POZ October/November 2018

A SMART+STRONG PUBLICATION OCTOBER/NOVEMBER 2018 POZ.COM $3.99

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Charles in Charge

How one man turned his HIV story into a starring role Charles Sanchez, creator of the web series Merce

What is BIKTARVY®?

BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements.

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about BIKTARVY? BIKTARVY may cause serious side effects: } Worsening of hepatitis B (HBV) infection.

If you have both HIV-1 and HBV and stop taking BIKTARVY, your HBV may suddenly get worse. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to monitor your health.

Who should not take BIKTARVY? Do not take BIKTARVY if you take: } dofetilide } rifampin } any other medicines to treat HIV-1

What are the other possible side effects of BIKTARVY? Serious side effects of BIKTARVY may also include: } Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. } Kidney problems, including kidney failure.

Your healthcare provider should do blood and urine tests to check your kidneys.

If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY. } Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death.

Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. } Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (5%), and headache (5%). Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking BIKTARVY? } All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. } All the medicines you take, including prescription and over-the-counter medicines, antacids, laxatives, vitamins, and herbal supplements. BIKTARVY and other medicines may affect each other. Keep a list of all your medicines and show it to your healthcare provider and pharmacist, and ask if it is safe to take BIKTARVY with all of your other medicines. } If you are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking BIKTARVY. } If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Ask your healthcare provider if BIKTARVY is right for you.

Please see Important Facts about BIKTARVY, including important warnings, on the following page.

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Get HIV support by downloading a free app at MyDailyCharge.com

KEEP ASPIRING.

Because HIV doesn’t change who you are.

BIKTARVY is a 1-pill, once-a-day complete HIV-1 treatment for adults who are either new to treatment or whose healthcare provider determines they can replace their current HIV-1 medicines with BIKTARVY.

BIKTARVY does not cure HIV-1 or AIDS. BIKTARVY.COM

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IMPORTANT FACTS

This is only a brief summary of important information about BIKTARVY® and does not replace talking to your healthcare provider about your condition and your treatment.

(bik-TAR-vee) MOST IMPORTANT INFORMATION ABOUT BIKTARVY BIKTARVY may cause serious side effects, including: • Worsening of hepatitis B (HBV) infection. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults.

It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements.

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains: • dofetilide • rifampin • any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY Tell your healthcare provider all your medical conditions, including if you: • Have or have had any kidney or liver problems, including hepatitis infection.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-thecounter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

• Ask your healthcare provider or pharmacist about medicines that interact with BIKTARVY.

POSSIBLE SIDE EFFECTS OF BIKTARVY BIKTARVY can cause serious side effects, including: • Those in the “Most Important Information About BIKTARVY” section.

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

• Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

• Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

• The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (5%), and headache (5%).

These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

HOW TO TAKE BIKTARVY Take BIKTARVY 1 time each day with or without food.

GET MORE INFORMATION • This is only a brief summary of important information about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

• Go to BIKTARVY.com or call 1-800-GILEAD-5.

• If you need help paying for your medicine, visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, DAILY CHARGE, the DAILY CHARGE Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies.

Version date: February 2018 © 2018 Gilead Sciences, Inc. All rights reserved. BYVC0047 06/18

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CONTENTS

EXCLUSIVELY ON

POZ.COM

Jesús Guillén started a group on Facebook for long-term survivors.

POZ STORIES

REAL PEOPLE, REAL STORIES Together, our stories can change the way the world sees HIV/AIDS. They inspire others in the fight and break down the shame, silence and stigma surrounding the disease.

Go to poz.com/stories to read the experiences of others like you and to submit your own story.

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#ADVOCACY

COVER: BILL WADMAN; THIS PAGE: (GUILLÉN) ANGELA DECENZO; (TYPEWRITER; GAVEL/BOOKS AND BARBED WIRE) ISTOCK

MAKE A DIFFERENCE Fighting against HIV/AIDS has always been a struggle. Much work remains for us to end the epidemic.

POZ encourages you to get involved in advocacy. Visit poz.com/advocacy to learn the latest news and to see how you can make a difference in the fight.

D

#CRIMINALIZATION FIGHT HIV STIGMA

Opinions still vary on whether criminal law should apply to HIV disclosure, exposure and transmission.

However, there is a growing consensus to make laws reflect current science. Go to poz.com/ criminalization for more on how you can get involved in reform efforts.

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

30 ROLE OF A LIFETIME Charles Sanchez’s dramatic HIV journey inspired his web series, Merce. BY TRENT STRAUBE 36 CALCULATED RISK Understanding the connections between sex work and HIV. BY CAMERON GORMAN 44 PICKING UP THE PIECES The impact of Hurricane Maria on HIV. BY ROD McCULLOM 5 FROM THE EDITOR

18 SPOTLIGHT

6 POZ Q+A

23 EVERYDAY

Ten years gone

Peter Perkowski, legal and policy director of OutServe-SLDN, reflects on challenges faced by service members living with HIV.

8 POZ PLANET

Provincetown’s AIDS memorial • ACT UP protests two AIDS-themed art exhibits • a “milestone” in fighting HIV criminalization • no AIDS 2020 in Trump’s USA • FX’s Pose and GMHC’s Latex Ball serve HIV realness

16 VOICES

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

In “Wake-Up Call,” Charles Lyons of the Elizabeth Glaser Pediatric AIDS Foundation analyzes data from a UNAIDS report, and in “The Midterms,” AIDS United reminds us that elections this fall are about a lot more than seats in Congress.

The buzz on AIDS 2018

Milestones in the epidemic

24 CARE AND TREATMENT

Major study validates “U=U” • FDA approves Janssen’s Symtuza • Zepatier zaps acute hepatitis C in eight weeks • PrEP tied to HIV decline

29 RESEARCH NOTES

A promising HIV vaccine • update on Merck’s doravirine • cutting-edge method of gene editing • global HIV funding

48 POZ HEROES

Jesús Guillén tested HIV positive shortly after moving to the United States from Mexico in 1984. Today, he speaks out for other long-term survivors.

POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for an 8-issue subscription) by Smart + Strong, 212 West 35th Street, 8th Floor, New York, NY 10001. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 231. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, NY 10001. Copyright © 2018 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and POZ® are registered trademarks of CDM Publishing, LLC.

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FROM THE EDITOR

EDITOR-IN-CHIEF

ORIOL R. GUTIERREZ JR. MANAGING EDITOR

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Ten Years Gone

I

T WAS 10 YEARS AGO, IN the October/November 2008 print issue of POZ, that I wrote my first feature story for the magazine as the new deputy editor.

“Coming Out Again” was my personal story of disclosing twice to my family—first about my being gay, second about my living with HIV. So much has changed in my life since then. Not surprisingly, on the one hand, since a decade is a long time for anyone.

That said, on the other hand, I’m quite surprised at just what a ride these years have been. Despite the difficulties, telling my truth allowed me to deepen my ties with colleagues, friends and family.

As a gay Cuban American growing up in New York City, I never imagined that my story would turn out as well as it has, so far. I believe our current cover subject, Charles Sanchez, can relate. He’s from Phoenix, but Charles has lived in New York City for decades. As a gay Mexican American, he embraces all his identities, including being a person living with HIV. Charles has combined his acting skills and activism to create a musical comedy web series titled Merce. He stars as the eponymous main character, who is HIV positive and has a lust for life. The first season of the web series was so well received that Charles was able to raise enough funding to film a second season.

The new episodes include cameos from HIV activists like Shawn Decker, Damon Jabobs, Mark S. King and many others. Go to page 30 to read more about Merce the series and Charles the man, who in 2018 celebrates his 50th birthday as well as his 15th anniversary of testing HIV positive.

This issue of POZ also commemorates another anniversary: the one-year mark after Hurricane Maria hit the Caribbean.

Many islands were affected, but Puerto Rico by far suffered the worst damage— and, by any measure, is still suffering greatly. In the October/November 2017

print issue, our cover story was about protecting the progress Puerto Rico had made against HIV. We finished that story long before Maria was forecast. The article posted on POZ.com just as the hurricane made landfall.

We wanted a redo, so once again, we asked POZ contributing writer Rod McCullom, who wrote the 2017 article, to find out what life is like for people living with HIV in Puerto Rico.

Unfortunately, the aftermath of the hurricane has been difficult. Go to page 44 for more.

In honor of National Latinx AIDS Awareness Day, which is observed every year on October 15, this special issue of POZ spotlights the efforts of Latinos fighting HIV. Long-term survivor Jesús Guillén is another great example.

After immigrating to the United States from Mexico in 1984, he tested HIV positive a year later. He has overcome many obstacles since then. In the process, he has become a POZ hero. Go to page 48 for more.

To mark Veterans Day, which is observed annually on November 11, our POZ Q&A in this issue highlights the work of OutServe-SLDN, a nationwide network of LGBT military personnel. We spoke with the organization’s legal director, Peter Perkowski. Go to page 6 to read about the group’s participation in lawsuits defending service members living with HIV who are facing discharges because of Trump administration policies.

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 OCTOBER/NOVEMBER 2018 POZ 5

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

OutServe-SLDN assists military living with HIV who are facing more challenges to serving their country.

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ETER PERKOWSKI IS A LAW YER WHO WEARS MANY HATS. His current role is legal and policy director for OutServe-SLDN. The group represents the U.S. LGBT military community as well as military living with HIV. He had previously served on the board of directors of OutServe-SLDN and its predecessor, Servicemembers Legal Defense Network. He sets and implements the strategic direction of OutServe-SLDN’s legal work and undertakes direct representation of some of its neediest clients.

In addition to his work for OutServe-SLDN, Perkowski serves as chair of the board for APLA Health. He also held that position for its predecessors, AIDS Project Los Angeles and APLA Health & Wellness. He is also a director of MPact, formerly known as The Global Forum on MSM & HIV. He is the founder of Perkowski Legal, PC, a private practice serving businesses and individuals in the creative and cultural industries. He has two decades of experience in intellectual property, business litigation and immigration matters. His law degree is from George Washington University Law School.

Please describe the two HIV-related cases that OutServe-SLDN and Lambda Legal are currently working on together.

The first case is Harrison v. Mattis. The plaintiff is an enlisted man named Nick Harrison. [James N. Mattis is the current United States Secretary of Defense.]

Harrison is a sergeant, a noncommissioned officer, who wants to move from the enlisted ranks into the [commissioned] officer ranks. Specifically, he wants to be a JAG [Judge Advocate General’s Corps] officer, and the current regulations prevent him from doing so because he has HIV.

6 POZ OCTOBER/NOVEMBER 2018 poz.com

OutServe-SLDN and Lambda Legal are counsel of record in that case. OutServe-SLDN is also an organizational plaintiff, which is an entity advocating for its members. Essentially, we sue on behalf of our members. By naming us as an organizational plaintiff in this case, we are representing our members who are living with HIV. Currently, people living with HIV are not allowed to join the military. However, if you test HIV positive while in the military you can continue to serve.

In the Harrison case, the regulation that applies to people trying to join also technically applies to [enlisted] people who are trying to commission. This case is solely an issue of equal protection.

The second case is Doe v. Mattis .

The plaintiff is an anonymous Army cadet at West Point [the United States Military Academy]. He was originally enlisted, so when he graduated from the academy and was set to commission he also was not allowed to do so because he has HIV. His period of enlistment had expired

ISTOCK

STRONGER TOGETHER

by the time he graduated, so he became a cadet. As a result, the same regulation that I just described about commissioning as an officer applied to Doe. We argue in the case that retention standards should have applied to him, which means that he should have been allowed to serve as an officer.

We’ll be adding a plaintiff to the Doe case, a Navy midshipman who was separated under similar circumstances.

Looking ahead in these cases, we haven’t actually directly challenged the regulations that prevent people living with HIV from enlisting. Maybe having the new plaintiff will allow us to do that, so that’s something I’m sure we’ll want to take on eventually.

These cases are happening in the wake of the new Trump administration policy commonly known as “Deploy or Get Out.” Can you elaborate?

COURTESY OF PETER PERKOWSKI

The policy directs the Pentagon to discharge those who cannot be deployed overseas for more than 12 consecutive months. Since those who test HIV positive while serving are already classified as nondeployable, that means they’re all now threatened with discharge.

However, there have been some exceptions to being nondeployable in the Navy that allow you to deploy on the ship or some foreign bases. I’ve also seen some examples in the Air Force where airmen were classified as limited deployable, but they’re still not worldwide deployable. Since the new policy refers to worldwide deployability, they technically could be facing discharge.

For next steps, I would expect the government to oppose our motion to halt implementation of this new policy.

They’ve also stated to us that they intend to move to dismiss the complaint, so the courts will decide on all those motions. Hopefully, we will prevail.

In addition to these concerns, what are other issues facing service members living with HIV?

The legal status currently for service members living with HIV is precarious.

I’ve represented soldiers and airmen who were subject to court martial or administrative separation because of the virus.

Everyone who gets HIV while serving is subject to what’s called a preventive counseling order, which we call the safersex order. It says you have to inform potential partners of your HIV status before engaging in sexual activity and you have to use condoms or some other barrier to prevent the exchange of bodily fluids.

The service branches differ in the language used, but those are the consistent provisions of the safer-sex order. Those requirements are without regard to the medical condition of either party.

For example, service members who are undetectable, meaning they can’t transmit the virus, who fail to comply with either of those provisions are subject to a court martial for either failure to follow an order or sometimes assault.

One of the cases I had was an air-

Peter Perkowski

ing, which would be an assault.

We managed to convince the judge to hear expert testimony about the risk of HIV being essentially zero in this case.

