POZ January/February 2016

A SMART+STRONG PUBLICATION JANUARY/FEBRUARY 2016 POZ.COM $3.99

H E A L T H ,

L I F E

&

H I V

Black Lives Matter Fighting violence and HIV

Ashton P. Woods

CONTENTS

EXCLUSIVELY ON

POZ.COM

Christina Rodriguez told her boyfriend she has HIV on their first date.

POZ STORIES

REAL PEOPLE, REAL STORIES

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

D

POZ GLOBAL

COVERING THE PANDEMIC

Our domestic fight against HIV/AIDS is different from the other battles against the virus overseas, but our struggles have more in common than not. Go to poz.com/global for news and opinions on HIV/AIDS from around the world.

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

26 BLACK LIVES MATTER Finding common cause in fighting violence and HIV. BY OLIVIA FORD 32 YOU CAN’T HURRY LOVE Navigating sex and disclosure while living with HIV. BY CASEY HALTER 5 FROM THE EDITOR Don’t Get Me Wrong

7 FEEDBACK

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8 POZ Q+A

Two experienced black leaders from amfAR, The Foundation for AIDS Research, talk about 2016 priorities: Greg Millett is the vice president of amfAR and director of its public policy office, and Kali Lindsey is the deputy director.

10 POZ PLANET

Charles Stephens of Counter Narrative Project on the art of speaking out • Sergeant Tanner White brings country singer Steve Grand to the Marine Corps Ball • Charlie Sheen and Danny Pintauro put HIV in the news • Chloe Dzubilo’s transgender body of work • Turing Pharmaceuticals • Alan Cumming to play restaurateur Florent Morellet in a Showtime series

17 VOICES

Joe Burke, who lives with HIV, hepatitis C and hemophilia, offers rules for finding that special someone.

18 SURVEY SAYS

What stresses you out, and how do you deal with it?

19 RESEARCH NOTES

The power of TasP • potent antibodies as potential treatment • a call to revamp cure research • concerns about quality of life

20 CARE AND TREATMENT

Experience counts in HIV care • WHO calls for broader ARVs • HIV prevalence is steady; treatment rate is low • cancer concerns • sexually transmitted hepatitis C in gay men

38 POZ HEROES

Activist, author and tell-it-like-it-is blogger Rae Lewis-Thornton on looking for love and living with the virus

POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for a 8-issue subscription) by Smart + Strong, 212 West 35th Street, 8th Floor, New York, NY 10001. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 209. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2016 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® is a registered trademark of CDM Publishing, LLC.

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Don’t Get Me Wrong

I

DON’T IDENTIFY AS BLACK, BUT my genes would beg to differ, or at least offer evidence for me to reconsider my self-labeling as a white Latino. My light skin color is less revealing than it may seem. My family tree provides a more complex picture of my racial identity.

Two of my great-grandparents were black.

Many of my other great-grandparents were of mixed skin color. Two of my grandparents had darker skin. Using fuzzy math, I could argue that I’m nearly half black. That would be true for many Latinos, if not most. Despite my bloodlines, I don’t identify as black.

The simple explanation has to do with my light skin color; if I had darker skin, it would be much easier to make the case. The less simple answer is that race and racial identity are not so simple. Things like culture, socioeconomics and life experience come into play.

Some of us have the luxury of being able to choose how to identify racially, but based on our appearance, most of us do not. As a result, society labels us and we then label each other. Those labels carry assumptions and lead to consequences.

For black people, those consequences too often can be deadly.

The Black Lives Matter movement was born out of frustration with those deadly consequences. Although the deaths of black people at the hands of police remain a focus of the movement, the idea of confronting violence committed against black bodies in general has expanded its scope of advocacy.

Our cover guy, Ashton P. Woods of Black Lives Matter Houston, is a great example.

As an HIV-positive gay black man, Ashton brings all those identities to the table. Black Lives Matter activists are now finding common cause in fighting violence and related issues like HIV. Go to page 26 to read more about the intersections of both movements.

Black leaders were fighting HIV/AIDS at the beginning of the epidemic, and many of them do so now. Some live with the virus, and others don’t. That’s not unusual. What is rare is having two experienced HIV-positive black leaders team up to lead policy advocacy.

Such is the case at amfAR, The Foundation for AIDS Research.

Greg Millett and Kali Lindsey are that duo. Greg is a vice president of amfAR and director of the public policy office.

Kali is deputy director. The combination of Greg’s research experience with Kali’s grassroots know-how is a winner. Go to page 8 to find out their 2016 priorities.

A priority we all can relate to is finding love. It’s never easy for anyone, regardless of HIV status, but living with the virus can make dating even more difficult. Go to page 32 for advice from four HIV-positive people with different takes on navigating sex and disclosure while living with HIV. Although four people offer advice, five people offer disclosure tips. The fifth person is Rae Lewis-Thornton. We first asked her to contribute to the disclosure story, then realized she had more to share. Go to page 38 for what the blogger and activist has been up to in the two decades since she graced the cover of Essence magazine.

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 JANUARY/FEBRUARY 2016 POZ 5

FEEDBACK

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longtime survivor, grateful that the military has taken good care of my medical condition throughout all these years.

HUGO TORRES

As a Vietnam-era veteran who was diagnosed with HIV after serving in the U.S. Army, I understand the stigma, medical and mental wellness issues. We need to bring standards up to date so that military people with HIV may serve fairly and openly.

HYPE MACHINE

Benjamin Ryan’s POZ magazine feature “The Cure for HIV Is Not Around the Corner” (October/November 2015) questioned the hype and hyperbole in the mainstream media’s coverage of current HIV/AIDS research, and it argued that we might still be decades away from the end of ARV treatment.

Most who understand the science and politics at work realize “a cure is not around the corner.” A better article would’ve focused on what we can do to advocate for a cure. True leadership acknowledges a problem and proposes a solution.

MICHAEL

No use in being pessimistic about it. We have to be more open-minded and inquisitive about our healthy futures.

ACE MONROE ZAMORA

Excellent summary of where we are with the search for a cure. HIV is a difficult virus to eradicate, but there is so much research going on that someday—maybe not in my lifetime (I’m 66)—a cure will likely be discovered.

DOCJOHNINDC

We need to energize and support scientists working in this field. You see the trajectory of abstracts at the [International AIDS Conferences] from 2010 to now and it’s amazing.

Science is hard work.

YANNIS @MYLITTLEBAKLAVA

FIGHTING FOR RIGHTS

In the POZ feature “Mission Critical” (October/November 2015), Rita Rubin examined the struggles that people living with HIV face in order to serve in the U.S. military.

I commend these American warriors having the courage to speak truth to power. After living five years with my spouse who is a retired officer, I have been privileged to know a lot about HIV and the political side of military leadership. The HIV rate has never been revealed in truth.

FREDERICK WRIGHT-STAFFORD

I turned HIV positive in 1985 while serving my second enlistment in the Navy. I remember the infectious disease officer came into my isolation room decked out in a “space suit” to give me the sentencing notice. I’m a

REGGIE DUNBAR II

SPEAKING OUT

HIV activists and Who’s the Boss? fans alike applauded when former child star Danny Pintauro disclosed his HIV-positive status during an Oprah TV special. He earned further sympathy after a confrontational interview on ABC’s The View. But as his “Beacon of Light” tour went on, he received criticism for claiming that he always used condoms properly, and so he must have contracted HIV from oral sex, saying “It’s that easy.” POZ blogger Mark S. King was among those who took Pintauro to task with the post “How Do We Solve a Problem Like Pintauro?”

(October 7, 2015). Pintauro has since clarified that he is not sure how he got HIV. I have great hopes for Danny as an advocate. He certainly got a lot of people talking

about HIV. I just hope he can get to the place where he realizes that it doesn’t really matter how he was infected.

What matters is how you handle it, and what’s next.

CHARLES

Why are you on the one hand giving him the space for incongruity under the weight of stigma while at the same time projecting onto him your sensationalist accusations?

He’s trying to muster up the courage to share his own narrative. Enliven, enlighten and clarify if you must, [but] without the antics.

RCD

He clearly did not map this out for himself in face of public scrutiny. He may need some help and guidance. I don’t need him to publicly disclose his details. He just needs to be honest with himself.

BILL BROCHINSKY

Mark S. King replies: Let me be the first to call myself out: My take on Danny is pretty rough on him. This is certainly not how I would typically treat a fellow person living with HIV, and certainly not someone newly diagnosed.

But Danny’s situation felt different to me; he walked (back) into the spotlight and asked to be seen as a role model and arbiter of gay social/sexual conduct. Our community deserves prominent people discussing HIV— but not at any cost.

POZ ON LOCATION

Since the beginning of the epidemic, AIDS activists have protested injustice and demanded better access to treatment.

From the May 1990 “Storm the NIH” action as depicted in Hunter Reynolds’s artwork at PPOW Gallery, to October’s protest of Turing Pharmaceuticals, activists continue to act up and fight back. For more advocacy photos, follow POZ on Instagram @pozmagazine.

poz.com JANUARY/FEBRUARY 2016 POZ 7

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

Recent reports from the amfAR public policy office

POSITIVE POLICY

Greg Millett and Kali Lindsey on the 2016 public policy priorities for amfAR and the fight against HIV/AIDS

G

REG MILLETT, MPH, IS A VICE PRESIDENT OF AMFAR, THE Foundation for AIDS Research, and the director of its public policy office.

