POZ July/August 2014

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H E A L T H ,

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H I V

Fight for Your Rights Taking action against stigma and discrimination

Antonio Mu単oz

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POZ.COM 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 info and to submit a nomination.

Early deadline is August 8, 2014.

Fighting both stigma and discrimination requires a good offense and defense.

HIV CRIMINALIZATION WHAT YOU NEED TO KNOW

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42 DEFYING DISCRIMINATION A jury awarded Antonio Muñoz $500,000 for being fired. The legal tools to fight HIV-related discrimination are within reach. BY CASEY HALTER 48 STEMMING STIGMA From one-to-one discussions to awareness campaigns, each of us can fight the flames of negative and unfair beliefs about HIV. BY ROD MCCULLOM PLUS POZ’S HIV DRUG CHART Our quick reference chart compares available medication options.

5 FROM THE EDITOR Strong Enough

9 FEEDBACK

Your letters and comments

Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.

10 POZ Q+A

D

Tim Horn, HIV project director for the Treatment Action Group, explains why new guidelines include cost considerations.

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12 POZ PLANET

iSTAYHEALTHY Go to blogs.poz.com/istayhealthy or scan the QR code below with your mobile device to learn how you can better track your lab test results and meds, as well as set alerts to take your meds and more!

Remembering AIDS pioneers Michael Callen and Essex Hemphill • finger-pointing in Russia • undergrads study AIDS research • the house that Frankie Knuckles built • The Numbers • Carl Sciortino helms AIDS Action of Massachusetts • Ryan Lewis’s HIV-positive mom wants to build 30 health centers • fighting stigma by telling stories

21 VOICES

Aundaray Guess discusses his early struggles with HIV treatment adherence.

26 CARE AND TREATMENT

Hep C cure rates are the same for those with HIV • second baby possibly cured of HIV • promising research suggests longacting antiretrovirals may become a reality • the risk of transmitting HIV may be zero when undetectable • more gay men are getting tested for HIV, and more are taking antiretrovirals

39 RESEARCH NOTES

Woman controls HIV naturally • treatment as prevention has success in British Columbia • no sign of the virus after early start on antiretrovirals • dormant cells foil cure research

40 SURVEY SAYS

Staying on track with your HIV meds

52 POZ HEROES

Catherine Wyatt-Morley advocates for women living with HIV in the Deep South through her nonprofit organization.

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FROM THE EDITOR

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF

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Strong Enough

I

N THE 1990s, I GUARDED my HIV-positive status like a government agent. So it was a blow to my self-esteem back then when a friend told me about a conversation he overheard.

He heard another friend tell a guy I was interested in to be careful because I have HIV. That incident was a wake-up call.

I confronted the friend who betrayed my confidence. He apologized and we tried to move forward in the friendship, but it was never the same. He couldn’t grasp the size of his error. I couldn’t find a way to get him to understand. Not only did I find the strength to confront a friend, but I also eventually found the strength to end a friendship.

HIV stigma—and the discrimination that often results from those negative and unfair beliefs—challenges all of us living with the virus to find the strength to live our lives with dignity and hope. The good news is that we all can strive to find that strength.

The story of Antonio Muñoz is an excellent example. After being fired from his job at a hotel, he filed an HIV discrimination lawsuit against his former employer. A jury awarded him $500,000 as a result. His story is exemplary, but he’s far from being the only person to succeed against stigma.

Go to page 42 to read how Muñoz, Greg Daniels, Sarah Franke-Bowling and others fought back against illegal HIV discrimination. You can also review major milestones in the struggle against such discrimination and get tips on how to file your own lawsuit.

Although there are many ways to combat discrimination that results from stigma, to stem stigma itself seems more elusive. Much of the public remains uncomfortable with HIV-positive people, despite decades of education efforts. Some advocates even argue that stigma is worse today than ever.

Stigma messes with our heads and hearts, but it can harm much more than our health.

Taken too far, stigma can sometimes cause us to lose our income, housing, family and friends. Go to page 48 to read how each of us can help fight the flames of HIV stigma.

Despite persistent stigma and discrimination, much has changed in the treatment landcape over the years. I’m grateful, but I’m not above asking, “What have you done for me lately?” If I have to stay on treatment indefinitely (at least until there’s a cure!), I’d like to believe better medications are on the horizon.

Tim Horn, the former AIDSmeds editor-inchief and the new HIV project director of the Treatment Action Group, answers our questions on the HIV treatment pipeline and other treatment concerns. Go to page 10 for more.

By the way, that friend I confronted, I saw him again years later. He told me he had finally grasped the size of his error. Know hope.

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 JULY/AUGUST 2014 POZ 5

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.

results from the ongoing PARTNER study showed that no transmission took place between couples in which the HIV-positive partner had an undetectable viral load.

Would you rather have HIV or diabetes?

DIABETES VS. HIV

In a POZ Forums thread titled “I’d rather have HIV than diabetes” (April 16, 2014), forums member Delby posted a link to an article in The Spectator written by a London-based doctor who claimed that he would rather have diabetes than HIV. I’ve said [I’d prefer HIV, but I was] diagnosed with HIV in 2003. [If I were diagnosed pre-1996, when lifesaving meds came out], however, I would not have said it.

Watching friends and children diagnosed with diabetes caused me to consider HIV a lesser of disease evils.

Thank you for posting this.

(INSULIN PENS AND VIRUS) THINKSTOCK

EMERALDIZE

Keep in mind that when a medical doctor makes such a statement it’s parochial in the sense of clinical treatment, discounting the mental health aspects and stigma of each disease. Have you ever heard of someone’s family forcing a diabetic patient to eat off paper plates and disposable plastic forks when visiting their home?

I still hear such stories in support groups for people with HIV, even in 2014.

It is true that with some people and type 2 diabetes, there is a “blame the victim” mind-set, but I can’t imagine it approaches the level of HIV stigma, which affects intimate relationships because it is sexually transmissible. The bottom line is, I don’t think doctors making statements like that

are helping anyone. It’s like the “HIV is manageable” statement. Sure, it’s manageable for most people, but it’s still wildly not so for others.

MISS PHILICIA

I’ve never known diabetes to be criminalized the same way HIV is. I’ve never read a personals advert saying “diabetes negative UB2.”

Having HIV strongly influences when and what I eat, my exercise and sleep regimes, disclosure issues mandated by law, neuropathy, extra work mediating depression, extra monitoring for non-AIDS-defining cancers and so forth. I’m not saying diabetes is simple, but HIV is not as simple as taking a pill. Just because we’ve become accustomed to the routine doesn’t mean that it is a walk in the park.

HARLEYMC

UNDETECTABLE AND PROUD

In his op-ed “‘Undetectable’ Is the New ‘Negative’?”

(March 11, 2014), David Duran wrote about being proud of his undetectable viral load, especially after recent

Great story! I have been undetectable with awesome labs for over six years and decided to proclaim this on the few dating sites I visit.

Unfortunately, not one person has ever written to me since, even though my profile has been perused hundreds of times. It’s unfortunate that such stigma still exists.

that, I mean another way to cleave off big chunks of the gay community, saying, “I’m not like those other guys who are fat, femme or experiencing a viral blip.” I’ve been rejected because of HIV, and even though I’m an adult, it can still hurt when you get dissed by the cool kids. My labs may be undetectable, but I don’t want to date someone who turns some number into a deal breaker.

MICHAEL BUITRON, LONG BEACH

ROBERT, COLUMBUS

I’ve been undetectable for almost a year now, and it’s been a rough ride. The thought of being close to someone is scary. I would be horrified if someone had to go through what I’ve had to.

I wish people would realize that we could still infect others; it’s not a cure even if you’re undetectable.

NOVEL ROMANCE

TONY

Knowingly risking someone else’s health is irresponsible.

Being positive myself, I know the anguish, stress and pain it causes. Yes, being undetectable is good, but not allowing your partners to make an informed decision is selfish beyond belief.

TOMMIEJ

If the country really wants to eradicate HIV, the laws need to change. The criminalization of HIV needs to change.

If a person is undetectable and uses condoms, then there should not be any disclosure requirement. The disclosure requirement to state governments also needs to end. People don’t get tested because they don’t want government snoops looking over their shoulders. For every positive and proud person, there are 1,000 positive and scared people who are afraid to get tested.

This is a policy problem.

STEVE

Is “undetectable” the new “straight-acting”? And by

In “Dangerous Writing” (March/April 2014), POZ editor-in-chief Oriol R. Guiterrez Jr. interviewed renowned author Tom Spanbauer about his latest novel, I Love You More, which is about HIV/AIDS, aging with the virus and falling in love.

I am turning 65 in May. I have been HIV positive since the ’80s and feel amazing. I cry a lot because I am so grateful to be turning 65 and to be sober and pretty happy. Most people don’t get why this is such a big deal. I have straight and gay friends, but they are all considerably younger so they weren’t in New York City in the ’80s. The author and I were. We are kindred spirits and survivors. I will get the book because I am sure I will know what he is talking about.

LESTER PATTERSON, NEW YORK CITY

I love that Tom is writing about gay men of a certain age, and especially through the prism of living with HIV. MARK S. KING, WASHINGTON, DC

poz.com JULY/AUGUST 2014 POZ 9

THE POZ Q+A

BY ORIOL R. GUTIERREZ JR.

Tim Horn at work in his New York City TAG office.

The former AIDSmeds editor-in-chief finds a new role as HIV project director of the Treatment Action Group.

T

IM HORN IS THE HIV PROJECT DIRECTOR OF THE TREATMENT Action Group (TAG), an independent AIDS research and policy think tank based in New York City. Launched in 1992 from its origins in the AIDS Coalition to Unleash Power (ACT UP), TAG aims to accelerate research and policy for better treatment, a vaccine and a cure for HIV. Before TAG, Horn was president and editor-in-chief of AIDSmeds.com, the treatment-focused sister site of POZ.com. He helped launch the site with Peter Staley, AIDSmeds founder and veteran activist of ACT UP and TAG. Horn has spent more than two decades in HIV/AIDS advocacy, including work as a writer and editor at amfAR, the Foundation for AIDS Rsearch and as executive editor of the PRN Notebook, a quarterly journal for clinicians who treat HIV. We catch up with Horn, a long-term survivor of HIV himself, on his new role at TAG. We also get his insights into new treatment guidelines from the U.S. Department of Health and Human Services (HHS) as well as the HIV treatment pipeline.

Why are the new HHS guidelines significant?

This past May, HHS released new HIV treatment guidelines that no longer categorize everything into preferred and alternative. They made a few key recommendations based on regimens that are applicable for everyone and for individuals who meet certain criteria based on viral load and CD4 count.

The guidelines include a listing of the average wholesale prices for drugs. It is very clear that there is a cost consideration, even though they don’t explicitly mention it.

Like it or not, we are moving into a very new era under the Affordable Care Act where cost is a key factor in treatment decisions moving forward.

10 POZ JULY/AUGUST 2014 poz.com

As a result, we’re going to see abacavir [generic version of Ziagen] and 3TC [a.k.a. lamivudine, the generic version of Epivir] back in the limelight. While there has been some debate around whether they will increase the risk of heart attack, the data has been very mixed in that regard.

Under the guidelines, once you’re virally suppressed for a certain period of time they recommend you hold back testing CD4 counts. Right now, CD4 counts are usually tested every three to four months. HHS is saying once you’re suppressed and once your CD4 counts show signs of improvement, you can hold back on regular CD4 testing.

It’s an interesting cost-saving approach, but CD4 testing is one of the cheapest laboratory parameters we have available right now. Regardless, people with HIV still need to get their viral load checked on a regular basis, especially while they’re on therapy.

What’s in the HIV treatment pipeline?

There aren’t really a lot of truly novel

BILL WADMAN

ACCELERATING ACTION

agents in critical development. We do see a number of agents being developed in pre-clinical studies, animal studies and tested studies that do show some potential value, but those have been very slow to move into clinical trials.

When we look at the current regimens available for first-line therapy, they are massively suppressive. They are as potent as they are going to be. The next barrier in treatment development is making drugs even safer and easier to take. Combination pills are making HIV drugs easier to take. The safer aspect is a bit more difficult.

We definitely need treatment for drug-resistant HIV, but we are just not at a point in the United States where we have a massive epidemic of people with multiple drug-resistant virus. However, this is not to say there aren’t those folks out there. There are certainly a number of people who are at the end of their rope therapeutically because they are basically resistant to everything.

One thing to keep an eye on is tenofov ir alafenamide fumarate (TA F), which is under development by Gilead Sciences. It’s basically a chemical cousin to tenofovir disoproxil fumarate (TDF), which is in Atripla, Complera, Stribild, Truvada and Viread.