The jury acquitted on the assault charge, which is the worst of the charges. The jury convicted on the failure to follow an order, but they imposed no punishment.

Six months later, the airman’s commander went through with administratively separating him for what was called misconduct, including the alleged misconduct that he was acquitted on.

His commander granted clemency on the charge that he was convicted on, but he was still kicked out. He doesn’t have a record, and yet here he is jobless because somebody claimed not to see his HIV status on his Grindr profile.

The safer-sex order is something that

“The legal status currently for service members living with HIV is precarious.”

man who met another man on the gay dating app Grindr. The airman had listed his HIV-positive status on his Grindr profile. The accusing witness claims not to have seen that disclosure on the app and that the airman did not disclose his status vocally before sex.

They used condoms. The airman is undetectable and was the receiving partner of anal sex, so there’s zero possibility of any transmission of the virus.

Nonetheless, the airman was brought up on a court martial with two charges.

One charge was for failure to follow the safer-sex order, although arguably he did follow it by putting his HIV status on his Grindr profile. The other charge was for assault because under military precedents the mere fact of failing to say you have HIV would negate any consent to sexual activity by the other party. So that is considered unconsented touch-

we’ll definitely want to find a way to challenge moving forward as a preventive measure that’s far out of date and not reflective of current medical science.

Unfortunately, this Grindr case isn’t unique. I’ve seen others that were worse.

What keeps you motivated to continue in the fight against the virus?

I’ve been living with HIV for 20 years, so I have a personal perspective. But beyond that, what drives me to stay in this work is my desire for justice.

Apart from my current role on the OutServe-SLDN staff, I was a longtime board member and a volunteer. A board member I went to law school with kind of recruited me.

So even if I didn’t have the virus, these topics would outrage me. Having the virus just makes it all that more meaningful. Q

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POZ PLANET

BY TRENT STRAUBE

Sculptor Lauren Ewing designed the monument.

SEASIDE REMEMBERING Provincetown’s AIDS memorial “stops one ocean moment in time.”

8 POZ OCTOBER/NOVEMBER 2018 poz.com

and narratives. “It stops one ocean moment in time,” she says. “As a physical object, it will endure even with sea level rise on this fragile peninsula.”

The memorial’s top resembles the surface of the ocean. The word remembering is carved into two sides. Another side’s inscription describes the memorial as a “horizontal monument” that’s “a reminder of the lives lost to AIDS and the humanitarian achievements of the caregivers who responded to the crisis.…

In 1983 the Provincetown AIDS Support Group opened its doors to hundreds of people living with AIDS who came here seeking assistance and treatment. Here they found open minds, big hearts and an interest in their well-being. Provincetown’s commitment to being a caring

community continues today.”

On the remaining side, lines by local poets combine to create this text: Steve’s / holding Jerry, though he’s already gone, / Marie holding John, gone, Maggie holding / her John, gone, Carlos and Darren / holding another Michael, gone, and I’m holding Wally, who’s going. * Transcendence might be the term Emerson would lend it. / What I’m trying to say is that it wasn’t lonely. * Look: I am building absence / out of this room’s air * We are all made of / our own people laying names on the ground * Most of it happened without music, the click of the spoon from the kitchen, / someone talking, somebody sleeping / Someone watching somebody sleep.

BOTH IMAGES: COURTESY OF LAUREN EWING

Long before the first cases of AIDS were reported in the early 1980s, Provincetown, Massachusetts, was a fabled vacation spot for the then-underground LGBT community. Hit hard by the epidemic, the Cape Cod community offered respite and comfort to people who were dying of and living with HIV. This summer, tourists in Ptown, as it is affectionately called, had a new site to visit: the Provincetown AIDS Memorial.

Designed by sculptor and installation artist Lauren Ewing, who lives part-time in Ptown, the memorial stands 3 feet tall and 9-by-9-feet square; it’s made of nearly 17 tons of carbon gray quartzite.

“It is a unique physical object that is polyvocal,” Ewing tells POZ, meaning that the memorial includes many voices

“DANGEROUS COMPLACENCY”

(ACT UP PROTESTERS) COURTESY OF ACT UP NY/MICHELLE WILD; (WOJNAROWICZ ARTWORKS) COURTESY OF THE WHITNEY MUSEUM OF AMERICAN ART

Why ACT UP protested two AIDS-themed art exhibits at the Whitney Some visitors to the Whitney Museum of American Art in New York this summer got an unexpected eyeful: members of AIDS activist group ACT UP protesting two AIDS-related shows.

The protesters targeted History Keeps Me Awake at Night, an exhibition of artwork by David Wojnarowicz, a former member of ACT UP who died of AIDS complications in 1992 at age 37.

The museum describes Wojnarowicz as a “queer” artist whose subject was “the outsider” and whose work—spanning film, photography, painting and more—often directly addressed the AIDS epidemic. ACT UP also protested the show An Incomplete History of Protest, which features protest art spanning the 1940s to 2017, including a room devoted to HIV/AIDS-themed videos, posters, artworks and more.

So what’s the problem? Protesters say the exhibitions historicize the epidemic. In other words, they fail to connect their subject matter to today’s epidemic and they keep relevant, contextual information from viewers. According to an ACT UP (AIDS Coalition to Unleash Power) statement, Clockwise from top: its members also hoped protesters; works by David Wojnarowicz: to draw attention to Untitled (One Day This the lack of education Kid…), Americans Can’t and funding in the fight Deal with Death and against today’s epiSelf-Portrait of David demic. To make their Wojnarowicz point, protesters stood next to specific works of art and held up contemporary news articles about HIV; these articles were laid out to resemble the museum labels that identify artworks on display.

The Whitney responded that it did in fact include information about the current crisis in related programing and talks. “We completely agree that the AIDS crisis is not history,” its statement read.

ACT UP explains that its art protests “are fundamentally about what has been described as ‘dangerous complacency’ by numerous HIV experts. We use instances of complicity to call attention to the complicity of society in general. Any article about this action that does not primarily focus on how serious the HIV crisis continues to be, however wellintentioned, reproduces the Whitney’s error in judgment.”

poz.com OCTOBER/NOVEMBER 2018 POZ 9

IMPORTANT SAFETY INFORMATION WHAT IS THE MOST IMPORTANT INFORMATION I SHOULD KNOW ABOUT SYMTUZA™?

SYMTUZA™ can cause serious side effects including: • Worsening of hepatitis B virus infection. Your healthcare provider will test you for hepatitis B virus (HBV) before starting treatment with SYMTUZA™. If you have HBV infection and take SYMTUZA™, your HBV may get worse (flare-up) if you stop taking SYMTUZA™. o Do not stop taking SYMTUZA™ without first talking to your healthcare provider. o Do not run out of SYMTUZA™. Refill your prescription or talk to your healthcare provider before your SYMTUZA™ is all gone. o If you stop taking SYMTUZA™, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection or give you a medicine to treat your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking SYMTUZA™.

• Change in liver enzymes. People with a history of hepatitis B or C virus infection or who have certain liver enzyme changes may have an increased risk of developing new or worsening liver problems during treatment with SYMTUZA™. Liver problems can also happen during treatment with SYMTUZA™ in people without a history of liver disease.

Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with SYMTUZA™.

• Severe liver problems. In rare cases, severe liver problems can happen that can lead to death. Tell your healthcare provider right away if you get these symptoms: o Skin or the white part of your o Nausea eyes turn yellow o Vomiting o Dark “tea-colored” urine o Stomach area pain o Light-colored stools o Loss of appetite for several days or longer SYMTUZA™ may cause severe or life-threatening skin reactions or rashes which may sometime require treatment in a hospital. Call your healthcare provider right away if you develop a rash. Stop taking SYMTUZA™ and call your healthcare provider right away if you develop any skin changes with symptoms below: • Fever • Blisters or skin lesions • Tiredness • Mouth sores or ulcers • Muscle or joint pain • Red or inflamed eyes, like “pink eye” (conjunctivitis) Who should not take SYMTUZA™?

• Do not take SYMTUZA™ with any of the following medicines: alfuzosin, carbamazepine, cisapride, colchicine (if you have liver or kidney problems), dronedarone, elbasvir and grazoprevir, ergot-containing medicines (such as: dihydroergotamine, ergotamine tartrate, methylergonovine), lovastatin or a product that contains lovastatin, lurasidone, oral midazolam (when taken by mouth), phenobarbital, phenytoin, pimozide, ranolazine, rifampin, St. John’s wort (Hypericum perforatum) or a product that contains St. John’s wort, sildenafil when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin, or triazolam.

• Serious problems can happen if you take any of these medicines with SYMTUZA™.

Before taking SYMTUZA™, tell your healthcare provider about all of your medical conditions, including if you: • have liver problems (including hepatitis B or hepatitis C), have kidney problems, are allergic to sulfa (sulfonamide), have diabetes, have hemophilia, or have any other medical condition.

• are pregnant (if you become pregnant while taking SYMTUZA™), or plan to become pregnant. It is unknown if SYMTUZA™ will harm your unborn baby. o SYMTUZA™ should not be used during pregnancy.

• are breastfeeding or plan to breastfeed. Do not breastfeed if you take SYMTUZA™.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with SYMTUZA™. Keep a list of your medicines to show your healthcare provider and pharmacist.

Do not start taking a new medicine without telling your healthcare provider.

HOW SHOULD I TAKE SYMTUZA™?

• Take SYMTUZA™ 1 time a day with food.

WHAT ARE THE POSSIBLE SIDE EFFECTS OF SYMTUZA™?

SYMTUZA™ may cause serious side effects including: • See “What is the most important information I should know about SYMTUZA™?”

• Immune system changes can happen in people who start HIV medications.

• New or worse kidney problems, including kidney failure. o Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking SYMTUZA™.

• Too much lactic acid in your blood (lactic acidosis). o Too much lactic acid is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

• Diabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including SYMTUZA™ can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or if you start urinating more often while taking SYMTUZA™.

• Changes in body fat can happen in people taking HIV-1 medications.

• Increased bleeding can occur in people with hemophilia who are taking SYMTUZA™.

The most common side effects of SYMTUZA™ are: Diarrhea, rash, nausea, fatigue, headache, stomach problems, and gas.

These are not all of the possible side effects of SYMTUZA™.

Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088. You may also report side effects to Janssen Products, LP at 1-800-JANSSEN (1-800-526-7736).

Please see full Product Information, including Boxed Warning for SYMTUZA™. © Janssen Therapeutics, Division of Janssen Products, LP 2018 07/18 cp-60835v1

cp-62077v1

WHAT IS SYMTUZA™?

SYMTUZA™ is a prescription medicine that is used without other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have not received anti-HIV-1 medicines in the past, or • when their healthcare provider determines that they meet certain requirements.

HIV-1 is the virus that causes Acquired Immune Deficiency Syndrome (AIDS).

DON’T RISK RESISTANCE. TAKE THE KNOW YOUR RISK QUIZ—visit SYMTUZA.com/Quiz

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NEW HIV TREATMENT

STAY YOU

BE RESILIENT

Your resilience matters. So does your HIV treatment.

It’s important to take your HIV medication every day, because missing even a few doses may lead to drug resistance and may cause it to stop working.

SYMTUZA™ is a treatment with a high barrier to drug resistance to help you keep fighting HIV with just one pill a day.

Ask your doctor about

Please see the accompanying Important Safety Information and Brief Summary, including Boxed Warning for SYMTUZA™ on following page.

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What is SYMTUZA™ Used For? SYMTUZA™ is a prescription medicine that is used without other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have not received anti-HIV-1 medicines in the past, or • when their healthcare provider determines that they meet certain requirements.

HIV-1 is the virus that causes AIDS (Acquired Immune Deficiency Syndrome).

It is not known if SYMTUZA™ is safe and effective in children under 18 years of age.

What is the most important information I should know about SYMTUZA™?

SYMTUZA™ can cause serious side effects including: • Worsening of hepatitis B virus infection. Your healthcare provider will test you for HBV before starting treatment with SYMTUZA™.

If you have hepatitis B virus (HBV) infection and take SYMTUZA™, your HBV may get worse (flare-up) if you stop taking SYMTUZA™. ° Do not stop taking SYMTUZA™ without first talking to your healthcare provider ° Do not run out of SYMTUZA™. Refill your prescription or talk to your healthcare provider before your SYMTUZA™ is all gone. ° If you stop taking SYMTUZA™, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection or give you a medicine to treat your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking SYMTUZA™.

• Change in liver enzymes. People with a history of hepatitis B or C virus infection or who have certain liver enzyme changes may have an increased risk of developing new or worsening liver problems during treatment with SYMTUZA™. Liver problems can also happen during treatment with SYMTUZA™ in people without a history of liver disease. Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with SYMTUZA™ .

• Severe liver problems. In rare cases, severe liver problems can happen that can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turn yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, vomiting, or stomach area pain.

SYMTUZA™ may cause severe or life-threatening skin reactions or rashes. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. Call your healthcare provider right away if you develop a rash. Stop taking SYMTUZA™ and call your healthcare provider right away if you develop any skin changes with symptoms below: • Fever • Blisters or skin lesions • Tiredness • Mouth sores or ulcers • Muscle or joint pain • Red or inflamed eyes, like “pink eye” (conjunctivitis) Who should not take SYMTUZA™?

• Do not take SYMTUZA™ with any of the following medicines: alfuzosin, carbamazepine, cisapride, colchicine (if you have liver or kidney problems), dronedarone, elbasvir and grazoprevir, ergot-containing medicines (such as: dihydroergotamine, ergotamine tartrate, methylergonovine), lovastatin or a product that contains lovastatin, lurasidone, oral midazolam (when taken by mouth), phenobarbital, phenytoin, pimozide, ranolazine, rifampin, St. John’s wort (Hypericum perforatum) or a product that contains St. John’s wort, sildenafil when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin, or triazolam.

