POZ September 2014 by Smart + Strong

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Mother Knows Best Julie Lewis on 30 years as an HIV survivor

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Tez Anderson is kicking ASS (AIDS Survivor Syndrome) in San Francisco.

2014 POZ 100

CALL FOR NOMINATIONS

POZ is seeking nominations for the 2014 POZ 100 celebrating individuals under 30 who are making a difference in the ﬁght against HIV/AIDS. Visit poz.com/poz100_youth for more information and to submit your nomination today!

POZ OPINION

Advocates, thought leaders and folks just like you all have a point of view. Go to poz.com/ opinion to read their takes on living with the virus, improving care and treatment, increasing prevention efforts and more.

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32 HEALTH CARE IS A HUMAN RIGHT Julie Lewis and the 30/30 Project seek to bring affordable access to those most in need. BY ORIOL R. GUTIERREZ JR. 36 MIDLIFE VIRUS Older people newly diagnosed with HIV can stay resilient. BY TIM MURPHY 44 NOTHING WITHOUT US A new documentary explores the role of women in the HIV/AIDS pandemic. BY CASEY HALTER

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Time After Time

7 FROM THE EDITOR

Heart, Cecilia Aldarondo pays tribute to her uncle and his long-lost partner.

11 FEEDBACK

22 CARE AND TREATMENT

Your letters and comments

12 POZ Q+A

Dan Tietz on his new HIV role in the administration of New York City’s Mayor de Blasio.

18 POZ PLANET

A new musical about dance legend Sylvester • two new memoirs on living with HIV • three wins in Iowa against HIV criminalization • BOOM!Health provides a menu of services in the Bronx • CDC starts talking with gay men • NYPD changes its condom policy • hip-hop, hoops and HIV • POZ Stories: Kecia Johnson

21 VOICES

In her documentary, Memories of a Penitent

Coral reefs yield anti-HIV proteins • CDC gives props to PrEP • cobicistat challenge to Norvir • the lowdown on low vitamin D • cooked up claims about soy sauce

29 RESEARCH NOTES

Taking the HIV fight to hard-hit streets • more reasons to start treatment early • transplant drugs may reduce HIV reservoir • virus in semen of “undetectable” men

30 SURVEY SAYS

How is your mental health?

48 POZ HEROES

AIDS activist and survivor Tez Anderson helped create the first National HIV/AIDS Long-Term Survivors Awareness Day.

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COMMENTARY ON HIV/AIDS

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Time After Time

MARK MY 44TH BIRTHDAY THIS summer with little fanfare. Apart from being numerically interesting (I’m not much into numerology, but I do appreciate the symmetry of two identical numerals), it’s no biggie. Like most people, I give more attention to birthdays ending in fives and zeros. That said, I do appreciate every birthday. I never thought I would see 30 when I was diagnosed with HIV at the age of 22. Every birthday is a chance for me to give thanks to the universe for still being alive. Even though this birthday may not have much pizzazz otherwise, it does possess its own specialness. From now on, I will have spent most of my life knowing I have HIV. Every day, every year and every decade that I hope to have the good fortune of living will pull me that much further from my HIV-negative former life. Although it has been 22 years since my diagnosis, I still don’t embrace the idea of my being a long-term survivor. Others may label me as such, and I won’t argue. I just don’t feel like I’ve earned it yet. Maybe I’ll be ready to accept that phrase for myself after 25 years post-diagnosis. Circle back with me then. By any measure, Julie Lewis certainly qualifies as a long-term survivor of HIV. Marking 30 years of living with the virus is an achievement for anyone. However, as the mother of Ryan Lewis, one half of the Grammy Award–winning hip-hop duo Macklemore & Ryan Lewis, Julie realized she could mark the occasion with a lot of fanfare, enough to be able to give back. In recognition of 30 years living with HIV, Julie launched the 30/30 Project with the support of Ryan and the rest of her family. The project seeks to build 30 health centers that will operate for at least 30 years to serve the people most in need around the world.

The centers will provide HIV/AIDS services, as well as comprehensive medical services. Go to page 32 to read our exclusive interview with Julie. The challenges of aging with the virus are only compounded for those who were on the front lines in the early days of the epidemic. Many of them, including Tez Anderson, report experiencing symptoms usually associated with post-traumatic stress disorder. Go to page 48 to read how he’s ﬁghting back by launching Let’s Kick ASS (AIDS Survivor Syndrome). Living long-term with HIV is usually what people think of when they think of older folks and the virus, but that’s not the whole story. Increasingly, people over 50, such as Nancy Asha Molock and Rik Gillette, are being newly diagnosed with HIV. They have similar concerns about aging with the virus, but they also have unique challenges with “you should have known better” stigma. Go to page 36 to read how they’re staying resilient.

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 SEPTEMBER 2014 POZ 7

FEEDBACK

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.

PTSD [post-traumatic stress syndrome]. Kick ass! BILL MCMILLAN, CHICAGO

Judith (Jurnee Smollett-Bell) is tempted by Harley (Robbie Jones) in Tyler Perry’s latest ﬁlm.

MEDIA MATTERS

(GIRL AND LAPTOP) THINKSTOCK; (JOHNSON) GETTY IMAGES/TASOS KATOPODIS; (STERLING) GETTY IMAGES/ROBYN BECK

In the article “The Trouble With AIDS in Mainstream Media” (June 2, 2014), Daryl Hannah raised the issue of the lack of mainstream media coverage on advances in HIV treatment, research and prevention. The media and education systems, as well as government and nongovernment medical community associations, must get the message of proper HIV/AIDS history and factual up-to-date medical information across to everyone. The HIV community needs to reunite and stay compassionate for one another, since we all are in this ﬁght together. HIV pills can only do so much. Misleading education is the cause of man-made stigma.

manner as advances in cancer, diabetes, hypertension, etc. The local AIDS Walk should get the same treatment as the Komen run for breast cancer. The stories I would like to see in our media (POZ especially) are stories about people working to reduce and eventually end the stigma. I care about the research-type info as well, but there are many resources out there for the medical stuff. You are the only game in town for the people stories. IAN POST-GREEN

MICHAEL BIVENS

Mainstream media needs to be normalizing coverage of HIV, reporting in the same

STELLA, PHOENIX

Your comments about PTSD are very interesting. As a person who has been living with AIDS for 29 years, I have also recently been going through severe depression and mood swings. Until I read your story, I thought I was the only person reacting to my situation in this manner. Thanks for sharing your story. RICK, NORTH CAROLINA

Thank you for posting this article. I am in year 24, and I have buried two husbands. I am not yet 50 years old, and people ask me how I have been widowed twice. I have felt tremendous guilt about why I am here and they are not. I am learning to just live and like it, but this is not an easy journey.

DAVID

Although I agree that the mainstream media has neglected speaking about HIV, I don’t think the author and I would agree on the stories the mainstream media should be telling. Here in the South, we don’t talk about ending AIDS; we talk about the height of the infection epidemic. We don’t talk about people having access to PrEP and preventative meds; we talk about people just trying to get access to basic health care and HIV care in the ﬁrst place.

Tez, thank you for organizing Let’s Kick ASS. I am a female long-term survivor for 24 years and have experienced these same feelings of still being alive. My son who was born infected in ’93 is also having coping problems. Nevertheless, I managed to acquire my college degree and become a published author, and my son and I are always willing to do public speaking about living with HIV. We are healthy and undetectable—and yes, we still dream and search for happiness. Peace.

DWOODS

DAY OF REMEMBRANCE

In his op-ed “A Day to Call Our Own” (May 22, 2014), Tez Anderson wrote about the launch of the National HIV/ AIDS Long-Term Survivors Awareness Day on June 5 and his organization Let’s Kick ASS (AIDS Survivor Syndrome). Read more about Anderson on page 48. Thanks for sharing your story and for acknowledging others. I have similar thoughts and feelings and feel that I too suffer from

I’ve been HIV positive for ﬁ ve years. There are people in my support group who are 20, 25 and 30 years positive. They are strong, caring, powerful movers for the cause. I admire and thank them for their leadership, guidance and continued work in the ﬁght against HIV/AIDS. Let’s continue to strive for a cure and the continued education about this virus, and let’s put an end to stigma. SARAH Y. JACKSON, BATON ROUGE, LOUISIANA

FOUL PLAY

The article “Donald Sterling Claims Magic Johnson Not a ‘Good Example’” (May 13, 2014) addressed the racist comments made by the owner of the Los Angeles Clippers, and his subsequent remarks about Magic Johnson during his interview with Anderson Cooper. I was in Los Angeles at the time of Donald Sterling’s ignorant and uninformed statements about Magic Johnson. I was heartened to see that some restaurants posted large announcements stating Sterling’s patronage was not welcome. Race relations still remain a very touchy issue in Los Angeles, and by adding HIV/AIDS to the mix, Sterling really stirred the pot. In light of his own heritage, he should certainly have much more compassion. R. MARK DESJARDINS, VANCOUVER, BRITISH COLUMBIA

I think that Sterling may be a racist; however, he did say something that I have been thinking. Magic has not done enough for the HIV community. There are many new infections in young males in the black and Hispanic communities that could beneﬁt from a role model telling them to keep it zipped. BOBBY

Sterling’s comments show that HIV is still stigmatized by society. It only takes one sexual encounter to get HIV. And there are other ways of getting HIV. Sterling needs to be educated. SHIRL

poz.com SEPTEMBER 2014 POZ 11

THE POZ Q+A

BY ORIOL R. GUTIERREZ JR.