Gilead is moving forward with Phase II and Phase III studies of TAF. In fact, it’s looking at a new version of Stribild using TAF instead of TDF, which has been in Stribild since its inception.

TAF requires a very low milligram dosage, from 10 to 25 milligrams, versus 300 milligrams for TDF. Even with such a low milligram dose, we see very high levels of tenofovir in people’s cells. Since there’s actually a very little amount of the drug circulating in the bloodstream, the potential is that TAF is less likely to cause things like bone loss and kidney toxicity, which are two of the potential drawbacks of TDF. Another thing people have their eyes on are long-acting drugs injected intramuscularly, such as GSK1265744 from ViiV and Edurant (rilpivirine) from Janssen. It looks like they would be injected once a month, primarily as maintenance therapy. ViiV is going to

be conducting a study that should open before the end of 2014 to look at these two drugs used together.

When people reach an undetectable viral load, after three months or so, then they could potentially switch to a longacting formulation. They could inject the drugs once a month instead of taking pills orally daily. Long-acting agents are showing a great deal of promise not only for treatment but also as pre-exposure prophylaxis (PrEP) to prevent HIV. Tell us about your work at TAG.

I oversee a number of resource, policy and advocacy priorities. Much of my focus is related to two issues I’m passionate about in the field, which are antiretroviral research and development, as well as

think we will end the epidemic is on a state level. What is going to be a critical issue going forward is getting the advocacy in those states and getting those health departments, as well as the clinicians and community service providers, to set statewide targets.

Even though the national government pumps a fair amount of resources and funding into various programs, the fact is the states have to meet the federal government halfway. So many programs that we depend on for HIV really do depend on state involvement, everything from Medicaid to putting money into AIDS Drug Assistance Programs.

What else is TAG working on?

Apart from ongoing programs, we’re ex-

“We need more

input in ways to improve linkage to and retention in care.”

understanding the resources and complications around HIV and non-AIDS complications of HIV. Apart from my personal role, TAG is working on numerous fronts. One of them is the National HIV/AIDS Strategy.

Launched in 2010, it set out targets to be achieved by 2015, which included reducing the rate of new HIV cases by 25 percent and to get treatment to 85 percent of HIV-positive people within three months of their diagnosis.

A great deal of work still needs to be done to achieve even very mediocre goals. By 2020, we need to be even more ambitious. We are seeing some improvements nationally in the number of people who are being diagnosed with HIV, but we need a lot more data. We need more input in ways to improve linkage to and retention in care.

I don’t think we are going to end the epidemic on a national level. Where I do

cited about our HIV prevention partnership with amfAR, The Foundation for AIDS Research; the National Institutes of Health (NIH); community-based groups; and federal agencies.

Getting people on treatment and keeping them healthy remain priorities, but we also want to get them undetectable to prevent transmission. We want to reinvigorate the importance of prevention for all people in the United States. It’s a critical part of our public health response because we can’t treat our way out of the epidemic.

We’re also interested in comprehensive health services under the Affordable Care Act for those at risk of HIV, which means determining who that is and to not just focus on keeping them HIV negative, but keeping them well.

This approach works for people living with HIV. It also may be very beneficial for people at risk. ■

poz.com JULY/AUGUST 2014 POZ 11

POZ PLANET

BY TRENTON STRAUBE

PAST AND PRESENT TENSE Historian Martin Duberman, author of Hold Tight Gently, explains why we should never forget AIDS pioneers Michael Callen and Essex Hemphill.

Essex was less overt than Mike regarding sexuality and HIV activism.

Is that indicative of race or socioeconomic status? For Essex, “home” was not the gay community, it was the black community. And he didn’t want to lose his ties to it. In general, the unspoken pact [in the black community to gay members] was that, “You belong to us, you remain family, but you do not become publicly or politically active on behalf of your sexual orientation.” Essex brought it up often.

Essex Hemphill, left, and Michael Callen died in the mid-’90s. Martin Duberman (insert) recounts their lives and the ways AIDS affected white and African-American communities.

Did Mike also represent a larger social group? Mike represents a number of people—those who attended the 1983 Denver conference, for example. Very few of their names are remembered, but they did very important work. They established the central principle that PWAs [people with AIDS] are not victims, they are the experts on their own lives and what’s happening to their own bodies. That was one of Mike’s objections to GMHC. Namely, that no PWAs were on the GMHC board.

Instead PWAs were supposed to sit in an audience and listen to the so-called experts tell them about their own lives.

Would Mike’s sexual politics raise eyebrows in today’s age of gay marriage?

He spoke of having thousands of sexual partners. Mike is a product of the 1970s, the decade of sexual liberation. The gay movement the first years after Stonewall was radical. Mike was not an advocate of assimilation. He thought gay people were valuably different and should use that as a way of educating and changing the mainstream. Mike was a radical in his perspectives, and he never lost that. And that’s precisely what the gay movement, in my opinion, needs today. y

It’s no surprise that Michael Callen gets namechecked in Leslie L. Smith’s Sally Field Can Play the Transsexual. As a gay, HIV-positive director-turned-author, Smith weaves current topics—survivor’s guilt, condomless sex and pre-exposure prophylaxis (PrEP)—into his serio-comic novel about a gay hustler in New York City who must contend with a dying mother in Arkansas and the recurring ghost of a wealthy mentor who died of AIDS complications.

FINGER-POINTING IN RUSSIA Russian lawmakers do not have their fingers on the pulse of HIV prevention. A proposed bill requires all people living with the virus—including foreign visitors—to be fingerprinted for a national database. In fact, the bill requires all residents to be fingerprinted. Critics say it’s unaffordable and unjustifiable. Meanwhile, a virulent strain of the virus is spreading in that country, where nearly 58 percent of the HIV population acquires it through injection drug use. However, Russian leaders distrust proven harm reduction tactics, which they associate with the West. As a result, they’ve banned methadone treatment for addicts and refused to fund needle exchange programs.

12 POZ JULY/AUGUST 2014 poz.com

(HEMPHILL) COURTESY OF JIM MARKS; (CALLEN) ( ) COURTESY OF RICHARD DWORKIN; (DUBERMAN) THE NEW PRESS/RAYMOND ADAMS; (ILLUSTRATION) THINKSTOCK

Michael Callen was an outspoken activist and singer living in New York City; Essex Hemphill was a black poet in Washington, DC. They weren’t friends, but both were gay and died at age 38 in the mid-’90s. Why profile them and this period of AIDS history? It’s part of the story that has been least told, the preACT UP story. I think the lives themselves of Mike and Essex needed retrieval. Both were extraordinary men, very brave, very generous in terms of helping others. Mike started his own group, the People With AIDS Coalition, which did an awful lot of good work. Its newsline—I was a volunteer there for a couple of years—was a real lifeline to a lot of people. The phones were constantly ringing from people asking for information. But their work just isn’t as well known as GMHC or ACT UP. And one of the central themes of the book is the different ways AIDS has impacted the white and African-American communities. The story of how the white gay world in general has treated black gay people has itself not been well told.

SUMMER SCHOOLIN’

(KNUCKLES) DEF MIX; (BROWN) CWRU/UH CFAR; (“SHARPIES”) SAN FRANCISCO DEPARTMENT OF PUBLIC HEALTH; (RIVERS) GLWD/JESSICA FRANKL; (MANHATTAN SYKLINE AND STATUE OF LIBERTY) THINKSTOCK

“Sharpies” and CFAR undergrads study AIDS research.

Forget ditching the schoolbooks for fun in the summer sun. As part of the Minority HIV Research Training Program at Case Western Reserve University in Cleveland, Ohio, undergraduate “trainees” gain hands-on experience by teaming up with top scientists at the school’s Center for AIDS Research (CFAR). During the program’s 10 years, 25 scholars have studied everything from immigrant health to HIV latency, each giving a poster presentation of their work at the session’s end.

Jonathan Karn, PhD, head of the Case Western CFAR, says that HIV research and global health are gaining popularity. “Right now,” he says, “there’s a lot of excitement around a functional cure and eradicating the virus.”

Similarly, at the San Francisco Department of Public Health’s Summer HIV/AIDS Research Program (SHARP), six undergraduates are working with the city’s researchers. Each “Sharpie” develops a unique project of interest—some of the topics this summer include using online tools to help gay men reduce their HIV risk, studying the resiliency of transgender Latinas and estimating populations sizes in the Middle East. “The program hopes to increase the number of researchers who come from minority backgrounds,” says

From top: Center for AIDS Research “trainee” Jordan Brown, and undergrad researchers with the San Francisco Department of Public Health

Liz Kroboth of the city’s public health department. “Since those also happen to be the communities most affected by HIV, it makes sense to have people with an intimate understanding of those communities to be able to solve some of the HIV challenges we face.”

THE HOUSE THAT FRANKIE BUILT The “Godfather of House Music” Frankie Knuckles died March 31 at age 59 of diabetes complications, but his legacy will live on beyond the dance floor. The Elton John AIDS Foundation, Judy Weinstein and Def Mix Productions created the Frankie Knuckles Fund to support HIV/AIDS education, testing and treatment for black men at high risk of the virus in Africa, the United States and the United Kingdom. It’s a pitchperfect pairing. Knuckles’ influential sound—his classic tracks include “The Whistle Song” and “Your Love”—took off in ’70s and ’80s dance clubs popular among gay black men in Chicago and New York.

“His legacy,” says Sir Elton John, “provides a powerful voice to reach out to people, particularly men of color, about their essential role in helping to create an AIDS-free future.”

THE NUMBERS

15 30 609 %

Million meals

In May, the always-in-fashion Joan Rivers helped prepare the 15 millionth meal for God’s Love We Deliver, which provides much-needed meals for New Yorkers living with severe illnesses, including HIV/AIDS.

Rent cap

Tenants in New York City’s HIV/AIDS rental assistance program will not pay more than 30 percent of their disability income toward rent. Before the rent cap, upwards of 70 percent went to housing, leaving precious little for actual living.

New Yorkers

Although HIV/AIDS was not a top 10 killer of New Yorkers in 2012—marking the first time it dropped off that list—it did take 609 lives and rank as the No. 5 killer of people younger than 65. New infections stayed at about 3,000 a year.

poz.com JULY/AUGUST 2014 POZ 13

POZ PLANET

BY TRENTON STRAUBE

LEAD BY EXAMPLE Carl Sciortino helms AIDS Action of Massachusetts.

As a state congressman for nearly a decade, Carl Sciortino honed a lot of the skills he’ll need as s the new executive director of AIDS Action Committee of Massachusetts. But another aspect makes him uniquely qualified: He’s HIV positive. “It’s critical to have people living with the virus at the table,” he says.

“It really is our lives and our health and our future at stake. If we were only talking about preventing new infections, we wouldn’t be having honest conversations about ending the epidemic.” For similar reasons, he’s also open about being gay.

“I know many men who take pride in being gay but are terrified to tell their closest friends and family members they have HIV,” he says. “That’s something worth exploring.”

Sciortino arrives as AIDS Action is merging with Fenway Health, which provides medical care for Boston’s LGBT community. (Both organizations will retain their separate brand identities.) It’s a common trend in today’s streamlined AIDS landscape: Groups that provide strong advocacy and support services such as housing and HIV testing join up with a medical care facility. Now, for example, folks who test positive at an AIDS Action program can be directly linked to Fenway’s health care team. “These partnerships can be important,” Sciortino says. “It’s a great opportunity to show From top: Carl Sciortino is living—and leading— what’s possible for ending the epidemic.” with HIV; AIDS Action’s drop-in center in Boston.

MOTHER KNOWS BEST (SCIORTINO) AIDS ACTION/JIM HARRISON; (LEWIS) THE 30/30 PROJECT; (PARKER ET AL.) “MY STATUS IS NOT A SECRET”

Ryan Lewis’s HIV-positive mom wants to build 30 health centers.

Hip-hop duo Macklemore & Ryan Lewis are promoting a cause that’s close to home: the 30/30 Project. Lewis’s mom, Julie, contracted HIV in 1984 from a blood transfusion during childbirth. She had two more kids before being diagnosed with the virus in 1990 at age 32. Today, she considers herself lucky.

She’s doing well on meds, and her children were born negative. To celebrate three decades of life since her diagnosis, she’s launching the 30/30 Project, an initiative to help women, children and families around the world who don’t have health care.

Fighting Stigma by Telling Stories

When Parker Trewin asked his friend Jason Lankow for a donation to his AIDS/LifeCycle bike ride fund, Lankow declined to write a check.