• Serious problems can happen if you take any of these medicines with SYMTUZA™ .

Before taking SYMTUZA™ , tell your healthcare provider about all of your medical conditions, including if you: • have liver problems (including hepatitis B or hepatitis C) • have kidney problems • are allergic to sulfa (sulfonamide) • have diabetes • have hemophilia • are pregnant, or plan to become pregnant. ° It is not known if SYMTUZA™ will harm your unborn baby. ° SYMTUZA™ should not be used during pregnancy because you may not have enough SYMTUZA™ in your body during pregnancy. ° Tell your healthcare provider if you become pregnant while taking SYMTUZA™. Your healthcare provider will prescribe different medicines if you become pregnant while taking SYMTUZA™. ° Pregnancy Registry: There is a pregnancy registry for those who take antiretroviral medicines during pregnancy. The purpose of the registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry.

• are breastfeeding or plan to breastfeed. Do not breastfeed if you take SYMTUZA™. ° You should not breastfeed if you have HIV-1 because of the risk of passing HIV to your baby.

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° One of the medicines in SYMTUZA™ called emtricitabine can pass into your breast milk. It is not known if the other medicines in SYMTUZA™ can pass into your breast milk. ° Talk to your healthcare provider about the best way to feed your baby.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with SYMTUZA™. Keep a list of your medicines to show your healthcare provider and pharmacist.

• You can ask your healthcare provider or pharmacist for a list of medicines that interact with SYMTUZA™.

• Do not start taking a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take SYMTUZA™ with other medicines.

How should I take SYMTUZA™?

• Take SYMTUZA™ exactly as your healthcare provider tells you.

• Do not change your dose or stop taking SYMTUZA™ without talking to your healthcare provider.

• Take SYMTUZA™ 1 time a day with food.

• If you have difficulty swallowing, the tablet may be split using a tablet cutter. After splitting the tablet, the entire dose (both halves) should then be taken right away.

• Do not miss a dose of SYMTUZA™.

• When your SYMTUZA™ supply starts to run low, get more from your healthcare provider or pharmacy. This is very important because the amount of virus in your blood may increase if the medicine is stopped for even a short time. The virus may develop resistance to SYMTUZA™ and become harder to treat.

• If you take too much SYMTUZA™ , call your healthcare provider or go to the nearest hospital emergency room right away.

What are the possible side effects of SYMTUZA™?

SYMTUZA™ may cause serious side effects including: • See “What is the most important information I should know about SYMTUZA™?”

• Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having new symptoms after starting your HIV-1 medicine.

• New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking SYMTUZA™. Your healthcare provider may tell you to stop taking SYMTUZA™ if you develop new or worse kidney problems.

• Too much lactic acid in your blood (lactic acidosis). Too much lactic acid is a serious but rare medical emergency that can lead to death.

Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

• Diabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including SYMTUZA™ can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or if you start urinating more often while taking SYMTUZA™.

• Changes in body fat can happen in people taking HIV-1 medications. The changes may include an increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms, and face may also happen. The exact cause and long-term health effects of these conditions are not known.

• Increased bleeding for hemophiliacs. Some people with hemophilia have increased bleeding with protease inhibitors.

The most common side effects of SYMTUZA™ include: ° diarrhea ° rash ° nausea ° fatigue

° headache ° stomach problems ° gas

These are not all of the possible side effects of SYMTUZA™.

Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.

What important facts I should know?

• This information is not complete. How to get more information: ° Talk to your healthcare provider or pharmacist ° Visit www.SYMTUZA.com to read over the FDA-approved product labeling and patient information ° Call to report side effects either to the FDA at 1-800-FDA-1088 or to Janssen Products, LP at 1-800-JANSSEN (1-800-526-7736) © Janssen Therapeutics, Division of Janssen Products, LP 2018 07/18 cp-63271v2

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POZ PLANET

BY TRENT STRAUBE

A “MILESTONE” IN HIV CRIMINALIZATION Twenty leading HIV researchers from across the globe released a consensus statement declaring that science does not support HIV criminalization. Not only does their evidence-based statement bolster the message behind the “Undetectable = Untransmittable” (“U=U”) campaign—that a person who has an undetectable viral load cannot transmit HIV—but it also addresses broader issues, such as basic transmission facts.

The consensus statement was published in the Journal of the International AIDS Society (IAS) along with a companion editorial titled “Addressing HIV Criminalization: Science Confronts Ignorance and Bias.” A related press conference was held in July during the 22nd International AIDS Conference (AIDS 2018) in Amsterdam.

“Today is a milestone,” writes POZ founder and Sero Project executive director Sean Strub in his POZ blog about the day of the conference. “It was an emotional, powerful and important event. I am looking forward to the dissemination of this statement, which will be a valuable resource for experts testifying in criminalization cases.”

“Simply put, HIV criminalization laws are Researchers discuss the ineffective, unwarranted and discriminatory,” consensus says IAS president Linda-Gail Bekker, one of statement. the coauthors of the statement. “In many cases, these misconceived laws exacerbate the spread of HIV by driving people living with and at risk of infection into hiding and away from treatment services.”

The expert consensus statement also notes that at least 68 countries have laws that specifically criminalize HIV nondisclosure, exposure or transmission and that 33 countries apply other criminal law provisions in similar cases. These unjust laws can get people with HIV arrested and convicted for nondisclosure even when no transmission has occurred, when the risk of transmission was extremely low and when no harm was intended.

“This is a long battle,” writes Strub, “and at times it is frustrating and feels like it is moving too slowly, particularly for those people living with HIV sitting in cages due to ignorance and stigma, but make no mistake: We are making progress.”

AIDS 2020 Protests Trump’s America is no place for the 2020 International AIDS Conference (AIDS 2020), say more than 60 U.S. human rights groups and HIV/AIDS organizations. In March, the International AIDS Society (IAS), which oversees the AIDS conferences, announced that AIDS 2020 would take place July 6 to 10, 2020, in San Francisco, marking 30 years since the city first hosted the conference. (The events take place every two years; AIDS 2018 was held in Amsterdam in July.) Positive Women’s Network–USA spelled out several reasons to relocate the 2020 conference: “Detentions. Targeting sex workers and LGBTQ communities. Global Gag Rule. War on people who use drugs. Closed borders. The wall.

Police brutality. Racist violence grounded in white supremacy. This is Trump’s U.S.A.”

14 POZ OCTOBER/NOVEMBER 2018 poz.com

(AIDS 2018 PRESS CONFERENCE) COURTESY OF IAS/WORKERS’ PHOTOS/STEVE FORREST; (NO AIDS 2020 IN TRUMP’S USA) COURTESY OF AIDS2020FORALL.ORG

Global experts agree: Science does not back HIV crime laws.

Clockwise from top center: Billy Porter and Mj Rodriguez in scenes from Pose; series cocreator Ryan Murphy, GMHC CEO Kelsey Louie and Pose writer Janet Mock at the Latex Ball; voguing and walking the runway at the Latex Ball in New York City

10S ACROSS THE BOARD!

(PORTER AND RODRIGUEZ) COURTESY OF FX NETWORKS: (LATEX BALL IMAGES) COURTESY OF GMHC/DUSTIN MOORE

Pose and the Latex Ball serve HIV realness.

The category is: Best Presentation of HIV Realness in a Television Series or Show.

Darlings, if you’ve seen even one episode of FX’s hit Pose, then you know who’s taking home this trophy. Set in the house and ball scene of 1980s New York City, the eight-episode story follows predominantly Black and Latinx LGBT outcasts struggling to survive the streets and the AIDS epidemic. They build community by living together in “houses” that function as families, complete with mothers; different houses compete against one another in balls that feature voguing and runway categories.

The show, coproduced by Ryan Murphy, made history for featuring “the largest cast of transgender actors in series regular roles as well as the largest recurring cast of LGBTQ actors ever for a scripted series,” according to FX. Often overshadowed is this noteworthy aspect: The show highlights the devastation of HIV/AIDS in these communities. Two of the lead characters are HIV positive at the close of season 1, which ends in 1988, eight years

before the advent of effective HIV treatment.

Fast-forward to real life, 2018. HIV remains prevalent among minority LGBT communities, and New York City’s ball culture is still thriving, as evidenced by the legendary Latex Ball, produced by GMHC (Gay Men’s Health Crisis).

This year’s theme was “The Kingdom of Africa.”

Founded in 1989 as a way for GMHC to reach members of the ball scene with HIV prevention and safer-sex messaging, the Latex Ball still serves this vital public health function.

Spotted among this year’s extravagant festivities and runway were several of the cast and creators of Pose, including Murphy, transgender activist and series writer Janet Mock and stars Mj Rodriguez, Dominique Jackson and Ryan Jamaal Swain. Perhaps they picked up some pointers for season 2. According to E! News, the series will continue its HIV storylines—including Sandra Bernhard as an AIDS ward nurse. That season will end in 1990, when the underground ball scene gets thrust into the global spotlight thanks to Madonna’s “Vogue.”

Fellas That Were in the Mood Speaking of Madonna and “Vogue,” two of her dancers from that legendary video— Salim “Slam” Gauwloos and Carlton Wilborn—are both surviving and thriving with HIV. Read “The Re-invention Tour” on POZ.com to learn more about their stories and to see them strike a pose on the cover of this magazine.

poz.com OCTOBER/NOVEMBER 2018 POZ 15

VOICES

BLOGS AND OPINIONS FROM POZ.COM

WAKE-UP CALL

I

n the introduction to the 2018 Global AIDS Update from the Joint United Nations Programme on HIV/AIDS (UNAIDS), executive director Michel Sidibé characterized prevention and funding efforts as being in “crisis,” urging readers to view the report, titled Miles to Go: Closing Gaps, Breaking Barriers, Righting Injustices, as a “wake-up call.”

The report makes clear that certain populations—notably, children and adolescents—are consistently left behind. Unfortunately, this year’s sobering dispatch comes as no surprise.

Children with HIV have had greater difficulty accessing antiretrovirals (ARVs) than adults and often are not diagnosed until the virus has irrevocably weakened them. Progress has been insufficient. As a result, it seems all but impossible that the global community will meet the benchmarks defining our path toward an AIDS-free generation.

As an example, although ARVs have made it possible to prevent transmission of HIV from mother to child in nearly all cases, the UNAIDS report shows that the proportion of women who can access the drugs while pregnant and breast-feeding has barely budged since 2014. The coverage rate for expectant mothers is high—hovering at around 80

16 POZ OCTOBER/NOVEMBER 2018 poz.com

percent globally—but it is well below the level needed to prevent infant infections on a large scale.

Perhaps the most frustrating trend noted in this year’s report is the continued inadequacy of treatment for children living with the virus. In this year’s report, UNAIDS revealed that just 52 percent of children with HIV are taking ARVs, compared with 59 percent of adults. Children’s rate of access to medication is not only lower than adults’ but also slower to improve.

Beyond these numeric inequities, there are considerable qualitative discrepancies between drugs for children and drugs for adults. Children’s HIV medications are generally less effective, more cumbersome to ingest, accompanied by greater side effects and more prone to causing resistance.

Yet there is a realistic path to improving these circumstances. As the 2018 report notes, leaders from pharmaceutical companies, national governments, multilateral organizations, donors and service organizations— including EGPAF—came together at the Vatican in November 2017 to develop a comprehensive plan for accelerating the development and dissemination of child-friendly ARV formulations.

This meeting resulted in actionable commitments and detailed pledges, including promises by several drug manufacturers to make pediatric formulations available in low-income countries for the cost of production until generics become available.

As a result of that meeting, the U.S. Food and Drug Administration is now developing guidance for the pharmaceutical industry on how it can accelerate research into pediatric ARV formulations and get new, better drugs for children to market much more quickly.

Together, these developments constitute real momentum. Yet if this year’s UNAIDS report has a bottom line, it’s that for too long, the global health community has allowed progress like this to breed complacency.

Before we celebrate the potential of these moves on pediatric formulations, let us commit to similarly concrete solutions to those other troubling indicators—from stagnating progress on prevention of mother-to-child transmission to unacceptably high rates of new cases and AIDS-related mortality among children.

If we do less than rise to the occasion, the 2019 UNAIDS report could be another catalog of unkept promises. Q

ISTOCK

Charles Lyons, president and CEO of the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), wrote an op-ed titled “Answering the ‘Wake-Up Call’” in which he analyzed data from a 2018 UNAIDS report. Below is an edited excerpt.

THE MIDTERMS In a blog post titled “These Ballot Initiatives Could Have a Big Impact in the Midterms,” AIDS United reminds people living with HIV that the 2018 election isn’t just about seats in Congress. Below is an edited excerpt.

ISTOCK

O

nce the dust began to settle from the 2016 election, political pundits and many in the HIV community began to look ahead to the 2018 midterm elections.

However, while the 470 House and Senate seats that will be up for grabs in November are of importance in general and HIV policy in specific, a number of ballot initiatives could have an effect on people living with HIV. Medicaid Expansion Goes West: In all likelihood, residents in three very red states will be voting on whether to expand Medicaid. It will be on the ballot in both Utah and Idaho, with Nebraska expected to see its expansion initiative given the green light by the state’s board of elections.

At a time when the Trump administration is undermining the Affordable Care Act and saddling existing Medicaid expansion programs with onerous work requirements, it is a promising sign that states with heavily Republican voter bases are at the very least considering expanding Medicaid.