Kali Lindsey is deputy director. The dynamic duo leads the efforts of amfAR to educate policymakers, the media and the general public on policies that will help end HIV/AIDS as a public health concern.

Prior to amfAR, Millett was the Health and Human Services/Centers for Disease Control and Prevention (HHS/CDC) liaison to the White House Office of National AIDS Policy (ONAP). Before that he was a senior policy advisor at ONAP. He was one of three principal writers of the National HIV/AIDS Strategy. His research on HIV disparities among black men who have sex with men (MSM) has been credited with changing the assumptions of researchers.

Before joining amfAR, Lindsey was director of legislative and public affairs for the National Minority AIDS Council (NMAC). Prior to that, he was senior director for federal policy at Harlem United. He also was vice president for federal government affairs at the now-defunct National Association of People With AIDS (NAPWA).

As HIV-positive African Americans, both men use their personal experience living with the virus to inform their public policy work. They also use their complementary skills, Millett the epidemiologist and Lindsey the grassroots activist, to further their efforts. Here, they share domestic and global priorities for 2016.

Let’s start with your domestic priorities for this year.

Millett: Advocates

did an amazing job in 2008 in getting presidential candidates John McCain and Barack Obama to agree to a National HIV/AIDS Strategy. We would like to join other advocates in doing similarly in the 2016 elections.

On the Democratic side, we’ve met with the Hillary Clinton campaign and plan on meeting with the Bernie Sanders campaign. We’re waiting for the Republican field to whittle down before we can figure out which campaigns we need to reach.

It’s important that the next administration continues the successes that have been made at the federal level, continues to fill the gaps that we have in implementing

8 POZ JANUARY/FEBRUARY 2016 poz.com

the strategy, and works hard to implement the strategy at the local level.

Lindsey: One

of the things amfAR has always prioritized and continues to prioritize is the need to focus on key populations in our response to the HIV epidemic, both domestically and abroad.

As we have those conversations with a prospective president for 2017, we want to focus on populations who have remained historically underserved, but are overrepresented in the HIV epidemic, such as young gay men of color and African-American women.

We also want to focus on the need to expand Medicaid in the South, and ensure that promising HIV research, such as pre-exposure prophylaxis (PrEP) and treatment as prevention (TasP), can be realized throughout the South and in key populations.

We’ll be holding a conference this spring on Capitol Hill highlighting these issues for members of Congress and their staff. We’re going to emphasize the importance of funding HIV research by the National Institutes of Health (NIH), especially investments in cure research.

Another focus for us that we did not anticipate was making sure that Millett:

we hold ground in our successes when it comes to injection drug users (IDUs).

The IDU epidemic has been a success story for so long in the United States, with a 70 percent decline in new HIV diagnoses among IDUs between 2002 and 2011, and that continued through 2013, according to CDC data.

But the Scott County HIV outbreak among IDUs in Indiana was a canary in the coal mine for a lot of us: that we can’t rest on our laurels, that there still is a possibility that we could see a spike in cases among IDUs. The thing that was particularly worrisome about that incident was the striking number of cases, over 160.

We are committed to rolling out a multifunctional online map of syringe exchange programs. People can search what’s taking place in specific localities, how many people are being served, how long that program has been up, and what type of funding it ’s receiving.

People wou ld be able to compare that information to the epidem ic a mong IDUs within those states.

Greg Millett If there’s a silver lining to the HIV outbreak in Indiana, it’s that policymakers who were against syringe exchange programs are listening.

Syringe exchanges are a big success story, but unfortunately many IDUs diagnosed with HIV experience worse health outcomes after their diagnosis. Localities need to figure out how they can bring their systems and resources to bear to address that.

The opiate epidemic, largely in white communities, often not urban, is shaking those communities to their core. It’s causing them to call their governors, and their governors are calling their members of Congress.

COURTESY OF GREG MILLETT AND KALI LINDSEY

Lindsey:

Let’s talk about your global priorities.

Lindsey: The

language du jour in the global response, I’d say, is fast-tracking

scale-up. The Joint United Nations Programme on HIV/AIDS (UNAIDS) came up with its fast-track strateg y with its 90-90-90 goals. [That means having 90 percent of people living with HIV know their serostatus by 2020, getting 90 percent of those people on treatment, and having 90 percent of that group achieving an undetectable viral load.]

Largely, the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) and the Global Fund to Fight AIDS, Tuberculosis and Malaria have embraced those goals. Capitol Hill still hasn’t, so there’s a lot more work that we need to do to restore losses to PEPFAR. We have a critical opportunity to deal a heavy blow to the HIV epidemic if we concentrate our resources and our efforts, but we need the level of investment that is necessary to marshal that response,

Kali Lindsey

operational plans (COPs). [COPs are like our National HIV/AIDS Strategy.]

One way we’re helping out with the COPs process is amfAR developed a database last year, called the PEPFAR Country/Regional Operational Plans database, which is available at copsdata.amfar.org.

COPs aren’t friendly documents; they’re about 500 pages, usually a PDF or a Word document, and that’s only for one year, so imagine several years of these documents, trying to understand where the trends are in funding, what’s taking place for key populations.

So we pulled these data into a database where you can do trend analyses, see how funding has increased or decreased in particular countries. What were some of the specific contracts? Who was awarded those contracts and what Millett:

“ It’s important that the next administration continues the successes.”

and we’re going to be having that conversation concretely throughout this year on Capitol Hill.

Millett: Another

priority for us in terms of global HIV is access to generic medications. The Trans-Pacific Partnership (TPP) is probably not going to be passed until the lame duck session in late 2016, which gives us an opportunity to talk with members of Congress about some TPP provisions that we think unfairly limit access to generic medications for countries that are part of the pact. It has implications not just for HIV, but for hepatitis C and other conditions.

Lindsey: Returning to PEPFAR, we want to acknowledge its enhanced efforts to engage a broad cross-section of civil society to get the best results from its country

were they awarded to do? All of that is laid out very nicely graphically.

We’re working with civil societies in different countries to help them become used to using the database, so that they can take a look at what’s taking place within their own countries, and to help it inform planning efforts as they move forward with the PEPFAR process.

Why do you work in public policy?

Millett: I’ve

seen the power of policy to impact people’s lives. To reduce HIV cases or to keep people in care, policy is where the levers of powers are.

Lindsey: Death

from HIV/AIDS wasn’t my experience, neither in my childhood nor once I was diagnosed, but rampant discrimination was. That drives me. ■

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POZ PLANET

BY TRENTON STRAUBE

Charles Stephens founded Counter Narrative Project.

THE ART OF SPEAKING OUT

Charles Stephens, the founder and executive director of Counter Narrative Project, talks with POZ about CNP’s goal of amplifying the voices of black gay men and how HIV fits in with the movement.

How does CNP differ from other groups aiming to empower gay black men?

CNP is one of the few black gay men’s organizations that is not centered around service provision. We are also intentional about being an intergenerational space.

We are not membership based. However, anyone can get involved through participating in our Twitter chats, connecting to one of our webinars, following us on social media, helping to support the development of one of our public statements, or getting involved in one of our campaigns or projects as they come up.

CNP is committed, as your website states, “to art and culture as tools of transformation.” Can you explain?

One of the most powerful ways to reach black gay men is through art and culture, and then engaging them in critical dialogue around the work. The Marlon Riggs film Tongues Untied can open up a discussion about how racism and homophobia impact black gay men’s lives and identity development. The Adodi Muse work “It Begins” is a great tool to spark discussion about HIV stigma and trauma.

There has been some impressive work done attempting to better train and equip clinicians and service providers on how to reach black gay men. However, if they are not engaging black gay men’s cultural production, they will be severely lacking in their understanding of our communities.

You still hear black gay men saying things like, “Tongues Untied saved my life.” We have not even started to figure out strategies to build programming and

10 POZ JANUARY/FEBRUARY 2016 poz.com

advocacy efforts around these lifesaving tools and strategies.

CNP spearheaded support for gay wrestler Michael Johnson, who was convicted under HIV criminalization laws in Missouri. How does this case illustrate CNP’s goals?

Our work with Michael Johnson taught me that many black gay men are very interested in fighting HIV criminalization. We just have to be engaged. Much of the HIV advocacy landscape in general, and certain HIV decriminalization advocacy, lacks an analysis that considers anti-black violence and certainly the particular forms of structural violence that black gay men experience.

How would you place HIV/AIDS in the context of CNP’s work?

It’s an issue I can’t not be engaged in, especially when you look at how black gay men are being impacted. But HIV is not central to CNP; building power among black gay men is central. I’m hoping that we focus on asking questions like, What does it mean that so many black gay AIDS service organizations have shut their doors? How do we as black gay men deal with and heal from our personal and collective trauma?

How do we as black gay men institutionalize our HIV activism movement history? What does the clinical turn in HIV prevention and treatment mean for our community-building efforts? How do we support black gay men in their 50s, 60s and beyond, and also support younger black gay men?