Instead, as the CEO of infographics design firm Column Five, Lankow donated his company’s time to create “My Status Is NOT a Secret,” a website and campaign that promotes much more than Trewin’s fundraising ride in California. “The goal of the site is to reduce stigma by humanizing the HIV experience,” Trewin says. To that end, the site includes videos of nine people who share their perspectives about HIV. “Stories personalize the experience in a way that billboards and PSAs cannot,” Trewin says. “They provide a touchstone for people who might be physically or emotionally unable to connect with others like them.”

Trewin, 54, understands the fear of disclosure; he waited 10 years to tell people his status. Today, he sees the benefit of sharing and advocating: “I just got a note from a decorated, former Navy squadron leader who is 84 years of age and a 30-year HIV survivor. He said that I inspired him. He inspires me.”

Ryan Lewis and his mom, Julie, launch the 30/30 Project.

“The Lewis family,” as Ryan explains on 3030project.org, “is raising funds to build health centers worldwide that will stand strong for at least 30 years.” They’re partnering with Construction for

Change to build the facilities, and other groups will help staff them. The debut project kicks off in Malawi. “I want to do something big,” Julie says. And so can you. Visit the website to donate.

Clockwise from top left: Parker Trewin, Gabo, Marissa and Tina

poz.com JULY/AUGUST 2014 POZ 19

VOICES

THE BEST BLOGS AND OPINIONS FROM POZ.COM

CLOSE TO ZERO

Below is an edited excerpt from a post by POZ blogger Aundaray Guess titled “Coming Back From Zero” on his early struggles with HIV treatment adherence, his current effective regimen and his adherence advice for others.

THINKSTOCK

A

dherence describes the ability to take your medication on time and at the right dosage. I understood the meaning, but I skipped too many doses and found my CD4 cell count not far from single digits.

As an African American who has progressed to living a healthy life with HIV, I still have to remind myself of the lessons I learned by being non-adhering.

I was never a pill person. Even before my diagnosis, I would have rather rested my body than take an aspirin for my headache. Pills represented a weakness.

I always considered myself a strong person. I wanted to heal without the aid of something made in a lab. So when I was diagnosed with HIV, I knew it was going to be a struggle for me. It was one of the reasons I didn’t commit to seeing a doctor on a regular basis. Since I wasn’t placing myself on pills, what need was there for a doctor.

I knew I was playing with my health, but the idea of swallowing a pill every day for the rest of my life was not appealing. I was only 19 years old when diagnosed, so that meant a long road ahead. I also was concerned about any long-term damage. Would my liver or other organs pay for my decision?

My change in thinking came one year long ago. I was constantly sick. I started that year with bronchitis and ended it

with bronchitis. My doctor told me that my CD4 cells were starting to dip below 50 and heading to zero. That’s when the fear set in. In a weird way, it was OK for me to have HIV, as long as I didn’t have an AIDS diagnosis. I had AIDS. I was defeated. I allowed my doctor to prescribe me HIV meds. Although it was only a square piece of paper that he handed me, it felt like an anvil. I told myself this was my life preserver, which would stop me from sinking further.

The pill kaleidoscope of colors and sizes intimidated me. The instructions were just as puzzling. I didn’t know it was going to be so complicated. Then there was the matter of how to keep the pills hidden if someone visited my home.

My will was tested when the side effects came. People shared stories of nausea, cramps and constant diarrhea, which added to my reluctance. In the scheme of things, I was pretty lucky. I only had loose stool. Eventually that went away and so did my opposition.

I started to feel better. My CD4 cells were inching up, but my doctor still was concerned about why my levels were rising so slowly. When he asked me if I was missing dosages, I looked him in the eye and said no. I lied. The truth was I was taking many “holidays” [breaks from my drug regimen].

My holidays were scattered, taking

just the morning dosage, for example, and missing the evening dosage, or vice versa. Some days I wouldn’t take it because I was tired, out late or just didn’t feel like it. My unspoken reason was untreated depression that made adhering unrealistic.

My punishment? I became resistant not only to my medication, but also to others in the same class of HIV meds.

My stubbornness was affecting my life badly. I had to get my act together. If medication could help me fight the virus, I should do what I needed to do.

My advice to anyone having issues with inconsistent adherence is to first realize you’re playing with your health.

Look at your life and see what’s blocking you. For me, it was depression. Also, talk to your doctor to come up with a treatment regimen that works for you.

Since my diagnosis, newer meds have been developed. Some regimens allow people to take just one pill a day.

I’ve since dedicated myself to being adherent, and my reward is seeing my CD4 cells climb. I was close to zero, but now I’m at a healthy 632. That’s a long way from zero. Although I take my meds daily, I still don’t lose sight of my ability to take care of myself. It’s just that I have a little help—and that’s OK. —Aundaray Guess blogs.poz.com/aundarayguess

poz.com JULY/AUGUST 2014 POZ 21

CARE AND TREATMENT

BY BENJAMIN RYAN

HEP C CURE RATES ARE THE SAME FOR THOSE WITH HIV Treatment for hepatitis C virus (HCV) is in the midst of a stunning revolution.

With the release of Gilead Sciences’ Sovaldi (sofosbuvir) and Janssen’s Olysio (simeprevir) in late 2013, cure rates have jumped while treatment times have fallen. Plus, the onerous injectable drug interferon is on its way out. By year’s end, the likely arrival of new crops of combination therapies from Gilead, Bristol-Myers Squibb, Janssen and AbbVie will make hep C curable nearly 100 percent of the time in many cases, while also lowering treatment times to as little as eight weeks and doing away with interferon for good.

And all this good news holds true even for someone who is coinfected with HIV. In the past, HIV dragged on hep C treatment success rates. But recent research shows that this is no longer the case with current and forthcoming hepatitis C therapies. Furthermore, Sovaldi, which is the first hep C drug specifically approved by the U.S. Food and Drug Administration for use in people with HIV, can be safely combined with almost all HIV regimens.

Daniel Fierer, MD, an assistant professor in infectious diseases at the Icahn School of Medicine at Mount Sinai Hospital in New York City, has a message for those coinfected people who may have disengaged from medical care because of historically depressing news: “This is the time to get back into [hep C] care, get back to thinking about it,” he says. “Bug your doctor about it. Now.”

26 POZ JULY/AUGUST 2014 poz.com

A second baby born with HIV—this one in Long Beach, California—now has no detectable evidence of the virus following an aggressive antiretroviral (ARV) treatment regimen given shortly after birth. Viral RNA was detected in the baby’s spinal fluid, indicating that she was “definitely infected,” in the words of Deborah Persaud, MD, of Johns Hopkins Children’s Center, who participated in the laboratory evaluation of both children.

Just like the previous case in Mississippi, the Long Beach baby was born to an HIV-positive mother who had not taken the proper steps to prevent transmitting the virus to her child during pregnancy. In an attempt to replicate the success of the Mississippi baby’s case, pediatricians at Miller Children’s Hospital in Long Beach immediately gave the infant HIV treatment doses of zidovudine (AZT), lamivudine (3TC) and Viramune (nevirapine), as opposed to prophylactic doses.

When the child was 9 months old, highly sensitive tests could not detect the presence of HIV in the child’s peripheral blood. She is still taking ARVs, so she cannot, however, be qualified as functionally cured or in viral remission at this time.

Lisa M. Frenkel, MD, a professor of pediatrics at the University of Washington in Seattle, has long followed her own protocol for high-risk infants, treating them with a more aggressive ARV regimen. If research on the safety and efficacy of such an approach pans out to support its potential for curing infants, Frenkel’s all for a widespread change in treatment tactics.

“To me, for eons [the treatment protocol] has warranted being changed,” she says.

BOTH IMAGES: THINKSTOCK

SECOND BABY POSSIBLY CURED OF HIV

Risk of Transmitting When Undetectable May Be Zero

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

On the Horizon: Long-Acting ARVs Promising research suggests that long-acting antiretrovirals (ARVs) that allow for dosing every one to two months may become a reality. A Phase IIb trial examined a regimen of daily oral versions of the integrase inhibitor GSK744 and the reverse transcriptase inhibitor Edurant (rilpivirine), comparing it with a standard triple cocktail of Sustiva (efavirenz) and two nucleoside reverse transcriptase inhibitors. The two regimens proved comparable in their ability to suppress HIV. This study opens the door for a trial of long-acting therapy with intramuscular injections of GSK744 and Edurant given every four to eight weeks.

A long-acting version of GSK744 is already being investigated as a form of preexposure prophylaxis (PrEP) and has shown promise in primate trials in its ability to protect against both vaginal and rectal transmission to SIV, HIV’s simian cousin. Meanwhile, a long-acting form of Edurant is currently being developed.

“I have a lot of patients who take their medications every day, but really would prefer not to have to look at a bottle of Atripla every day and be reminded that they’re HIV positive,” says Tony Mills, MD, an HIV specialist in West Hollywood.

“So I think for people who would like to do the shot every month or two months it would be a very useful therapy.”

Two years into a second major study examining the chances of transmitting HIV with an undetectable viral load, there have been no transmissions between either gay or heterosexual mixed-HIV status partners. The study, called PARTNER, includes couples in which the HIV-positive partner is on HIV treatment. To enter the study, all couples had to report having intercourse without condoms during the four weeks before the study. A total of 767 couples were included in this two-year interim analysis.

There were no transmissions within couples in which the HIV-positive partner had a viral load below 200. An estimated 50 to 100 transmissions would have taken place if no one living with HIV in the study had been taking antiretrovirals.

The researchers estimated that the overall 10-year risk of transmitting HIV in these circumstances was zero percent to 4 percent. As for how low the risk of transmitting a fully suppressed virus may ultimately prove to be, Alison Rodger, MD, a senior lecturer at University College London, and a member of the PARTNER study group, says her “best estimate is zero,” but she “cannot exclude that it may be higher.”

MORE GAYS TEST FOR HIV; MORE TAKE HIV MEDS An increasing number of men who have sex with men (MSM) are taking HIV tests, and more of those living with HIV are taking antiretrovirals (ARVs).

However, another key figure remains unchanged: the rate of those MSM who are linked promptly into medical care following an HIV diagnosis.

Looking at recent data from the U.S. Centers for Disease Control and Prevention (CDC), one group of researchers found that MSM testing rates rose from 63 percent to 67 percent between 2008 and 2011. For African-American MSM, that figure jumped from 63 percent to 71 percent.

In another study, investigators examined the same data pool from the CDC and found that about three-quarters of MSM were promptly linked to care in both 2008 and 2011. However, during that time frame, the rate of MSM living with HIV who were taking ARVs jumped from 68 percent to 77 percent.

Edward Gardner, MD, is an infectious disease specialist at Denver Public Health who in 2010 created the famed notion of the “treatment cascade,”

which is a descending bar graph charting those who know their HIV status, those who are linked to care, those retained in care, and on down to those who are virally suppressed. He says that the linkage and long-term retention steps are especially challenging for people.

“Dealing with the emotion and stress of a new diagnosis of HIV and then trying to follow through with all those steps that are required—it’s not just getting an appointment and going,” he says, “it’s really a fairly complex management issue.”

poz.com JULY/AUGUST 2014 POZ 27

Single Tablet Regimens

H E A L T H ,

L I F E

&

H I V

Antiretroviral (ARV) options abound for both those who are new to HIV treatment and those who are experienced.

This quick-reference chart compares available medication options, including dosing and dietary restrictions.

ATRIPLA (efavirenz + tenofovir + emtricitabine)

COMPLERA (rilpivirine + tenofovir + emtricitabine)

STRIBILD (elvitegravir + cobicistat + tenofovir + emtricitabine)

572-TRII (dolutegravir + abacavir + lamivudine)

One tablet once a day. Contains two NRTIs and one NNRTI in one tablet.

One tablet once a day. Contains two NRTIs and one NNRTI in one tablet.

Take on an empty stomach and at bedtime to minimize dizziness, drowsiness and impaired concentration.

Take with a meal containing fat.

One tablet once a day. Contains two NRTIs, one integrase inhibitor and one pharmacokinetic (PK) enhancer in one tablet.

One tablet once a day for those starting ARV therapy for the first time. One tablet twice a day for individuals resistant to Isentress and elvitegravir. Contains two NRTIs and one integrase inhibitor.

Take with food.

Take with or without food.

SUSTIVA (efavirenz)

ISENTRESS (raltegravir)

One 25 mg tablet once a day.

One 600 mg tablet once a day, or three 200 mg capsules once a day.

One 400 mg tablet twice a day.

FUZEON (enfuvirtide)

Take with or without food.

One 90 mg injection twice a day.

Take with a meal containing fat.

INTELENCE (etravirine) One 200 mg tablet twice a day, or two 100 mg tablets twice a day.