In 2016, voters in the slightly bluer but still largely GOP-led state of Maine overwhelmingly supported a ballot initiative to expand Medicaid in the state. Unfortunately, Maine’s soon-to-

be-departing Republican Governor Paul LePage has fought its implementation.

Should voters in Idaho—the most conservative of the three states considering Medicaid expansion in November— support the ballot initiative, the state’s Republican gubernatorial candidate Brad Little has already said he “will adhere to the will of the voters.”

Transgender Rights in Massachusetts: State residents will be asked to vote on a veto referendum concerning an already passed piece of legislation (Senate Bill 2407) barring discrimination based on gender identity in public spaces, such as hotels, restaurants and stores.

The referendum was spearheaded by the right-wing, religious “Keep MA Safe” campaign and the Massachusetts Family Institute, which has routinely demonized trans individuals in its promotional material, referring to those in the trans community as performing “sexual charades.” The campaign also engaged in fearmongering to claim that the right of a trans person to use the bathroom of their choice is a grave threat to the safety of women and girls everywhere. A recent poll shows that only 38 percent of voters supported repealing the law.

Abortion in Alabama & West Virginia: Voters will face ballot initiatives that would add antiabortion language to their state constitutions and potentially have a huge effect on access to abortion should the federal protections offered by Roe v. Wade be overturned or weakened in the coming years.

In West Virginia, the ballot initiative would amend the state’s constitution to say that “nothing in this Constitution secures or protects a right to abortion or requires the funding of abortion,” nullifying a 1993 state Supreme Court decision affirming the right to both abortion care and Medicaid funding for abortion.

Alabama’s measure would be less impactful in the short term but fartherreaching. In their ballot initiative, Alabama abortion opponents want to add language to their state constitution “to recognize and support the sanctity of unborn life and the rights of unborn children, including the right to life.”

Regardless of their success this November, abortion rights experts believe that ballot initiatives of this sort will be seen with increasing frequency in future elections in states that are already hostile toward a woman’s right to choose. Q

poz.com OCTOBER/NOVEMBER 2018 POZ 17

SPOTLIGHT

BY JOE MEJÍA

#AIDS 2018 The 22nd International AIDS Conference (AIDS 2018) took place in Amsterdam from July 23 to 27. With 16,000 stakeholders in attendance and more than 160 countries represented, the event included presentations, panel discussions, community and business booths and, yes, the occasional protest. AIDS 2018 showcased the latest in HIV science (further evidence that treatment as prevention works!), policy (the movement to end the criminalization of HIV is gaining steam) and funding (declines in donations threaten decades of progress).

This year, HIV-negative allies with boldface names, like Charlize Theron and Prince Harry, shared the spotlight with HIV-positive youth activists, including Mercy Ngulube of the Children’s HIV Association and Elizabeth Glaser Pediatric AIDS Foundation ambassador Josephine Nabukenya, in an acknowledgement that worldwide, adolescents are at high risk of contracting HIV—especially in Africa.

And never far from the fray, POZ pals and HIV crusaders from Positive Women’s Network–USA, AIDS United, the Treatment Action Group and more reminded the global crowd that despite our current political climate, the United States continues to fight the epidemic.

Posts may be edited for clarity and/or space.

18 POZ OCTOBER/NOVEMBER 2018 poz.com

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YOU MATTER AND SO DOES YOUR HEALTH

That’s why starting and staying on HIV-1 treatment is so important.

WHAT IS DESCOVY®?

DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. DESCOVY combines 2 medicines into 1 pill taken once a day. Because DESCOVY by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines.

DESCOVY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking DESCOVY. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about DESCOVY? DESCOVY may cause serious side effects: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to monitor your health.

What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • Changes in your immune system. Your immune system may get stronger and begin to fight infections.

Tell your healthcare provider if you have any new symptoms after you start taking DESCOVY. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking DESCOVY if you develop new or worse kidney problems.

• Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that

can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

• Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

The most common side effect of DESCOVY is nausea.

Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking DESCOVY? • All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection.

• All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist.

Ask your healthcare provider if it is safe to take DESCOVY with all of your other medicines.

• If you are pregnant or plan to become pregnant.

It is not known if DESCOVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking DESCOVY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Please see Important Facts about DESCOVY, including important warnings, on the following page.

Ask your healthcare provider if an HIV-1 treatment that contains DESCOVY® is right for you.

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IMPORTANT FACTS

This is only a brief summary of important information about DESCOVY and does not replace talking to your healthcare provider about your condition and your treatment. ®

(des-KOH-vee) MOST IMPORTANT INFORMATION ABOUT DESCOVY

POSSIBLE SIDE EFFECTS OF DESCOVY

DESCOVY may cause serious side effects, including: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking DESCOVY. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.

DESCOVY can cause serious side effects, including: • Those in the “Most Important Information About DESCOVY” section.

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

• Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

• Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

The most common side effect of DESCOVY is nausea.

These are not all the possible side effects of DESCOVY. Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.

ABOUT DESCOVY • DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection.

• DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.

BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or had any kidney or liver problems, including hepatitis infection.

• Have any other medical condition.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

• Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.

GET MORE INFORMATION • This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more.

• Go to DESCOVY.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit DESCOVY.com for program information.

HOW TO TAKE DESCOVY • DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines.

• Take DESCOVY with or without food.

DESCOVY, the DESCOVY Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: September 2017 © 2017 Gilead Sciences, Inc. All rights reserved. DVYC0085 11/17

DVYC0085_A_7-875x10-5_POZ_Drew_r2v1jl.indd 5 PZA498282C.indd 1

12/1/17 12:44 PM 8/30/18 12:47 PM

EVERYDAY

BY JENNIFER MORTON

October 3

The exhibition ART AIDS AMERICA opens at the Tacoma Art Museum, Tacoma, Washington. (2015)

6

FRANÇOISE BARRÉSINOUSSI AND LUC MONTAGNIER are awarded the Nobel Prize in Physiology or Medicine for their discovery of HIV. (2008)

8

The AIDS CANDLELIGHT VIGIL/RALLY is held in San Francisco. Sponsored by the AIDS/KS Foundation, the event marks the first time people with AIDS come together in a public demonstration. (1983)

10

San Francisco closes 14 BATHHOUSES AND SEX CLUBS because they are “fostering disease and death” by allowing high-risk sexual activities to take place.

(1984)

(BARRÉ-SINOUSSI AND MONTAGNIER) WIKIMEDIA COMMONS; (CANDLE AND VIALS OF BLOOD) ISTOCK; (NOBEL PRIZE, JOHNSON, QUILT, DALLAS BUYERS CLUB AND MERCURY) DREAMSTIME.COM

November 12 7 MAGIC JOHNSON announces he is HIV positive and is retiring from basketball. (1991)

8

Secretary of State HILLARY RODHAM CLINTON releases the U.S. government’s plan for attaining an AIDSfree generation. (2011)

11

PEDRO ZAMORA, AIDS educator and cast member of The Real World: San Francisco, dies of AIDS-related complications. (1994)

Congress enacts the RICKY RAY HEMOPHILIA RELIEF FUND ACT, honoring the Florida teenager who contracted HIV through contaminated blood products.

The legislation authorizes payments to individuals with hemophilia and other blood-clotting disorders who contracted HIV via unscreened bloodclotting agents between 1982 and 1987.

(1998)

21

President Obama signs the HIV ORGAN POLICY EQUITY ACT, which allows people living with HIV to receive organs from other HIV-positive donors. (2013)

11

THE AIDS MEMORIAL QUILT is displayed for the first time on the National Mall in Washington, DC, during the National March on Washington for Lesbian and Gay Rights. (1987)

15

NATIONAL LATINX AIDS AWARENESS DAY

22

DALLAS BUYERS CLUB is released nationwide.

The film is based on the true story of Ron Woodroof, an HIV-positive man who smuggled unapproved HIV drugs into the United States to meet the demands of people dying of AIDS-related complications.

(2013)

24

Singersongwriter and Queen front man FREDDIE MERCURY dies of AIDS-related complications. (1991)

AIDS is an everyday experience. These dates represent milestones in the AIDS epidemic. Some dates are known globally; others commemorate individual experiences. AIDS Is Everyday is an ongoing art project produced in conjunction with Visual AIDS to help break down the silence, shame and stigma surrounding HIV. Add a date about your history with HIV to our online calendar at poz.com/aidsiseveryday-submit.

poz.com OCTOBER/NOVEMBER 2018 POZ 23

CARE AND TREATMENT

BY BENJAMIN RYAN

MAJOR STUDY VALIDATES “U=U” An enormous trove of evidence now supports the increasingly solid global consensus that if you maintain an undetectable viral load with antiretroviral treatment, then you have effectively zero chance of transmitting HIV. The PARTNER2 study, conducted in 14 European countries, enrolled 972 mixed-HIV-status gay male couples between September 2010 and July 2017. Through April 2018, a total of 783 of these couples provided the study with 1,596 cumulative years of follow-up that qualified for the final analysis.

Each couple was followed for a median of 1.6 years.

The final analysis looked only at the study follow-up time during which the HIV-positive partners had a viral load below 200, the HIV-negative partners were not on pre- or postexposure prophylaxis (PrEP or PEP) and the participants reported condomless anal sex within each couple.

Even after a reported 77,000 condomless sex acts, there were zero transmissions between study partners. (Genetic analyses of viruses helped determine whether any transmissions were linked between partners.) Together with the 12,000 condomless sex acts documented between gay partners in the previously reported Opposites Attract study, researchers now have data on 89,000 such acts between male partners.

Anthony S. Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, concludes “that the body of scientific evidence to date has established that there is effectively no risk of sexual transmission of HIV when the partner living with HIV has a durably undetectable viral load, validating the ‘U=U’ [‘Undetectable = Untransmittable’] message of HIV treatment as prevention.”

FDA Approves Janssen’s Symtuza The Food and Drug Administration has approved Janssen’s Symtuza (darunavir/ cobicistat/emtricitabine/tenofovir alafenamide), a single-tablet regimen for the treatment of HIV in adults. The tablet is indicated for people who are starting antiretroviral (ARV) treatment for the first time as well as for certain people who are switching from another HIV regimen and have a fully suppressed virus.

Research indicates that the darunavir component (known as Prezista as an individual tablet) is associated with a low likelihood of HIV developing resistance to the drug as well as a high likelihood that the drug will continue to work well in combating the virus over the long term.

U.S. treatment guidelines recommend Symtuza for certain first-timers to HIV treatment, including those who may be at risk for not adhering well to the daily regimen and those for whom it is necessary to begin HIV treatment before the results from ARV drug resistance tests are available.

“Symtuza (D/C/F/TAF) is a game changer,” says Anthony Mills, MD, CEO of the Southern California Men’s Medical Group in Los Angeles. “Now we have a singletablet formulation that will allow us to harness the strength and durability of a boosted protease regimen without compromising ease of use. Providers know and trust the regimen, and the simplicity of one pill once a day makes it a great option for patients.”

24 POZ OCTOBER/NOVEMBER 2018 poz.com

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

Zepatier Zaps Acute Hep C in 8 Weeks Eight weeks of Merck’s Zepatier (grazoprevir/elbasvir) boasted a near-perfect hepatitis C virus (HCV) cure rate among 80 Dutch and Belgian men who have sex with men who entered a recent study with a very recent, or acute, case of the virus that they had contracted sexually.

All the study participants had genotype 1a or 4 of HCV. Seventythree men were coinfected with HIV. Nineteen (24 percent) of the acute HCV infections represented reinfections among men previously cured of that virus.

Among the 79 men about whom there is sufficient follow-up information, 78 were cured of the virus. By comparison, among the members of a previous study who were chronically infected with HCV and were all coinfected with HIV, the cure rate after the same regimen was 96 percent.

Consequently, the study authors concluded that eight weeks of Zepatier treatment among those acutely infected works as well as 12 weeks of the regimen among those who are chronically infected.

“Among certain key populations, like HIV-positive men who have sex with men, onward transmission of hepatitis C is still ongoing, as outlined by the high incidence and high reinfection rates in this key population,” says the study’s lead author, Anne Boerekamps, MD, an infectious disease specialist at Erasmus University Medical Center in Rotterdam, Netherlands. “Treating these patients in the acute phase of infection can prevent onward transmission of hepatitis C to sexual partners.”

PREP TIED TO HIV DECLINE For the first time, researchers have concluded that Truvada (tenofovir disoproxil fumarate/emtricitabine) as pre-exposure prophylaxis (PrEP) is independently associated with a significant decline in U.S. HIV diagnoses.

Investigators obtained 2012 to 2016 HIV diagnosis data from all 50 states plus the District of Columbia as well as viral suppression rates among people with HIV from 37 states plus DC. For PrEP use statistics, the study authors relied on a national prescription database representing at least 83 percent of all prescriptions dispensed by commercial pharmacies.

The national U.S. diagnosis rate per 100,000 people age 13 and older declined from 15.7 diagnoses in 2012 to 14.5 diagnoses in 2016, for an estimated average decline of 1.6 percent per year.

The national PrEP use rate per 1,000 people considered good PrEP candidates according to the Centers for Disease Control and Prevention’s criteria was 7.0 in 2012 and increased to 68.5 in 2016, for an estimated average increase of 78 percent per year.

PrEP use rates varied widely from state to state during the study period. In the 10 states in the top 20 percent of PrEP use, the HIV diagnosis rate declined by an estimated 4.7 percent per year, while the bottom 10 states saw an estimated 0.9 percent annual increase in their HIV diagnosis rate.