Dan Tietz is mapping out a new vision at the Human Resources Administration in New York City.

STRATEGIC PLANNING

N MAY, DANIEL TIETZ WAS APPOINTED AS CHIEF SPECIAL SERVICES Officer at the Human Resources Administration (HRA) in New York City. In his new role, Tietz oversees a broad range of programs that provide assistance to the city’s most vulnerable residents. The LGBT and HIV/AIDS activist brings years of experience to the agency, having previously served as the executive director of ACRIA (AIDS Community Research Initiative of America) for eight years. A long-time advocate for social justice, Tietz shares with POZ his vision for ending the epidemic in the city, as well as how he plans to improve the lives of New Yorkers by improving the vital services offered by the HRA. Tell us about your new role at the HRA.

Prior to Steve Banks being named commissioner of the HRA, there were a couple dozen folks with the title executive deputy commissioner who reported to the commissioner, and I think Steve realized it was a bit unwieldy. Now there’s a chief program officer who oversees benefits like public assistance, Medicaid and food stamps. I oversee things that could be described as services that the HRA actually does for New Yorkers and that are delivered directly. These include domestic violence and adult protective services, as well as the HIV/AIDS Services Administration (HASA), which is part of the customized assistance services at HRA. How does your experience help you in your new role?

I have a long history with Banks, as well as with Mayor Bill de Blasio. I was Banks’s campaign manager in 2001 when he ran for city council in the 39th district. [Banks narrowly lost to de Blasio.] There is no one that I intuitively share views with more

12 POZ SEPTEMBER 2014 poz.com

than Banks. We see folks in this town and beyond who need a host of support and services to have a better quality of life. The bulk of the folks who are served by HASA have challenges in their lives beyond HIV, such as housing-related or employment-related issues or substance abuse or mental health challenges. HIV is just one bit of the story and often times the other needs are very complex. For the last 20 years, the past administrations, from Bloomberg to Giuliani, found ways to say no and found ways to limit access and turn people away. I don’t think that’s what we have in mind. After years of advocacy, the 30 percent rent cap for low-income people with HIV/AIDS receiving rental assistance has finally passed. How will you play a role in moving this and other policies?

One of the challenges playing out between city and state governments is that there are very limited things the city can do all by itself without state approval or state money. For example, I understand there’s a push to get HASA

BILL WADMAN

People with HIV/AIDS have a new yet experienced ally at the New York City Human Resources Administration.

expanded to those beyond a narrow AIDS diagnosis. That’s a state regulatory issue, and it’s not within the city’s control. If the mayor, commissioner and I all agree on something, then we’ll need to persuade Albany to go along. We are committed to doing that, which is a good shift for this administration. The 30 percent rent cap is already a big shift because it means that folks are no longer at risk of losing their housing because they can’t afford their rent. And some folks in supportive housing can now afford to live in an apartment in their community. This frees up supportive housing beds for folks who actually need them. So just that one thing makes a huge difference for those getting services from HASA. There are a lot of shared views and a lot of shared energy in terms of the things we need to do in New York City to make a genuine and positive difference and to eliminate some of the harsher elements that seemed designed to keep people from receiving benefits and support, which they both need and are eligible for. There is a willingness to have a back and forth with folks working within the HIV community and taking hints from them about where to go from here. I think the reason for having me at HRA is to have those conversations and to find ways to work together and effectively make a difference for people living with HIV. Are we heading to the larger goal of trying to end the epidemic in the city?

Absolutely. It looks as though the 2012 preliminary numbers from the Department of Health have new diagnoses below 3,000 per year for the first time in New York State. The state’s estimates for people with HIV with undetectable viral loads who are engaged in care are about half. Ending the epidemic is entirely doable. We know how to prevent HIV, so it’s just a matter of scaling up and doing all of those things statewide and targeting the most intensive services and the most intensive case management to the communities most at risk and where the need is greatest. The science is there. I think New York State, which has the biggest epidemic in the country, and

New York City, which comprises 80 percent of that epidemic, are already doing the right things toward ending the epidemic. It’s a matter of getting additional resources. We need to target the work in smarter ways to get the job done. Your testimony for the Older Americans Act (OA A) supported an effort to include HIV-positive and LGBT people as those with greater social needs. Can you explain how this would benefit people around the country, but also in New York?

Last September, there was a hearing at the U.S. Senate Aging Committee, and I was invited to testify along with Ronald Valdiserri from the Department of Health and Human Services and a couple of

there, but they are operating off the old set of priorities. There are a couple of billion dollars annually that Congress puts toward the OAA. It mostly gets funneled to countybased area agencies on aging in all 50 states. A chunk of that money goes for food, but it also goes for other services. In relative terms per capita, it’s not a lot of money and most programs don’t get a lot of money per person being served. The agencies pay attention to the populations and the needs that are outlined in the OAA. If you’re not listed in the OAA, then most programs are not going to do anything in particular for you. This is an effort to get the programs for senior services to specifically pay attention and be compelled to report on what

“We need to target the work in smarter ways to get the job done.” others. The United Nations currently only has an official count and data collection on people with HIV around the globe up to age 49. Our argument has been that if you really intend to get the goal of 15 million on treatment by 2015 then by definition those 15 million people are going to live. They are going to get old. We already know that older people with HIV have more health conditions than that of their peers and that those conditions are worse and happen sooner. I think what it means in practice and certainly for the HRA is that people need support and services with regard to their other health conditions, some of which have implications for their employability, physical functioning, etc. The OAA actually expired a year before the Ryan White CARE Act did. But like Ryan White, so long as Congress funds it, it still operates. There is money

they are doing for populations with the greatest needs. We want to see LGBT folks and HIV-positive folks included in the OAA list. How did you get into HIV/AIDS work, and what keeps you motivated now?

I started as a nurse, and I worked principally—but not exclusively—in mental health. I care about these issues, and I care about social justice and equality. Government has a role to help those who need something in a communal way. I saw that as a kid. I saw my folks, who were not well off, giving to other folks who had less. I’m also a gay man of a certain age who was a nurse at the beginning of the epidemic. I knew lots of people who died, so it matters to me. Now, I need to keep engaging in what matters to me in new and different ways. I think it’s my opportunity to grow and to find new ways to make a difference. ■

poz.com SEPTEMBER 2014 POZ 13

POZ PLANET

BY TRENTON STRAUBE

DISCO REALNESS A new musical channels the life of dance legend Sylvester.

One Fabulous Life (A Brief Bio) Born Sylvester James Jr. in 1947 in Watts, Los Angeles • sang in gospel choirs • joined San Francisco psychedelic drag troupe The Cockettes • released two albums that flopped • often recorded with Two Tons e O’ Fun, a.k.a. The Weather Girls • enjoyed his first major hit “You Make as Me Feel (Mighty Real)” in 1978 • recorded several other albums • was openly gay and defied gender norms • headlined one of the first AIDS DS complications fundraisers (with Joan Rivers and Charles Nelson Reilly) • died of AIDS in 1988 • was inducted into the Dance Music Hall of Fame in 2005

One Virus, Two Memoirs, Endless Insights

Young-adult books thrive on fastpaced narratives and crisp, clear writing. Paige Rawl’s riveting memoir, Positive, delivers the goods and much, much more. Born with HIV, the Indiana native always considered herself a normal girl, interested in beauty pageants, cute boys and cheerleading. A popular go-getter, she didn’t expect anything to change when, in sixth grade, she told a friend about her HIV status. Wrong! The resulting bullying led to stress-induced seizures, a lawsuit against her school and, finally, a suicide attempt. But there’s a happy ending. Today, she’s an empowered advocate against bullying who just wrapped up her freshman year of college and stars in Andrew Jenks’s upcoming HIV documentary. And for those of you jaded about the AIDS Walk, wait till you experience it through the eyes of this teenage girl. Far from the young-adult world, we w encounter The Nearness of Others by David Caron, a professor of French F Fr and women’s studies at the University U of Michigan who tested positive po in post-September 11 New York Yo City. Instead of traditional narrative, ra he offers thematic essays, provocative pr vignettes and academic ruminations. ru By invoking Barbara Stanwyck, Nazi Germany and our sense of tactfulness, Caron shows us new ways y to think about life with HIV.