STARS & STRIPES In his YouTube advocacy channel, Tanner White bills himself as your favorite HIVpositive gay Marine. Who could disagree? In a series of videos, the 23-year-old sergeant, stationed in North Carolina, answers questions about life with HIV. He also launched an organization called A Positive Tomorrow to educate about the virus and fight stigma. To that end, White publicly invited country singer Steve Grand to attend the 2015 Marine Corps Ball. Grand accepted, and the two had an “amazing” time, White says. “My goal was to show people that you need to never give up on yourself and that you need to put yourself out there in order to get what you want in life—as well as to gain a friend and ally in my fight against HIV stigma.”

Mission accomplished!

Sergeant Tanner White brings country singer Steve Grand to the Marine Corps Ball.

Hot Dates / February 7:

HIV HEADLINERS

(STEPHENS) COURTESY OF CHARLES STEHPENS; (TANNER AND STEVE) COURTESY OF TANNER WHITE; (PROTEST) MICHAEL HALLIDAY; (PINTAURO) GETTY IMAGES/MARK SAGLIOCCO; (FLORENT RESTAURANT) JENNIFER MORTON; (TV AND CUMMING) ISTOCK

In what is probably the biggest celebrity HIV disclosure sure story since Magic Johnson, actor Charlie Sheen acknowledged in a November Today interview that he is living ng with the virus. As when actor Danny Pintauro told Oprah he was HIV positive two months earlier, the resulting news coverage was met with mixed reactions ns in the HIV community. While generally supportive, advocates questioned whether either man was an ideal spokesperson. One thing’s for sure: Sheen and d Pintauro put HIV back in the headlines. As for the Danny rest, we’ll have to stay tuned.

Pintauro

CHLOE DZUBILO’S BODY OF WORK Transgender artist, HIV activist and three-time POZ cover model Chloe Dzubilo died in 2011, just five days after an art show she co-curated called TransEuphoria closed. But her art and advocacy continue to inspire—just ask Justin Vivian Bond, Buzz Slutzky, Jeffery Green, Jeanne Vaccaro and T De Long. They participated in a panel discussion on Dzubilo held in New York City at Cooper Union along with Visual AIDS as part of the Bring Your Own Body exhibition on transgender artists and archives. As Visual AIDS writes in its online bio accompanying a gallery of Dzubilo’s artwork: “Since her diagnosis, Chloe advocated for civil rights, adequate health care and dignity for people living with HIV/AIDS, transgender people and drug users.”

Activists outside Turing Pharmaceuticals’ headquarters protest a med’s price hike.

GREED IS NOT GOOD Martin Shkreli, the so-called “hedge fund bro” CEO of Turing Pharmaceuticals, became the poster boy for Wall Street’s “greed is good” ethos when he raised the price of an AIDS-related medicine 5,000 percent, from $13.50 to $750 for a single pill. (Daraprim is a 62-year-old med to treat infections such as toxoplasmosis in people with compromised immune systems.) AIDS activists and seemingly much of the world were quick to protest.

Presidential hopefuls Hillary Clinton and Bernie Sanders denounced price-gouging practices, and legal investigations into Shkreli’s company are now under way.

Meanwhile, Imprimis Pharmaceuticals is offering a $1 alternative backed by major prescription manager Express Scripts, and Turing posted a $14.6 million loss for the quarter in which it acquired marketing rights to Daraprim.

IF YOU’VE GOT IT, FLORENT IT! POZ staffers were overjoyed to learn that actor Alan Cumming is slated to play ay real-life restaurateur Florent Morellet in a Showtime comedy series set in 1980s 0s New York. Why? For starters, Morellet was so open about having HIV that he posted his CD4 count on a board next to the daily menu. And Alan Cumming his 24-hour eatery, Florent, in the Meatpacking District, will and Florent make for a fabulous setting. The restaurant was a hub of AIDS activists, downtown denizens and glamorous celebs from Julianne Moore and Isaac Mizrahi to Michael Musto and Joey Arias—and it also served as unofficial POZ headquarters.

But don’t take our word for it. Watch the 2010 documentary Florent: Queen of the Meatmarket and see for yourself.

National Black HIV/AIDS Awareness Day

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POZ PLANET

BY TRENTON STRAUBE

TOAST OF THE TOWN

Celebrating the POZ 100 long-term survivors rousing speeches by Orlando Francisco Reyes of Miami, who’s featured in the Well Beyond HIV campaign; Pastor Andrena Ingram of Philadelphia, one of the 2015 POZ 100; Walgreens senior director of virology Glen Pietrandoni; POZ editor-in-chief Oriol Gutierrez; and Katja Heinemann and Naomi Schegloff, the duo behind the Walgreens campaign, who have been documenting the aging epidemic on GrayingOfAIDS.org.

It’s estimated that, as of 2015, half of the people living with HIV in the United States are 50 or older, so this is an important age group to listen to—and to celebrate!

Clockwise from top left: past and current POZ 100 honorees; Pastor Andrena Ingram and the night’s emcee, Mark S. King; Walgreens external communication manager Markeisha Marshall, senior director of virology Glen Pietrandoni and senior marketing manager Melissa Pitsoulakis; the Well Beyond HIV exhibit; POZ’s Jennifer Morton, Oriol Gutierrez and Trenton Straube with GMHC board member Osvaldo Perdomo; and (in center photo) the duo behind the Graying of AIDS project, Naomi Schegloff and Katja Heinemann. Inset at top: attendees offered handwritten advice for living well beyond HIV.

16 POZ JANUARY/FEBRUARY 2016 poz.com

(ADVICE NOTES AND POZ STAFF/PERDOMA) JENNIFER MORTON; (INGRAM/KING AND SCHEGLOSS/HEINEMANN) CATHY RENNA; (HONOREES, MARSHALL/PIETRANDONI/PITSOULAKIS AND EXHIBIT) CASSIE CASTELLAW

The 2015 POZ 100 honored individuals who have been living with HIV since 1995 or earlier and who are making a difference in the fight against AIDS. In November, many of these amazing individuals gathered at Rogue Gallery Space in New York City for an event co-hosted by Walgreens and POZ. In addition to celebrating this inspiring group of survivors, the gallery event coincided with the New York opening of Walgreens’ traveling exhibit Well Beyond HIV, which highlights both the images and stories of HIV-positive people 50 and older.

POZ blogger Mark S. King emceed the soiree, which included

VOICES

BLOGS AND OPINIONS FROM POZ.COM

TRUE LOVE

Joe Burke lives with HIV, hepatitis C and hemophilia. In a POZ blog post, he offers five rules for finding that special someone, based on his personal experience. Just in time for Valentine’s Day, below is an edited excerpt of his post.

P

ISTOCK

eople simply want to be loved.

Being alone and living with chronic illness is enough to make some not even enter the dating game, or keep them from discovering the great “what ifs” of life.

Finding a partner educated enough to understand your disease, rather than run from it, can be difficult. HIV is a big deal, and it affects everyone and everything around you—family, friends and dating.

This list may not translate to everyone, but it contains enough of a map to point you in the right direction for true love. Often the biggest hurdle we have to face isn’t dating itself, but our own reflection. Once we conquer the skewed image we have of ourselves, and truly realize our worth, we can become empowered to find true love and change the lives of everyone around us.

1. Circle of Trust. Friends are a precious commodity. It’s vital that we surround ourselves with friends who are educated and who will be there to love, comfort and listen to you when you need it most. A great group of friends not only provides a solid foundation, but also helps us launch into new and otherwise uncharted areas. They encourage us, motivate us and make us feel wanted; that’s important for self-esteem. Friends also help us stay accountable, socially aware and constantly engaged in conversations and real-life situations.

Remove toxic friends, and find ones who elevate your spirits to new horizons.

2. Don’t Believe the Naysayers.

Something I always encourage people to take to heart in is, “You are not your disease!” Many of us have been told lie after lie: that we’re not good enough, it’s pointless, we’re just going to get our hearts shattered. Don’t be bound by a mere label; rather, have an impact on someone’s life. Stop listening to the grumpy people who try to dictate what they think is best for you, and start empowering yourself to take chances.

If you’re true to yourself, people will naturally gravitate toward you, and the naysayers will fade away like yesterday’s celebrity gossip column.

3. Stop, Breathe, Focus. If we concentrate all our efforts on finding true love while avoiding our surroundings, we will gradually lose perspective. Don’t focus all your attention on finding your significant other; instead, work on being the best you that you can be, every moment, every day. Remember, you’re one thought away from contentment.

Grumbling is actually more toxic and contagious than any other action we can do. Instead, be content, in the moment, and thankful for where you are and what you have, not what you don’t. So stop, get your bearings, take a deep breath and refocus your goals.

4. Simply the Best. If you’re single and reading this, let’s face one fact: You just have you. Work on making an impact, and others will take notice of your efforts. True love isn’t found in a dating app; it’s discovered when volunteering for a local charity organization helping others. When you’re truly happy and content with your life and where you are, it’s typically in those moments others take notice and are attracted to your self-esteem and independence. I’ve never met a single human being who strays from a confident person. Have you? Sure, some days are better than others, I understand that sincerely, but approach each day as a new opportunity, rather than a burden.

5. Honesty Is the Best Policy. When I first found my true love and married her the following year, I reflected on the fact that I was open and honest with my partner. I told her my diagnoses and some of the daily challenges I face.

