BECAUSE YOU’RE MORE THAN YOUR STATUS
THE U=U CHAMPION
HOW BRUCE RICHMAN AND A CREW OF U=U AMBASSADORS ARE CHANGING EVERYTHING BRYAN JONES,ALLEEN KING-CARTER, DAVINA CONNER,AND VICTOR CLAROS
BLACK WOMEN LONG-TERM SURVIVORS TELL US WHAT IT’S REALLY LIKE FOR THEM
JANUARY/FEBRUARY 2020 hivplusmag.com
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IMPORTANT FACTS FOR BIKTARVY® 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
POSSIBLE SIDE EFFECTS OF BIKTARVY
BIKTARVY may cause serious side effects, including:
BIKTARVY may cause serious side effects, including: } Those in the “Most Important Information About BIKTARVY” section. } 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 (6%), and headache (5%).
} 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 if you: } Have or have had any kidney or liver problems,
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.
including hepatitis infection. } Have any other health problems. } 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. } 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. Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.
HOW TO TAKE BIKTARVY
Tell your healthcare provider about all the medicines you take:
Take BIKTARVY 1 time each day with or without food.
} Keep a list that includes all prescription and over-the-
GET MORE INFORMATION
counter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. } BIKTARVY and other medicines may affect each other.
Ask your healthcare provider and pharmacist about medicines that interact with BIKTARVY, and ask if it is safe to take BIKTARVY with all your other medicines.
Get HIV support by downloading a free app at
MyDailyCharge.com
BVYC0102_BIKTARVY_A_7-875x10-5_Plus_KeepAspiring_C1_r1v1jl.indd All Pages 18827 Biktarvy Plus 129.indd 2
} 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, KEEP ASPIRING, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. Version date: December 2018 © 2019 Gilead Sciences, Inc. All rights reserved. BVYC0102 01/19
1/18/19 10:45 AM
KEEP ASPIRING. Because HIV doesn’t change who you are. BIKTARVY® is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in certain adults. BIKTARVY does not cure HIV-1 or AIDS.
Ask your healthcare provider if BIKTARVY is right for you. To learn more, visit BIKTARVY.com.
Please see Important Facts about BIKTARVY, including important warnings, on the previous page and visit BIKTARVY.com.
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IN THIS ISSUE JANUARY / FEBRUARY 2020
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36 ON THE COVER 20 THE POWER OF U The message that undetectable equals untransmittable continues to emotionally free people living with HIV—and it changes everything we know about the virus. The movement's top soldiers, including campaign founder Bruce Richman, discuss the future of U=U.
FEATURES 32 WHAT ABOUT US? Since the epidemic's onset, Black women remain the most at-risk females in terms of HIV. So why do we continue to ignore them? 36 STILL, SHE RISES Read some inspiring stories of strong Black women who are also long-term HIV survivors. 40 FAMILY TIES Don't let your status stall plans of starting a family of your own. 2
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BUZZWORTHY 6 THE VAN NESS EFFECT The bubbly Queer Eye star is stamping out stigma and spreading the U=U message. 7 MOTHERLAND LOVE Africa gets big bucks from Bill Gates for HIV research. 7 BITTER PILL The latest stats reveal your daily regimen could be getting you down. 8 HIV: THE NUMBERS The latest facts and figures about HIV and other STIs. 9 EASIER PREP California becomes the first state to offer prescriptionless PrEP. 9 DON'T RING THE ALARM Relax. The new strain of HIV is no cause for panic.
TREATMENT 12 UNBREAKABLE A simple med switch could increase bone density. 13 BUZZWORTHY THE SKINNY ON FAT Is there a connection between fat and HIV meds? 6 THE VAN NESS EFFECT The bubbly 14 HAPPY can helpout poz people QueerUP EyeExcercise star is stamping stigma and chase away the spreading theblues. U=U message. 15 7 POTTY PROBLEMS A new strain of big bucks MOTHERLAND LOVE Africa gets diarrhea is problematic gay & bi men. from Bill Gates for HIVfor research. 7 BITTER PILL The latest stats reveal your PREVENTION
daily regimen could be getting you down. 16 STAYING HEALTHY The latest on cancer. 8 preventing HIV: THEHPV-related NUMBERS The latest facts and figures about HIV and other STIs. WELLNESS
SHUTTERSTOCK
EASIER PREP California becomes 18 9 SLOW YOUR ROLL Lessons from ourthe first state to offer prescriptionless PrEP. Northern neighbors on staying chill. 9 DON'T RING THE ALARM Relax. The new STIGMA strain of HIV is no cause for panic. 46 GENERATION GAP New research shows millenials are ill-informed on HIV.