(WAYNE) COURTESY OF ANTHONYKEN LLC; (T-SHIRT) JENNIFER MORTON

Like most everyone on the planet, Anthony Wayne and Kendrell Bowman were familiar with Sylvester’s hits “You Make Me Feel (Mighty Real)” and “Do Ya Wanna Funk.” But after the couple watched a 2010 Unsung documentary about the disco queen, who died of AIDS complications in 1988, they were so moved that they created a concert of his music. The show was a hit. It didn’t hurt that Wayne is an accomplished Broadway star (recently in Pippin and Anything Goes) and Bowman is a celebrity stylist (it takes a professional to re-create Sylvester’s genderbending looks). Now, nearly three years later, an expanded version of Anthony Wayne as Sylvester, the Queen of Disco the show—Mighty Real: A Fabulous part of the show’s proceeds will go to her Sylvester Musical—is playing September 5 D.I.V.A. (Divinely Inspired Victoriously through October 5 in New York City, with Anointed) Foundation, which she started plans to move to a bigger house soon. in honor of friends lost to the virus. “It’s like a disco party that tells a story Like Sylvester, the musical transcends through his music and his words,” says boundaries. “It’s not a gay show, it’s not a Wayne, who wrote the concert musical. black show, it’s not a disco show,” Wayne “We tell not just of his dying of HIV but also says. “It’s a show of feel-good energy.” about his partner and how it was during that And it’s inspirational. “It’s about knowing time. But even in 2014, people don’t like to you can persevere through anything, just talk about HIV, especially in the Africanlike Sylvester did,” Bowman adds. “There American community, so here is a chance to are pictures of him going to a Pride parade bring awareness through Sylvester’s story.” in a wheelchair, just showing people that To that end, Wayne and Bowman used you shouldn’t be ashamed to live your life Twitter to reach out to celebrity activist to the fullest.” That’s keeping it mighty real. Sheryl Lee Ralph, who is now co-producing;

Three Wins in Iowa Against HIV Criminalization All eyes have been on Iowa. More than 170 people representing 27 states attended the nation’s first HIV Is Not a Crime conference, held this summer in Grinnell, Iowa. “The energy was incredible,” recalls Eric Evans, an advocate from Shreveport, Louisiana. “And everyone there was striving toward a common goal: to change discriminatory HIV laws.” Attendees got a few bolts of optimism: Iowa’s governor signed legislation revising the state’s HIV laws, and the high court overturned the conviction of Nick Rhoades, an HIV-positive man who was originally sentenced to 25 years in prison after he had sex with another man (Rhoades was undetectable, they used Autographs of a condom, and HIV was not transmitted). At the conference, both Rhoades and attendees at the Donald Bogardus—another man convicted under Iowa’s old HIV laws—had their first HIV Is Not a Crime conference GPS ankle monitors removed in front of cheering crowds.

18 POZ SEPTEMBER 2014 poz.com

Hot Dates / September 18: National HIV/AIDS and Aging Awareness Day /

BOOM!ing in the Bronx

(BOOM!HEALTH CENTER) COURTESY OF BOOM!HEALTH/BRIAN BAER, ARCHITECT; (TALK) COURTESY OF CDC; (CONDOM, POLICE LINE) THINKSTOCK

Business isn’t the only thing expanding after two HIV and harm reduction services join forces. It’s been a year since CitiWide Harm Reduction merged with Bronx AIDS Services. Today, the new organization—titled BOOM!Health—still battles HIV and drug use, but as the name implies, these issues no longer get top billing. “AIDS and harm reduction are part of our history and our core,” says Robert Cordero, the group’s president and chief program officer, “but we give equal weight to the other problems we are dealing with in the Bronx—poverty, access to medical care, overdoses, diabetes and hepatitis C.” In other words, BOOM!Health focuses less on specific medical conditions, like HIV, and more on the larger issues fueling them, like homelessness and injection drug use. To that end, BOOM!Health offers a menu of services, including onsite medical care, case managers to help with paperwork, communal meals through the Momentum Project, and a full-scale pharmacy (which is important since a few Bronx pharmacists were busted for crooked practices). As Cordero puts it: “It’s really a holistic approach.”

A wellness center in the South Bronx is slated to open early next year. It’ll feature a BOOM!Cafe and youth drop-in center.

Adding to its current locations, BOOM!Health began construction on a five-story wellness center in the South Bronx, slated to open in January. It’ll feature an LGBT and youth drop-in center plus a BOOM!Cafe and culture center that’ll be operated by the youth as part of a job training program. “These are the same kids,” Cordero says, “who end up on Christopher Street [in Manhattan] getting themselves into challenging situations because they don’t have any place in the

Bronx to socialize or stay safe and learn to become healthier. We’re trying to check this at its core.” BOOM!Health’s successful merger has Cordero urging other organizations and nonprofits to explore similar partnerships. His advice? Look for a group that complements but doesn’t duplicate your work and funding stream; check your egos at the door; and don’t wait until you are in crisis mode. And we think a snazzy new name always helps!

CDC Starts Talking With Gay Men Men who have sex with men (MSM) account for two-thirds of new HIV cases each year, despite comprising only 2 percent of the U.S. population. So the Centers for Disease Control and Prevention’s latest HIV prevention campaign—“Start Talking. Stop HIV.”—is much needed. Its videos, posters and behind-thescenes footage feature 37 gay and bisexual men talking about how they communicate with their sexual partners about HIV. Considering that previous CDC campaigns largely ignored the romantic and sexual lives of gay men, “Start Talking” makes for a great conversation starter. Does it go far enough? Not even close, say ACT UP New York and its allies. This summer, they released The Atlanta Principles, a series of proposed actions for the CDC’s prevention efforts. A few examples: Recommend more frequent testing, promote pre- and post-exposure prophylaxis (PrEP and PEP), and adopt messaging that deals frankly with sex.

NYPD CHANGES CONDOM POLICY

The New York City Police Department announced it would no longer confiscate condoms as evidence in cases involving prostitution, prostitution in a school zone, and loitering for the purposes of prostitution. Advocates praised this step—it can encourage safer sex—but as the Access to Condoms Coalition notes, police can still use the possession of condoms to justify an arrest, and they can still confiscate condoms as evidence in human trafficking cases. Lambda Legal adds: “The practice disproportionately affects transgender women, who experience such a high rate of false targeting by police as sex workers in New York City that it was the subject of a 2005 campaign by Amnesty International.” State lawmakers have introduced a bill to close loopholes in the NYPD policy change.

September September27: 27:National NationalGay GayMen’s Men’sHIV/AIDS HIV/AIDSAwareness AwarenessDay Day

poz.com SEPTEMBER 2014 POZ 19

POZ PLANET

BY TRENTON STRAUBE

HIP-HOP, HOOPS & HIV When Dakota Basinger got kicked out of a local basketball game because of his HIV, he made the news. That’s only part of his story.

21-year-old Basinger lives in Florida.

That was just before the basketball incident. Did the guys on your team know your status? Yes, and they supported me 100 percent. I have been open about it from day one. I feel that there is no reason to hide it.

When did you learn you have HIV? March 28, 2014. I took a home test. I was in the bathroom and saw the second line showing up. I was basically numb. My mom was flipping out. Later that night I fell apart and even felt suicidal. One of my close friends came over, and we prayed. I felt better. I started to feel that God was going to use me for his purpose.

The city quickly admitted its mistake and said you could play again. Meanwhile, in some of your lyrics, you seem to struggle with being gay. How do you identify yourself? I am bisexual but more attracted to men. I’m also a Christian. I’m not going to lie. I’ve asked Jesus to take this away from me if this is not the way he made me.

me to use condoms. I always did—except this one time. I asked the person if they were clean, and they said yes. So it was a decision I will live with the rest of my life.

POZ STORIES: Kecia Johnson clearly remembers the events leading up to her HIV diagnosis. It was November 2006 in Houston, and she was under the weather. “I had the chills and did not feel like my normal self,” she recalls. “After visiting a friend, I took a shower, and after about three minutes everything went blank. I remember waking up in an ambulance.” Hospitalized nearly three weeks with severe pneumonia, she had no idea what was wrong. Then a doctor walked in and asked, “How have you been coping with your AIDS?” Fact is, she has been coping just fine, thank you. “I came out of the hospital not shedding any tears,” she says. “I vowed that I was going to educate the world on the importance of self-worth and selfeducation on the HIV/AIDS epidemic.” Johnson believes that a lack of selfesteem led to her HIV status: She had stayed with a boyfriend she suspected

20 POZ SEPTEMBER 2014 poz.com

What’s your outlook on life with HIV? Right now I’m concentrating on bringing HIV awareness to the community. I have some speaking engagements and a fundraiser. And I’m starting meds. My doc says I should be undetectable in about one month. So my prognosis is excellent.