VIRAMUNE XR (nevirapine)

Take with food.

One 200 mg Viramune IR tablet once a day for the first 14 days, then one 400 mg Viramune XR tablet once a day.

Take with or without food.

RESCRIPTOR (delavirdine) Two 200 mg tablets three times a day, or four 100 mg tablets three times a day.

Take with or without food.

*Pills not shown actual size

COBICISTAT 150 mg once a day with ARVs that require boosting. *not approved as of June 2014

Integrase Inhibitors

Take on an empty stomach and at bedtime to minimize dizziness, drowsiness and impaired concentration.

TIVICAY (dolutegravir) One 50 mg tablet once a day for those starting ARV therapy for the first time or for those who have not used an integrase inhibitor in the past. One 50 mg tablet twice a day for those who are resistant to the first-generation integrase inhibitors and when taken with certain ARVs. Take with or without food.

GS-9137 (elvitegravir) 85 mg or 150 mg once a day.

Take with food. *not approved as of June 2014

Fusion and Entry Inhibitors

EDURANT (rilpivirine)

PK Enhancer

Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs)

*not approved as of June 2014

Fuzeon comes as a white powder that must be mixed with sterile water in a vial each day before being injected.

Take with or without food.

SELZENTRY (maraviroc) One 150 mg tablet, one 300 mg tablet, or two 300 mg tablets twice a day (because Selzentry interacts with many HIV drugs, the dose will depend on other meds being used).

Selzentry is only effective against CCR5-tropic HIV (virus that uses the CCR5 receptor on CD4 cells). A tropism assay, such as Monogram Bioscience’s Trofile, will determine whether treatment with Selzentry will be useful.

Take with or without food.

COMBIVIR (zidovudine + lamivudine) *generic is available in the U.S. One tablet twice a day. Contains two NRTIs in one tablet.

Take with or without food.

TRUVADA (tenofovir + emtricitabine)

APTIVUS (tipranavir)

NORVIR (ritonavir)

One tablet once a day. Contains two NRTIs in one tablet.

Two 250 mg capsules plus two 100 mg Norvir tablets twice a day.

Six 100 mg tablets twice a day.

Take with or without food.

Approved only for treatmentexperienced patients. Aptivus must be taken with Norvir.

The full dose of Norvir is rarely used. It is most often used at much lower doses to “boost” the levels of other PIs in the blood.

Take with food.

Take with food.

EMTRIVA (emtricitabine) One 200 mg capsule once a day.

CRIXIVAN (indinavir)

One 400 mg capsule once a day (or one 250 mg capsule once a day for those who weigh less than 132 lbs.).

EPIVIR (lamivudine) *generic is available in the U.S.

Two 400 mg capsules three times a day, or two 400 mg capsules plus one or two 100 mg Norvir tablets twice a day (preferred dosing).

Take on an empty stomach. Best to avoid alcohol with this drug.

Take on an empty stomach or with a light, low-fat snack if used without Norvir. If Norvir is used, take with or without food. Drink six glasses of water a day to help prevent kidney stones.

One 300 mg tablet once a day, or one 150 mg tablet twice a day.

Take with or without food. Also approved for the treatment of hepatitis B virus (HBV), but at a lower dose. People living with both viruses should use the HIV dose.

VIREAD (tenofovir) One 300 mg tablet once a day.

Take with or without food.

EPZICOM (abacavir + lamivudine) One tablet once a day. Contains two NRTIs in one tablet.

Get tested for an inherited gene (HLA-B*5701) before starting this medication to reduce the risk of a severe allergic reaction to abacavir.

Take with or without food.

ZERIT (stavudine) *generic is available in the U.S. One 40 mg capsule twice a day (or one 30 mg capsule twice a day for those who weigh less than 132 lbs.).

Take with or without food.

Take with or without food.

One tablet twice a day.

Contains three NRTIs in one tablet.

Get tested for an inherited gene (HLA-B*5701) before starting this medication to reduce the risk of a severe allergic reaction to abacavir.

Take with or without food.

Two 500 mg tablets plus one 100 mg Norvir tablet twice a day.

Invirase must be taken with Norvir.

Take with food.

Take with or without food.

One 800 mg tablet (or two 400 mg tablets) plus one 100 mg Norvir tablet once a day, or one 600 mg tablet plus one 100 mg Norvir tablet twice a day; depending on extent of HIV drug resistance.

Prezista must be used with Norvir.

Take with food.

REYATAZ (atazanavir) Two 200 mg Reyataz capsules once a day, or one 300 mg Reyataz capsule plus one 100 mg Norvir tablet once a day.

KALETRA (lopinavir + ritonavir)

ZIAGEN (abacavir) *generic is available in the U.S.

Get tested for an inherited gene (HLA-B*5701) before starting this medication to reduce the risk of a severe allergic reaction to abacavir.

PREZISTA (darunavir)

Take with food.

Take with or without food.

Two 300 mg tablets once a day, or one 300 mg tablet twice a day.

TRIZIVIR (abacavir + zidovudine + lamivudine)

INVIRASE (saquinavir)

Two tablets twice a day, or four tablets once a day, depending on extent of HIV drug resistance.

Contains two PIs in one tablet.

RETROVIR (zidovudine) *generic is available in the U.S. One 300 mg tablet twice a day.

Protease Inhibitors (PIs)

Nucleoside/Nucleotide Reverse Transcriptase Inhibitors (NRTIs)

Take with or without food.

VIDEX EC (didanosine) *generic is available in the U.S.

LEXIVA (fosamprenavir) Two 700 mg tablets twice a day, or two 700 mg tablets plus one Norvir tablet once a day, or one 700 mg tablet plus one Norvir tablet twice a day (recommended dose for those who have used other PIs in the past).

People who have used other PIs in the past should only use twicedaily Norvir-boosted Lexiva.

Take with or without food.

VIRACEPT (nelfinavir) Two 625 mg tablets twice a day, or five 250 mg tablets twice a day, or three 250 mg tablets three times a day.

If you have trouble swallowing the pills, you can dissolve a powder formulation in water for easy drinking.

Take with food.

To learn more about these medications, including possible side effects and drug interactions, visit POZ.com.

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Ebook also available | SimonandSchuster.com

SEROZERO

JUL/AUG 2014

Mandatory Mail Order Pharmacies: A Bitter Pill to Swallow

By Janet Weinberg, Interim CEO and Chief Operating Officer, GMHC & The Honorable Letitia “Tish” James, New York City Public Advocate MANY PEOPLE LIVING in New York City know how

OptumRx. When Optum lost his HIV medication in frustrating it can be to receive a package in the mail. the mail, a representative said that he’d either have The redelivery notice asks you to be home when to skip his HIV treatment for three weeks (until the you’re supposed to be at work. A birthday next month’s cycle) or pay over $1,000 for gift finally delivered to your apartment a new prescription. Another client, who door gets stolen. Most chalk it up to life was forced to use Empire Blue Cross’ mail in the Big Apple. But what if that package order pharmacy, now has to take eight days is the prescription your mother needs to off from work per year to make sure he is fight breast cancer, or the antiretrovirals home to receive his medications. that keep HIV at bay? Missing that package Insurance companies claim to offer inditransforms an inconvenience into somevidual exemptions, enabling the use of a local thing dangerous to your health. pharmacy. However, they do not provide This is the crisis facing countless New consumers with transparent and adequate Yorkers with life-threatening and chronic notice of how to apply. Often, exemptions conditions — including cancer, lupus, HIV, are granted arbitrarily and only to those who multiple sclerosis, hemophilia, rheumatoid have the time and health to work through a arthritis, and many others — who are required by long and frustrating appeals process, with no guarantee the health insurance industry to use mail order pharof relief. macies. The industry is exploiting a loophole in a Mandatory mail order pharmacies are not only law passed in 2011. The law was meant to ensure bad for public health; they’re also bad for small busiconsumer choice, but instead it allows the nesses. Pharmacies, from local stores to the insurance industry to compel New Yorkers big chains, are being shut out by the health to receive their prescriptions by mail. The insurance companies and millions of dollars law enables insurance companies to manare directed out of state. The important comdate unachievable “terms and conditions” munity connection between a patient and on local pharmacies, preventing them from her neighborhood pharmacist is replaced by qualifying to fill prescriptions deemed an unfamiliar voice on the phone that has no “specialty” by the industry, even if they relationship with patients, no incentive to match the cost. ensure that medications arrive on time, and The result? Prescriptions are lost in no accountability if a prescription is lost in the mail or stolen, requiring consumers to the mail or stolen. In 2012, the Legislature pay the full cost for replacements. Drug and Governor ensured that State Medicaid regimens are interrupted, which leads to enrollees were not forced to use mail order Janet Weinberg (top), resistance and more expensive treatment. pharmacies. The law should be the same for Letitia James (above) Prescriptions that require refrigeration are all New Yorkers. left to spoil at the front door, and confidential health The New York City Public Advocate’s Office, along information is disclosed to neighbors who receive with the New York City Council, is working with medications in error.

GMHC to raise awareness on this issue. One solution As an example, a GMHC client had a relationis New York’s Anti-Mandatory Mail Order Pharmacy ship with his local pharmacy for 30 years before being Bill. It enables New Yorkers, not the insurance indusforced to use United Healthcare’s mail order pharmacy, try, to choose whether to fill prescriptions by mail

or from a local pharmacy, as long as the pharmacy matches the average wholesale cost.

This bill enjoys bi-partisan support from a broad coalition of over 60 healthcare and patient advocacy organizations representing New Yorkers across the state. As the bill works its way through the state legislature, insurance companies can do the right thing by notifying all consumers about their right to request a hardship exemption and by laying out a clear process for obtaining it.

Twenty-nine years ago, GMHC launched AIDS Walk to engage the public on the growing AIDS epidemic. Since then, we have fought to protect and promote public health issues affecting all New Yorkers, including those living with HIV/AIDS. Now, as we walk to commemorate those we have lost and to show our collective resolve for fair public health policies, let’s make sure all New Yorkers can choose to fill their lifesaving prescriptions by mail or at their local pharmacy, whichever is best for them and their loved ones.

Releasing Health: I was Afraid I was Going to Die in the Cell

By Alan Perez, founding member, GMHC’s Action Center IN 1990 I was arrested for mari-

juana possession. I believe I was HIV positive at the time because I was getting sick, but I was not officially diagnosed until 2001.

The judge sent me to Rikers Island — New York City’s primary correctional facility — for 90 days. This was scary because I lost my apartment, I lost my job and I missed a lot of my college classes.

On my third day at Rikers, I got sick. I had diabetes and my blood sugar was up. I also had high blood pressure. I asked the correctional officer to take me to the hospital. They refused. They left me in the cell, where I had seizures.

At that time, I was afraid that I was going to die in the cell. I told the correctional officers that I wanted to see the doctor because I needed medication for diabetes and high blood pressure. They refused to take me.

Eventually, they put a spoon in my mouth so that I wouldn’t bite off my tongue. Finally, they took me to the hospital because they were scared that it would get worse. They called the ambulance.

In the hospital they had me handcuffed to the bed. I was uncomfortable because I had a catheter and I had to move my bowels in a pan. I was in the hospital for almost a week. The doctors said that I had to take care of my health. They said that my stress and diabetes could cause my liver to fail.

When I got back to prison, the other inmates started looking at me weird and calling me names like “faggot,” but I didn’t pay them any mind. I didn’t get along with the other inmates most of the time because I was afraid that they might hurt me. I thought they were going to beat me up because I was HIV positive.

There was one inmate who wanted to have sex

2

with me. I told him no because I thought I was HIV positive and I didn’t want to infect him. I told him that I could be his friend and give him advice on how to not get infected and told him to get tested.

Otherwise, I was isolated in my room all of the time. I never came out of my cell, not even to watch TV or to eat. I lost a lot of weight in prison because I was sick and because I was afraid to be with the other inmates in the cafeteria. The guards noticed that I wasn’t eating and they didn’t do anything. It was lonely because I had no visitors. No family members called me. They didn’t write me letters.

Another problem was that it took a long time to get my medication for HIV and for my diabetes. Every time I went to see the doctor for my medication I had to wait in line. Once, my name was not on the list for the medication and I had to wait. When they finally did have my medication, they only had three of the four I needed. Other inmates didn’t have their medications available as well.

Before they released me, I had to go to court. The judge said that I had to go to rehab and detox for marijuana and cocaine possession. He gave me a program to go to so I could clean myself up. I’ve been clean now for 20 years.

When I came out of prison, my mother passed away and I couldn’t be at the funeral because I had to be at rehab. The judge told me that I had to stay out of trouble. He didn’t want me to hang out with people that I used to hang out and do drugs with.