The researchers adjusted these HIV diagnosis figures to account for the slight increase in viral suppression rates among U.S. residents with HIV (fully suppressing the virus prevents transmission) during the study period. They concluded that PrEP’s association with HIV diagnosis rates remained statistically significant, meaning it is unlikely to have occurred by chance.

PrEP use has continued to increase rapidly since 2016—Gilead Sciences estimates that 180,000 U.S. residents are currently on it—so it is likely that Truvada is having even more of an impact on the HIV epidemic today.

“These data further validate the potential for significant public health impacts of Truvada for PrEP to help reduce HIV transmission in the U.S.,” says Patrick Sullivan, a professor of epidemiology at the Rollins School of Public Health at Emory University in Atlanta and the study’s lead author. “Our analysis emphasizes the importance of improving access to HIV screening and a full range of prevention tools, including PrEP, in U.S. states.”

poz.com OCTOBER/NOVEMBER 2018 POZ 25

Introducing the new and improved

POZ.com

WEBSITE FEATURES INCLUDE: • Responsive design optimized for smartphones and tablets • Faster site for quicker load times • Redesigned for easier readability and navigation • Improved search function

RESEARCH NOTES

BY BENJAMIN RYAN

ALL IMAGES: ISTOCK

PREVENTION

HIV Vaccine

TREATMENT

Merck’s Doravirine

CURE

CONCERNS

Gene-Editing Method

Global Funding

The experimental HIV vaccine currently under investigation in an advanced trial has shown promising results in an early human study. The Phase I/IIa randomized double-blind placebo-controlled study enrolled 393 participants. It will evaluate the safety and tolerability as well as the immune-system-prompting effects of various HIV vaccine regimens given as four shots over 48 weeks.

Two years into the five years of planned monitoring of participants, the vaccine prompted a broad array of immune responses to the virus. Such responses persisted up to a year after the last vaccination shot.

Previous primate-based research indicated that the most effective vaccine regimen tested in that study—the one moved into the advanced human trial—reduced the risk of a simian version of HIV by 94 percent per exposure and 67 percent after six exposures to the virus. This regimen also led to the best immune response in humans in the Phase I/IIa trial.

Merck’s experimental non-nucleoside reverse transcriptase inhibitor doravirine suppressed HIV at a higher rate than Norvir (ritonavir)-boosted Prezista (darunavir) 96 weeks into a clinical trial that pitted the two medications against each other. Additionally, regimens based on doravirine were associated with much better lab test results for blood lipids, including cholesterol and triglycerides, compared with regimens based on Prezista. The study included 766 people with HIV who had not previously been treated for the virus. They were evenly randomized to receive either doravirine or Norvir-boosted Prezista, each in combination with Truvada (tenofovir disoproxil fumarate/ emtricitabine) or Epzicom (abacavir/lamivudine).

At the 96-week mark, 73 percent of those in the doravirine group had a fully suppressed viral load compared with 66 percent of those in the Prezista group.

Merck applied to the Food and Drug Administration for approval of doravirine in January.

Researchers have developed a new, cutting-edge way to edit the genome of CD4 immune cells that could hold promise as a tool for the HIV cure research field.

While early research into this method has focused on manipulating immune cells to treat cancer or autoimmune disease, scientists believe it could be used to engineer HIV-resistant CD4 cells. Currently, researchers in the gene-editing field, including those focusing on HIV, commonly use a deactivated virus, known as a viral vector, to deliver genetic code into cells.

Such gene editing is time-consuming and expensive. The new method harnesses the power of electrical fields to deliver new genes to immune cells with the CRISPR-Cas9 genome-targeting method.

This system is much more precise and much faster, reducing the editing process from months or even a year to a matter of mere weeks.

Researchers assessed the current state of international HIV funding in 188 nations and found that just as advocates are calling for ramped-up spending on the global epidemic, such funds are actually retreating.

This reversal occurs as the prevailing narrative in the global HIV advocacy, clinical and research communities has stressed that HIV can be brought to an end as a public health threat by 2030.

After a decade during which HIV-related development assistance from wealthier nations to low- and middle-income countries increased by 19.6 percent annually, the overall tally decreased by 6.6 percent between 2012 and 2017. In 2015, total global spending on the HIV epidemic was $48.1 billion, an $800 million (1.7 percent) decline from 2013. Of this total, 62 percent was financed by domestic governmental spending, while individual out-of-pocket spending covered 5.6 percent and developmental assistance from wealthier nations accounted for 30 percent.

poz.com OCTOBER/NOVEMBER 2018 POZ 29

This year, Sanchez turned 50 and also marked 15 years since his AIDS diagnosis.

CHARLES SANCHEZ’S HIV JOURNEY INSPIRED HIS HIT WEB SERIES, MERCE. HIS STORY, WHICH IS BURSTING WITH COMEDY AND DRAMA, WILL INSPIRE YOU TOO!

BY TRENT STRAUBE

BILL WADMAN

CHARLES SANCHEZ WAS BORN READY FOR HIS CLOSE-UP. He began pursuing an acting career in the 1980s but encountered formidable obstacles—HIV, a coma, comorbidities—while on the road to stardom. Undeterred, the plucky 50-year-old is now enjoying his moment in the spotlight. POZ met up with Sanchez at a diner in Queens, New York (near his apartment), to discuss his HIV-related web series, Merce, and to discover whether his art imitates his life.

poz.com OCTOBER/NOVEMBER 2018 POZ 31

Set the scene for us. You were 19 when you left Phoenix for the bright lights of Broadway. What happened next?

I moved to New York to go to the American Musical and Dramatic Academy. I graduated from the school in ’88.

I really thought I was going to make it, baby. I had an agent and manager, and I got some work. But mostly, I waited tables and was miserable. But I had a high caliber of rejection.

“YOU HAVE TO DECIDE: AM I GOING TO SEE MYSELF AS A PERSON WHO LIVES?”

Were you openly gay at this time?

One reason to come to New York was to figure out what gay was. I always felt so different from everyone else growing up. We didn’t have the internet—we had Bette Midler and MGM movies. When I started venturing out to nightlife, I was shocked to learn I didn’t fit in there either. Everyone wanted a blond, blue-eyed, straight-acting 22-year-old.

Was HIV on your mind?

It was, but in a weird way. One of my first acting jobs was in an HIV show for kids. I dated guys who had lovers who had died [of AIDS complications]. I didn’t have any friends in ACT UP [the AIDS activist group]. I was in this bubble of going to auditions and waiting tables. I didn’t have my first friend come out to me as HIV positive until, like, ’95.

Tell us about your own HIV diagnosis.

I was in New York for 11 years. I was having a hard time making ends meet, and I remember thinking that it didn’t matter how hard I worked or how good I am—I’m just not the kind to get the role. And it was awful. So I left. I went to LA. I could pretend I was pursuing a career, but mostly I pursued sex, drugs and rock ’n’ roll. I was using crystal meth, and I felt like I had to get out. That was around 2000.

A guy [I had dated] moved to Little Rock, Arkansas, and was saying all the right things to me on the phone, so I took a bus [and moved] to Little Rock. [About three years later,] I was living with a friend. I had what I thought was a stubborn case of bronchitis. She came home from work, and I was on the floor, blue from lack of oxygen. She carried me to her car and drove me to the emergency room. I don’t remember any of this. They intubated me and called my family. I was put in a drug-induced coma for about three weeks, and I was in the hospital for the better part of a month.

Wow. Did anybody know the cause of it?

I found out three weeks later. I had histoplasmosis [a lung infection], PCP [Pneumocystis carinii pneumonia], thrush.

My viral load was through the roof; my T-cell count was 4.

So “full-blown” AIDS. I had my family around me when the doctor told me, and it freaked me out. My sister grabbed my hand and said, “Don’t worry; we’ve known for three weeks.”

A lot freaked me out in those days. I remember the doctor

32 POZ OCTOBER/NOVEMBER 2018 poz.com

asking me about symptoms, like how long I had night sweats. I said, “How long do you think I’ve been sick?” And he said, “I think you’ve had HIV for a long time.” It was really upsetting that I had been so unaware of my own body.

Then a friend came to visit me, and I was crying and telling him this stuff, and he goes, “Charles, I think you’ve got a really bad attitude. This isn’t the 1980s. Just do what the doctors tell you and take your meds.” And I kinda woke up. Of course, first I had to learn to walk again.

What helped you get through the next transition?

My family and friends. They didn’t treat me any differently.

I had always worked two or three jobs, and then I was on disability, so that was a big change. I was really depressed.

But a dinner theater [where I had been a musical director] helped me get back to work. And people at the Arkansas AIDS Foundation were amazing. I went on a retreat with other people living with HIV, and it was really freeing.

Sometimes, when I hear newly diagnosed stories, a part of me is like, Oh, come on, get over it. But it is traumatic.

Your life is going to change. But you have to decide: Am I going to see myself as a sick person or as a person who lives with this thing? I remember thinking, Am I done? Who am I going to be? Well, I’ve got a big mouth. Maybe I can be that guy who is OK. My friends can look at me and go, “My buddy Charles has HIV, and he’s fine.” Maybe I can use my big mouth to be helpful. But you have to decide that.

Is that a decision you have to make over and over?

Yes. Like, how do I make this fun or funny or palatable.

Especially as we get older and other things start happening.

What things? You look like you’re in great shape.

I’ve had avascular necrosis. It’s when the blood stops going to the top of the bone and it starts to die. [In my case,] it’s also called flattening of the hip. A lot of people with HIV get it. So I’ve had two hip replacements. First, eight years ago, then two and a half years ago. I’m doing well. Some things I can’t do. I was a runner, and I really miss it. But I do other things.

HIV has been a good teacher. I’ve had to learn to bounce.

Backtracking for a minute, you mentioned booze and drugs. Was that a serious problem for you beyond self-medicating?

Yes, I’m an alcoholic. Friday [July 13] was my eight years

PZA498306.indd 1

8/30/18 2:50 PM

at home, I had my wallet and phone and keys and glasses, so I thought everything was cool.

But I had blacked out. It was scary and awful.

When I went to see the therapist, he said, “I found you on Ninth Avenue near 42nd Street, passed out.” And this is the miracle part: He happened to be walking by and saw me, and he knew where I lived because he had visited me after my hip replacement. I think a week later, I went to my first meeting. And I haven’t had a drink since. Or drugs.

How were you managing your HIV through all this?

I’ve been really lucky. Since I started taking meds, I started testing undetectable very quickly—my body always liked drugs! That’s one of the cool things about “U=U” [“Undetectable = Untransmittable,” the concept that people with an undetectable viral load cannot transmit the virus sexually]. It was like, Wow, I’ve been undetectable this whole time and no one has gotten HIV from me. That’s a cool thing to learn.

Did you get sober while in Arkansas?

[Shakes his head no] I figured, I’m not dying; I can move somewhere else and grow. So I came back [to New York] in 2008. I was living in Chelsea [a neighborhood in Manhattan] and knew I needed therapy and support, so I went to GMHC [Gay Men’s Health Crisis], which is like the mother ship of HIV/AIDS services, and I was seeing a wonderful therapist.

So he called me on July 4 [2010] and asked me if I was OK, which was weird. And then he said, “Do you remember seeing me last night?”

Oh no. And did you?

I knew I had gone to Rawhide [a local gay bar] and then gotten into a cab. That’s the last thing I remember. When I woke up

34 POZ OCTOBER/NOVEMBER 2018 poz.com

You guys have filmed season 2 and are editing it now [for details, see the sidebar on the opposite page]. You’ve been posting sneak peeks, including a new episode titled “Under Pressure.” What’s the story behind that?

I came up with the phrase “poopsie-daisy” when on my first medications—Kaletra and Combivir—because I never knew when I was going to have to go. Now I’m on Triumeq and don’t have those issues. Last year, at the annual USCA [United States Conference on AIDS], I went to a meeting where people were talking about HIV-related diarrhea and how big a deal it is and no one talks about it. I met people at

BILL WADMAN

sober anniversary. Cheers! [We clink our Sanchez and Tyne Firmin in glasses of water.] I didn’t drink at a young New York City’s Greenwich age. I was very careful for many years beVillage cause I was protecting my performance instrument and all that stuff, and then I started feeling like it didn’t really matter, and little by little, unreasonable things became reasonable. I used to think my HIV was caused by my drug use and alcoholism, but I’ve become more forgiving about it all. I got HIV from being a human being doing things humans do.

What have you been doing professionally while in New York?

I worked at a nonprofit school for eight years. I was their social media guy, and I wrote newsletters and stuff. I’ve always written, out of necessity, like plays for kids I was teaching.

I’m now a contributing editor at [the HIV-related website] TheBody.com. [Several years ago, I took a class] about writing your own comedy show. Then I wrote campy little stories and monologues and asked my friend Tyne Firmin—we used to work in catering together, like, 30 years ago—I asked him to film them on a flip cam, no budget, and they became Manhattan Man-Travels [a brief YouTube series]. He edited it himself. Then I thought, Let’s really produce and budget and fundraise. We made a script and a new character—Merce— and got a new composer and made it a musical and put HIV at the forefront. It’s not sad, and it’s not depressing. The whole point was to show that his life is crazy and fun.

ALL SCENE IMAGES: COURTESY OF CHARLES SANCHEZ

Napo Pharmaceuticals and found out about their drug Mytesi [which helps folks cope with this condition].

They asked whether Merce could create a mini episode to use as a teaching tool, and I was like, Sure! I knew exactly what the episode was going to be. That was my real-life experience.

Let’s circle back to your family. October 15 marks National Latinx AIDS Awareness Day. How closely do you relate to that culture, and how much has it affected your HIV journey?