Kecia Johnson

wasn’t faithful. “I knew something was wrong,” Johnson says, “but I continued to ignore the signs—I felt nothing could go wrong because I was in love.” Today, she is surviving and thriving in Los Angeles, where she’s using her skills and connections—she has worked in the music industry as a manager and brand specialist—to educate through music. She created her own company, Absolutely Sikning Inc., to empower those living with HIV and other illnesses, and she released a memoir, Dying To Be D.I.V.A. (Visit iamkeciaj.com for more info.) Johnson describes herself as “fabulous, fierce and aware.” And we’d have to agree. Who else would offer this optimistic outlook: “Everyone living with HIV/AIDS needs to know that we are on a special, select journey and we have been called to walk that life. Our walk just happens to be in the color red!”

To read more about Kecia Johnson and other POZ Stories, or to tell your own tale of empowerment, visit poz.com/stories.

(BASINGER)) COURTESY OF DAKOTA BASINGER; (JOHNSON) COURTESY OF KECIA JOHNSON

You write music and post your rap songs on Facebook and YouTube. “My Best Friend” recounts how a guy contracted HIV through sex work. How much is autobiographical? All of it! But I want to elaborate on the prostitution part. That was only for a two-month period in my life. I did not get HIV during that period. I made sure I used protection. And I was tested afterward and was negative. Let me just say that my mother taught

When did you write the song? I was in the shower one night, and I just had this feeling come over me not to go out. I went in my room and wrote “My Best Friend” in about 30 minutes. I felt that this needed to be the way for me to tell people about my status. I posted it on my Facebook page on April 4.

VOICES

THE BEST BLOGS AND OPINIONS FROM POZ.COM

Clockwise: Miguel wears a T-shirt of his heartbeat; San Juan; Aquin (left) visits before Miguel’s heart transplant; Cecilia Aldarondo; the cemetery where Miguel is buried.

LOST HISTORY

(LEFT AND RIGHT) PHOTOS COURTESY OF CECILIA ALDARONDO; (CENTER) STILLS FROM MEMORIES OF A PENITENT HEART

Cecilia Aldarondo excavates the forgotten past of her uncle, his long-lost partner and AIDS in the documentary Memories of a Penitent Heart. Below is an edited excerpt from her opinion piece titled “Witness to a Lost History.”

have one memory of my uncle Miguel. It comes from a surprise visit he made to my family in 1986, when I was 6 years old. He told me a racist joke, which I found very funny but knew not to repeat. He died a few months later, on Easter Sunday 1987. He was 31. My memories of Miguel’s funeral in Puerto Rico are much more vivid. It was my ﬁrst brush with death, and I found it very frightening to be surrounded by grieving adults. Even my fat macho grandpa had tears. However, what I don’t remember, because I didn’t know it at the time, was that my uncle’s lover, Robert, was sitting in the back of the church as my family sat up front. No one in my family mentioned his presence. I only found out years later, when I moved to New York and went looking for Robert. After two years of false leads and dead ends, I’d given Robert up for dead. Until Christmas Eve 2012, when a message showed up in my inbox. It seemed too good to be true. For days I was convinced it was a scam. But then I called. And the voice on the other end was very real, and very raw. But it didn’t belong to Robert, not exactly. The voice told me, “When Miguel died, Robert died also.” He asked me to call him “Father Aquin” because after Miguel died he found solace as a Franciscan friar.

For several years, I’ve been making a documentary, Memories of a Penitent Heart, which explores the conflicts that lingered after Miguel’s death. As I was growing up, people in the family whispered about certain things. About how Miguel, instead of dying of “cancer” as his mother Carmen told everyone, probably had AIDS. About how he was with a guy, Robert, for a long time before he died. About how Carmen had begged Miguel to see a priest as he was dying so that he could wash away the sins of his homosexuality, before it was too late. What they did not say was what truly interested me. When I flew out to California to meet Aquin for the first time, he handed me a cardboard box that he’d kept in a closet for 25 years. It had all the traces of his and Miguel’s relationship—snapshots, love letters, hospital documents, Miguel’s unfinished plays. It took nine hours to go through the box, as he told me all about his life with Miguel. When we were done, he handed it to me: “Take it,” he said. “I don’t want it anymore.” It’s hard to describe the responsibility I feel in receiving this box. In my mind, the box contains an untold history, the forgotten undercurrent of Miguel’s life. Take the obituary clipping that was in the box as an example. It names the surviving next of kin—parents, sister,

brother—but makes no mention of the man who was Miguel’s companion for over a decade. These documents have challenged my family’s version of events and offered a fuller texture to Miguel’s life as a gay man. It isn’t just Miguel’s history that has emerged in the telling, or even Aquin’s—it is the history of my uncle’s closest friends, a tight-knit community of people who’d witnessed him in sickness and in health, and who’d never really gotten the chance to grieve him as Miguel’s biological family had. I have also come to see my uncle not as a repentant struck through with the fear of God’s wrath, but as an anguished son and brother who felt caught between love for his family and a burning resentment at his lack of legitimacy among them. AIDS is one of the great horrors of the 20th century, and we as a nation have yet to fully comprehend our complicity, not only in the deaths of so many, but in the lack of proper mourning afforded to friends and lovers. If Aquin had 25 years of pent-up mourning inside of him, I can only imagine how many others might still be carrying the same burden. And while it may be too late to give my uncle the death he deserved, I can only hope that I can do my part to remember his life in all its complexity.

poz.com SEPTEMBER 2014 POZ 21

CARE AND TREATMENT

BY BENJAMIN RYAN

CORAL REEFS YIELD ANTI-HIV PROTEINS

Researchers have uncovered a new class of proteins, found in coral reefs, that can block HIV from entering immune cells. The hope is that these natural elements might one day be used as an active agent in a microbicide. Investigators combed through thousands of potential agents in the National Cancer Institute’s (NCI) massive extract repository and honed their sites on proteins found in cnidarians—a phylum of animals including jellyfish, corals and anemones—that were extracted from coral off the northern coast of Australia. Testing the proteins against laboratory strains of HIV, the researchers found that cnidarians were highly potent, blocking HIV at minuscule concentrations— one-billionth of a gram. They worked by binding to the virus and preventing it from fusing with the CD4 membrane. The next trick is to manufacture cnidarian proteins. “You can’t go stripping the coral reefs of this,” says researcher Barry O’Keef, PhD, an associate scientist at the Center for Cancer Research at the NCI. So his lab is attempting to genetically manipulate both E. coli and tobacco into producing the protein.

22 POZ SEPTEMBER 2014 poz.com

By issuing new guidelines for the use of Truvada (emtricitabine/ tenofovir) as pre-exposure prophylaxis (PrEP), the Centers for Disease Control and Prevention (CDC) threw its full support behind the new tool in the HIV prevention arsenal. The CDC states that when used daily as directed PrEP can lower the risk of HIV infection by more than 90 percent, and that poor adherence to the therapy significantly diminishes this effect. The agency recommends Truvada for those at high risk of HIV, including: those in a relationship with an HIV-positive partner; men who don’t use condoms when having sex with men; men who have been diagnosed with a sexually transmitted infection in the past six months and who are not in a mutually monogamous relationship with an HIV-negative partner; heterosexuals who don’t always use condoms for sex with partners who are themselves at high risk for HIV; and anyone who, in the past six months, has shared equipment when injecting illicit drugs or who has been in an injection drug treatment program. While the CDC’s move was largely met with jubilation by HIV prevention advocates, the AIDS Healthcare Foundation’s president Michael Weinstein, who had already notoriously dubbed Truvada a “party drug,” maintained his fervent opposition to PrEP. Calling the guidelines’ release “a shameful chapter in the history of the CDC,” he told The New York Times that he believed that PrEP would discourage condom use and ultimately lead HIV incidence rates to escalate.

(CORAL) THINKSTOCK; (TRUVADA) GETTY IMAGES

CDC Gives Props to PrEP

COBICISTAT CHALLENGE TO NORVIR (RITONAVIR) A series of applications submitted to the U.S. Food and Drug Administration (FDA) in April have Gilead Sciences’ cobicistat poised to possibly nudge aside Norvir (ritonavir) as a “boosting agent” that raises the blood levels of two specific antiretrovirals (ARVs). So far, cobicistat has only been approved as a component of the fixed-dose combination treatment Stribild (elvitegravir/ tenofovir/emtricitabine/cobicistat). Now Gilead has requested specific approval for cobicistat’s use in combination with Bristol-Myers Squibb’s Reyataz (atazanavir) and also with Janssen’s Prezista (darunavir). Each of those two companies has filed its own application to the FDA for fixed-dose, combination tablets of its respective ARVs in combination with the boosting agent. Tim Horn, HIV project director at Treatment Action Group, says that while cobicistat doesn’t necessarily have a safety advantage over Norvir, the question remains whether the combination pills will be cheaper than Norvir when paired with Reyataz or Prezista as separate tablets. “Whether a somewhat simplified regimen—one with cobicstat that involves taking two pills once a day versus one with Norvair that involves taking three pills once a day—merits a higher price tag and, an increased financial burden to the health care system and HIV-positive people is seriously questionable,” Horn says.