When I came home from rehab, all my friends and family were happy to see me. They said they would support me in every way they could for me to stay clean and not go back to prison.

It was a hell of a ride being in prison. I learned my lesson and don’t want to go back. I have many things to do out here and I want to get my life back together.

GMHC JULY/AUGUST 2014

Excerpts from “Fenced In: HIV/AIDS in the US Criminal Justice System”

by Elizabeth Lovinger

The onset of the HIV epidemic, coupled with a political and legislative climate that was hostile There are approximately 2.2 million people in jail or toward prisoner health, led to deterioration in health prison in the United States. According to the Bureau care. Prisoners increasingly faced obstacles to HIV of Justice Statistics (BJS), about 1.5% of all inmates in medical care in correctional facilities. In November state and federal prisons have HIV or AIDS (21,987 1981, the first prisoner in New York State was conpersons). That percentage is four times higher than firmed to have died from AIDS-related complicathe prevalence rate of HIV in the general populations. By the early 1990s, two-thirds of all deaths tion. The BJS reports that Florida (3,626), New York of incarcerated persons in New York were AIDS(3,500), and Texas (2,450) have the largest number related. Some 7.4% of inmates in of inmates who are HIV-positive.

Northeast state prisons were known The BJS also reports that the rate to be HIV-positive in 1993, a 22% of infection for female inmates FENCED IN increase from two years prior. The (1.9%) is even higher than that of HIV/AIDS in the US Criminal Justice System number of inmates in state and fedtheir male counterparts (1.5%). The eral prisons with an AIDS diagnosis primary routes of transmission are increased 124% from 1,682 in 1991 suspected to be unprotected sexual to 3,765 in 1993. contact and intravenous drug use (IDU), but precise data on infection Condom Access and transmission are not available.

Although the prevalence of highWhile numbers remain high for risk sexual behaviors and sexual HIV prevalence in prisons, the data assault demonstrate the need for may underestimate both HIV prevaproven HIV prevention methods lence and incidence due to existin correctional facilities, only five ing stigma and fear. This stigma county jail systems (New York, not only leads to nondisclosure of Philadelphia, San Francisco, Los HIV-positive status, but also placAngeles, and Washington, DC) and es prisoners at an elevated risk of Download the full report from: two state prison systems (Vermont infection. tinyurl.com/q3oz83g and Mississippi) allow prisoners Healthcare in Prisons and Jails access to condoms. This represents The fight for proper care and treatment in prisons has less than 1% of all U.S. jails and prisons. Correct and been long and difficult and, despite some progress consistent use of condoms reduces the risk of sexually over the years, enormous gaps remain. HIV, tubercutransmitted infections (STIs) and HIV transmission. losis and hepatitis are among the most common infecCondoms remain the single-most effective prevention tious diseases in U.S. prisons. The CDC reports that intervention and will go a long way towards reducup to 41% of inmates have ever been diagnosed with ing HIV transmission and other STIs in the corrections Hepatitis C virus (HCV) and up to 35% are chronically system. infected. In the un-institutionalized population, HCV HIV Education and Testing prevalence is 1–1.5%.

Disparities in HIV and HCV infection between Other than limited knowledge about HIV, specific incarcerated and non-incarcerated populations dempolicies within prisons serve as major obstacles to suconstrate inadequate access to care and treatment. cessful HIV testing. HIV testing strategies vary conHCV prevalence is also significant because it is linked siderably among correctional facilities and include to HIV. Both infections can be transmitted through mandatory, voluntary, and opt-out testing. However, unprotected sexual contact and injection drug use. structural barriers largely prevent prisoners from getting Additionally, HIV-positive individuals are disproportested. Fear of discrimination, lack of confidentiality, and tionately affected by viral hepatitis; about one-third of stigmatization of IDU and MSM behaviors hinder access HIV-infected persons are co-infected with hepatitis B to prevention services and HIV testing and continue to virus (HBV) or HCV. fuel the epidemic in the corrections system.

HIV in U.S. Correctional Facilities

GMHC.ORG

3

In order to address these barriers and increase HIV screening, the CDC has recommended routine opt-out HIV testing in all health care settings, including prisons and jails. Under these recommendations, HIV screening is made available as part of the standard medical evaluation and is performed unless the patient declines. The CDC recommendations also include annual testing for persons at high risk for HIV infection, but unfortunately do not require accompanying prevention counseling.

Black prisoners are 3.5 times more likely than white inmates, and 2.5 times more likely than Latino inmates, to die from AIDS-related causes.

The JUSTICE Act Without uniform prevention, testing, and treatment programs, incarcerated persons living with HIV and/ or other STIs can unknowingly infect others. Often left untreated, incarcerated persons with STIs are frequently in the more advanced stages of their disease, and once released can be even more costly for the public health system to treat. One outcome of the lack of a coordinated response to HIV is that among confirmed AIDS cases in prisons, racial minorities account for the majority. Black prisoners are 3.5 times more likely than white inmates, and 2.5 times more likely than Latino inmates, to die from AIDS-related causes.

In August 2011, Representative Barbara Lee (D-CA) introduced H.R. 2704, The Justice for the Unprotected against Sexually Transmitted Infections among the Confined and Exposed (JUSTICE) Act. This legislation would allow prisons to provide condoms to incarcerated individuals. The JUSTICE Act also calls for automatic reinstatement or re-enrollment in Medicaid for people who test positive for HIV before reentering communities. This action is of tremendous importance to public health since it would provide a comprehensive response to the spread of sexually transmitted infections in correctional facilities.

comprehensive HIV care and prevention in federal prisons on a structural level. The bill calls upon the Bureau of Prisons to take 11 concrete steps to combat HIV in prison, promote awareness, and improve medical care. All testing and medical care would be required to be strictly confidential, with penalties for any breach of confidentiality.

The Act would include HIV testing as a medical service provided with consent during intake and within three months prior to release. Testing would also be provided upon request once per year, or following high-risk exposure or upon pregnancy. Prison personnel would be instructed to encourage inmates who might be at high risk for HIV infection to get tested, and would be prohibited from using any request for testing as evidence of misconduct. Those who tested positive for HIV would have the option of “partner notification services.” Inmates would be able to refuse testing at any time, for any reason, without penalty.

Inmates would also be entitled to comprehensive medical care in a timely fashion, with confidential consultations about managing the virus. Upon release, prisons would need to provide information about where to receive treatment and care in the community, as well as 30 days’ worth of medication.

In addition, prisons would need to provide educational opportunities for inmates about modes of HIV transmission. This would involve working with a number of organizations, agencies, and wellinformed inmates to provide culturally competent and accessible presentations, written materials and audio-visual resources in multiple languages. Within one year, the Bureau of Prisons would need to report to Congress on its policies to enforce the above provisions. Within two years, and every year after, it would also need to report incidence rates of STIs and intravenous drug use.

Stop AIDS in Prison Act The Stop AIDS in Prison Act, sponsored by Representative Maxine Waters (D-CA), addresses

4

GMHC JULY/AUGUST 2014

GMHC Action Center Interview: A Report from AIDSWatch 2014

by Sarah Glasser, Community Coordinator and AVODAH Fellow, GMHC

At the end of April 2014, GMHC Action Center members and staff participated in AIDSWatch 2014, the nation’s largest annual HIV-focused grassroots advocacy event in Washington, D.C. AIDSWatch brought together over 300 grassroots activists from 27 states to call on Congress to support efforts to end the HIV/AIDS epidemic. AIDSWatch connected activists to meetings with 222 Congressional offices focused on seven policy priorities, which included the Ryan White Program, the Affordable Care Act, stable housing for people with HIV, and federal funding for HIV programs.

In addition to supporting client attendance for the big lobby day on Tuesday, April 29th, GMHC provided scholarships for two Action Center members, David Brock and Marc Antonio Chen, to attend a training session on Monday morning that included opening remarks from Douglas M. Brooks, the new and first openly HIV-positive Director of the White House’s Office of National AIDS Policy (ONAP).

David was particularly interested in legislation focused on providing comprehensive sex and HIV education in schools to prevent the continued spread of HIV among youth. Marc was focused on Housing Opportunities for People With AIDS (HOPWA) legislation because of the critical role of stable housing in treatment adherence for people living with HIV/AIDS. Marc was also interested in issues that were not included in the AIDSWatch agenda. “I found it interesting that the organizers didn’t focus on sex workers and the arrests of sex workers for carrying condoms,” he said. “We need more funding for condoms and sex education.”

In New York State, police officers have been confiscating condoms to use as evidence in sex work trials, which is a serious threat to public health because it has a chilling effect on condom usage, particularly among populations at highest risk of infection.

AIDSWatch is powerful because it builds community among people living with HIV/AIDS and provides them the opportunity to learn how to share their personal stories and experiences. It then empowers them to use those stories to advocate for change in meetings with legislators and policymakers.

As David, who lives in New York City, shared, “It was amazing for me to hear from people in other states, especially the Southern states, on homelessness and housing. That touched me the most. There

GMHC.ORG

was a lady from a southern state who talked about [HIV-positive] people living in the woods.”

Marc and David were also impressed by the diversity of people who attended.

“Women were a big part of the conference this year. Very little funding is going to women or transgender people living with HIV,” David said. “I don’t know why it has taken so long for them to recog-

From left to right: Ron Regins, Jason Hill, David Brock, Marc Antonio Chen (behind David), Monté Clarke (far back), and Alan Perez in GMHC’s Action Center meeting room, debriefing after a long and successful advocacy day in Washington, D.C.

nize women, because as long as men have had HIV, women have as well. Also, people who are transgender are standing up more for themselves.”

Marc agreed, stating that AIDSWatch had “a great balance of men, women and people from all generations. It was great networking with people from around the United States.”

On Tuesday morning, a bus full of GMHC Action Center members and other activists from AIDS Service Center, Harlem United and Housing Works arrived and joined Marc and David. Action Center founding member Alan Perez noted that “there was a lot of camaraderie” on the bus.

“We know each other and all the other activists are from the same area,” added Monté Clarke.

“We’re a nucleus.”

Unfortunately, they arrived to heavy rain.

“With all the rain and stuff, we did really well,” said Marc. “We were troopers. The Rally to End

5

SEROZERO EDITOR: JASON CIANCIOTTO ASSISTANT EDITOR: LYNDEL URBANO ASSOCIATE EDITORS: DEMETRIUS THOMAS AND SARAH GLASSER ART DIRECTOR: ADAM FREDERICKS GMHC SeroZero is published by GMHC, Inc. All rights reserved.

Noncommercial reproduction is encouraged.

GMHC SeroZero 446 West 33rd Street, New York, NY 10001 gmhc.org © 2014 Gay Men’s Health Crisis, Inc.

AIDS was cancelled, but the lobbying continued despite the rain.”

The Action Center members’ first meeting was with Congressman Charles B. Rangel, who represents Upper Manhattan and parts of the Bronx. They were particularly excited that his staff were knowledgeable about HIV/AIDS-related policies, including syringe access and housing.

“It was amazing,” shared Jason Hill. “I was impressed by his chief-of-staff. She was well-informed and interested, so much so that someone else from the office came over and started asking questions.”

“It was a privilege meeting with such a sage and august staff member,” added Ron Regins.

“Congressman Rangel is very powerful. He runs the House Ways & Means Committee.”

Action Center members then went to meet with Representative Yvette Clarke, whose district is in the center of Brooklyn. They discussed literacy, sex education, housing and healthcare services.

“She knew a lot about comprehensive care,” David added. “She was concerned about getting more comprehensive care in her district.”

Comprehensive care is valuable for people living with HIV/AIDS because it consolidates all necessary medical services in one area and allows care practitioners to communicate and collaborate.

Monté reflected, “It was a very wonderful meeting. Congresswoman Clarke is the greatest lady. She

6

kept saying, ‘Yes, yes, I’m on that committee, I introduced that legislation.’ She was the type of representative I would want in my district. She was on top of it. It was like talking to an aunt.”

Ron smiled, adding, “She was very attentive, very focused. She knew of Gay Men’s Health Crisis and she was very social. She was totally connected. We can count on her to be an ally.”

Next on the agenda was a meeting with staff from Congressman Jerrold Nadler’s office, who represents some areas in Manhattan and Brooklyn. However, two Action Center members were missing.

“At this point, Monté and I got lost,” Ron said.

“We went to the wrong building.”

The capital area is incredibly confusing and in the pouring rain it was hard to tell the buildings apart.

Ron and Monté, wet from the rain but smiling, eventually found their way to the meeting.