I’m between two worlds. I’m not Latin enough, but we went to church every Sunday. Catholic. Lots of aunts and uncles. I’m the youngest of four—the pink sheep of the family. I’m fi fth generation. My parents didn’t teach us Spanish. I’m American. But I also have a z at the end of my name, and I’m Mexican American, and there’s a lot of that in the news these days—“those people”—and I encounter racism. I identify a lot with brown people, and I understand the barriers that come with HIV: machismo and [religion] and stuff. I had a lot of guilt and shame when I was younger. I didn’t come out to my parents until I was 30. They said to me, “We love you. You’re just going to have to give us some time; we’ve lived a long time with certain beliefs.”

My family is incredibly loving. My brother and sister have softened a lot.

My oldest brother had to—because of me and his oldest son.

You have a gay nephew?

Yes! And he’s smarter than I ever was, so together. But it’s a different time now. [My generation] didn’t have the internet or Will & Grace.

Or Merce.

You know, when Trump was elected, I thought, Now Merce is important. To get a character out there who is really gay and HIV positive—that’s important. Q

Coming attractions: scenes from season 2 of Merce, including (directly above) the musical number “Poopsie-Daisy”

The campy, colorful web series Merce first danced off our screens and into our hearts in 2015. Coproduced by Charles Sanchez (who stars as Merce and writes the episodes) and Tyne Firmin (who costars, in drag, as Mama and directs the show), the musical series follows the “sparkly, show-tuney, jazz-handy middle-aged” Merce, explains Sanchez. “In season 1, I really wanted to show a character living with HIV who wasn’t sad, sick or dying. Merce is looking for love and self-acceptance, just like everyone else. And no one in his circle of family and friends treats him differently because of his HIV. That was an important thing.” You can watch complete episodes of that season as well as musical numbers on MerceTheSeries.com, YouTube and Vimeo.

Season 2 has been filmed and is in postproduction. (If you’d like to help speed up the process, then make a tax-deductible donation via MerceTheSeries.com; the series is a sponsored project of Fractured Atlas, a nonprofit arts service organization.)

What can we expect in season 2? “I’m tackling more issues,” Sanchez says, coyly dodging specific plot details. He divulges that POZ contributing writer and blogger Mark S. King costars as Merce’s Aunt Bless—“who wears her Bible belt pretty tightly”—and that we’ll be treated to “eye-candy bodybuilders, strong female characters and varied races, sexual orientations and ages—because the show takes place in New York City.” Plus, look for cameos by other HIV luminaries, such as POZ blogger Shawn Decker and PrEP advocate Damon Jacobs. (A photo above offers us a glimpse of Firmin as Mama and King as Aunt Bless.)

Firmin tantalizes us with this real-life detail about his working relationship with Sanchez: “Charles is HIV positive, and I am HIV negative. It’s really a perfect match for this show. Come to think of it, we have a serodiscordant relationship—just like [in an upcoming story line of] Merce—only without the fabulous sex that Merce has!”

poz.com OCTOBER/NOVEMBER 2018 POZ 35

Reinserted: Tango Palace, 2018

UNDERSTANDING THE CONNECTIONS BETWEEN SEX WORK AND HIV

BY CAMERON GORMAN ART BY BEN CUEVAS ARCHIVAL PHOTOS BY ANNIE SPRINKLE

I

N 1993, AT 14 YEARS OLD AND PREGNANT WITH

her first child, Janell Johnson-Dash was placed in a foster home.

Soon, she was in and out of care, alternately living in group homes and on the street. As a young teen, she became involved in sex work.

Johnson-Dash became an HIV peer educator because her older teenage friends were testing positive for the virus, she says. Johnson-Dash was once part of a group of about a dozen sex workers based in New York City’s West Village neighborhood.

Today, only four of them are alive.

No longer a sex worker, Johnson-Dash, 38, conducts research about the sex trade and is currently a field interviewer and HIV tester for the New York City Department of Health and Mental Hygiene. Johnson-Dash, who is also a survivor of sex trafficking, considers herself a “lifelong social justice warrior.”

“The majority of the people who I worked the streets with who were active sex workers were socioeconomically oppressed,” Johnson-Dash says. “Some had criminal records, so they couldn’t get jobs; some had families who didn’t want them because they were queer; and some didn’t want to be a part of the shelter system, so they did sex work to pay for housing. We weren’t a part of regular society, so we had to do what we had to do to survive.”

More than two decades later, a question lingers in her mind: Why did she lose so many of her friends to the virus?

According to the HIV education organization Avert, sex workers’ risk of contracting HIV is, on average, 10 times greater than individuals in the general population.

And a meta-analysis from The National Center for Biotechnology Information concluded: “Very few studies have documented the prevalence of HIV among female sex workers in the United States; however, the available evidence does suggest that HIV prevalence among this vulnerable population is high.”

Why, then, while both national and global HIV rates fall, does risk for sex workers remain high? The most recent of several possble reasons is FOSTA-SESTA, a law signed by President Donald Trump in April.

The images illustrating this feature are part of a new series of work by HIV-positive artist Ben Cuevas titled Reinserted.

This artwork merges archival photographs of people taken by Annie Sprinkle with present-day photographs taken by Cuevas of various locations in Times Square that were once the sites of adult entertainment venues.

The HIV status of the subjects in the photos is unknown.

THE LAW IS NAMED AFTER THE HOUSE BILL “ALLOW STATES AND Victims to Fight Online Sex Trafficking Act” (FOSTA) and the Senate bill “Stop Enabling Sex Traffickers Act” (SESTA). It’s aimed at fighting sex trafficking by reducing legal protections for online platforms. In short, the federal government wanted to stop sex trafficking by shutting down sites thought to be promoting it.

Since the law’s enactment, classified ad site Craigslist has eliminated its personals section and the similar website Backpage has shut down entirely (though a different law was used to justify its closure). Both forums allowed sex workers to promote their services, and many sex workers say the law does more harm than good.

“Trafficking is a subindustry of the sex industry; the sex industry is not sex trafficking,” Johnson-Dash says. “There’s no differentiation in the FOSTA-SESTA law. They push people out of their safe zones. They push people away from communities where they can connect with each other for protection. People are back on the streets.”

Johnson-Dash says she remembers the sex trade of 15 years ago, before the internet came into play. It was ugly, she says.

“There’s a different type of client that logs onto the internet to find a sex worker versus someone that’s driving around in a car with $40 above his visor. They’re totally different kinds of clients. The risk is so high,” Johnson-Dash says.

Toni Newman knows these risks. She’s a former sex worker in New York City and the executive director of St. James Infirmary, a peer-based occupational health and safety clinic for sex workers and their families in San Francisco. On the street, she says, safer sex can be harder to negotiate, especially for transgender women of color.

“When I was a street prostitute versus an escort working in my own apartment, I had more control in my own place,” says Newman. “I could decide what I wanted to

poz.com OCTOBER/NOVEMBER 2018 POZ 37

do, whom I wanted to do it with. FOSTA-SESTA has pushed a lot of the sex workers who advertised on Backpage, Craigslist and other places back on the street.”

Competition is often stiffer on the street too, says Matthew Rose, the policy and advocacy manager at the National Minority AIDS Council (NMAC).

“HIV can kill you in decades,” says Rose. “Going hungry can kill you in a week. So the prioritization of the danger to your life is a lot different, and what you’re willing to take as an acceptable risk is also a lot different.”

Magali Lerman, a former sex worker, consultant with Reframe Health and Justice Consulting (RHJ), volunteer with the Safe Night Access Project Seattle and president of Sex Workers Outreach Project–USA (SWOP-USA), says she has recently noticed about five times more workers on the street in Seattle.

“People are doing riskier things, such as condomless anal sex,” says Lerman. “So we’re definitely trying to get preexposure prophylaxis [PrEP] out on the streets.”

Street work can also mean a sex worker has less time to determine whether an interaction will be safe, says Kate D’Adamo, another consultant at RHJ. “There’s nothing inherent to street-based work that makes it any riskier,” says D’Adamo. “When engaging in street-based work, all of the things that make people vulnerable are heightened. You are more visible, so you’re more likely to experience violence.”

FOSTA-SESTA IS JUST THE LATEST COMPLICAtion for sex workers. The perception of the industry itself factors into HIV risk among sex workers. “[Some people] don’t understand what sex work is—it’s survival work,” says Shareese C. Mone, an advocate and a former sex worker. “There is a misconception of what sex work is. A lot of people think, ‘Oh, they’re just nasty,’ not realizing that a whole community is surviving off sex work.”

The link between sex work and HIV has been forged by cultural and social phenomena, including racism, classism, sexism, socioeconomic disparity and—perhaps above all— the criminalization of the sex trade.

“When things are criminalized, there’s no choice but to— for your own protection and safety—go underground, because you’ll at least be able to escape the carceral state,” says Preston Mitchum, the international policy analyst at Advocates for Youth. “However, although you’re escaping the carceral state, there is a high likelihood of acquisition of things like HIV and other sexually transmitted infections [STIs].”

Criminalization of sex work also serves to shift power from the worker to the customer as well as from the worker to the police, rendering condom use and negotiation difficult and otherwise jeopardizing sex workers’ safety.

“You can certainly tell the police [if you’re threatened], but we also know through reports and testimonies from sex workers that police sometimes are some of the greatest harmers of sex workers. That’s what happens when you have an environment that criminalizes them,” says Mitchum.

38 POZ OCTOBER/NOVEMBER 2018 poz.com

Reinserted: Show World, 2018

“IT’S THE STIGMA OF THE W FROM GETTING THE CA A 2012 Human Rights Watch Report detailed the use of condoms as “evidence to support prostitution charges” in New York City, Los Angeles, Washington, DC, and San Francisco, though each city has since limited the use of condoms as evidence or clarified its laws to varying degrees.

“There is the direct policing of condoms and safer-sex supplies,” says D’Adamo of Reframe Health and Justice. “So when a sexual exchange is criminalized and officers are looking for evidence of that interaction, something like condoms — when you’re policing someone—very easily becomes a piece of evidence, which means it becomes criminalized to have that piece of evidence on you.”

Penelope Saunders, the coordinator of Best Practices Policy Project, a sex trade advocacy group, says police will often throw condoms on the ground and destroy them.

“Police can act with absolute impunity toward sex workers,” says Saunders. “Police rape them, police take their condoms, police put sex workers in dangerous situations.”

BUT ACTIVISTS LIKE BURLESQUE ARTIST Akynos, the founder of The Black Sex Worker Collective in New York City, say focusing on the risks of sex work alone can be equally damaging.

“Throwing street-based work under the bus,” Akynos says, became more commonplace after FOSTA-SESTA. “When [sex workers] talk about how much more underground they’re going to have to go and how dangerous streetbased work is, they’re agreeing with the anti-sex work narrative that sex work is inherently dangerous,” Akynos says.

With the internet came the power to vet clients—to screen them via a laptop. Some sex workers, Akynos says, have “fallen into victimhood.”

“Many indoor sex workers let the internet confuse them into thinking that they were in some kind of safe space to work where the government gave a goddamn about sex workers and our rights,” Akynos says. “They don’t.”

Saunders says street-based work isn’t inherently more

Reinserted: Show Center, 2018

ORK THAT PREVENTS THEM RE THAT THEY NEED.” dangerous than any other form of sex work—it’s the criminalization that makes it so risky. And criminalization follows sex workers well beyond the street.

“A lot of sex workers avoid going to the doctor because they can’t find doctors that they can be honest with about their health issues,” says Johnson-Dash.

Problems can range from unwanted social work intervention to misgendering.

“A lot of the cisgender women I know who try to get public health services end up really hating it because most of us identify as some form of LGBTQ,” recalls SWOP-USA’s Lerman, who identifies as homoromantic. She says this is the reason she stopped going to a PrEP (pre-exposure prophylaxis) clinic.

That’s why places that provide culturally sensitive care like the St. James Infirmary are vital. The clinic provides free care supported by donations, and it treats clients without judgment. Executive director Toni Newman says it’s the “first occupational health and safety clinic in the United States run by sex workers for sex workers.”

Most places aren’t as understanding, says Rose of NMAC. “You can’t talk to your doctor about what you do, which means that, especially for women, we’re going to miss risk for you,” says Rose, “and not get you appropriate services.”

NOT GETTING TESTED FOR HIV CAN REACH deeper than a fear of doctors. Fear of testing sits precariously at the intersection of the criminalization of HIV and sex work.

“As to HIV criminalization being a way of targeting sex workers, that’s certainly the case in the states that have the enhancements—and that’s about a dozen states—where your status can be used as a standalone basis for increasing what would be a misdemeanor crime to a serious felony,” says Kate Boulton, a staff attorney at The Center for HIV Law and Policy.

Some states impose mandatory HIV testing and felony upgrades for sex workers who know they have HIV. Citing research from sources such as HIV Criminalization in California, a report issued by UCLA’s Williams Institute on

Sexual Orientation and Gender Identity Law and Public Policy, Boulton says laws like this disproportionately affect sex workers.

“The state is obtaining this information about you that it then has in its back pocket, and sex workers are hyper-targeted by the police, so people get arrested over and over and over again,” says Boulton.

Reframe Health and Justice’s D’Adamo says she’s heard some people say testing is the difference between a misdemeanor and a felony.

“You have to know your status before you can be charged with a felony upgrade, so if you don’t know, then they can’t charge you with a felony,” says D’Adamo.

A STUDY OF A PILOT EDUCATION PROGRAM published in The Lancet suggests that the “best way to address HIV/AIDS concerns among sex workers is a peer-led project,” says Saunders of Best Practices Policy Project.