The Lowdown on Low Vitamin D

BOTH IMAGES: THINKSTOCK

There is an apparent link between low vitamin D levels and a raised risk of both HIV disease progression and virologic failure among people who are beginning antiretroviral (ARV) treatment. Researchers examined a large cohort of HIV-positive people in an ARV trial and determined whether their vitamin D levels upon starting treatment played a role in negative health outcomes during the first two years of treatment. Low vitamin D was linked to a

2.13-fold increased risk of clinical disease progression and a 2.42-fold increased risk of virologic failure. Some evidence suggested that low vitamin D may also be linked to a worse CD4 response to ARVs, although there was not enough evidence to support this. According to the study’s lead author Amita Gupta, MD, MHS, an associate professor of infectious diseases at the Johns Hopkins Center for Global Health, the findings are not surprising, considering that “vitamin D is essentially a steroid hormone that has a lot of immunomodulatory properties.” However, the study results can’t be translated into a neat and easy prescription for supplements because there are too many unanswered questions. A next step is to research how various doses of vitamin D supplements may affect clinical outcomes among people with HIV.

COOKED UP CLAIMS ABOUT SOY SAUCE Soy sauce has become the latest supermarket item to contain the answer to HIV, according to a savory smorgasbord of erroneous reporting in the popular press. A key point the over-eager reporters missed is that the HIV-fighting molecule in question isn’t known to be in soy sauce at all; it’s only “related to flavor enhancers found in soy sauce,” according to the press release from the University of Missouri School of Medicine that spawned the media reports. The tall tale began in 2001 when the Japanese soy sauce manufacturer Yamasa, while searching for a flavor enhancer, synthesized a molecule called EFdA, which belongs to a family of compounds called nucleoside analogues. Eventually, lab research found that EFdA is a nucleoside reverse transcriptase inhibitor (NRTI), which is a class of HIV-fighting drugs under the nucleoside analogue umbrella. Not only that, but the molecule is highly effective at fighting HIV, in particular when the virus is resistant to Viread (tenofovir). Merck licensed EFdA two years ago and is mum except to say the molecule is not yet in Phase II trials. Stefan Sarafianos, PhD, an associate professor of molecular microbiology and immunology at the University of Missouri, acknowledged to POZ that the mistaken media reports could have resulted from the school’s original press release on his research; its misleading headline read: “Soy sauce molecule may unlock drug therapy for HIV patients.”

poz.com SEPTEMBER 2014 POZ 23

RESEARCH NOTES

PREVENTION

(URBAN HOUSING; SUN; LAB) THINKSTOCK; (SPERMS) ISTOCKPHOTO.COM/UGURHAN BETIN

Take the Fight to Hard-Hit Streets

In a new study examining how geographics affect the HIV epidemic, researchers created detailed maps of hard-hit minority neighborhoods in New York and Philadelphia. The maps illustrate that the residents of areas more heavily populated by blacks and Latinos are more likely to die of AIDS-related causes when compared with those who live in high-incidence neighborhoods that are more affluent and more populated by whites. The researchers theorize that this disparity is a result of a lack of access to testing, treatment and care services in the more minority-populated neighborhoods. Consequently, they argue that greater resources should be funneled into combatting HIV’s disproportionate impact on specific urban neighborhoods—notably those with high concentrations of minorities. Specifically they call for increased targeted social marketing campaigns advocating HIV testing and treatment.

TREATMENT

More Reasons to Start Treatment Early

Starting HIV treatment before CD4 cells drop too low reduces the risk of AIDS and HIV-related illnesses, according to the same large study, called HPTN 052, that proved early treatment cuts transmission risk by 96 percent. In the trial, 1,763 HIV-positive participants with CD4s between 350 and 550 were randomly selected to either start antiretrovirals immediately or to wait until their CD4s had either dropped to 250 or until the participants developed a symptomatic disease related to HIV. The study found that the early starters enjoyed a 36 percent reduced risk of an AIDSdefining illness and a 27 percent lowered risk of one or more of the following “primary outcomes”: death, an AIDS diagnosis, tuberculosis (TB), a severe bacterial infections, cardiovascular disease, serious liver disease, end-stage kidney disease, non-AIDS cancers or diabetes. However, the primary outcome benefit was not statistically significant, meaning it could have occurred by chance.

BY BENJAMIN RYAN

CURE

Transplant Drugs May Reduce HIV Reservoir Immunosuppressant drugs used to prevent rejection of transplanted organs may combat the HIV reservoir, the presence of which thwarts attempts to cure HIV with standard antiretrovirals (ARVs). Researchers studied how the transplant drug sirolimus (rapamycin) affected the disease state of 91 HIV-positive transplantees, who were followed for just over three years. The investigators found that those who took the drug had lower levels of HIV DNA in their blood, indicating a reduction of the reservoir. They theorized that the drug may attack the reservoir from various fronts: reducing the capacity of the long-lived memory CD4 cells, which make up much of the reservoir, to make new copies of themselves; enhancing HIV-specific CD8 cells’ ability to attack the virus and help clear the reservoir; and reducing CD4 activation, thus slowing the spread of HIV from infected cells.

CONCERNS

Virus in Semen of ‘Undetectable’ Men

Even when a man’s blood viral load is undetectable, he may have intermittently detectable levels of HIV in his semen, with fluctuations occurring in the course of only an hour. This does not necessarily mean, however, that the virus present is capable of transmitting to another person. Analyzing frozen sperm samples from 88 HIV-positive men who had an undetectable viral load and who had provided two samples within an hour if they could, the researchers detected HIV in at least one sample from 17 of the men, comprising 19 percent of the study group. These men produced 23 samples with detectable HIV, or 7.5 percent of all samples. The samples had a median viral load of 705; in 11 of them the read was over 1,000. Twelve out of 129 pairs of samples produced in under an hour, or 9 percent, had undetectable virus in one and detectable virus in the other.

poz.com SEPTEMBER 2014 POZ 29

THE POZ SURVEY SAYS

BY JENNIFER MORTON

State of Mind

According to the Substance Abuse and Mental Health Services Administration (SAMHSA), nearly one in five American adults experienced a diagnosable mental illness in 2012. People living with HIV may be more likely than the general population to develop mental disorders like depression or anxiety so itâ&#x20AC;&#x2122;s important to talk to your health care provider about your mental health issues. In a recent survey, POZ asked you about your mental health. Here are your responses.

HOW WOULD YOU RATE YOUR OVERALL HEALTH? EXCELLENT

Have you received treatment for your mental health issues?

POOR

18%

FAIR

GOOD

31%

YES

DID YOU HAVE MENTAL HEALTH ISSUES BEFORE YOUR HIV DIAGNOSIS?

38% YES 62% NO HAVE YOU HAD MENTAL HEALTH ISSUES AFTER YOUR HIV DIAGNOSIS?

24% 83% YES 17% NO

30% OF READERS SAY THAT THEIR MENTAL HEALTH ISSUES HAVE INTERFERED WITH THEIR HIV CARE AND TREATMENT.

(HEAD) THINKSTOCK

TIP: Be honest about your mental health issues when talking with your health care provider. Also, find the support you need.

Source: April/May 2014 Survey 30 POZ SEPTEMBER 2014 poz.com

He In gratitude for surviving 30 years living with HIV, Julie Lewis launched the 30/30 Project.

alth Care is a

Human Right THE 30/30 PROJECT SEEKS TO BRING AFFORDABLE ACCESS TO THOSE MOST IN NEED. BY ORIOL R. GUTIERREZ JR. PHOTOGRAPHY BY BILL WADMAN | STYLING BY SONOMI OBINATA

JULIE LEWIS IS THE MOTHER OF RYAN LEWIS, WHO IS HALF OF THE GRAMMY Award–winning hip-hop duo Macklemore & Ryan Lewis. She also is a 30-year survivor of HIV. In 1984, she contracted the virus from a blood transfusion that she needed after she lost a lot of blood during the delivery of Teresa, her ﬁ rst daughter. In 1990, Julie’s doctor told her that he was informed by a blood bank the person who had donated the blood had AIDS. By that time she also had given birth to Laura, her second daughter, and Ryan. Her husband, Scott, and their three children tested negative for HIV, but she tested positive. She was told she only had a few years to live. To mark 30 years of living with HIV, Julie launched the 30/30 Project with the support of her family. The project

aims to build 30 health centers around the world that will operate for at least 30 years for those who need it most. Construction for Change will build the centers, and groups such as Partners in Health will staff them. The phrase “Health care is a human right” has become the slogan of the project. In addition to HIV/AIDS care and treatment, the centers will screen and treat tuberculosis and malaria, as well as provide comprehensive health care.