According to Marc, “Congressman Nadler has been dynamic with immigrant rights and everything we care about. He’s very supportive, much like Thomas Duane [from the New York State Senate] was.”

The last meeting was with staff from Congressman Jose Serrano’s office, who represents neighborhoods in the Bronx.

Alan reflected, “Jaime Guttierez, a former GMHC staff member who volunteered to come to AIDSWatch with us, was magnificent. He deserves a thank you. He really discussed Ryan White well.”

Ron added that he was impressed with Congressman Serrano’s Chief-of-Staff Adam Alpert.

“Adam was excellent, concerned and knowledgeable.

Having visited with him was a plus. He was particularly interested in HIV criminalization. Congressman Serrano even met with us and took a picture.”

Finally, after a busy day, the Action Center members walked back to the bus through the tunnels under the capital and prepared for the long ride home.

“This was a very good AIDSWatch,” reflected David. “It was a good turnout. I feel honored that I was there for both days.”

“Me too,” Marc added.

“I hope it happens again next year,” concluded David.

Ron summed up his thoughts on AIDSWatch: “I’ve been on a lot of trips. We’ve had a lot of successes and a very good year. The Action Center seems to rise to every occasion and we are stronger each year. Right now we are a very cohesive unit, putting the issues of people living with HIV/AIDS first and foremost.”

GMHC JULY/AUGUST 2014

RESEARCH NOTES

PREVENTION

(LEAVES) THINKSTOCK; (MOUNTAIN PEAK) ISTOCKPHOTO.COM/KARENMASSIER; (DOCTOR) ISTOCKPHOTO.COM/BART SADOWSKI; (JOHNS HOPKINS) ISTOCKPHOTO.COM/NANCY HONEYCUTT

Woman Controls HIV Naturally

Scientists have discovered a 33-year-old woman, diagnosed with HIV at age 19 and lupus at 27, who has developed powerful antibodies that may have controlled her virus. These findings could help with HIV vaccine development as these broadly neutralizing antibodies (BNAs) block the receptors HIV uses to latch onto human cells before infecting them. About one in five people with HIV will eventually produce BNAs but will largely do so too late: after the viral population has mutated enough to evade the antibodies’ effects. Past research has suggested that HIV BNAs come from a pool of immune cells that can also lead to autoimmune disorders such as lupus. With an eye on vaccine development, the researchers hope that their study of this woman will help expand knowledge of the multiple ways that BNAs can develop.

The study does not prove BNAs controlled the woman’s virus, nor does it suggest that those with lupus have immunity to HIV or a better prognosis than those without lupus.

TREATMENT

TasP’s Success in British Columbia

British Columbia offers solid, real-world evidence that the treatment-asprevention strategy (TasP) can successfully fight the HIV epidemic: The upswing in use of antiretrovirals (ARVs) in the Canadian province has been linked to a marked drop in new infections. Studying both HIV-related health and medication data from registries across the province covering 1996 to 2012, researchers found that as ARV use rose dramatically between 1996 and 2012 new HIV diagnoses dropped by 66 percent, from 702 to 238 cases. There was a 42 percent drop in estimated new HIV infections, from 632 to 368. Mathematical models suggest that each increase of 100 people taking ARVs led to a decrease of annual new HIV cases of 1.2 percent. Also, for each 1 percent rise in the number of people with a fully suppressed viral load as a result of ARVs, new HIV cases dropped by 1 percent.

BY BENJAMIN RYAN

CURE

No Virus After Early Start on ARVs

CONCERNS

A man who contracted HIV perhaps 10 days before starting a pre-exposure prophylaxis (PrEP) regimen and who then received full antiretroviral (ARV) treatment an estimated 18 days after infection shows no sign of the virus a year later. While he tested negative twice during the month before taking Truvada (emtricitabine/ tenofovir) as PrEP, the blood sample drawn the day he started the regimen eventually came back positive. At that point his clinical team added Prezista (darunavir), Norvir (ritonavir) and Isentress (raltegravir) to the Truvada. The man’s viral load dropped from an initial read of 220 to 120 a week after he started PrEP, and to below 40 about four weeks after infection. Since then, even highly sensitive tests, as well as biopsies, cannot detect HIV in his body. Researchers, who stress that this man is not considered cured or in viral remission at this time, intend to try taking him off ARVs in the coming months.

Dormant Cells Foil Cure Research

A laboratory at Johns Hopkins University has thus far failed in its recent quest to use cancer drugs known as HDAC inhibitors to significantly reverse the latent state of HIV-infected immune cells that are a component of the viral reservoir. Recent research setbacks suggest that HDAC inhibitors as single agents may not be powerful enough to flush HIV out of dormant cells with a latency-reversing agent— a process that could be a key component of a cure strategy. The study did yield advancements in scientific knowledge nevertheless.

The researchers developed more sensitive tests to detect reactivation of HIV. They also found that some of the individual HDAC inhibitors did increase viral RNA production by a very modest amount; as such, they hope that combinations of the drugs might yield more significant results in future research.

poz.com JULY/AUGUST 2014 POZ 39

THE POZ SURVEY SAYS Staying on Track

BY JENNIFER MORTON

DO YOU USE A REMINDER TO TAKE YOUR HIV MEDS? 45% YES 55% NO

Adherence—taking your medication as scheduled—is essential to treating HIV. Missing doses can cause drug resistance and limit your future treatment options. If you’re looking to improve your adherence, or if you’re preparing to start a new regimen, it’s important to discuss any fears or challenges you might face with your health care provider.

We asked you about your HIV adherence and what you do to make sure you take your meds on time.

IN THE PAST MONTH, HOW MANY TIMES DID YOU MISS A DOSE OF YOUR HIV MEDS?

DO YOU CARRY OR STORE YOUR MEDS IN A SPECIAL CASE? 63% YES 37% NO ADHERENCE TIP: Keep your meds next to something you

use on a daily basis like your coffeepot, your alarm clock or your toothbrush to help you remember to take them each day.

64% NEVER

18%

9%

1

2

9%

3 OR MORE

Missed several doses in a row?

Taken a double dose by mistake?

Run out of your HIV meds?

Switched your meds to improve adherence?

17% YES 83% NO

18% YES 82% NO

20% YES 80% NO

24% YES 76% NO

40 POZ JULY/AUGUST 2014 poz.com

Source: October/November 2013

(HAND) THINKSTOCK

HAVE YOU EVER…

Antonio Muñoz fought back—and won—when his bosses treated him unfairly because of his HIV status.

CK A B GHT H. I F TO AC S E L R O TO YOUR L A EG ITHIN L E W TH ARE

BY CASEY HALTER

E’VE COME A LONG WAY IN THE 30-YEAR fight against HIV/AIDS. And yet one major battle remains in our quest to live normal lives with the virus: HIV discrimination. From medical centers to prisons and employers to schools, U.S. society is still saturated with stigma and misinformation.

And this can drive people and businesses to withhold basic civil rights from the HIV-positive community.

Fortunately, people living with the virus are armed with the legal rights and tools to fight back—but only if they know how to use them.

In April 2013, a New York City jury awarded Antonio Muñoz, an HIV-positive man, nearly $500,000 in federal court for being fired from his job. The lawsuit’s defendant, a boutique hotel called The Manhattan Club, had argued that its former employee was a lazy complainer unable to perform his duties.

Muñoz argued that he was just a newly diagnosed guy trying to take care of his health. The legal system supported his claim that he was a victim of HIV discrimination.

In that aspect, Muñoz is not alone. Nearly 63 percent of HIV-positive people in a Lambda Legal survey said they had experienced HIV discrimination when dealing with the medical community. Nearly one-third of the general population believes at least one myth about HIV transmission—for example, that it can spread via a drinking glass. And a Kaiser Foundation survey found that 23 percent of Americans would be uncomfortable working with an HIV-positive employee.

Indeed, the fact that people with HIV still have their civil rights violated is no surprise. But more people, like Muñoz, are fighting back in court—and they’re winning. Have you been discriminated against? Does it warrant a lawsuit? POZ talks with the experts and looks at three different cases to help you recognize HIV discrimination and prepare for a legal battle.

The ADA guarantees equal access to: goods and services; medical care and other public facilities; privileges, such as the ability to raise and adopt children; employment, education and occupational training programs; and transportation. The ADA also protects HIV-negative people from discrimination based on the assumption they have the virus.

The ADA, however, only applies to public or private businesses that have 15 or more workers. Plus, the employer has to be aware that you have HIV—or at least some sort of medical disability—in order to be called out for HIV discrimination in court. That requires at least semi-disclosure to your employer. allows full-time employees who have worked about six months or more and who are sick (or have a loved one who is sick) to take an unpaid, job-protected leave for up to 12 weeks, while still retaining their employer’s health insurance coverage. prohibits any landlord, real estate broker or other housing authority from delegating or refusing housing based on prejudices; it is similar in legal coverage to the ADA.

(the ADA) gives federal civil rights protections to people with disabilities, allowing them equal access to all public places, services, facilities and employment opportunities. When it passed back in 1990, legislators put HIV/AIDS on the list of disabilities.

“Sometimes the clients I talk to think, ‘Well, I’m not really disabled,’” Schoettes says. “But anyone living with HIV is entitled to protection under the ADA, regardless of whether or not it’s dramatically affecting their ability to work or to function in their everyday life.” In fact, an amendSarah Frankement to the law in 2008 clarified Bowling sued a that people liv ing w ith HI V, care center that refused to take whether symptomatic or not, are in her HIVpositive father. fully covered under the law.

44 POZ JULY/AUGUST 2014 poz.com

DERO SANFORD

First things first: Learn all you can about the laws most relevant to HIV discrimination. For a primer, Scott Schoettes, a senior attorney and HIV Project national director at LGBT litigation group Lambda Legal, spells out how HIV-positive people’s rights are protected under U.S. law. (Schoettes knows his stuff. He has defended dozens of cases, including Melody Rose, an HIV-positive inmate who won a settlement in 2010 for being denied gallbladder surgery while incarcerated. He also sued the U.S. State Department for refusing to hire an HIV-positive soldier for foreign service duty in 2003, a ruling that forced them to change their policy.) Many HIV discrimination cases, Schoettes explains, are built on a combination of four federal laws:

(HIPAA) was enacted

by Congress in 1996 to help standardize insurance and health care procedures in the United States. Among other things, the law protects the privacy of your medical history and information. Under HIPAA, it is illegal for a health insurance company, doctor, co-worker or employer to disclose your HIV status to anyone.

Schoettes predicts that another law will soon be a major player: Obamacare, or the Affordable Care Act (ACA), because it bars insurers from denying coverage based on a pre-existing condition.

In fact, Lambda Legal recently fought several Louisiana insurance companies for refusing to accept Ryan White funds as payment for insurance coverage. This May, HIV advocates also sued four Florida-based health insurers for placing HIV meds in their most expensive tiers.

It’s often a challenge to recognize and prove when laws are being broken. Consider Antonio Muñoz. He was diagnosed with HIV in 2008, after about a year into his job at the hotel’s front desk. Between 2007 and 2011, he won an Exemplary Manager Award, earned several raises and got positive evaluations from supervisors. At first, Muñoz didn’t think he had to disclose. He just kept pushing along as a model employee.

However, when his health declined and his doctor prescribed Sustiva, a med that causes drowsiness and has to be taken at night, Muñoz knew he might be in trouble: He could no longer work the night shift, a position he had occasionally filled. He tried to take the pills and perform his job. But when his CD4 cell count didn’t go up, his doctor wrote a note to his employer explaining that he had a ”serious chronic medical condition” and could no longer work at night.

Muñoz should have been good to go at his job. That’s because the ADA states that employers must “reasonably accommodate” their disabled, whether that be providing a special telecommunications device for a deaf employee or, in Muñoz’s case, cutting an unhealthy shift.

When the Manhattan Club put Muñoz back on the night shift, it broke the law. When supervisors retaliated against

Tips on Filing an HIV Discrimination Lawsuit* DISCUSS IT WITH YOUR DISCRIMINATOR Don’t go straight to suing. First, bring up a formal complaint with the person or facility you believe discriminated against you. Whether that involves talking to your company’s HR person, filling out a complaint form at your doctor’s office or leaving a message on your landlord’s voice mail, it’s a key first step. Why? The record of this attempt will help you in court. Also, if your discriminator realizes the mistake and fixes it, then you’ve saved everyone a lot of time and money.

BUILD YOUR ARGUMENT Remember: You must prove you were unfairly treated and experienced a negative outcome because of it. Compile all of your evidence, including emails, phone recordings and eyewitness testimonies. Then call a legal hotline, such as Lambda Legal at 866-542-8336, or go to your local AIDS service organization for help.