Johnson-Dash remembers counseling others with HIV prevention information gathered from workshops and trainings she attended at LGBT centers. She even wore condoms pinned to her clothes, but her efforts didn’t always pay off.

“I could remember talking to them saying, ‘How did you become HIV positive after all of this talking we’ve done?

‘Oh, well, he had an extra $100, and he said if I just would take the condom off, you know?’ And that’s like person after person after person,” says Johnson-Dash.

Sex work is a minefield of illegalities that the passage of FOSTA-SESTA has only served to compound.

Ending criminalization, says Lerman, would lead to several benefits, including safer ways to report violence. But would it improve health outcomes? Newman believes so.

“If we could legalize it, take away the stigma, the shame, the fear,” she says. “If all that is taken away, I believe, yes, we could get proper testing. People would be more apt to get tested, and I think health-wise it could be better.”

Johnson-Dash agrees. “It’s the stigma of the work that prevents them from getting the care that they need,” she says. “So if the stigma was removed and regulations were put over it, then the people who do provide services can keep themselves healthy to continue providing their services.”

Change may be on the horizon. A Washington, DC, council member recently introduced a bill to decriminalize sex work in the nation’s capital, and a National Sex Workers’ Summit in Los Angeles issued a manifesto in June calling for an end to the criminalization of sex work.

“It’s a package in criminalization of people’s lives. Changing just one law would not solve it all—it needs to be a very sustained local engagement with policy,” says Saunders.

According to a recent report in The Lancet, decriminalization could result in an almost 50 percent drop in HIV cases in the next decade—and, perhaps, could change the lives of those who do sex work.

“Through the grace of God, I did not get HIV,” says Johnson-Dash. “Maybe the reason was for me to keep delivering this prevention message.” Q

poz.com OCTOBER/NOVEMBER 2018 POZ 39

THE IMPACT OF HURRICANE MARIA ON HIV

BY ROD MCCULLOM

ILLUSTRATION BY LIZ DEFRAIN

A

NSELMO FONSECA HAD A PLAN AS HURRICANE Maria approached San Juan, Puerto Rico, late September 2017. The health and human rights advocate packed up his Toyota Prius and headed to a home near the iconic and mist-shrouded El Yunque Peak, the mountain located in the national forest of the same name.

The reinforced concrete house in the hills offered an ideal refuge from the storm that forecasters believed could be the most devastating in the island’s history. Fonseca settled in and eventually fell asleep as the wind and rain intensified on the evening of September 20.

“I woke up at about 2:30 a.m. to this horrible sound,” says Fonseca. “I peered through the wooden planks across the window and saw 50-foot-tall palm trees snapping in half.”

It would be many hours before it was safe to leave the house. When he finally walked outside later that morning, “it looked like a bomb exploded,” recalls Fonseca, who says he didn’t recognize the land that was once a gorgeous rain forest. “The trees were stripped bare—not just of leaves but of bark too. Some were twisted like Twizzlers.”

Fallen trees had barricaded the property, and the road was impassable too. When he returned to the house, there was no electrical power or phone service. Fonseca was stranded for three days.

Thankfully, he had a supply of medications and food. “I’m a long-term survivor living with HIV,” he says. “I also survived a devastating natural disaster. But many other people living with HIV across the island were not as fortunate.”

PUERTO RICO WAS ALREADY REELING FROM A decadelong recession and a financial crisis anchored by more than $72 billion of public debt, the soaring cost of living and high unemployment. Austerity measures threatened to exacerbate public health disparities in diabetes, asthma, cancer, infant mortality and HIV. Puerto Rico ranks in the top 10 of all states and territories in total number of HIV cases. At nearly four

times the national rate, the island’s HIV mortality rate is higher than any U.S. state or territory—except for the District of Columbia. (Guam and the Virgin Islands have insufficient data for calculating HIV death rates.)

Puerto Rico had made progress in its response to HIV. About 20,300 people are HIV positive in Puerto Rico, according to new data from the Puerto Rico Department of Health (PRDH). Last year, 355 new cases of HIV were reported. That’s down from a high of about 3,000 new cases in 1992. The overall HIV diagnosis rate decreased by almost 30 percent between 2007 and 2013, according to PRDH. The mortality rate also dropped by almost one third during this same period.

However, many stakeholders across Puerto Rico—including people living with HIV, service providers, researchers, scientists, psychologists and more—believe it’s too soon to know what the long-term impact will be on HIV care.

A series of overlapping humanitarian crises that have arisen in the aftermath of the storm have left many older residents and people living with HIV particularly vulnerable.

The challenges have been compounded by catastrophic infrastructure failure, a generalized lack of funding and the territory’s structural dependence on the United States, which some analysts have described as neocolonial.

Maria was the third major storm to threaten Puerto Rico, the Caribbean and the United States mainland within a twoweek period in September 2017. Hundreds of thousands of buildings were damaged by wind, flooding and mudslides.

Maria became the worst natural disaster in the history of Puerto Rico, inflicting an estimated $90 billion in damage.

The territory endured a cataclysmic lack of resources— power, water, communication, roads, food and medicine— that lasted for months. More than 80 percent of Puerto Rico’s population of 3.4 million—all American citizens—lost power immediately after the storm. It was the longest and most widespread blackout in United States history. About one third of residents did not have running water.

“I felt like the entire island was going back in time. Everyone had anxiety. It was very stressful because I had to take

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care of myself and my family,” says Ivette González, a San Juan–based health care advocate and HIV adviser to the mayor.

González is the executive director of the Asamblea Permanente de Personas Infectadas y Afectadas con VIH/SIDA de Puerto Rico (Permanent Assembly of People Infected and Affected by HIV/AIDS of Puerto Rico) and has been living with HIV for more than 25 years. González was diagnosed when she was eight months pregnant with her daughter.

Her daughter—now grown with two sons of her own—and a son were born HIV negative thanks to antiretroviral therapy.

“I was without power for three weeks and without water for 17 days,” adds Ángel Luis Hernández, an Arecibo-based educator and advocate with more than 20 years in health care administration. In 2003, Hernández tested HIV positive.

“I’m OK now,” he says. “But many others are struggling.”

gallons of floodwaters were contaminated with toxic chemicals, human waste, spoiled food and more. Mountains of garbage and debris loom in neighborhoods. The waters, mud and waste are breeding grounds for bacteria, infectious diseases, airborne mold spores and pollution. Meanwhile, thousands of generators spew noxious fumes as they power homes and offices.

These toxins can wreak havoc on the immune systems of healthy people, but they could be life-threatening to a person living with HIV and a compromised immune system.

“Doctors say they are seeing an alarming rise in the number and severity of asthma cases that they attribute to destruction caused by the deadly hurricane,” reported the Associated Press in June. “Puerto Rico had high rates of asthma even before the hurricane. An estimated 13 percent had asthma before Maria [compared] to 8.3 percent on the U.S. mainland in 2016.”

“The air quality is horrible,” says Rosa Rivera Aviles, who lives in Fajardo on the island’s east coast. Anselmo Fonseca, who was interpreting for Rivera, also has asthma and was experiencing complications that day too.

“It was a nightmare. I didn’t know Maria was coming because I had been without electricity since Irma [made landfall] about two weeks before,” says Rivera, who lives with her son and her emotional support pit bull terrier.

Rivera tested positive for HIV 21 years ago.

“I went without electricity for 90 days and respiratory therapy for about a month and a half. I eventually got a battery-operated nebulizer from a community group.”

Several studies—most recently a December 2017 metaanalysis in The Lancet—have shown that people living with HIV are more likely to have asthma and chronic obstructive pulmonary disease (COPD), although scientists are not sure why. The data suggest that almost 20 percent of people living with HIV in the United States also have asthma or COPD.

“I’M OK NOW, BUT MANY OTHERS ARE STRUGGLING.”

THE DEVASTATION EXTENDED ACROSS THE TERRITORY’S underfunded and understaffed health care system. Hospitals were overburdened, and people living with acute and chronic conditions—such as asthma, diabetes, kidney failure and HIV—were unable to access care (including dialysis treatment), stay cool, refrigerate medications or power asthma nebulizers or oxygen concentrators.

The official death toll after the storm was only 64. Most experts believe that closer to 5,000 people likely died as a result of complications caused by the lack of resources, according to an analysis of death records by the Harvard T.H. Chan School of Public Health, the University of Colorado School of Medicine and Carlos Albizu University in San Juan.

“The biggest public health issue around the hurricane is how many people died. The challenge is that we don’t have a standard definition related to death,” explains Melissa Marzán-Rodríguez, PhD, a postdoctoral research fellow at the University of Puerto Rico–Medical Science Campus.

Marzán-Rodríguez analyzed the government database of all death certificates filed between September 20, 2017, and March 31, 2018, and published what is believed to be the first data on post-Maria HIV mortality. The preliminary data were presented at the 2018 International AIDS Conference.

“I identified 89 deaths where one of the four leading causes of death was HIV-related,” says Marzán-Rodríguez.

“But it’s highly probable that many people living with HIV who died during that period were not identified. If someone also had diabetes and that was his or her cause of death, it would not be classified as HIV-related.”

By comparison, 43 people died of HIV-related causes in 2016, according to PRDH; in 2015, that figure was 45.

THE STORMS ALSO CREATED AN ENVIRONMENTAL crisis that will likely affect public health for years. Millions of

46 POZ OCTOBER/NOVEMBER 2018 poz.com

INTERVIEWS WITH SERVICE PROVIDERS AND ADVOCATES suggest that many people living with HIV around San Juan were able to maintain uninterrupted antiretroviral therapy thanks to advance planning by community-based organizations (CBOs). Almost half of the territory’s HIV caseload— some 44 percent—is in metropolitan San Juan.

Before the storms, the AIDS Drug Assistance Program storage facility in metro San Juan had a surplus of antiretrovirals. Merck—the manufacturer of HIV therapies such as Crixivan and Isentress—also donated medications.

Those living outside the metro region had poor access to medications after the storm. Ángel Luis Hernández says he had only about a oneweek supply of Descovy and Sustiva, “so it was critical to access my clinic in Orocovis, about 50 miles away. It was

difficult to get there because a mudslide blocked the roads and bridges.” What should have been a 90-minute drive took almost six hours, he says, but he feels very fortunate that he had a car and gasoline to make the journey.

Many people living with HIV had a supply of HIV meds but sustained other health challenges during the hurricane.

Ivette González developed the symptoms of a urinary tract infection (UTI) on the same night that Maria made landfall.

Women living with HIV are at higher risk of developing UTIs. “I was in pain and bleeding badly,” she says. “When the winds subsided, I drove to the emergency room, but it was not open. Then I saw a pharmacy where people were crowded inside. The pharmacist was kind and sold me the antibiotics.”

The seven-member fiscal control board that oversees all fiscal decisions on the island—locally known as “La Junta”— did not have a disaster plan in place, critics say.

“They did not anticipate a disaster of this magnitude.

There also was not a clear jurisdiction of responsibilities between the local and federal governments,” says José Joaquín Mulinelli Rodríguez, the executive director of Coaí, the island’s oldest community-based HIV service organization. “The first response should likely be local, but the local governments do not have any money. It took about two months before the federal government established a presence.”

The slow relief process was a striking contrast to that seen on the mainland. Critics have accused the Trump administration and the Federal Emergency Management Agency (FEMA) of a politicized response.

Politico found “a persistent double standard in the president’s handling of relief efforts for Hurricane Harvey and Hurricane Maria. [A] comparison of government statistics relating to the two recovery efforts strongly supports the views of disaster-recovery experts that FEMA and the Trump administration exerted a faster, and initially greater, effort in Texas, even though the damage in Puerto Rico exceeded that in Houston.”

The majority of Puerto Ricans who applied to FEMA for assistance have not been approved.

At least 335,748 applications from Puerto Ricans requesting disaster assistance have been denied, according to NBC News. Almost 80 percent of appeals have been denied or remain unanswered.

One major challenge is proving ownership or tenancy, which can be difficult to do in households of extended families and/or generations, which are common across Puerto Rico.

Another problem is that documents may not reflect the affected person’s gender identity.

“We had to advocate for a 72-year-old transgender woman [living with HIV] whose roof was destroyed,” says Fonseca.

Fonseca cofounded Pacientes de SIDA pro Política Sana (AIDS Patients for Sane Policies) in 1999. “FEMA would not help her. The agency’s online claim process [generated] a fraud alert because she did not have [official] documentation.

We found help to fix her roof, provide food and a stove top.”

AIDS United’s Hurricane Relief Effort is among the larger community-based responses. The initiative funds

HIV CBOs and people living with HIV across the Southern states, Puerto Rico and the U.S. Virgin Islands that were affected by the destruction from Hurricanes Harvey, Irma and Maria. More than $2.4 million was raised in partnership with the National Minority AIDS Council.

More than $1.4 million has reportedly been allocated.

AIDS Healthcare Foundation sent 150 generators to Puerto Rico for CBOs and people with HIV, says Ivette González.

“WE DON’T KNOW THE HURRICANE’S IMPACT ON HIV [care and treatment] because it hasn’t been documented. We may never have the data because the government is severely under-resourced. But that’s why it’s important for survivors to share their stories,” says Carlos E. Rodríguez-Díaz, PhD, associate professor at the University of Puerto Rico–Medical Science Campus. Rodríguez-Díaz’s research focuses on populations rendered vulnerable by the HIV epidemic.

Rodríguez-Díaz and colleagues—including MarzánRodríguez, whom he is mentoring—are conducting focus group interviews with men who have sex with men who attempted to access HIV services after the hurricane.