A true partner will not flee, but rather gravitate toward honesty and humility.

I prayed for over 10 years for a perfect companion to come my way, but I first had to work on me, and get over the “implanted thought” of being a sick person with complications. It’s not complicated. It’s life.

Go to blogs.poz.com/joeburke to read more of Joe’s posts.

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POZ SURVEY SAYS

BY JENNIFER MORTON

Stressed Out

Most people experience stress from time to time. And while not all stress is bad, it’s important to recognize when it is negatively affecting your health. It’s also vital to know how to deal with stress in a positive and healthy manner. POZ recently asked about the stress in your life and how you handle it. Here are your responses.

IN THE PAST MONTH, HOW OFTEN DID YOU FEEL STRESSED?

HOW WELL DO YOU HANDLE STRESS?

5%

The top 5 ways you handle stress are: 1

12%

NEVER

VERY WELL

32%

OCCASIONALLY

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NOT WELL

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WATCH TELEVISION

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SOMEWHAT WELL

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THE NO. 1 CAUSE OF STRESS IN YOUR LIFE IS:

EAT

DEALING WITH FINANCIAL MATTERS

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TIPS FOR MANAGING STRESS

Source: July/August 2015 POZ

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LISTEN TO MUSIC LIST

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TALK TO OTHERS TAL

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ZZ Z SLEEP

ISTOCK (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

1) Take care of yourself lf by exercising regularly, eating a healthy diet and getting plenty of sleep. eep.

2) Find support from friends, family or other sources.

3) Avoid drugs and alcohol. cohol.

4) Spend time with loved ved ones and people you caree about.

5) Practice relaxation techniques, such ass breathing exercises,, meditation or yoga..

RESEARCH NOTES

BY BENJAMIN RYAN

ALL IMAGES: ISTOCK

PREVENTION

TREATMENT

CURE

CONCERNS

Power of TasP

Potent Antibody

Revamp Research?

Quality of Life

A researcher conducted interviews in 2013 and 2014 with members of 25 Australian mixed-HIV-status couples—gay, straight, and including transgender people—and found that the concept of HIV treatment as prevention (TasP) appeared to have a normalizing and affirming effect on the couples’ relationships. TasP reduced anxiety about transmission of the virus as well as HIV-related stigma and fears of entering a relationship with someone of a different HIV status.

Many of the gay men saw antiretrovirals (ARVs) as an extra layer of protection on top of condom use. Other couples who had not used condoms before they learned about TasP felt reassured and validated by the notion that ARVs would lower the risk of transmission, while a few others felt they could start having sex without a condom.

Researchers have found a so-called broadly neutralizing antibody (BNA) that can recognize a key, shape-shifting portion of HIV, known as the envelope spike, when it’s in multiple forms. These findings suggest that this naturally occurring immune response could be manufactured as an HIV treatment.

The envelope spike is located on HIV’s surface and made up of a series of proteins that bind to a receptor on the surface of immune cells. If HIV is floating independently through the body, the spike is likely in a closed position.

But research has shown that HIV can spread directly from an infected immune cell to another immune cell, in which case the viral spike is probably in an open position. This particular BNA can recognize and attach to the viral spike when the spike is either closed or partially open, ultimately neutralizing the virus.

In an essay in The Lancet, two prominent HIV researchers, including HIV co-discoverer Françoise Barré-Sinoussi, call for revising the way cure research is conducted. They encourage colleagues to move away from studying individual agents and to leverage a new system that would allow researchers to shift quickly into testing the combination treatment approaches that are likely necessary to develop a cure.

In the current research paradigm, individual therapies are tested for safety and potency in animals, and, if promising, move into human trials—first to test safety, then efficacy. This timeconsuming process must be repeated when therapies are used in combination. The essay authors outline a pathway by which scientists could run parallel animal and human studies, by first selecting the most promising combinations of treatments from lab research as well as existing animal- and human-related data. This could allow scientists to work more efficiently and enter combination therapies into Phase II human trials much faster.

HIV-positive people who have their virus under control with treatment, high CD4s, and a low level of other negative health conditions still report a reduced quality of life compared with those who don’t have the virus.

Researchers compared 52 HIV-positive individuals with 23 HIV-negative controls matched for age, sex, education, non-HIV health problems, body mass index (BMI), fitness level, activity level, and alcohol consumption. The control group had lower rates of depression and smoking. (Nicotine addiction is highly common among people living with HIV.) Those with HIV scored worse on measures for general health, physical functioning, ability to complete everyday tasks such as work or housework, mental health, vitality, distress over health, and cognitive functioning. In the HIV-positive group, being a woman and having depression were associated with worse overall mental health, while less education, a higher depression score and a higher BMI were associated with lower overall physical health.

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CARE AND TREATMENT

BY BENJAMIN RYAN

EXPERIENCE COUNTS FOR HIV

Many people with HIV rely on family doctors for their medical care instead of an HIV specialist. Unfortunately, a new study suggests that experience counts for a lot where HIV care is concerned.

To reach this conclusion, Canadian researchers analyzed data from a study of over 13,000 people with HIV conducted in Ontario between 2009 and 2012.

Just over half of these individuals exclusively saw a family practitioner for their HIV care. Thirty-four percent of those whose family physicians had five or fewer HIV-positive patients were taking antiretrovirals, compared with 40 percent of those whose family physicians had 6 to 49 patients with HIV, and 77 percent of those whose family doctors had at least 50 HIV-positive patients.

“Receiving [antiretroviral treatment] may be the most important thing a person with HIV can do to preserve their health,” says the study’s lead author, Claire Kendall, MD, PhD, a clinician investigator with the Bruyere Research Institute in Ottawa, Ontario. “But other things, such as health promotion and chronic disease prevention and management, are also important to those living with HIV and are well-suited to the primary care realm.”

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The World Health Organization (WHO) has recommended that all people living with HIV worldwide should receive antiretroviral (ARV) treatment, and that those with “substantial” risk for the virus should be offered Truvada (tenofovir/ emtricitabine) as pre-exposure prophylaxis (PrEP).

These guidelines expand the estimated number of HIV-positive individuals eligible for treatment from 28 million to all 37 million people. Whether there will be resources to provide ARVs to that many people is another question.

In July 2013, WHO raised its benchmark of when people with HIV should begin treatment from having a CD4 count of 350 or below to 500 CD4s or below.

The PrEP guidelines WHO issued in July 2014 focused more narrowly on men who have sex with men.

Anthony Fauci, MD, director of the U.S. National Institute of Allergy and Infectious Diseases, says that “WHO’s support for PrEP” validates “its place in the global HIV prevention armamentarium.” He presumes this support will likely “be another factor in favor of [PrEP’s] approval by various regulatory bodies.”

ALL IMAGES: ISTOCK (MODELS USED FOR ILUSTRATIVE PURPOSES ONLY

WHO Calls For Broader ARVs

HIV Prevalence Is Steady; Treatment Rate Is Low A new snapshot of the U.S. HIV epidemic has found that the number of Americans living with HIV has likely held steady in recent years, and that treatment rates are troublingly low among those living with the virus. The Centers for Disease Control and Prevention (CDC) conducted an analysis of nearly 10,500 adults who responded to a national health survey between 2007 and 2012.

Comparing 1999 to 2006 survey results to the 2007 to 2012 data set, the researchers found that the proportion of 18-to-49-year-olds living with the virus had not changed over time.

During the 2007 to 2012 period, the majority of people living with HIV in the survey were black. African Americans had a prevalence rate of 1.6 percent, compared with 0.23 percent among all others. Men had a prevalence rate of 0.61, compared with 0.16 percent among women. Of the HIV-positive respondents, just 52 percent said they had taken ARVs in the last month.

Separate research has estimated that about 37 percent of HIV-positive Americans are taking antiretrovirals (ARVs) for HIV. This new CDC analysis does not necessarily conflict with or supersede that particular statistic.

“CDC has been working for many years to reduce the HIV disparity that exists within the African-American community,” says Eugene McCray, MD, director of the division of HIV/AIDS prevention at the CDC. “We are continuing to work, along with our partners, in pursuing a high-impact prevention approach that advances the goals of the National HIV/AIDS Strategy and maximizes highly effective HIV prevention methods.”

SEXUALLY TRANSMITTED HEP C RISES IN HIV-POSITIVE GAY MEN There is an emerging epidemic of sexually transmitted hepatitis C virus (HCV) among HIV-positive men who have sex with men (MSM). Those at risk are apparently MSM who have receptive anal intercourse without a condom, sex while high on drugs, group sex, or very rough sex.

Researchers conducted a metaanalysis of 15 studies from 1991 to 2012 of more than 13,000 HIV-positive MSM who did not use injection drugs. Across the years, participants contracted hep C at an average rate of 0.53 percent per year—meaning that if a similar group of 100,000 MSM were followed for one year, about 530 would contract hep C.

In 1991, the infection rate among the men studied was an estimated 0.42 percent per year. By 2010, this figure had tripled, to 1.09 percent per year. In 2012, the infection rate hit 1.34 percent. Today’s rate could be nearly 2 percent.

Those who were cured of hep C had a reinfection rate of 11 percent.

The group of men included in this research is not necessarily a representative sample of the larger population of HIV-positive MSM. Such rates of infection may not be occurring in this overall demographic.

