them,” he says. “There are still people who are isolated living with HIV. So if those books get into their hands, there’s affirmation, there’s hope.”

Also on Abif’s roster is a cross-country HIV education mission, Cycle for Freedom. By next May, he hopes to ride his bike the length of the Underground Railroad, stopping in 14 cities to host testing rallies, film screenings and discussions about the state of HIV/AIDS. Abif will also be publishing a memoir, titled Raising Kazembe—an homage to his son.

“My opening up has changed a lot of people,” says Abif. “I was married, I’m still having sex, I had HIV-negative children, achieved professional success, and people ask, ‘You’ve been positive for all this time?’ I hope I’m able to knock out some misperceptions and get people to look at the truth and not the myth.”

Interested in reading Cornbread, Fish and Collard Greens? Books and e-books are available from Amazon.com and AuthorHouse.com, the anthology’s indie publisher.

44 POZ JUNE 2015 poz.com

AUDRA MELTON STEVE MORRISON

Speaking Out

SURVEY

7

What is the top barrier to ending the AIDS epidemic where you live?

❑ Stigma and discrimination ❑ Homelessness and housing instability ❑ HIV criminalization laws ❑ Lack of access to antiretroviral treatment ❑ Lack of HIV prevention programs ❑ Lack of job training and vocational opportunities for people living with HIV

❑ Lack of transportation to medical appointments for people living with HIV

❑ Lack of access to insurance coverage ❑ Lack of LGBT-focused medical care ❑ Other (please specify):___________________

PLAN OF ACTION In June 2014, Governor Andrew Cuomo announced a plan to end the AIDS epidemic in New York by 2020 that entails reducing the number of new HIV infections to 750 per year.

Since then, Minnesota and Washington have also committed to ending their states’ AIDS epidemics. POZ wants to know your thoughts on these initiatives.

1

8

❑ High priority ❑ Medium priority ❑ Low priority 9

What does “ending the AIDS epidemic” mean to you? (Check all that apply.)

❑ Significantly reducing new HIV infections ❑ Improving care and services for people living with HIV/AIDS ❑ Providing better access to health care for low-income

Are you aware that it is possible to end the AIDS epidemic in your state without a vaccine?

❑ Yes

Compared with other health problems in your state, what priority should be given to ending the AIDS epidemic?

communities

❑ No

❑ Focusing prevention efforts on populations with the highest rates of infection

2

Were you aware that the governors of New York, Minnesota and Washington announced plans to end the AIDS epidemic in their states?

❑ Yes 3

4

❑ No

Do you believe these initiatives to end the AIDS epidemic will be successful?

❑ Yes

❑ Ending AIDS-related deaths ❑ Having a cure for HIV ❑ Other (please specify):___________________ 10

What year were you born? __ __ __ __

11

What is your gender?

❑ No

If a similar initiative were announced in your state, how likely would you be to advocate on its behalf?

❑ Male ❑ Female ❑ Transgender ❑ Other 12

❑ Very likely ❑ Somewhat likely ❑ Not very likely

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other 13

5

How would you rate your state’s current efforts to prevent and treat HIV and AIDS?

❑ Excellent ❑ Fair

THINKSTOCK

6

What is your ethnicity? (Check all that apply.)

❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify):___________________

❑ Good ❑ Poor

How much do you think HIV-related stigma hinders your state’s ability to end the AIDS epidemic?

❑ Significantly hinders ❑ Somewhat hinders ❑ Does not hinder

What is your sexual orientation?

14

What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #204, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424