“The interviews reveal something very interesting about the science of resistance. When we ask people, ‘What impact did the hurricane have on your HIV care?’ they will say it didn’t have any impact. But then they will realize, ‘Yes, it did because I had to change clinics’ or ‘I shared my medications.’

That speaks to the resilience and resistance.”

The calamities that have cascaded across this Caribbean island even before Hurricane Maria—rapid job loss, soaring cost of living, austerity—have taken their toll on the collective mental health. Public health experts believe that many residents suffer from anxiety, depression and posttraumatic stress disorder. Post-Maria, isolation, a lack of electricity and communication, and an inability to access health care have triggered a surge in suicides among older Puerto Ricans, according to the government.

Waves Ahead represents a community-based response to the mental health needs of many Puerto Ricans. The organization was cofounded by Wilfred Labiosa, PhD, a San Juan– based psychologist who, along with a small staff, is delivering mental health and case management services to older LGBT Puerto Ricans and people living with HIV. Labiosa began working with the American Association of Retired Persons and SAGE in early 2017. Together, they’ve provided services to about 1,200 people since October, he says.

“When the hurricane hit, we saw the need to bring those services—including water and food,” says Labiosa. “We’re rebuilding 10 homes that weren’t approved for federal disaster relief. We’re also rebuilding the mental health of older people living with HV, their partners, friends and families.”

“It’s heartbreaking to see so much of the work that we’ve accomplished in the past 20 years gone and having to start over,” says Anselmo Fonseca. “I have been on the phone almost screaming, begging and pleading for more doctors and specialists. That’s how we lost a lot of human lives. I’m determined not to lose more.” Q

poz.com OCTOBER/NOVEMBER 2018 POZ 47

HEROES ALICIA GREEN

Surviving Still

48 POZ OCTOBER/NOVEMBER 2018 poz.com

Jesús Guillén

fights for HIV long-term survivors.

ANGELA DECENZO

Jesús Guillén left behind everything he knew and loved in Mexico to immigrate to the United States in 1984. A year later, he tested positive for HIV. “I felt like I needed to move somewhere else to keep learning in life,” says the HIV advocate and independent consultant, who lives in San Francisco. “I just took that risk.”

After his initial HIV test came back positive in 1985, Guillén got tested five more times before finally accepting his diagnosis.

Without family or a community to turn to for support, Guillén faced his condition alone for many years. But he never gave up.

Knowing how a lack of community can affect people living with HIV, especially long-term survivors, Guillén took action.

In 2015, he created the HIV Long Term Survivors group on Facebook, which has nearly 5,000 members and is open to everyone who identifies as a long-term survivor, including those diagnosed since the advent of effective antiretroviral treatment for HIV in 1996.

“My conception from the beginning was to open a group that was based on acceptance and inclusiveness and not on denial of whoever you are,” he says.

Guillén is incredibly proud of the diverse Facebook group, which includes women, transgender people, heterosexual men, men who have sex with men, and more.

He is also the cochair of San Francisco’s HIV and Aging Workgroup and a member of the Long Term Care Coordinating Council, which advises the mayor on policy pertaining to older adults and people with disabilities.

One of his many ambitions is to connect organizations for people living with HIV with those for older adults. “Most of us didn’t plan to have a life growing older, so we’re not prepared now,” Guillén explains. “We don’t have those resources.”

In 2016, Guillén was featured in the award-winning documentary Last Men Standing, which chronicled the stories of eight HIV long-term survivors in San Francisco.

He also appeared in the film’s poster.

“I was the one representing this community with constant pain,” says Guillén, who suffers from neuropathy. “I was representing the immigrants and Latinos.”

A singer and composer, Guillén wrote the song “Surviving Still” to raise awareness of the plight of long-term survivors.

“We have to get out of the HIV bubble and talk to the world,” Guillén says. “The world needs to know what happened after the early days of the epidemic and what happened to these people now growing older with HIV.”

STOPPING THE VIRUS CAN START WITH YOU.

Here are two resources that can help.

Watch videos, share information, and see how we can all help stop the virus.

HelpStopTheVirus.com YouTube.com/HelpStopTheVirus HelpStopTheVirus.Tumblr.com

Get the answers you need, privately, on your phone.

HIVanswers.com/app

HIV ANSWERS, the HIV ANSWERS Logo, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc. All other marks are the property of their respective owners. © 2018 Gilead Sciences, Inc. All rights reserved. UNBC5702 06/18

Aprende más sobre la prevención y el tratamiento del VIH para más mantenerse Aprende sobre lasaludable. prevención y el tratamiento del VIH para mantenerse saludable.

¿QUÉ ES EL VIH/SIDA? El término VIH significa virus de inmuno¿QUÉ ES EL VIH/SIDA?

deficiencia humana.

El término significa El término VIH significa virus de SIDA inmunosíndrome de inmunodeficiencia adquirida. deficiencia humana. El término SIDA significa El SIDA es una condición causadaadquirida. por el VIH. síndrome de inmunodeficiencia

El SIDA es una condición causada por el VIH. El VIH ataca al sistema inmunitario del cuerpo que lucha contra las infecciones.

Cuandoinmunitario el sistema inmunitario no funciona, se El VIH ataca al sistema del cuerpo que lucha contra pierde esta protección sesistema pueden inmunitario desarrollar graves infecciones las infecciones.

Cuandoy el no funciona, se y cánceres que a menudo pueden ser mortales. pierde esta protección y se pueden desarrollar graves infecciones

Visita POZ.com/es Visita para más POZ.com/es información para más en español. en información español.

y cánceres que a menudo pueden ser mortales.

Todos los medicamentos que se comercializan para el tratamiento del VIH funcionan interfiriendo en este proceso.

Todos los medicamentos que se comercializan para el tratamiento del VIH funcionan interfiriendo en este proceso.

TRANSMISIÓN Y RIESGOS DEL VIH El VIH se puede transmitir a través del contacto TRANSMISIÓN Y RIESGOS DEL sexual, VIH el intercambio

deVIH agujas y de madre a hijoaal nacer.

Raramente se puede El se puede transmitir través del contacto sexual, el transmitir intercambio en un entorno de atención médica o al recibir una donación de sangre de agujas y de madre a hijo al nacer. Raramente se puede transmitir oen una donación de otros factores de coagulación sanguínea. un entorno de atención médica o al recibir una donación de sangre o una donación de otros factores de coagulación sanguínea.

El VIH no puede transmitirse a través de la orina, materia fecal, vómito o sudor.

Está tan presente en lasalágrimas, las ampollas o en lao saliva El VIH nopoco puede transmitirse través de el la fluido orina, de materia fecal, vómito sudor.que no se puede transmitir.

Está tan poco presente en las lágrimas, el fluido de las ampollas o en la saliva que no se puede transmitir.

Prácticamente, no existe riesgo de transmisión si la persona que vive con el VIH recibe un tratamiento antiretroviral efectivo y mantiene una carga viral indetectable.

Prácticamente, no existe riesgo de transmisión si la persona que vive con el VIH recibe un tratamiento antiretroviral efectivo y mantiene una carga viral indetectable.

PREVENCIÓN DEL VIH Hoy en día existen muchas disponibles para prevenir la PREVENCIÓN DELherramientas VIH

transmisión del VIH. Aunqueherramientas no haya una cura o vacuna, tenemos losla Hoy en día existen muchas disponibles para prevenir medios suficientes dar fin la epidemia Estados Unidos y transmisión del VIH.para Aunque noahaya una curaen o los vacuna, tenemos los alrededor del mundo. medios suficientes para dar fin a la epidemia en los Estados Unidos y alrededor del mundo.

Considera los siguientes métodos de prevención: hazte la prueba; practica sexo seguro; usalos la siguientes profilaxis pre-exposición al VIH (PrEP); recibe tratamiento; reduce Considera métodos de prevención: hazte la prueba; practica sexo el riesgo en el consumo de las drogas inyectables; reduce la transmisión de madre seguro; usa la profilaxis pre-exposición al VIH (PrEP); recibe tratamiento; reduce a hijo; y toma la profilaxis post-exposición al VIH (PEP). el riesgo en el consumo de las drogas inyectables; reduce la transmisión de madre a hijo; y toma la profilaxis post-exposición al VIH (PEP).

DIVULGACIÓN

a hijo; y toma la profilaxis post-exposición al VIH (PEP).

DIVULGACIÓN DIVULGACIÓN Ya sea que acabas de enterarte de que eres VIH positivo/a o que

Ya seaestado que acabas de enterarte de por queun eres VIH positivo/a o quese hayas viviendo con el virus tiempo, seguramente hayas estado viviendo con elvida virusen por tiempo, seguramente se presentarán situaciones en tu lasun que deberás decidir si quieres en VIH. tu vida en las que deberás decidir si quieres opresentarán no divulgarsituaciones tu estatus de o no divulgar tu estatus de VIH. La decisión de a quién contarle que tienes VIH es solo tuya. A menudo puedes La decisión de quién contarle que tienes VIH es tuya. Aentre menudo puedes y encontrarte en a situaciones donde has de buscar unsolo equilibrio la honestidad encontrarte donde has una de buscar un equilibrio entre la honestidad y la protecciónen desituaciones tu privacidad.

No hay respuesta que sea la correcta para todos. la protección de tu privacidad. No hay una respuesta que sea la correcta para todos.

COMENZAR EL TRATAMIENTO CONTRA EL VIH COMENZAR EL TRATAMIENTO CONTRA EL VIH Aprende todo lo que puedas acerca de los pros y contras de todas tus

Aprende que puedas acerca deluchar los pros y contras todas tus opciones.todo Estaloes tu mejor arma para contra el VIH.de Las guías de opciones.

Esta es tu mejor arma para luchar contra el VIH. Las guías tratamiento recomiendan comenzar la terapia de los medicamentosde tratamiento recomiendan comenzar la terapia de medicamentos antiretrovirales poco después del diagnóstico dellos VIH. Sin embargo poco despuésdependerá del diagnóstico del VIH. Sinyembargo laantiretrovirales decisión de iniciar la terapia de tu salud física de tu la decisión de iniciar la terapia dependerá de tu salud física y de tu disposición para comenzarla y continuarla. disposición para comenzarla y continuarla.

VIH/SIDA EN ESPAÑOL VIH/SIDA EN ESPAÑOL Obtén más información sobre estos temas:

Obtén más información sobre estos temas: • Medicamentos anti-VIH • ¿Qué es el VIH/SIDA? es el VIH/SIDA? • Recomendaciones Medicamentos anti-VIH • ¿Qué Transmisión y riesgos del VIH para el tratamiento del VIH • Transmisión y riesgos del VIH • Recomendaciones para eltratamiento tratamiento del VIH Pruebas del VIH Pagar por la atención y el Pruebas deldel VIHVIH Pagar la atención • Prevención • El VIH por y toda tu salud y el tratamiento Prevención El VIH y todaaltu salud • PEP y PrEP del VIH • Adherencia tratamiento para el VIH • PEP y PrEP • Adherencia al tratamiento para el VIH Diagnóstico reciente El VIH y la hepatitis C (VHC) • Diagnóstico reciente • El VIH y la hepatitis C (VHC) Divulgación Infecciones oportunistas Divulgación Infecciones oportunistas • Comenzar el tratamiento para el VIH • Discriminación en el empleo • Comenzar el tratamiento para el VIH • Discriminación en el empleo

El 15 de octubre es el día nacional latino de la concientización del SIDA. El 15Visite de octubre es el día nacional latino de la concientización del SIDA. NLAAD.org/es para más información sobre la campaña.

Visite NLAAD.org/es para más información sobre la campaña.

A AHEALTHIER HEALTHIERLIFE LIFECAN CANSTART START WITH WITHHIVHIVTREATMENT. TREATMENT. Starting Starting HIV HIV treatment treatment asas soon soon asas possible possible Starting HIV treatment as soon as possible helps helps stop stop the the damage damage HIV HIV causes causes toto your your helps stop the damage HIV causes to your body. body.

Plus, Plus, doctors doctors and and scientists scientists have have found found body.

Plus, doctors and scientists have found that that it it can help help reduce reduce the the risk risk ofof some some that it can can help reduce the risk of some infections, infections, certain certain cancers, cancers, and and even even AIDS. AIDS. infections, certain cancers, and even AIDS.

TREATMENT TREATMENTHELPS HELPSPREVENT PREVENTTHE THESPREAD SPREADOFOFHIV. HIV. Starting Starting and and sticking sticking toto HIV HIV treatment treatment can can lower lower Starting and sticking to HIV treatment can lower the the amount amount ofof virus virus inin the the body body soso much, much, it it can’t bebe the amount of virus in the body so much, it can’t can’t be measured measured byby a test. aa test.

It’sIt’s called called being being undetectable. undetectable. measured by test.

It’s called being undetectable.

According According toto current current research, research, sticking sticking toto daily daily According to current research, sticking to daily treatment treatment and and staying staying undetectable undetectable means means there’s there’s treatment and staying undetectable means there’s basically basically nono risk risk ofof spreading spreading HIV HIV through through sex. sex. basically no risk of spreading HIV through sex.

HIV HIV is is still inin the the body, body, and and being being undetectable undetectable HIV is still still in the body, and being undetectable doesn’t doesn’t prevent prevent other other STIs. STIs. SoSo use use condoms condoms doesn’t prevent other STIs. So use condoms and and practice practice safer safer sex. sex. and practice safer sex.

TALK TALKTOTOYOUR YOURHEALTHCARE HEALTHCAREPROVIDER. PROVIDER.

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