One study included in the analysis found that crystal cryst meth use during sex was associated with an almost 30-fold increase in the ri risk of acquiring hep C. “Right now th the proportion of HIVpositive MSM who w have HCV infection is very low,” says the study’s principal author, Holly Hagan, Ha PhD, co-director of the Center for Drug Use and HIV Research at New York University’s College of Nursin Nursing. “But once it reaches a certain threshold thresho it will be harder to control [the spread spre of] HCV infection in these men.”

Cancer Concerns

A large study has found higher rates of numerous cancers among people living with HIV, compared with the HIV-negative population.

To come to this conclusion, researchers followed over 85,000 HIV-positive and nearly 200,000 HIV-negative individuals between 1996 and 2009.

The proportion of the respective HIV-positive and HIV-negative populations who developed various cancers by age 75 included: Kaposi’s sarcoma, 4.4 percent and 0.01 percent; non-Hodgkin lymphoma, 4.5 percent and 0.7 percent; lung cancer, 3.4 percent and 2.8 percent; anal cancer, 1.5 percent and 0.05 percent; colorectal cancer, 1.0 percent and 1.5 percent; liver cancer, 1.1 percent and 0.4 percent; Hodgkin lymphoma, 0.9 percent and 0.09 percent; and melanoma, 0.5 percent and 0.6 percent.

The study’s co-lead author, Michael J. Silverberg, PhD, MPH, an investigator with the Kaiser Permanente Division of Research in Oakland, California, says that the good news is that increased rates of certain cancers in the HIV population, including anal, colorectal and liver cancers, only occurred because people with HIV are living longer. “In addition,” he says, “the rates of other cancers didn’t change over time, such as lung cancer, Hodgkin lymphoma and melanoma.”

Starting HIV treatment soon after diagnosis and avoiding smoking, Silverberg advises, can help reduce HIV-positive people’s overall risk of cancer.

poz.com JANUARY/FEBRUARY 2016 POZ 21

“I

FINDING COMMON CAUSE IN FIGHTING VIOLENCE AND HIV

BY OLIVIA FORD

“It was just too much at one time,” Ashton P. Woods ods remembers.

Woods was already an activist. In the late 1990s, 0s, at age 15, he started one of the first Gay-Straight Alliances in his home me city of New Orleans.

He volunteered and interned with progressivee political candidates, advocated for women’s and LGBT rights, and advanced anced get-out-the-vote efforts in Houston, Texas, where he now lives.

Then Trayvon Martin was murdered, and Michael ael Brown. Their killers went free. Videos of black people being abused or slain by police began to surface, again and again: Eric Garner. Walter Scott. t. Sandra Bland.

“It’s different when you know something is happening, appening, to then have there be visual proof,” muses Woods. “It infuriates, ates, and it makes you want justice—what people have been telling you is imaginary and untrue has now been proven to be true.”

Woods marks the shooting death of Michael Brown rown at the hands of a police officer in Ferguson, Missouri, as the eventt that connected him to the movement now known as Black Lives Matter. ter.

The phrase dates back to 2013, following George orge Zimmerman’s acquittal for the slaying of Martin, an unarmed 17-year-old. Alicia Garza, one of the three black women who founded ded #BlackLivesMatter, ended an impassioned love letter to the black lack community on Facebook with the phrase. Her good friend Patrisse Cullors reposted the message, adding the hashtag. Both oth seasoned community organizers, the two put their heads ds together,

along with a third friend and sister activist, the diggitally savvy Opal Tometi, to create online platforms under that banner.

“Being part of Black Lives Matter fell in my lap, and I felt right at home,” says Woods, who o organizes with Black Lives Matter Houston. n.

Woods does not bring HIV into the center of his acctivism, though he is openly living with the virus. The main goal of his activism is to ensure that people ple in his community, particularly black LGBT people, are re actively engaged in politics and are viewing that work intersectionally. rsectionally.

“One reason I started doing Black Lives Matter er work in the context that I do it was that I kept seeing this focus on thee bodies of black men,” Woods says. “What about the bodies of black women? Of black trans women? Of black gay folks?”

Ashton P. Woods lives with HIV and fights against injustice.

BLACK LIVES MATTER HAS been called the new civill rights movement. It is unapologetically affirming of queer and trans experiences; xperiences; two of the network’s three co-founders, Garza and Cullors, ors, identify as queer.

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discussions in his network of churches. “I joined St. Luke’s AME because of their social justice mantra,” he says, “and to use my own experience of being HIV positive to expand the church’s mind beyond social justice for the black male parishioner—[to] the black LGBT parishioner, the black parishioner living with HIV, the black LGBT youth parishioner.”

His own church is affirming, but when he talks about black LGBT identity and HIV in other churches in his denomination, “the energy shifts; people value Black Lives Matter, but many parishioners don’t understand what we mean when we say ‘All Black Lives.’ Everyone doesn’t get on board so quickly.”

AS BLACK LIVES MATTER co-founder under Patrisse Cullors wrote in Essence sence magazine that the hashtag “arose arose out of a place of grief and sorrow,” the Black Lives Matter atter network strives to create spaces aces for this grief.

“We try to make sure healing ling is a strategic part of the process, ess, during actions or afterward,” d,” says Elle Hearns, a Washingngton, DC–based strategic partrtner of Black Lives Matter. er.

“We constantly have converrsations around: What does it look l i ke to na me what at you’re experiencing, instead d of internalizing it? Whatt trauma are you bringing i nto t he s pace s where you’re organizing?”

Hearns co-organized Trans Liberation Tuesday, a national day of action on August 25, 2015, called by the Black Lives Matter network to respond to the murders of 18 trans women of color in the United States ates that year. (As of press time, at least 19 trans women of color had been murdered in 2015.)

“For black trans women,” Hearns explains, “what felt like healing for us was to hear folks who have essentially perpetuated violence take ownership for that.” As part of one event, BuzzFeed reported, black cisgender men and women decried violence against black trans women by naming how they had, in the past, taken part in or ignored such violence.

“Part of healing is discussing what we need to heal from,” Hearns says.

The issues raised by Black Lives Matter activists are not new: They are systemic. According to the Center for American Progress, African Americans are 2.5 times more likely to be arrested than whites, and they face sentences that are an average of 19.5 percent longer than whites’ for similar crimes.

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(1) GETTY IMAGES/JEMAL; (2) COURTESY OF ELLE HEARNS; (3,4) COURTESY OF CHERNO BIKO; (5) COURTESY OF RICHARD MADONNA/SHAWN TORRES; (6) GETTY IMAGES/CHARLIE LEIGHT HT (7) COURTESY OF SHAWN TORRES;

Chapters are accountable to the founders and the network; strategic partners across the nation work and speak on the network’s behalf.

There is no traditional, top-down leadership. The movement is what some sources call “leader-full” (as opposed to the “leaderless” model of the Occupy movement that surged, and waned, several years ago).

The target of the Black Lives Matter network is state violence against black people, in all its forms—mass incarceration and over-policing being part of a complex of issues of state involvement in the lives of black people.

For Shawn Torres, a youth pastor at St. Luke’s AME Church in Harlem, New York, and a graduate student at Union Theological Seminary, the intent of Black Lives Matter is “to recognize the very specific horrors that come into the lives of black people across the spectrum of what it means to be black; to allow someone like me to raise my voice about HIV activism and have that be realized; to raise up people to speak for their communities and have that be affirmed as part of the work of Black Lives Matter.”

It was Eric Garner’s video-captured death, and a grand jury’s subsequent failure to hold accountable the police officer responsible, that led Torres to take to the streets in protest on a cold, rainy night in December 2014, alongside Benjamin Perry, a Union classmate.

The two men, both in their 20s and alike in virtually every discernible way but their races, were treated very differently when they were both arrested for blocking New York City’s FDR Drive in a peaceful protest: Torres was cuffed, thrown in a police van, stripped of the “weapons” (buttons) pinned to his jacket and refused a phone call; Perry got his call and was allowed to keep identical pins; further, when he offered himself for arrest, the first officer he encountered whispered to him, “Just get out of here.”

The details surrounding their arrests buzzed through mainstream media, from Al-Jazeera to the Melissa Harris-Perry Show to The New York Times. “I think if it had been just me by myself they wouldn’t have believed me,” Torres states. “Because Ben was a white cisgender straight male, and he spoke up alongside me, his word had more power than my word.

“When narratives are told from black people, they aren’t automatically believed to be true,” he adds. “Believing stories of victims is part of the healing process, when we believe the story the first time.”

This illustrates the power of the assertion “Black Lives Matter”—and why “All Lives Matter” will not do. “When we deploy ‘All Lives Matter’ as to correct an intervention specifically created to address anti-blackness,” wrote Black Lives Matter co-founder Garza on Feminist Wire, “we lose the ways in which the state apparatus has built a program of genocide and repression mostly on the backs of black people…and then adapted it to control, murder and profit off of other communities of color and immigrant communities. We perpetuate a level of white supremacist domination by reproducing a tired trope that we are all the same.”