poz.com JUNE 2013 POZ 33

The project already has raised more than $150,000 to build centers in Malawi and Kenya. To build on the success of its Indiegogo fundraiser, the 30/30 Project has partnered with the producers of Mothers and Sons, the Tony-nominated A IDS-themed play by esteemed playwright Terrence McNally. After each on-theroad performance, a collection will be held with proceeds going to the 30/30 Project. POZ caught up with Julie in New York City after she flew in from her home in Seattle to talk to the audience at the end of one of the final Broadway performances of Mothers and Sons. During her speech, she elaborated on the continuing partnership with the producers of the play and her perspective as a long-term HIV survivor. In our exclusive interview, Julie gives us more insights. What happened right after you were told that you might have HIV? We took our kids to get tested. They were 2, 4 and 6 years old. They took the test on a Thursday and the lab was closed that Friday, so we had to wait until Monday to get results. It was a really long weekend. Monday came and this was supposed to be Scott’s first day in a new job in Spokane, so we already had everything in a U-Haul truck. There we are in an empty house just staring at the phone on the wall, because we didn’t have cell phones back then. Finally the phone rang, and I could tell right away the nurse had a cheerful voice. She told us that everyone in my family was fine, except for me. Literally within hours we got into our car and moved. That was intense. At the time, I knew enough to know that AZT was the only HIV drug. I was so sick when my doctor put me on it. I don’t think I would’ve made it through AZT without the support of my family, especially my brother. I took it faithfully, even though it really made me sick. Eventually my body got more used to it. Scott and I decided to tell barely anybody because our kids were so little. We read about all the discrimination families faced, and we were new in town. I did get to know a few other women living with HIV in Spokane by getting into a support group for women. There weren’t very many of us, but we were a strong group. In the summer of 1994 we told our kids. We told them individually because my 10-year-old Teresa would of course react differently than my 6-year-old Ryan in understanding. At that point, it became public information. Whenever it seemed interesting to him, Ryan just shared it. He told his second grade class and even a lady at a grocery store. So, that was kind of fun. I mean it was kind of funny in a

way. It was great that he didn’t see why not. He wasn’t afraid of people’s reactions. He was trying to figure it out in his own mind and he wanted input, so he would tell people. How did you cope with being diagnosed? I joined a speakers’ bureau and pretty much went to most of the high schools and colleges in Spokane. I was in the bureau from the fall of 1994 until we moved to Seattle in 2003. It had about 15 to 20 people in it at any time. I would say about 80 percent of those people have died, especially those from the early ’90s. As friends from the bureau died, I started not to socialize as much with new speakers to protect myself from losing more good friends. Plus, I went to work for the Spokane Regional Health District. The job was to manage the speakers’ bureau, so it became more of a professional relationship with the speakers. In 1998 I went back to college to get a health educator degree. I already had a degree as a science teacher, but I went back so I could do public health education. I worked as a health educator in bloodborne pathogens, so I did professional trainings not only for HIV/AIDS but also for hepatitis C. I worked in HIV prevention in all of the juvenile systems, so I did all of the testing of the kids in the drug treatment centers that the court ordered. I taught classes everywhere, from high schools to universities, as well as the pharmacy school at Washington State University. I did a lot of them in high school assemblies. As an aside, when I became a health educator—especially in those years when medications were still being developed, then protease inhibitors came out and combination therapy started—POZ was a resource for me. It was great seeing the advocacy and seeing inspirational people. POZ broadened my knowledge of HIV/AIDS. How did you first get the idea for 30/30? My family had been talking about wanting to do something that was a pay-it-forward project to share our good fortune, but I have a specific moment. Construction for Change had built a hospital in India. I saw a slideshow about how it was built. I hadn’t realized until then that women had built this hospital. Here are these women in their saris with tools in their hands and helmets on their heads building a hospital. The reason was the nearest hospital was several hours away. Despite these women having cars, their children were dying in transport to that hospital. I realized watching the slideshow if they can do that then we can do more. Our first health center, which is in Malawi and is being staffed by Partners in Health, should be operational in January 2015. We have funding for a number of other clinics, but we are still vetting partner organizations. It takes a while. For any international construction project, it takes about a year from the idea to actually breaking ground. When it comes to international development, I like to point out the model that Construction for

“WE TOOK OUR KIDS TO GET TESTED. IT WAS A REALLY LONG WEEKEND.” 34 POZ SEPTEMBER 2014 poz.com

“I’M HAPPY TO STILL BE ALIVE, ESPECIALLY WHEN I’VE SEEN ALL THE THINGS IN MY LIFE THAT I MAY HAVE MISSED.” Change uses. It isn’t an organization that goes in with a bunch of people to just do their thing. Construction for Change has a community tell them their needs. The group wants to see great work being done for a long time. We come in with one or two people to hire a local workforce and get local supplies to build a building, then we give it back to that community and we leave. We empower communities by building buildings. We want to leave as little of our own footprint there, other than the building. I hope that through 30/30 there will be a greater effort from others to bring health care to those most in need for HIV/AIDS, but also for malaria and tuberculosis, as well as many additional diseases that people don’t need to be dying from. We actually do believe that health care is a human right. As for building health centers in the United States, to be honest it’s way more expensive to build domestically. I would like to brainstorm ways to partner with local AIDS service organizations and related foundations. That’s on my heart too, of course. How does it feel to be a long-term survivor? I’m happy to still be alive, especially when I’ve seen all the things in my life that I may have missed. Everything from my kids getting married to Ryan’s career taking off and him living his dream to having two new grandsons this year and even being there for the delivery of one of them. My life has been rich for years.

I don’t have a big fear of dying; I have a deep faith. However, when it comes to actually celebrating survival, it is just so sad. It reminds me of people who aren’t here, who were so young, who left children without parents who were raised by their grandparents or friends. I do feel guilty sometimes that I lived. It’s bittersweet. ■ Go to 3030project.org for more information. For the latest updates, go to facebook.com/3030project and twitter.com/3030project.

poz.com SEPTEMBER 2014 POZ 35

Nancy Asha Molock hasnâ&#x20AC;&#x2122;t let HIV stop her from enjoying her passions, which include gardening.

Midlife OLDER PEOPLE NEWLY DIAGNOSED WITH HIV CAN STAY RESILIENT. BY TIM MURPHY

COLLIN M. LENTON

NANCY ASHA MOLOCK DID THE RIGHT THING. WHEN MOLOCK—A STRIKING, bright-smiled 63-year-old retired Philadelphia schoolteacher—started dating again in 2000 after divorce ended a 17-year marriage that produced two kids, she’d heard the reports that sexually active midlife folks were susceptible to HIV and should wear condoms with partners of unknown status. So when she started dating a fellow her age—whom she became engaged to and who, she often noticed, had a chronic cough—she insisted at first on condoms. “I said to him, It’s going to be condoms until you have an HIV test,” she recalls. “But he kept putting it off. He said he’d never injected drugs or been with men, and I believed him. He also said he didn’t like how condoms felt. One night,” she sighs, “I caved to affection. And once you allow them not to wear a condom the fi rst time, that’s it.” Her fiancé’s health further declined. “I found him shivering in front of the computer one morning and took him to the ER.” Sure enough, her fiancé had AIDS. Later, he fi nally admitted to having been with sex workers, “and I think there’s more he’s never told me,” Molock says. When she tested herself shortly thereafter and found out she was HIV positive, she says she wasn’t surprised. “My doctor said to

me, ‘I have some bad news—you have HIV,’” she recalls, “and I said, ‘Okay, what’s the next step?’ My doctor said, ‘Did you hear what I just said?’ And I said, ‘Yes I did, so what’s the next step?’” Molock still married that man, only to divorce him a few years later, even as she faced coping and living with HIV at 50, an age at which many people (often mistakenly) consider themselves in the clear for sexually transmitted infections. Her story is not an isolated one. According to estimates from the Centers for Disease Control and Prevention, in 2011, the last year for which data is available, nearly 20,000 Americans older than 40 were diagnosed with HIV. That’s 40 percent of the total (around 49,000) for that year. And 16 percent of

poz.com SEPTEMBER 2014 POZ 37

“WE MAY FEEL MORE ISOLATED. PEOPLE ARE JUDGING US BECAUSE WE’RE OLDER.”