DAILY DOSE 48 BRINGIN' SEXY BACK Get the love you deserve regardless of your status.
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COVER: Bruce Richman, photographed by Elizabeth Brooks. OPPOSITE: Richman and other U=U activists, courtesy Bruce Richman (top); Sophia Harrison (bottom) photographed by Aamir Khuller.
12/6/19 12:08 PM
editor in chief DIANE ANDERSON-MINSHALL • evp, sales and branded partnerships GREG BROSSIA
creative director RAINE BASCOS deputy editor JACOB ANDERSON-MINSHALL managing editor DAVID ARTAVIA copy chief TRUDY RING associate editor DESIRÉE GUERRERO assistant editor DONALD PADGETT editor at large TYLER CURRY contributing editors KHAFRE ABIF, MARK S. KING, ZACHARY ZANE mental health editor GARY MCCLAIN contributing writers JEANNIE WRAIGHT, MICHAEL SCHREIBER interactive art director CHRISTOPHER HARRITY online photo and graphics producer MICHAEL LUONG front end developer MAYRA URRUTIA manager, digital media LAURA VILLELA assistant vp, integrated sales STUART BROCKINGTON executive directors, integrated sales EZRA ALVAREZ, MICHAEL RIGGIO, PATTY AGUAYO senior director, ad operations STEWART NACHT manager, ad operations TIFFANY KESDEN designer, branded partnerships MICHAEL LOMBARDO director, branded partnerships JAMIE TREDWELL associate director, branded partnerships ERIC JAMES senior manager, branded partnerships TIM SNOW integrated ad sales and branded partnerships coordinator DEAN FRYN integrated ad sales and marketing associate PRESTON SOUZA branded content writer IAN MARTELLA director of circulation ARGUS GALINDO office manager HEIDI MEDINA print production director JOHN LEWIS
PRIDE MEDIA chief executive officer ORLANDO REECE chief finance officer JANELLE MITCHELL evp, sales and branded partnerships GREG BROSSIA corporate executive vice president BERNARD ROOK vice president ERIC BUI human resources ANTIOUSE BOARDRAYE ADVERTISING & SUBSCRIPTIONS Phone (212) 242-8100 • Advertising Fax (212) 242-8338 Subscriptions Fax (212) 242-8338 LOS ANGELES EDITORIAL Phone (310) 806-4288 • Fax (310) 806-4268 • Email editor@HIVPlusMag.com SOUTHWEST EDITORIAL OFFICES Retrograde Communications • Phone (951) 927-8727 Email editor@HIVPlusMag.com FREE BULK SUBSCRIPTIONS FOR YOUR OFFICE OR GROUP Any organization, community-based group, pharmacy, physicians’ office, support group, or other agency can request bulk copies for free distribution at your office, meeting, or facility. To subscribe, visit HIVPlusMag.com/signup. There is a 10-copy minimum. FREE DIGITAL SUBSCRIPTIONS Plus magazine is available free to individual subscribers—a digital copy of each issue can be delivered to the privacy of your computer or reader six times per year. We require only your email address to initiate delivery. You may also share your digital copies with friends. To subscribe, visit HIVPlusMag.com/signup. NEED SUBSCRIPTION HELP? If you have any questions or problems with your bulk or individual magazine delivery, please email our circulation department at Argus.Galindo@pridemedia.com. Plus (ISSN 1522-3086) is published bimonthly by Pride Publishing Inc. Plus is a registered trademark of Pride Publishing Inc. Entire contents © 2020 by Pride Publishing Inc. All rights reserved. Printed in the U.S.A. Unless otherwise noted, all stock images are of posed models.