Now, for Torres, Black Lives Matter is a vehicle for heated

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A detailed report by the Malcolm X Grassroots Movement, looking at one year in extrajudicial killings of African Americans in a number of U.S. towns and cities, found that a black man, woman or child was killed by police or vigilantes every 28 hours. A report released in November 2015 by the Black Youth Project found that more than half of black members of the millennial generation, which encompasses people between the ages of 18 and 34, have themselves or know someone who has been the victim of police harassment and violence.

“Increased awareness has not translated into prevention and policy,” Jamil Smith pointed out in The New Republic magazine last year. “The surge of video evidence has only made our society increasingly numb to the spectacle of black death.” A similar claim could be made regarding the underwhelming national response to evidence indicating that black people living with HIV get sicker and die faster than their white counterparts—especially in the Southern United States.

Incidentally, numbing is one of the symptoms of post-traumatic stress disorder (PTSD), which mental health experts in a National Public Radio report explained can result from persistent daily microaggressions and helplessness in the face of violations that are part of the experience of racism in the United States. The American Public Health Association has long called on federal agencies to investigate and eliminate the effects of racism on health outcomes for people of color.

As a growing body of literature attests, violence, trauma and PTSD are all disproportionately experienced by people living with HIV—who are, in the United States, 41 percent blac k.

Nearly mirroring this number is the percentage of the U.S. inmate population that is black: 40 percent, according to 2010 U.S. Census numbers analyzed by the Prison Policy Institute. (Black people make up about 13 percent of the U.S. population.) Research shows that incarceration itself is a form of trauma. Its effects also render people vulnerable to becoming HIV positive.

“Understanding the traumatic impacts of racism and xenophobia” and addressing their effects are essential to providing high-quality care in communities affected by HIV, wrote Naina Khanna of Positive Women’s Network USA (PWN–USA) and Charles Stephens of Counter Narrative Project in an opinion piece. “Racial justice and a commitment to anti-oppressive thinking has to ground our work.”

Kenyon Farrow, a writer and veteran of HIV and criminal justice activism, points out that “trauma is part of the reason it

has taken 40-plus years since the end of what we think of as the civil rights movement for black folks to again be fully engaged in broader-based movements.”

Farrow cites the assassinations of key black justice leaders, the ravages of crack cocaine, the war on drugs, massive incarceration and unfathomable losses to complications of HIV as events that “created disruption and confusion in the midst of what we thought would be the thing to really transform this country.

“The legacy of that kind of trauma has not been fully explored,” he says.

BLACK LIVES MATTER ACTIVISTS have engaged in high-profile actions to bring the traumatizing realities of state violence to light. An event that garnered national attention, and c on s ide r a ble c r it ic i s m , w a s t he interruption of the Presidential Town Hall Ashton P. at the Netroots Nation conference in Woods at Arizona in July 2015, featuring Senator the action targeting Bernie Sanders and former Governor Bernie Sanders Martin O’Malley.

Both Woods from Houston and Hearns from DC played roles in the action at the progressive gathering. Roughly 100 Black Lives Matter and immigration activists, led by black women, stopped the proceedings to make space for activists to address the candidates about the urgency of the issue of state violence.

Sandra Bland had died in police custody in Texas just a few days earlier. “No one was talking about it; the presidential candidates weren’t ta l k i ng about it,” Hearns says. Woods had helped organize rallies in Texas following Bland’s death, and he video taped the Netroots action for his blog. An informal meetup the night before had given activists the opportunity “to build trust, love and understanding of how we were all feeling,” which made space for the plan to come together quickly.

Longtime HIV activist and journalist Michelangelo Signorile was in the Netroots audience; writing about the experience for The Huffington Post, he remarked: “People herald ACT UP for the work it did, but they all seem to forget that in the moment there was enormous tension between the group and the larger progressive community.… Black Lives Matter is doing exactly what it should be doing. And it is getting exactly the response it should be getting, bringing attention in every way possible to an urgent life-and-death issue.”

Cherno Biko, a media strategist and Black Lives Matter strategic partner in New York City, credits the example of authentic

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LOUIS KENJI CARR

“WHAT ABOUT THE BODIES OF BLACK WOMEN? OF BLACK TRANS WOMEN? OF BLACK GAY FOLKS?”

trans inclusion set by the founders of the movement for why she feels “safer to partner with this iteration of the black liberation movement—because of that intersectionality.”

A lifelong activist (her uncle is anti-apartheid activist Stephen Biko, who died in police custody in South Africa in 1977), Biko lost her brother and a close friend, another black transgender woman, to brutal murders during the same week in 2013. “It’s hard not to take a stand and get more involved when someone in your family is affected by violence on that level,” she says.

She says that she and other black trans women have faced physical and emotional violence at events in the movement, but modeling by the founders ensures that such violence is condemned. “It’s hurt people hurting other people,” Biko explains, referring, like Hearns from DC, to histories of unaddressed trauma that activists often carry.

Valerie Spencer, a social worker who is among the pioneers of transgender activism, began her work in the HIV community in 1992. “There has always been such a marginal telling of our human experience as black trans people: that we are mentally ill, crack addicted, experience high rates of homelessness, joblessness, HIV, family and peer rejection,” Spencer says.

“There is much more to be told than just that—there’s a level of contribution by black trans people to movements that has not been discussed.”

Spencer appreciates that, with the advent of Black Lives Matter, “trans advocates who might have been forced to stay in a trans silo have been able to be impactful beyond just an ‘LGBT-friendly’ audience.” Spencer cites an interview on CNN featuring Hearns. “Usually when trans people are present, the conversation shifts to be about the person’s ‘trans-ness,’ even when that’s not the issue,” she says.

Hearns “didn’t need to speak about her own trans experience, because assaults on black people, inclusive of black trans people, was the issue at hand.”

“The Black Lives Matter network has created openness in a way we’ve never seen before,” Hearns says. “My hope is that people will be able to see themselves in this work, completely and wholly, outside of just the violence that’s happening—and also that they can see each other.

“That’s the goal of the network,” she adds. “The movement is still trying to catch up with the network, and with a lot of the ideology that the network has gifted to the movement.”

WHEN ASKED WHAT SHE knows about HIV criminalization, the response from Biko of New York City is immediate and incisive: “HIV criminalization is just another iteration of state violence against black folks,” she states, adding that the practice is “killing us, literally and figuratively,” by perpetuating stigma and erecting barriers to prevention, testing, care and treatment.

The inaugural Movement for Black Lives Convening, held in Cleveland in July 2015, provided an opportunity to talk about HIV as the social justice issue it has always been, with members of the community that it has always most adversely affected.

Diane Burkholder, a Missouri–based activist who’s worked in HIV and related fields for more than a decade, was among

the multigenerational group of activists who came to the convening ready to seize that opportunity. “We’ve been moving this past year in reaction, reaction, reaction,” Burkholder says.

After participating in the Weekend of Resistance in Ferguson in October 2014, Burkholder helped form One Struggle Kansas City to foment solidarity among black and brown communities. The group is exploring becoming a local chapter of Black Lives Matter. “What are the ways we can broaden this conversation to talk about HIV criminalization among black folks?” she says.

The conversations at the convening largely focused on the widely publicized, often sensationalized, case of college wrestler Michael Johnson. That month, Johnson, a young HIV-positive gay black man who’d attended a university just down the road from Ferguson in St. Charles, Missouri, had been sentenced to 30 years in prison for having consensual sex.

Under the antiquated, stigmatizing HIV-related statutes that exist in more than 30 U.S. states and territories—in keeping with national sentencing disparities—a study in AIDS and Behavior suggests black defendants are more likely to be prosecuted and more harshly sentenced than their white counterparts.

Mickyel “Micky” Bradford of Atlanta, who works with several queer and reproductive justice groups including Southerners on New Ground, an LGBT activist organization and a cosponsor of the convening, aptly calls HIV criminalization “a perfect storm of patriarchal masculinity and anti-blackness.”

Says Waheedah Shabazz-El, longtime activist and regional organizing director of PWN–USA, of the HIV criminalizationthemed workshops: “Everything we were giving that audience was new”—from awareness that the state uses HIV status as an additional unjust tool to police and jail black people, to knowledge that there are people of color engaged in HIV activism at all.

“It’s important for folks in the Black Lives Matter movement to know that radical HIV work happens,” Burkholder says. “Once people get the 101, their reaction is: ‘This is BS.’ People were really engaged, and wanted to know how to do more in their communities.”

PWN–USA’s Khanna is also an organizer with Asians4BlackLives, a diverse group of activists of Asian descent working in solidarity and support with the Black Lives Matter movement. “HIV advocates need to be thinking about how anti-black racism plays a role in criminalization, prosecution and sentencing,” she says.

The HIV movement also has lessons to share with Black Lives Matter. Farrow reflects: “A strength of HIV activists is that we have a sense of community organizing strategies; we know a lot about providing services to people who are in desperate need of them; and we understand systems. We have had to come at HIV from so many different angles; we could offer that to movements that are thinking about both how to mobilize people, and what to ask people to mobilize around.”

“The very nature of HIV is intersectional,” Burkholder concludes. “Black Lives Matter is intentional about being intersectional as well. The two go hand-in-hand.” ■

poz.com JANUARY/FEBRUARY 2016 POZ 31

YOU CAN’T HURRY

NAVIGATING SEX AND DISCLOSURE WHILE LIVING WITH HIV

BY CASEY HALTER

“I DON’T WANT TO LIE ANYMORE.” Those were the words Robert Gillum thought when he first disclosed to his partner, Michael, in 1994. Having spent the previous seven years in the closet about having HIV—going city to city, job to job and lover to lover across the United States—Gillum recalls that day in Minneapolis as the first time he took responsibility for his status.