those diagnoses were in folks over age 50. It’s hard to know how many of those diagnoses reflected recent versus longterm infections. But in 2011, folks ages 40 to 49 made up the highest percentage of those diagnosed with advanced AIDS, suggesting that some folks in midlife go years with HIV before diagnosis. “The older people get, the later they get tested from their point of infection,” says Mark Brennan-Ing, PhD, research director at AIDS Community Research Initiative of America (ACRIA), which specializes in HIV/AIDS in older Americans. “A lot of people over 50 don’t talk to their doctors about sex.” But for those who fi nd out they are HIV positive, says Brennan-Ing, “It can be really distressing because HIV infection is not something we really associate with mid- and late-life. There’s an off-time aspect to it.” And Brennan-Ing isn’t just talking about straight women, who might seem less aware than gay men that they’ve been exposed to HIV. He relates the story of a gay man over 50 who worked in the HIV/AIDS field, who did not know that his longtime partner was having unsafe sex outside their relationship. “That man was diagnosed with HIV and felt deeply betrayed by his partner, and the relationship ended as a result,” says Brennan-Ing. “And because this man had been working in the HIV field so long, he felt stupid. A lot of older gay men who are infected feel that way, and that shame can trigger major depression.” Of course, some older gay men get HIV not unwittingly in a relationship but because, after years of practicing safe sex—often through the worst years of the epidemic— they simply break down, no longer willing or able to use condoms consistently. Rik Gillette, 63, a data manager for AIDS Services Foundation in Orange County, California, credits having lived a closeted, hetero-married life for keeping him HIV negative in the 1980s and ’90s. But he came out to his wife shortly before she died in 2000, after which he lived the sexually unfettered gay life he’d long desired. In Dallas, he and his roommate would throw festive gay pool parties that often became sex bashes. “In the heat of the moment, sometimes condoms were not used,” he recalls. “It didn’t even cross my mind—I was just into the fun.” In early 2009, living in Orange County, he had a case of staph infection, which landed him in the emergency room, where he was diagnosed with HIV. “I wasn’t totally shocked, but it was a surprise,” he says, “because I’d tested HIV negative before leaving Dallas and played safe in California, so it must have happened right before I left. I have a good idea who gave it to me—someone I was more intimate with than most.” Gillette says he doesn’t regret the long-awaited abandon of those pool parties—“just the fact that I hadn’t been more cautious.” As for his HIV diagnosis, “I took it in stride,” he says. “I didn’t see it as a death sentence.” Still, he admits, “I wasn’t knowledgeable about the disease at all, how it was going to affect my social life, having

38 POZ SEPTEMBER 2014 poz.com

to disclose my status to guys. It was a whole new comingout process for me.” Gillette lost the job he had at the time, depleted his savings and ended up nearly homeless until AIDS Services Foundation helped him ﬁ nd transitional housing, let him volunteer there and, thanks to his tech background, eventually hired him. Since then, he’s been doing OK, attending support groups, though he admits, “I’m having issues with companionship at my age—I miss having someone I can cuddle with on the sofa and watch TV.” He doesn’t go on dating websites or to gay bars, though he does ﬁ nd camaraderie singing in a gay men’s chorus. Then there’s the occasional judgment he gets for contracting HIV when he “should have known better.” Says Gillette: “A couple people in my support group have said to me, ‘Why would you make a conscious decision not to use protection?’ They didn’t quite call me stupid, but that’s how I interpreted it. All I can say is, I wanted to experience the joy of the moment. I’m a heavy guy, and the thought that anyone wanted to have sex with me was encouraging.” A comparable story is told by San Francisco training management exec Jerry Ervin, diagnosed at age 45 in 2009. “I’d stayed HIV negative so long I thought I was Superman and started having condom-free sex,” he says. He points out that HIV hasn’t changed his life much. “I still work and do triathlons.” But he admits he feels “embarrassment” at having gotten HIV later in life. Also, he only dates HIV-positive guys now, unlike before, fearful of giving someone HIV. Data proving that a positive person on meds with undetectable virus, such as himself, essentially cannot transmit HIV, “hasn’t allayed my fears.” Plus, he says, “I feel inferior with someone HIV-negative, like I’m in a lesser category.” He’s been dating an HIV-positive guy the past seven months, enjoying condom-free sex. “We can talk about our meds together. We’re in the same boat.” Some older folks experience depression and anxiety after an HIV diagnosis, says Brennan-Ing, adding that ACRIA research has uncovered four key factors that help people stay resilient and move forward. They are, he says: 1. A social support network, or “having people there you can turn to,” whether they are family and friends or folks you meet in groups at an HIV/AIDS agency or a senior center. 2. Spiritual or religious beliefs of some kind. “It helps people make sense out of things that happen to them and move forward,” he says. Plus, he notes, organized spirituality often has a social component. 3. A sense of self-esteem, or what Brennan-Ing calls “environmental mastery,” meaning the sense that one knows how to take steps to make positive change and get one’s needs met.

JOSEPH ESCAMILLA

4. A sense of purpose and meaning. “Feeling like you have a reason for existence is very protective against stigma and loneliness.” That’s been a huge help for Debra Glover, a Columbus, Georgia, HIV activist who was diagnosed with HIV at age 50 in 2001, having gotten the virus from her high-school sweetheart. “The hardest thing was telling my daughter, who was in high school at the time,” she recalls. “But I prayed on it, and my entire family ended up being supportive.” Now she works to guide people and their families through the HIV diagnosis process, and to educate her region on HIV risk factors and prevention methods. “We’re a small town without a lot of support around this, so I try to be a voice for the silent.” So does Conneil “Jay” Gavin, 53, of New Brunswick, New Jersey. Diagnosed with HIV in 2006, Gavin attributes his infection to not using condoms properly—“we used petroleum jelly instead of water-based lubricant”—with a former boyfriend who didn’t tell him he was HIV positive. Gavin says that, compared with his Marfan syndrome (a disorder of the connective tissue), his HIV diagnosis has not been that hard to live with, mostly because of the fact that he has the support of his family as well as his church congregation, whom he disclosed his status to. Now he teaches safe-sex workshops with Hyacinth AIDS Foundation. “I want to demolish HIV stigma!” he says boldly. But even

he has not escaped it completely; “I have an uncle who cursed me out for leaving my razor in his bathroom,” he admits. And as for Nancy Asha Molock? In the decade-plus since her HIV diagnosis, she has thrived, retiring from school teaching to travel widely throughout Africa and get involved with the national Positive Women’s Network, whose ﬁ rst leadership summit occurs this September in Florida. “The network has opened my eyes to a lot of the injustice out there and made me realize things are bigger than just me and what I’m going through,” she says. She’s also trying to start a Philly support group speciﬁcally for HIV-positive folks over 50. “We have our own issues,” she says. “We may feel more isolated, we’re not going out to clubs anymore, we may feel that people are judging us because we’re older and ‘should have known better,’ and we may be taking care of children or grandchildren.” Yes, she admits, she has struggled with dating because of her HIV. “I tend to back off more, and I’ve been rejected over being positive. I have to turn it around and say it’s their loss. Because I think I’m a good person. I have a lot to offer. “I had a good life before I was positive, and I’m going to continue to,” she asserts. “It’s just a virus. I can’t let it stop me. I’m going to get everything I can get out of life.” ■ Although he regrets not being more cautious, Rik Gillette took HIV in stride.

poz.com SEPTEMBER 2014 POZ 39

A NEW DOCUMENTARY EXPLORES THE ROLE OF WOMEN IN THE HIV/AIDS PANDEMIC. BY CASEY HALTER

WENTY YEARS, TWO CONTINENTS, THREE generations of women and an entire untold history. That’s the premise of Nothing Without Us: The Women Who Will End AIDS, a new documentary in the making that’s about the female perspective of the HIV/AIDS pandemic. Harriet Hirshorn, director and co-producer of Women at the Reel—the New York City–based production company of four females putting the film together—has been working for nearly 10 years filming about the virus both in the United States and globally. Throughout her journeys, Hirshorn has compiled an array of footage from unknown all-stars. Hirshorn and Rolake Odetoyinbo—a Nigerian treatment access and women’s rights activist, as well as one of four main voices in the film—give us an in-depth look at their project.

In Burundi, an HIVpositive mother and her daughter build awareness for the prevention of motherto-child transmission.

poz.com JUNE 2013 POZ 45

46 POZ SEPTEMBER 2014 poz.com

her work. In the past year, Hirshorn has looked back at her activism and looked ahead at the women who help shape the movement today. Now she has a fi lm spanning continents and highlighting the many different female leaders engaged in the global HIV/AIDS fight. “There are four very strong lead characters—Odetoyinbo, Gina Brown, Mary Bowman and Jeanne Gapiya,” says Hirshorn. “Then there’s a secondary rung of HIV experts: Naina Khanna, Dazon Dixon Diallo, Pat Knowles and Terry McGovern. These women have been and still are key to ending HIV/AIDS, and I don’t think that any fi lm has shown that so far.” Hirshorn and her team have combined archival footage from ACT UP, as well as African and U.S. television to supplement her in-person documentation. The fi lm’s focus runs from the late 1980s up to the present day and spotlights Alabama, New Orleans and Baton Rouge, as well as Nigeria and Burundi. “When we had initially described the project as including the stories of African women and American women, I think people were sort of like, ‘Wow, how are you going to make this geography thing work?’ When we screened our fi rst selects, no one had any questions about that,” she says. “It was really easy to see the commonalities.” Odetoyinbo agrees. “The drivers of HIV in AfricanAmerican communities are very similar to what we have in sub-Saharan Africa. The stigma, fear and myths.” “It’s a corrective lens,” Hirshorn says of the documentary. “We’re trying to restore women to the narrative of the history of AIDS activism. The history is being written now, and women are being written out of it.” “ONE MAIN TOPIC THAT THIS FILM WILL ADDRESS IS that the crisis isn’t over,” Hirshorn says. “More than half of the people living with this illness are women—and women figure very prominently in the response to this disease.” Odetoyinbo says that this fi lm is different from other