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EDITOR’S LETTER
At the 2017 U.S. Conference on AIDS (from right): Bruce Richman, activist Damon Jacobs, deputy editor Jacob Anderson-Minshall, and me
LUKE FONTANA (DIANE); JACOB ANDERSON-MINSHALL (GROUP)
T H E R E WA S A joint report out this
winter from the Prevention Access Campaign and Merck, which uncovered alarmingly widespread ignorance and stigma around HIV from young people. The answers from both millennials and Gen Z (a generation we often talk about being more open, inclusive, and diverse than any before) were heartbreaking. Over a quarter of HIV-negative millennials (those between the ages of 23 and 36) say they avoid hugging, talking, or even being friends with someone who is living with HIV. Thirty percent avoid interacting socially with someone with HIV. One in three Black and Latinx millennials also avoid shaking hands or sharing drinks or utensils with someone living with HIV. Considering that one cannot acquire HIV through any of those means, these widespread fears are a testament to the absence of updated education around HIV. In the “Owning HIV: Young Adults and the Fight Ahead” study, Gen Zs fared worse. Fortyone percent of those who were 18-22 years old were either “not at all informed” or only “somewhat informed” about HIV. This is why the work of the Prevention Access Campaign and its founding director, Bruce Richman, is so critical. For the last several years, PAC has recruited scientists,
doctors, and activists to help spread the now nearly-universally accepted message about U=U (or undetectable equals untransmittable). U=U has been endorsed by scientists worldwide, including the Centers for Disease Control and Prevention, the U.S. federal government’s health protection agency. Still, many people have never heard (or refuse to believe) that people living with HIV who are on treatment cannot transmit HIV once they reach and maintain an undetectable viral load. Richman has been the driving force behind getting that message out, and he and PAC deserve accolades for spearheading the drive to educate the world about what is one of the most significant medical breakthroughs around HIV in years. U=U is stigma busting and it offers a clear path to end the epidemic. We’ve been covering Richman’s work for almost a decade, and at this point I am proud to call him a friend. But that doesn’t influence the magnitude of what he and dozens of other U=U ambassadors have pulled off. While there is much more to do, as many of the folks profiled in this issue will attest, we just want to stop and marvel at where we are now. If we can get everyone access to treatment and money to pay for it—a tall task, I know—most people could reach undetectable levels and never again have to worry about how (or who) they love.
DIANE ANDERSON-MINSHALL EDITOR IN CHIEF EDITOR@HIVPLUSMAG.COM
HIVPLUSMAG.COM
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BUZZ BUZZWORTHY
UNDETECTABLY DELECTABLE
This Queer Eye star is one of the most famous people in the world using his platform to speak about living with undetectable HIV. SINCE JONATHAN VAN NESS revealed he was living
with HIV, the Queer Eye star has been hitting the media circuit to share the message that undetectable equals untransmittable (U=U), a global consensus that when someone’s viral load is suppressed to undetectable levels it is impossible to transmit HIV to sexual partners. In his new memoir, Over the Top: A Raw Journey to Self-Love, Van Ness mapped out an odyssey that included childhood sexual abuse, depression, drug use, sex addiction, and a positive diagnosis. “I’d been very fearful as a small child,” he admitted recently on the Today show, referencing his anxiety about contracting HIV as a youth. “I was born in 1987, so growing up in the midst of the HIV/AIDS crisis and having two parents who were the age of seeing people [die]. We lost an entire generation of people.” In his memoir, Van Ness recalls working at a hair salon and fainting while taking care of a client. Soon after, he went to Planned Parenthood for an STI test where he eventually learned his positive HIV status.