To many, the idea of Gillum, both a former crack user and sex worker, pursuing unprotected intimacies at the height of the epidemic brings to mind some of the darkest fears of AIDS. It was a time before modern HIV treatment made the disease manageable, and when people who knew their positive status were so stigmatized, disenfranchised and scared, they weren’t necessarily going to share the information.

But Michael’s response to the truth was not at all what Gillum expected. “He

32 POZ SEPTEMBER 2011 poz.com

said ‘Thank you,’” Gillum recalls. Even though Michael was HIV negative, the two men decided to get together.

Disclosure is—and has always been— one of the most difficult topics to broach among people living with HIV. It’s been more than 30 years since the start of the epidemic, yet the fear of rejection, discrimination and social isolation still keeps many HIV-positive people from speaking out about their status.

Disclosure also takes a serious hit on

Robert Gillum is living and loving with HIV in Minneapolis.

poz.com SEPTEMBER 2015 POZ 33

your attempts to find true love. Recent POZ.com surveys show that two-thirds of our readers say their sexual confidence has declined since becoming HIV positive. Nearly 70 percent report having a sexual partner outright reject them because of HIV. Perhaps because of this, nearly one in 10 of our readers still say they never disclose their HIV status before a new sexual encounter.

However, as Gillum and many others have discovered, living and loving with HIV is not an impossible feat. For this article, four HIV-positive people share their tips on disclosing and navigating the relationships that follow.

“I LIKE HELPING PEOPLE CHANGE,” SAYS GILLUM, 49, who has now spent nearly two decades working in the public health field. Over the years, he has helped a lot of gay men of color disclose their HIV status—something he too once struggled with.

Gillum found out he had HIV in 1987, when he was 20 years old. At the time, he was incarcerated, facing 30 to 60 years on murder charges. He was also coming down for the first of many times from the addictions to pot, cocaine and alcohol he

City understands the flip side to this first step in HIV disclosure.

“I felt really violated,” recalls Baughman, when she talks about Jose, a 47-year-old man she dated eight years ago, who never disclosed his status and ended up giving her HIV when she was 60.

At first, her doctors didn’t believe a woman her age could get HIV. But then, “I’ll never forget this,” Baughman recalls, “the lady at the health department told me, ‘If this was California or New Jersey, you could press charges.’”

Baughman got educated, went public with her status, and kept up her pursuit of a vibrant love and sex life, regardless of her HIV. A year later, in 2008, Jose died of AIDS-related complications. She remembers the doctor told her that he could tell from her blood tests that she had become HIV positive from someone who had never taken medicine for the virus.

Today, she guesses the same denial and self-perpetuated stigma that Gillum faced in his early years with HIV had affected her former lover as well.

“I’d always hoped at the time we could have talked more,” says Baughman, recalling dozens of ignored phone calls, outright denials and stalking threats from Jose in the aftermath of

developed as a teen in his hometown of Gary, Indiana.

“At that moment, my spirituality stepped in,” Gillum recalls about the day of his HIV diagnosis. “I felt I was spoken to.”

The charges against him were later dropped, and his denial started. For the next seven years, Gillum says, “I was not on treatment, and I was not disclosing my status at all.”

Gillum’s story brings us to step one of learning to live, love and disclose with HIV: Accept yourself. The obvious reason to do this is to bolster your own wellness. Once you accept your diagnosis, you’ll be more likely to access treatment, which will keep you healthy and help protect your partners from HIV. All of this, in turn, can influence your comfort with disclosure.

However, know that you also may have a legal obligation to disclose your status. According to the Sero Project, an advocacy group focused on HIV criminalization laws, 24 U.S. states require people who know they are HIV positive to disclose to sexual partners—that, or face aggravated assault, attempted murder or even bioterrorism charges.

The laws apply to all sexual intercourse, with or without a condom, whether the virus is transmitted, and whether you’re on treatment or not—even if your viral load is undetectable (even though recent studies show this reduces the likelihood of transmission to nearly zero).

It’s a harsh truth to accept, but Addie Baughman of New York

34 POZ JANUARY/FEBRUARY 2016 poz.com

her HIV diagnosis. “I think it could have helped us both.”

Disclosure remains a big issue among people living with HIV. In a recent survey, 64 percent of POZ readers reported always disclosing their HIV status before a new sexual encounter.

However, 27 percent said they disclosed only sometimes and 9 percent said they never did.

“Self-acceptance is the key,” says Gillum when asked about how he finally made the mental and moral leap into disclosing his HIV status in 1994. “If I’m not OK with me, I can’t tell you anything but lies because I’m afraid. But if I’m OK with me, it doesn’t matter what you think.”

Gillum learned that big step in therapy, which he started attending regularly in 1994 and continued once he got clean for the last time in 1999. “Every time you tell the truth, a weight falls off. You feel free, you feel exhilarated, because all that fear traps you.”

But once you reach self-acceptance, what’s next?

WHEN IT COMES TO LEARNING HOW TO DISCLOSE HIV in your love life, step two is coming to understand that there isn’t one right way to do it. Some HIV-positive people are totally upfront about their status with potential lovers, while others prefer to wait until they get to know someone better before they disclose. In many ways, HIV disclosure (and

PREVIOUS PAGES: (GILLUM) JAMEY GUY; (RODRIGUEZ) BILL WADMAN

“I TRY TO BE UPFRONT ABOUT IT AS QUICKLY AS POSSIBLE, BECAUSE IT IS SOMETHING THAT’S SUCH A BIG PART OF MY LIFE. IT’S NOT ME, BUT IT IS A PART OF ME.”

Born with HIV, Christina Rodriguez, now 24 years old, told her boyfriend about her status on their first date.

“EVERY TIME YOU TELL THE TRUTH, A WEIGHT FALLS OFF YOU. YOU FEEL FREE, YOU FEEL EXHILARATED, BECAUSE ALL THAT FEAR TRAPS YOU.” who you ultimately decide to tell) walks the fine line between to her how little HIV education people are receiving these days. balancing honesty with your right to privacy.

She suggests not getting angry at questions like: “Can HIVChristina Rodriguez, a 24-year-old Harlem native who was positive people still have children?” or “Do you have AIDS?” born with HIV, knows her way around the dating and disclosure or “Can I tell other people?” It’s a learning experience for everygame pretty well by now. She told her boyfriend, Tony, about one, and one that helps promote HIV education and defeat the her long-term HIV status on their very first date—and blogged played-out stigma that still remains around the virus. about it to help other HIV-positive girls in a 2014 post for Four years after disclosing her status, Rodriguez is still in a Women’s Health magazine. relationship with Tony, who works as a police officer and has “I try to be upfront about it as quickly as possible, because no problem telling others that his girlfriend is living with HIV. it is something that’s such a big part of my life. It’s not me, They credit education, communication and her confidence but it is a part of me,” says Rodriguez, a recent college graduate with keeping them together. and co-founder of SMART Youth, a sex education workshop in New York City that meets weekly to empower youth ages UNFORTUNATELY, NOT EVERY STORY ABOUT HIV 13 to 22 about making smart, informed choices about sex, disclosure has a happy ending. Even with medical advanceHIV and relationships. ments in the way we treat and talk about the virus today, a lot Rodriguez credits her support group of high school and of people are still not comfortable with dating someone living college-age kids (and her mom, who o runs an AIDS service organization for adults called alled SMART University) for giving her the confidence it took to step out into her first serious relationship four years ago.

“I had a lot of anxieties, but I HOW TO REVEAL YOUR HIV STATUS also really practiced and went over what I wanted to bring up,” she recalls. In fact, Rodriguez still regularly arly holds discussions about disclosure with her group, providing both tips for HIVpositive kids on how to talk about their PICK A PARTNER happy I waited to tell him until I status, and information to HIV-negative “Now I meet most people online was ready.” kids on how to be good allies. using sites like POZ Personals. It —Christina Rodriguez One of the biggest things to keep in allows you to meet all sorts of mind when disclosing your status, says people, but I’m not in a relationship WHEN TO TELL Rodriguez, is to remember “we’re not in and haven’t been in one for 14 “I’m an upfront kind of guy. the ’80s anymore.” The stigma around years. At this point, there is a Throw out the damn threeHIV may remain, but effective antiretrodifferent level of man I need to day rule. A well-written text viral treatments—which, when taken be with. I need a man who is OK message letting them know correctly, can make it virtually impossible with himself.” usually works.” to transmit HIV to others, not to mention —Robert Gillum —Tyler Curry condoms and pre-exposure prophylaxis (PrEP) to help protect your partner—are “I’ve actually known my boyfriend “Do it earlier. You will be surnow widely available in this country. since I was 13, but I never had prised at the response you get, Rodriguez also recommends opening that point where I needed to talk because most people are just up the floor to any questions after you to him about HIV. In retrospect, looking for honesty. Disclosing disclose. “It’s definitely going to help this we’d always been more than [your HIV status] simply allows person get on your level,” she says. Her friends, but there’s a right time both people to feel safe.” work in supplemental sex ed has proved for everything, and I’m really —Robert Gillum

36 POZ JANUARY/FEBRUARY 2016 poz.com

with the virus. However, as Tyler Curry, senior editor for the HIV Equal Campaign, says, “Your status is not a part of your character. It’s now a matter of logistics.”