ALL IMAGES: COURTESY NOTHING WITHOUT US

“FOR A FEW YEARS I KIN KIND OF TAGGED ALONG various activist projects and would follow them wherever they went,” says Hirshorn about her start 25 years ago as a feminist HIV/AIDS documentarian. “I would just videotape as research to try learning more myself.” The producer and fi lmmaker was one of ACT UP New York’s fi rst female members, originally joining the group in 1989 to help get women living with HIV/AIDS covered under the same disability benefits as men. She then went on to cover women’s and lesbian rights in France. Through the fluidity of her work and the movements, she ended up in Africa during the early 2000s, when the continent’s fight to acquire access to modern antiretroviral treatment had started gearing up. While shooting in Nigeria back in 2004, Hirshorn crossed paths with Odetoyinbo, an HIV-positive mother. Since her diagnosis, Odetoyinbo has become the national coordinator of Treatment Action Movement (TAM), a coalition of treatment activists in Nigeria, as well as the executive director of Positive Action for Treatment Access (PATA), which provides medications and services to her community. Odetoyinbo doesn’t take no for an answer, which illustrates just how strong and powerful women’s voices can be to the international movement. “I don’t know how much of the 10 years of footage of me she will use,” Odetoyinbo says. “She has been with me in Kenya, India, France, the United States and I can’t even remember where else. She’s followed me in Nigeria from Lagos to Abuja, and she was there with her camera when my son was born.” In fact, Hirshorn originally planned to make a documentary on Odetoyinbo’s inspiring story. “I didn’t want to play into the whole defeatist, ‘We’re losing an entire continent’ sort of thinking. Instead, I wanted to support people who are positive and are actually doing something,” Hirshorn says. However, when funding fell through, the fi lmmaker found herself back in the United States seeking a new direction for

From left to right: recent fi lms about HIV/AIDS Kholitswa fights because it tells the story of stigma in South ordinary women without Africa; Pat Nalls speaks out in making them larger than Washington, DC; life. “It also dares to portray Joyce Turner Keller us with our fears, cares educates in Baton Rouge; Mary and everyday struggles,” Patierno and she says. “If the women Nadia Hallgreen are seen as doing anything film in Burundi; and Mary Bowman extraordinary, that will be performs in DC. a decision the audience will reach independently.” Currently, Hirshorn and her documentary team are searching for one more character for the fi lm. “We want to include an HIV-positive girl from Kenya, South Africa or Burundi to talk about what it’s like to have been born with HIV,” she says. “They live with the secret and stigma of HIV, but they don’t necessarily live with the health challenges,” especially when compared with the previous generation. The fi lm also will touch on the health disparities that exist between the continents and contribute to the number of kids born with HIV, despite scientific advancements to prevent it. “The United States has virtually eliminated parent-tochild transmission because there is national antenatal health coverage,” Odetoyinbo says. “This makes it possible to provide early testing services for all U.S. pregnant women and treat those who are infected. In my country, we are able to reach less than 20 percent of pregnant women with HIV testing. Only 60 percent of women attend antenatal clinics, and less than 40 percent of deliveries are by trained birth attendants.” Covering all that ground is going to be a long road, Hirshorn says, and the fi lm is not even halfway shot. But by bringing together these voices, she is hoping to create a new tide of change in the movement. “This is a gender justice fi lm as much as it is an AIDS fi lm,” she says. “It says, If women are not included in the solution, there will be no solution.”

“WHEN YOU SHOOT A DOCUMENTARY, THERE ARE a lot of surprises,” Hirshorn says. For one thing, there’s the money. “It was really hard to get funding for an ‘upbeat’ fi lm about AIDS in Africa,” she says, adding that such an outlook derailed her earlier fi lm about Odetoyinbo. “It wasn’t the perspective or image that people wanted to see.” Odetoyinbo agrees, saying the biggest barriers to her HIV/ AIDS work in Africa continue to be the “inadequate funding for women’s organizing and women-led organizations,” as well as “too few women at the helm of AIDS programs.” Hirshorn and her team plan to continue shooting the fi lm through the end of 2014, but they’re not sure whether the funding to complete it will come through. If it does, the fi lm could hit the global festival circuit by next year. Until then, Hirshorn and Odetoyinbo will continue shooting across the United States and Africa. The director’s ultimate goal when it’s done? “Hopefully, Nothing Without Us will bolster the work of women everywhere still fighting for their communities and their lives.” ■ Go to womanatthereel.com/the-film to help fund the documentary and to contribute your story.

poz.com SEPTEMBER 2014 POZ 47

HEROES

BY CASEY HALTER

Tez Anderson, a 55-year-old San Franciscan living with HIV since at least 1983, has been an AIDS activist for decades, including rallying in ACT UP Golden Gate in the 1990s. But five years ago, he had a mental breakdown. It was the culmination of two decades of alienating his friends, falling in and out of depression and completely ignoring his finances and his future. Looking back, Anderson realizes he was still stuck in AIDS survival mode—and it was driving him crazy. “Every time I took those pills,” he says, “I was reminded of those that I lost.” What Anderson didn’t realize at the time, however, was that he was not alone. Fast-forward to June 18, 2014, when more than 250 people showed up in solidarity for the first National HIV/AIDS Long-Term Survivors Awareness Day. Organized by Anderson’s new San Francisco grassroots support group, Let’s Kick ASS (AIDS Survivor Syndrome), the event helped bring awareness to the trauma and mental health issues faced by those who made it through the early years of the epidemic. “We want to end the isolation and help people imagine the future they never dreamed of,” says Anderson, who chose the date as a way to commemorate his fellow fighters; it marked the 33rd anniversary of the Centers for Disease Control and Prevention’s first report of what became known as AIDS. After a day of planting trees in San Francisco’s National AIDS Memorial Grove, attending survivor-themed talk shows, holding support programs for HIV-positive and HIV-negative advocates, and garnering more than 1,000 Facebook “likes” for the long-term survivors’ movement, Anderson knew he had started something serious. The vibe, he says, was reminiscent of the old ACT UP but with a modern feel. “People wanted to take action,” he recalls. In fact, the group’s next goal is to get “AIDS survivor syndrome,” which is similar to post-traumatic stress disorder (PTSD), on the mental health map. They want clinical studies and national insurance coverage. “If AIDS had happened mostly to straight white men, there would probably be AIDS museums in every city of America,” Anderson says. He has a point: So far, AIDS has claimed more American lives than both world wars. Let’s Kick ASS currently meets in San Francisco for monthly town halls, weekly coffee get-togethers and regular meditation classes. The group is considering opening new chapters in Houston and Portland, Oregon, and is reaching out to cities across the country. Go to letskickass.org for more information.

48 POZ SEPTEMBER 2014 poz.com

JEFF SINGER

Let’s Kick ASS

SURVEY 7

Do you read books about HIV/AIDS?

❑ Yes ❑ No 8

(skip to question 9)

What types of books do you read about HIV/AIDS? (Check all that apply.)

❑ Academic/research ❑ Biographies ❑ Essays ❑ Fiction ❑ History ❑ Memoirs ❑ Other (please specify): ___________________

POP WATCH Pop culture and mainstream media have the ability to inﬂuence the masses through the stories and information they relay. They can help educate and dispel myths about HIV/AIDS, but they can also reinforce negative stereotypes. POZ wants to know your opinions on how HIV/AIDS is portrayed in today’s pop culture and mass media. 1

❑ Yes ❑ No

What year were you born?__ __ __ __

Do you watch films about HIV/AIDS?

What is your gender?

Have you seen any of these recent documentaries about HIV/AIDS? (Check all that apply.)

❑ Male ❑ Female ❑ Transgender ❑ Other 14

THINKSTOCK

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):___________________

Have you seen any of these recent feature films about HIV/AIDS? (Check all that apply.)

Do you think having openly HIV-positive characters in film and television helps reduce HIV-related stigma?

❑ Yes ❑ No

What is your sexual orientation?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other

❑ Dallas Buyers Club ❑ The Normal Heart ❑ Test 6

How important do you think it is to have celebrities involved in HIV/AIDS awareness efforts?

❑ Very important ❑ Somewhat important ❑ Not important

Do you feel that you and your concerns about HIV/AIDS are adequately portrayed in pop culture?

❑ Fire in the Blood ❑ How to Survive a Plague ❑ United in Anger: A History of ACT UP ❑ When We Were Here 5

In general, how would you rate mainstream media’s recent coverage on HIV/AIDS?

❑ Mostly positive ❑ Mostly negative ❑ Equally positive and negative

❑ Yes ❑ No (skip to question 6) 4

How accurately do you think mainstream media covers the stories of people living with HIV/AIDS?

❑ Very accurately ❑ Somewhat accurately ❑ Not accurately

How important do you think it is to have people living with HIV/AIDS portrayed in pop culture?

❑ Very important ❑ Somewhat important ❑ Not important 2

What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #198, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424