MAKE A FORMAL LEGAL COMPLAINT You can file a discrimination lawsuit through many federal channels. Most complaints must be filed within 180 days, so act fast.

• For discrimination in the workplace: File a complaint with the Equal Employment Opportunity Commission (EEOC). If it feels federal law was violated, it’ll send you a “Right to Sue” letter that will allow you to file your own private case.

The EEOC may even take your case. Visit eeoc.gov/employees/howtofile.htm or call 800-669-4000 for more info.

• For discrimination in a hospital, school, prison or other public place: Take it up with the Department of Justice. Government lawyers can take action against any federally funded discriminator. The DOJ may file the lawsuit for you.

If it doesn’t, you can always hire your own legal team. Call 800-514-0301 or visit ada.gov/aids/ada_aids_complaints.htm for more info.

• For discrimination regarding housing: Go to the U.S. Department of Housing and Urban Development (HUD). Its policy is similar to the EEOC’s. Call HUD at 1-800-669-9777 or visit hud.gov/complaints for more info.

PREPARE FOR BATTLE If the government doesn’t take up your case, then find a good legal team. See if an organization will take you on pro-bono (a.k.a.: free). Try Lambda Legal, the AIDS Legal Services Project in Los Angeles, AIDS Law Project of Pennsylvania and the ACLU as well as local firms that specialize in civil rights. And know what you’re in for. An HIV discrimination lawsuit is more likely to be dismissed or settled out of court. Cases take about two-and-a-half years—not counting the appeals.

MOVE PAST IT ALL If you lose your case: You may appeal—if you have enough money, time and endurance. If you win: Congrats! But it might be a long time before you see any cash—and you will pay taxes on it. Take note: If you’re suing a place of public accommodation, only the DOJ can grant damages–if you hire a private attorney, you can only get attorney’s fees and injunctive relief. Oh, and consider sharing your story. Become an advocate against HIV discrimination.

*This sidebar contains legal information but is not legal advice. We recommend that you seek a legal expert before taking any steps toward filing a case.

poz.com JULY/AUGUST 2014 POZ 45

“After months and months of pressure and delaying tactics, I was sick a lot.” Daniels recalls. “I was nervous and having anxiety attacks. All sides of management were doing everything they could to make me look like a bad employee,” Daniels says. “Eventually, I just saw it as a losing battle, and I had to put my health above my pride and the job.” He quit—and then got educated on his legal rights.

Discrimination isn’t confined to the workplace either.

Consider this third case: Sarah Franke-Bowling, of Little Rock, Arkansas, sued Parkstone Living Center in 2009, because it refused to take care of her HIV-positive father. Her dad, the late Robert Franke, was a 75-year-old former college professor and minister who had lived with the virus nearly three decades and who had always been open about his status.

Parkstone reps believed that he posed a direct threat to the other residents and that they’d have to provide him with separate living and eating quarters, which they couldn’t afford.

Decisions based on this faulty reasoning broke both the ADA and the Fair Housing Act by denying Franke equal lodging, food and services, while ringing an obvious discriminatory alarm bell—it’s been common knowledge for decades that HIV cannot be spread through food or air. Thus requiring

Since AIDS was discovered in 1981, HIV discrimination has been part of its history, as illustrated by these milestones.

Philadelphia, starring Tom Hanks, is the first major Hollywood film to discuss AIDS and HIV discrimination.

Ryan White is refused entry to his middle school. He soon begins a major public campaign against AIDS stigma and discrimination.

1983

1985 Lambda Legal files the first HIV discrimination lawsuit; it’s for Joseph A. Sonnabend, a New York City doctor evicted from his office for treating patients with AIDS.

46 POZ JULY/AUGUST 2014 poz.com

1990

1993

1996

Congress enacts the Americans with Disabilities Act (ADA), formally prohibiting discrimination based on any disability, including HIV/AIDS.

1998

(DANIELS) BRYCE VICKMARK; (PROTESTER, GAVEL, AND CAPITOL) THINKSTOCK

Muñoz for complaining about it to human Greg Daniels sued after his resources, it made matters worse. employer failed By the end of 2011, Muñoz was fired after to accommodate needed time off. an anonymous complaint was made against him. (Interestingly, lawyers matched up the writing style of the unmarked note to his supervisor’s in a subsequent handwriting analysis in court.)

To illustrate how far the ADA’s protections go, look at the story of Greg Daniels, who wasn’t even fired from his job. He quit—and still won six figures in his 2003 lawsuit. Daniels had been working full-time for nearly three years as an outwardly HIV-positive clerk at a San Francisco CVS ProCare pharmacy.

When the business merged with another chain, it got an influx of new customers and employees. At the same time, Daniels had to take a few days off in a short amount of time.

Supervisors said he was abusing the work policy, but Daniels argued that he had vacation days and needed to see his doctor to stay healthy and employed. When Daniels got a doctor’s note explaining that he needed an extra day off every week to take better care of his HIV, CVS flat-out said no. After he complained to human resources, his managers tacitly approved a new schedule but never followed through.

(STATUE, FOLDER AND CROWD) THINKSTOCK; (OBAMA) ISTOCKPHOTO.COM/EDSTOCK

separate accommodations is an “excessive precaution,” which falls under the ADA’s umbrella of illegal discrimination.

After Franke-Bowling’s husband asked other assisted living centers in Little Rock to take Franke under their care, the family decided they had to file a lawsuit. Why? “Every single one of them said no,” she recalls. “This was bigger than we thought.”

The good news is, since the White House adopted the National HIV/AIDS Strategy in 2010, the U.S. Department of Justice has set aside a special Civil Rights Division specifically dedicated to the ADA. The DOJ has also marked all HIV discrimination cases as “priority investigations” on its list.

A few examples of such legal cases: The U.S. government sued the South Carolina Department of Corrections for separating its HIV-positive inmates into different wards in prison.

It has tracked down several schools for discrimination, and it even went after a small-town Rite Aid for saying it couldn’t give an HIV-positive man a flu shot because nurses needed “special gloves”—it then forced the store to pay the man nearly $10,000 in damages.

But figuring out when and how to file a lawsuit can get tricky. Sometimes, as in the above cases, the DOJ will take on a lawsuit pro-bono, particularly if it involves “places of public accommodation” like schools and hospitals.

Aside from the DOJ, legal advocacy teams, like the ones at Lambda Legal, the Center for HIV Law and Policy and the American Civil Liberties Union (ACLU), are a good second stop in trying to parse out where your case stands.

“We’re looking for cases that can create a good precedent,” explains Lambda Legal’s Schoettes, who took on the Franke lawsuit. “That case was important,” he says, “because the HIV epidemic is aging and we need to make sure that the people who provide services to the aging population have a better understanding of HIV.” “I didn’t realize that part of our role was to be spokespeople,” says Franke-Bowling regarding the case. “But we were willing to do that. For people who are discriminated against, they’re not just helping their cause [when they fight back], they’re helping so many more people.”

Such cases are called ”impact litigation” because they have the potential to change the course of discrimination history.

They often make court records open and the names of their

plaintiffs public to help bring awareness to the issue. Groups like Lambda Legal often choose envelope-pushing cases that the Justice Department may be reluctant to address—or cases made against the U.S. government itself.

HIV-positive people with a potential lawsuit may also hire a lawyer in the more traditional sense. That’s what Muñoz and Daniels did, and this legal option has its advantages. For one, thanks to HIPAA, HIV-positive people can keep their names confidential both when they file a case and after it goes through.

In addition, a lot of civil-rights oriented firms are willing to take on discrimination cases pro-bono too, if they think an argument is strong enough. In fact, a big part of a legal advocacy firm’s job is to refer HIV discrimination cases to private attorneys. Muñoz’s lawyer Gregory Antollino explains: “It’s always going to be private attorneys in general who are going to enforce these laws. It’s not an easy task. Most of these cases get dismissed, and many of them settle.”

Of course, as in any court case, you will have to prove you were wronged. To that end, you might need written records and people who witnessed the discrimination. Phone call recordings, emails and doctors notes can all be used as evidence.

“I had copies of everything,” says Daniels of his CVS case.

“I think I won because I kept all the important records. I am beyond organized, and I think they were surprised.”

Muñoz and Daniels both took an important step by first going to their human resources office to make a formal complaint, long before lawyers got involved. In doing so, they were able to prove, in written documentation, that their poor treatment on the job was directly related to their medical disclosure.

One last bit of advice from Muñoz: “You need to have determination and to believe in yourself.” The average HIV discrimination lawsuit, if it does actually make it into court, will take an average of two-and-a-half years. Then, both sides can appeal the case, multiple times, which can draw out the already slow process of litigation.

For Muñoz, even though he has technically won more than $500,000 in the court of law, his legal battle remains far from over. The Manhattan Club says it will appeal. That means, even if Muñoz wins again, he won’t see any of his discrimination damages until at least 2016.

Muñoz says that it’s worth the wait—and that it’s not just about the dollars. “I didn’t want to settle,” he says. “I knew I had done nothing wrong, and I wanted to tell my story.” ■

In Abbot v. Bragden, the U.S. Supreme Court set the precedent that people with HIV/AIDS, whether symptomatic or asymptomatic, are considered disabled and therefore covered under the ADA.

Rollout of the Affordable Care Act means people with HIV m can ca no longer be denied health h care for having a pre-existing condition.

2010 Congress enacts the Health Insurance Portability and Accountability Act (HIPAA), which ensures people the legal right to privacy and confidentiality regarding their medical conditions.

2014 The White House releases the first National HIV/AIDS DS Strategy. As a result, the U.S. Department of Justice puts all HIV discrimination cases—more than an 50 so far—on the fast-track as part of the policy.

STEMMING STIGMA EACH AC O OF US S CA CAN HELP FIGHT G THE FLAMES A S OF O NEGATIVE AND UNFAIR BELIEFS ABOUT HIV.

BY ROD MCCULLOM ILLUSTRATION BY LIZ DEFRAIN

THE EARLY DAYS OF AIDS WERE MARKED BY FEAR FUELED BY IGNORANCE. Thankfully, much has changed since the introduction of effective treatment in 1996. Millions of lives have been saved in the United States and around the world. Nonetheless, HIV stigma remains pervasive, even earning its own section in the National HIV/AIDS Strategy.

Although negative and unfair beliefs about HIV/AIDS aren’t as openly expressed by most people as they used to be, current beliefs are stubbornly similar to those of years ago.

For example, a 2011 Kaiser Family Foundation study found that, despite decades of education efforts, much of the public remains uncomfortable with HIV-positive people.

Advocates acknowledge that fighting stigma isn’t easy—it’s like battling the Hydra monster of Greek mythology: Chop off one head of the dragon-like serpent, and two more grow back.

Some even argue that stigma has mutated and is worse today than ever, at least among gay men, but possibly in general.

“Stigma is somewhat like smoke—you know it’s there, but it’s difficult to see and hold on to,” says David Ernesto Munar, president and chief executive officer of the Howard Brown Health Center, which serves the LGBT community in Chicago. “It’s a major driver in perpetuating the epidemic.”

Munar believes that stigma results in harm to everyone— people living with the virus, as well as those who are negative or of unknown status. As a person living with HIV, and the former head of the AIDS Foundation of Chicago, he has had a front-row seat. “People might not get the HIV testing they need,” he says. “They might lose their income, housing, family and friends.”

There are many ways to combat the illegal discrimination that results from stigma (go to page 42 to read “Defying

Discrimination” for details). However, the methods to stem stigma itself seem more elusive. Educating with one-to-one discussions perhaps remains the best, but many advocates continue to pursue more widespread methods, such as awareness campaigns.

THE MOST RECENT EXAMPLE is titled “Start Talking.

Stop HIV.” Launched in May by the Centers for Disease Control and Prevention (CDC), it encourages gay and bisexual men to communicate with their sexual partners about HIV risk and prevention strategies. It includes online and print advertisements, social media engagement and online videos.

This campaign is part of the CDC’s Act Against AIDS initiative, which includes Let’s Stop HIV Together, a general awareness campaign; Greater Than AIDS, a campaign targeting African Americans; Testing Makes Us Stronger, a campaign targeting African-American gay and bisexual men; and Reasons/Razones, a campaign targeting Latino gay and bisexual men.

The CDC’s focus on gay and bisexual men is no surprise.

Men who have sex with men (MSM), especially MSM of color, are disproportionately affected by HIV/AIDS. Further, new HIV cases among MSM are increasing as they flatten or even fall among other groups. Advocates blame HIV stigma among MSM, which they claim has created a “viral divide.”

poz.com JULY/AUGUST 2014 POZ 49

Get a few things off your chest.