Curry came out as HIV positive online in 2012, when he was 28 years old. For the last two and a half years, he has been writing nonstop about his life with the virus on HIV Equal’s site, as well as for The Huffington Post, Instinct magazine, The Daily Grind and other news blogs. Primarily, Curry writes to fight HIV stigma, but he also offers dating advice for mostly gay, young, HIV-positive men.

Curry notes that the way he got the virus wasn’t from an openly HIV-positive guy—it was from a man who did not know his status.

“I feel like disclosure is one of the most pressing topics for HIV-positive men today,” he says when asked about why he has become an advocate, sharing dating tips in blogs and on YouTube. “It’s weird, because I was never afraid to date HIVpositive guys back when I was HIV negative.”

That brings us to our final step in learning to disclose your HIV status: figuring out how you’re going to deal with rejection.

Even as the conversation about PrEP and undetectable viral loads is starting to take hold among gay men, a recent survey in Seattle, a more liberal city, revealed that 42 percent of HIVnegative men who have sex with men (MSM) said they still would only have sex with other HIV-negative men.

“How much time does it take to get to know somebody? Is one date enough? Is three? It should be before sex, but I think what a person should really decide is if they think this relationship has potential to go somewhere, and then disclose.”

—Rae Lewis-Thornton (read her related story, “Learning to Love Herself,” on page 38).

LOCATION, LOCATION, LOCATION “I’ve been told in public places, and it’s not the best place to do it.

You want to be comfortable. You want to be able to take a breath or go to the bathroom if you need to.

And you need enough time that your partner can absorb the info and be able to ask questions.”

—Christina Rodriguez “Tell people at the kitchen table with your clothes on. Explain it in

“Don’t waste your time on somebody who would reject you over an HIV status,” Curry laughs. “It sucks, it isn’t fair, but there’s nothing you can do about it.” Plus, he notes, HIV has helped him weed out some of the more immature, uneducated guys on his dating roster.

Curry has come under some fire for his attitude toward dating and HIV, with some arguing that as a handsome, Internetfamous, white gay man, he’s not being realistic about how hard living with HIV can be for others. He acknowledges this privilege in some of his posts, but notes that what underlies his advocacy is a message of empowerment.

At the end of the day, what matters is accepting yourself and your status, and knowing who you are regardless of HIV. “To me, confidence is sexy,” Curry says. “I feel like a lot of guys would be turned on by your willingness to just be you and own who you are.”

But it’s also about giving other people the truth they need to make an informed, trusting choice to be with you. It’s not just a way to fight back against the stigma about HIV—it’s a way to take personal responsibility for ending the epidemic.

“Since I came out, I’ve had a lots of guys tell me they wouldn’t date me, but I never feel rejected,” says Gillum, more than 20 years after that day in Minneapolis when he chose to stop lying about his HIV status. According to Gillum, “You can’t feel rejected by somebody else’s choice.” ■

terms of a health issue: This is what our risk factors are, this is how you put me at risk for other things, and this is what the disease looks like for me.”

—Rae Lewis-Thornton BE PREPARED “Getting rejected is what helped me deal with rejection. Over time, I found that [disclosure] is only difficult because people don’t know a lot about HIV. But along the way, there have been some really great guys who were willing to learn about it. Hang in there.”

—Addie Baughman “Sometimes it helps to write out what you want to say first, your fantasies about how you hope it goes and questions you think they might have. Also, there might be a lot of silence, and that’s OK. I don’t think the other person should ever give an outright reaction anyway.”

—Christina Rodriguez

“You shouldn’t even be dating if you don’t have a support group to help you through it. Tell your family and your friends, so that when rejection does happen, you know people have got your back.”

—Tyler Curry YOU DISCLOSED! NOW WHAT? “I always tell people, ‘I’ll let you go think about it.’ If they want to go talk to somebody else about it— their friends, their therapist, their doctor—before getting back to me, that’s fine.”

—Robert Gillum “It’s really helpful to ask your HIV doctor a lot of questions. One of my partners actually came to the HIV clinic with me to learn about how to have safer sex. Because of that, I don’t feel like a leper anymore, and I feel much more knowledgeable about the virus.”

—Addie Baughman

poz.com JANUARY/FEBRUARY 2016 POZ 37

HEROES

BY CASEY HALTER

Rae LewisThornton speaks out to help others live and love free of HIV stigma.

38 POZ JANUARY/FEBRUARY 2016 poz.com

Twenty-two years ago, Rae Lewis-Thornton debuted as a face of AIDS in black America on the cover of Essence magazine—showing that an attractive, drug-free, educated young woman could still be vulnerable to an expanding and increasingly complicated epidemic.

Over the years, the Emmy Award–winning activist, writer and ordained minister has learned about living and loving with HIV. But like a lot of folks surviving long-term with the virus, LewisThornton has also had to learn about disclosure, acceptance and self-love along the way.

“When I was first diagnosed with HIV, I kept my status a secret for almost seven years,” recalls Lewis-Thornton, who tested positive in 1987, when she was 23 years old. “I told maybe five people I was infected, along with the men I dated.

I didn’t talk about it, they didn’t talk about it, we used condoms, and that was it.”

When the Chicago native went public in 1994, she started on a nationwide tour of college campuses, HIV conferences, and television and magazine interviews—speaking about her life dozens of times a month to rooms full of strangers.

Despite the admiration she received, stigma and pain still followed the young activist. LewisThornton remembers when she married an HIVnegative man, people marveled that anyone would want to be with her. Then, when her marriage spiraled into abuse, she was afraid to leave it and get back into the world of dating with HIV. In the end, “I had to make a decision: AIDS wasn’t going to kill me, and he wasn’t going to kill me either,” she says.

Lewis-Thornton, now 53, is a no-holds-barred blogger at both POZ and The Body. She writes about everything from her own self-empowerment and regretted secret relationships, to real talk about HIV-related health issues.

One of her biggest tips for finding love with HIV today: “I made a rule that if you couldn’t walk with me in the daylight, you couldn’t have coochie in the dark,” Lewis-Thornton says. She often laments that today, the challenge is less about finding sex and more about how to find loving, supportive relationships, free of stigma.

To read more about her life, check out LewisThornton’s upcoming memoir, Unprotected, which hits bookshelves early this year. The activist’s third book is a tell-all about her life, including tales of childhood sex abuse, the physical and emotional abuse she endured as an adult, and a big reveal about how she got HIV—a sensitive topic she has never broached before now.

Lewis-Thornton says her faith helped her open up about her status, and she wants to spread her ongoing journey of empowerment to the world.

“The energy that you send out is the energy you get back,” she advises. “At the end of the day, you want to love yourself.”

CYNTHIA LYNN

Learning to Love Herself

SURVEY

10

Do you regret disclosing your status to anyone?

❑ Yes ❑ No 11

Has disclosing your status gotten easier the more you’ve done it?

❑ Yes ❑ No 12

Do you feel obligated to reveal your status to a potential sex partner?

❑ Yes ❑ No 13

Have you ever had sex with someone without disclosing your status?

❑ Yes ❑ No 14

DISCLOSURE

❑ Yes ❑ No

Whether you’re newly diagnosed or a long-term survivor, there will likely be situations in your life in which you’ll need to decide whether or not to disclose your HIV status.

In most instances it’s a personal choice, and there are no right answers for everyone. POZ wants to know your thoughts on disclosure.

15

What year were you born?__ __ __ __

16

What is your gender?

❑ Male ❑ Female ❑ Transgender ❑ Other 17

1

How soon after your HIV diagnosis did you disclose your status to someone?

❑ Same day ❑ Within one week ❑ Within one month ❑ Within one year ❑ After one year ❑ I have yet to disclose my status (skip to question 12) 2

18

ISTOCK

9

Family Sex partners Co-workers Employers Health care provider

❑ Yes ❑ Yes ❑ Yes ❑ Yes ❑ Yes ❑ Yes

19

❑ No ❑ No ❑ No ❑ No ❑ No ❑ No

What is your current level of education?

❑ Some high school ❑ High school graduate ❑ Some college ❑ Bachelor’s degree or higher ❑ n/a ❑ n/a ❑ n/a ❑ n/a ❑ n/a ❑ n/a

20 What is your annual household income?

❑ Less than $15,000 ❑ $15,000–$34,999 ❑ $35,000–$49,999 ❑ $50,000–$74,999 ❑ $75,000–$99,999 ❑ $100,000 or more

Have you ever experienced a negative reaction to your disclosure?

❑ Yes ❑ No

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

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

Have you disclosed your HIV status to…

Friends

What is your sexual orientation?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other

To whom did you first disclose your status?

❑ Spouse/partner/significant other ❑ Friend ❑ Parent ❑ Sibling ❑ Other relative ❑ Other 3 4 5 6 7 8

Do you believe keeping your HIV status a secret negatively affects your health?

21

What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #209, 212 West 35th Street, 8th Floor, New York, NY 10001

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