Protect yourself and your partner. Talk about testing, your status, condoms, and new options like medicines that prevent and treat HIV. Get the facts and tips on how to start the conversation at cdc.gov/ActAgainstAIDS/StartTalking.

Protect yourself and your partner. Talk about testing, your status, condoms, and new options like medicines that prevent and treat HIV. Get the facts and tips on how to start the conversation at cdc.gov/ActAgainstAIDS/StartTalking.

Follow us online at:

facebook.com/StartTalkingHIV

@TalkHIV

Follow us online at:

This divide is probably the most evident on social networking apps and hookup sites. Phrases such as “DDF UB2” (short for “drug and disease free, you be too”) and questions such as “Are you clean?” have become commonplace. Many HIV-positive gay men note anecdotally that when they challenge HIV-negative men about such language (“Does having HIV make me ‘unclean’?”) the responses (“Whatever!”) are often fi lled with contempt.

“The more HIV treatments improved, the wider the viral divide became,” says advocate, author and blogger Mark S. King in his essay “The Sound of Stigma” from the June 2013 issue of POZ. “From whatever our vantage point, we have shamed and stigmatized everyone else into a corner, and the result is a community in revolt against itself.” The essay touched off a fi restorm of response, proving it hit a raw nerve among gay men.

Peter Staley, founder of AIDSmeds and a veteran activist featured in the Oscar-nominated documentary How to Survive a Plague, picked up the discussion this past February.

“HIV-related stigma is worse than ever,” he says in his entry “Gay on Gay Shaming: The New HIV War” on The Huffi ngton Post. “It breaks my heart that the worst of HIV stigma comes from my own community: gay men.”

“Stigma today isn’t about [being afraid of] casual contagion like it was in the 1980s. It’s about making a snap judgment on the moral character of the individual who is HIV positive,” says Sean Strub, founder of POZ and executive director of the Sero Project, which fights stigma and injustice with a current focus on HIV criminalization. “Today’s stigma is prejudgment and marginalization. ‘Were you going to the baths? Were you using crystal meth?’”

HIV STIGMA AMONG MSM is a hot topic, but stigma affects all groups, including women. “I’ve been living with HIV since 1993, and stigma hasn’t changed much,” says Shari

50 POZ JULY/AUGUST 2014 poz.com

facebook.com/StartTalkingHIV

@TalkHIV

From left: Two posters from the “Start Talking. Stop HIV.” campaign; Tony Award–winning actor Billy Porter in the HIV Equal campaign; two graphics from The Stigma Project campaign featuring Judy Garland as Dorothy in The Wizard of Oz and Truvada as pre-exposure prophylaxis (PrEP); Byanca Parker in the No Shame campaign

Margolese, a research consultant in Ontario, Canada, and a peer educator with the Positive Women’s Network (PWN), an international group. “People always want to know how you became positive. There has been a movement to define ‘good’ and ‘bad’ HIV-positive people.”

In 2013, PWN-USA released the fi ndings of a study on gender-based stigma and violence. Margolese was one of the co-authors. Seventy-two percent of positive women surveyed experienced intimate-partner violence, as opposed to a quarter of all women. Seventy percent had been sexually assaulted, compared with 20 percent of all women. Many women also expressed changes in perceptions of their body image and sexual desirability.

“Stigma toward HIV-positive women presents itself in many ways, including perceptions that you cannot have children or sex,” says Byanca Parker, a 21-year-old activist from Dallas. Born with HIV, she uses social media to raise awareness. Parker also has appeared in No Shame About Being HIV Positive, a grassroots campaign. Although she is dating a man who accepts her serostatus, she has experienced rejection because of it. She sums it up: “It hurts.”

“Stigma has changed only slightly,” says advocate, blogger and motivational speaker Maria Mejia from Miami.

Positive for 25 years, she seroconverted when she was 16.

At fi rst, she would tell people it was lupus or leukemia instead of facing the HIV stigma. “I’m also a uterine cancer survivor diagnosed in 2003, but there is a difference,” she says. “If you tell someone ‘I have cancer’ you are more likely to get compassion.”

Later this year, a PWN-USA campaign will tackle HIV stigma directed at women. “It will seek to reframe the narrative on HIV and intersectional issues in the media by engaging women with HIV and allies,” says Olivia Ford, communications director of PWN-USA. “The goal is to produce community-driven messaging, resources and tools,

(CDC POSTERS) COURTESY OF CDC; (HIV EQUAL CAMPAIGN) COURTESY OF HIV E EQUAL

Make conversation before you make out.

(STIGMA PROJECT CAMPAIGNS) COURTESY OF THE STIGMA PROJECT; (NO SHAME CAMPAIGN) COURTESY OF NO SHAME

cultivate creative partnerships with media outlets and target key media makers.”

DETERMINING HOW BAD STIGMA is today isn’t just of interest for individuals with HIV, but also for public health.

“Stigma is a major factor to accessing HIV treatment, but it must be quantified to develop a stronger response,” says Laurel D. Sprague, research director of the Sero Project.

As a result, the U.S. People Living with HIV (PLHIV) Caucus is implementing a nationwide questionnaire on stigma. The U.S. PLHIV Stigma Index is the domestic version of the global PLHIV Stigma Index, which has been completed by people living with the virus in more than 50 countries.

The U.S. survey, which began its rollout this past March, quantifies levels of stigma. It also seeks to quantify stigma within the community with questions such as “Have you been discriminated against by other people who are HIV positive?” As Sprague notes: “If we can’t support each other as a community, how do we come together for any kind of collective action?”

Additional surveys have shown stigma remains a significant barrier to care and treatment. A 2009 Lambda Legal study shows that 63 percent of HIV-positive LGBT people experienced discrimination from health care professionals. Other times, the stigma keeps people from even seeking medical care.

“Let’s say you’re a black gay man living in a community of lower socioeconomic status,” says Terrance Moore, director of health policy at the National Alliance of State & Territorial AIDS Directors (NASTAD). “You could be very concerned that someone is going to see you walk into an HIV testing facility, so you may not access that test.” Similarly, you might not want to be seen taking meds, so you skip doses—which can increase your viral load and the risk of transmitting HIV. These health issues aren’t confined to HIV stigma. NASTAD with support from the MAC AIDS Fund is quantifying stigma faced by black and Latino gay and bisexual men in public health practices. The data suggests that health centers in the South and Midwest convey “high levels” of stigma. As Moore points out, these regions are also likely to be against gay marriage and the expansion of Medicaid benefits. “All of these things are a factor when a person seeks treatment.”

WHAT CAN YOU DO in the fight against HIV stigma? Most advocates would probably agree there is no magic bullet. However, there are smaller steps that individuals can take to help combat stigma. Talking one-to-one with people in your life about the virus is a great place to start.

Although some advocates have their doubts about the effectiveness of awareness campaigns, grassroots networks still have faith. Participating in these campaigns, by putting your face in a public service announcement or just by sharing the campaigns on social media, is something we all can at least consider. While the CDC campaigns often recruit from the community, the grassroots campaigns defi nitely depend on community support. New stigma campaigns seem to be born every day, but here is a sampling of some recent efforts.

HIV Equal was launched in 2013 by World Health Clinicians, an international group based in Connecticut and Zimbabwe. The campaign was created by Project Runway star Jack Mackenroth with celebrity photographer Thomas Evans. Volunteers are photographed wearing an “HIV=” sticker. Their tagline: “Everyone has an HIV status. We’re all HIV equal.”

Also in 2013, Kevin Maloney, a social media consultant and digital activist, launched the No Shame campaign, which features not only Byanca Parker but more than 500 people on Facebook. He launched his fi rst campaign, Rise Up to HIV, after he was diagnosed with HIV in 2010.

The Stigma Project was launched in 2012 by friends Chris Richey, a marketing executive diagnosed with HIV in 2010, and Scott McPherson, the HIV-negative creative director at Here Media, which publishes LGBT magazines such as Out, The Advocate and HIV Plus. The Stigma Project creates graphics that deliver HIV messaging to younger people for sharing on social media. Their logo—a plus and minus sign together—embodies their slogan: HIV neutral.

Whether you join a campaign or start one of your own, getting the word out about HIV/AIDS is key. “We need to be able to share information and awareness,” says Duane Cramer, an HIV-positive photographer who has worked on the Greater Than AIDS and Testing Makes Us Stronger campaigns. “It normalizes the conversation.” ■

poz.com JULY/AUGUST 2014 POZ 51

HEROES

BY CASEY HALTER R

When Catherine Wyatt-Morley, a married mother of three from Tennessee, was diagnosed with HIV in 1994, she remembers facing debilitating stigma from almost everyone in her life. After her husband died of AIDS-related complications, she was given her “death date” and told to get her affairs in order.

“There wasn’t anything in my community at the time that addressed me as a heterosexual, African-American woman living with HIV,” Wyatt-Morley says. So, she plugged into the burgeoning national positive women’s movement. Then, from a bedroom in her Nashville home, she launched a nonprofit AIDS service organization, WOMEN (an acronym for Women on Maintaining Education and Nutrition).

Nearly 19 years later, Ms. Catherine—as everyone refers to her—is CEO of the group and the author of AIDS Memoir: Journal of an HIVPositive Mother. As such, she’s one of the most powerful female advocates for women living with HIV in the Deep South today.

Through WOMEN, Ms. Catherine has helped scores of HIV-affected families get access to food, health care, HIV testing and support through a wide web of services. She has also traveled the globe to empower HIV-positive women in places like Africa, China and Poland.

Today, she’s looking once again to change the way HIV care is provided in her community, with a new project-in-the-works: WOMEN’s HOUSE, a university-style campus where newly diagnosed women will be able to come for an intensive course on all things HIV. “WOMEN’s HOUSE is my main drive,” says Ms. Catherine, adding that the name is short for “Home of United Self-Empowerment.”

Though still ironing out the details (and the funding), she believes the project will become one of the most holistic models of care offered to families dealing with HIV today. She plans to bring her network of doctors, case managers, teachers, inspirational speakers, family counselors and other HIV experts to the 30-acre, rural property, located about an hour outside of WOMEN’s headquarters in downtown Nashville. While at the HOUSE, they will help both on- and off-campus students learn how to live healthy with HIV and stay that way.

“We’re taking the lessons we’ve learned over the course of 20 years to develop the framework and infrastructure of this facility,” says Ms. Catherine, who already maintains a waiting list for the first class.

Researchers are interested too. They’ll be looking at the project as a case study for expanding HIV services in the future. In short, Ms. Catherine says, “WOMEN’s HOUSE will change the landscape of HIV for women.”

52 POZ JULY/AUGUST 2014 poz.com

HOLLIS BENNETT

Catherine’s House

SURVEY

7

Do you think PrEP will help reduce the number of new HIV infections each year?

❑ Yes ❑ No 8

Do you think there is stigma attached to taking PrEP?

❑ Yes ❑ No

PrEP COURSE

9

❑ May cause drug resistance ❑ Side effects of the drug ❑ People will misuse it and not take it as directed ❑ Sexually transmitted infections will increase ❑ Condomless sex will increase ❑ People who need it will not be able to afford/access it ❑ Less money and focus on other prevention efforts ❑ Less money and focus on cure research ❑ Other (please specify): ________________________________ ❑ I have no concerns about PrEP

The Centers for Disease Control and Prevention (CDC) recently issued new guidelines for the use of Truvada as pre-exposure prophylaxis, or PrEP, as a way for HIV-negative people to reduce their risk of infection. POZ wants to know your thoughts about PrEP and its use as a prevention tool.

1

How knowledgeable are you about PrEP?

❑ Very knowledgeable ❑ Somewhat knowledgeable ❑ Not at all knowledgeable 10 2

Based on your knowledge of PrEP, do you support its use as a prevention tool for HIV?

11 If you are HIV-positive, would you recommend PrEP to your HIV-negative sexual partners?

12

❑ Yes ❑ No ❑ I’m not HIV positive Would you recommend PrEP to HIV-negative friends or family members?

❑ Yes ❑ No ❑ Depends on the person

GETTY IMAGES/BLOOMBERG

5

14

What is your sexual orientation?

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):___________________

Do you know anyone currently taking PrEP?

Do you think PrEP should be covered by all insurance plans?

❑ Yes ❑ No

What is your gender?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other

❑ Yes ❑ No 6

What year were you born?__ __ __ __

❑ Male ❑ Female ❑ Transgender ❑ Other 13

4

Are you aware of post-exposure prophylaxis, or PEP, as a way of preventing HIV after exposure?

❑ Yes ❑ No

❑ Yes ❑ No 3

What (if any) are your concerns about PrEP? (Check all that apply.)

15

What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #197, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424