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“The first thing I remember asking [the doctor] is: ‘Do you think I still could live to be 75?’ I was 25 at the time,” he writes of the follow-up appointment. “The doctor chuckled. ‘I’ll keep you alive long enough to die of cancer or a heart attack like everybody else,’ she said. She informed me that HIV treatment has come a long way and it is no longer a terminal illness, but a chronic one that is relatively easily managed with daily medication.” After he had been on medication just two weeks, Van Ness’s HIV was undetectable in his blood. “Once I was undetectable, I was no longer at risk of infecting anyone,” he explains to readers in the book, adding, “Once I found out I was positive, I never held back my HIV status from my sexual partners. No matter how clunky and no matter how many dates or sexual encounters it meant I wasn’t having.” In the book, the reality star touches on the fact that for many folks living with HIV, access to care is limited. Since coming out publicly, Van Ness has continued using his platform to educate. Recently, he joined with Planned Parenthood “for the fight to bring affordable sexual health care for everyone,” as he wrote on Instagram. Van Ness encourages those living with HIV to fulfill their dreams—just like he has. “I take a pill every day now, and I see a doctor every three months, but other than that, I’ve done nothing but get cuter, realize my dreams, look better topless than I’ve ever looked before, and my new figure-skating curves? Don’t even get me started. Postdiagnosis, I’ve accomplished more than many HIV-negative people will ever have the chance to do.”
AMY SUSSMAN/GETTY IMAGES
BY DAVID ARTAVIA
JANUARY / FEBRUARY 2020
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Young Muslim women rally during the Eid al-Adha holiday in Ethiopia.
NEW HELP FOR AFRICA
NEIL THOMAS/CORBIS/GETTY IMGAES (WOMEN); LUIS CRUZ/PEXELS (MAN)
Gates Foundation and NIH donate $200 million for HIV and sickle cell disease research. A new public-private collaboration is devoting dollars and other resources to develop gene-based cures for HIV and sickle cell disease. The National Institutes of Health and the Bill & Melinda Gates Foundation each pledged to devote $100 million towards the goal of finding an affordable and globally available cure. The collaboration will use an aggressive approach that seeks to capitalize on shared gene-based strategies, which will be applied in disproportionately impacted regions while still pursuing parallel lines of research. “This unprecedented collaboration focuses from the get-go on access, scalability, and affordability of advanced gene-based strategies for sickle cell disease and HIV to make sure everybody, everywhere has the opportunity to be cured, not just those in high-income countries,” said NIH director Francis S. Collins, MD, Ph.D., in a press release. “We aim to go big or go home.” Unlike HIV, which is an acquired virus, SCD is genetically inherited. Though each presents different scientific challenges, the team believes much of the technical research will be common for both conditions. The goal of the collaboration is to focus efforts and apply solutions where they are most needed. Low-resource communities globally face significant burdens from HIV and SCD. Sub-Saharan Africa is disproportionately impacted, with 67 percent of people living with HIV located in the region, and half of these individuals untreated. Seventy-five percent of infants born with SCD hail from the same region. “While these treatments are exciting, people in low- and middle-income countries do not have access to these breakthroughs,” explained Trevor Mundel, MD, Ph.D., president of the Global Health Program at the Bill & Melinda Gates Foundation about recent treatment improvements that aren’t reaching Africans. “We aim to ensure these approaches will improve the lives of those most in need and bring the incredible promise of gene-based treatments to the world of public health.” There will be two areas of coordination in the collaboration. The first is to identify shared potential candidate cures for pre-clinical and clinical evaluation, followed by defining long-term opportunities to advance potential cures into trial testing with their African counterparts. “Beating these diseases will take new thinking and long-term commitment,” said Matshidiso Rebecca Moeti, MBBS, the regional director for Africa at the World Health Organization, regarding the double threat of SCD and HIV among the African population. “I’m very pleased to see the innovative collaboration announced today, which has a chance to help tackle two of Africa’s greatest public health challenges.” —DONALD PADGETT
HIV Treatment Stigma
66%
of respondents living with HIV say taking daily HIV medication is a reminder of their status.
32%
frequently or quite often hide their HIV medication to avoid revealing their status.
30%
felt stressed and pressured to take their medication at the right time every day. The data also highlighted that those who are more “open” about their status suffered less stress and anxiety in terms of taking a daily treatment regimen. —DESIRÉE GUERRERO
SOURCE: International survey released at IDWeek 2019 by ViiV Healthcare. HIVPLUSMAG.COM
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BUZZWORTHY
Poz people are now more likely to die from lung cancer than HIV, according to a 2017 report. Researchers found that people who continued to smoke were six to 13 times more likely to die
from lung cancer than from traditional AIDSrelated causes. Source: JAMA Internal Medicine 2017
1 Million+
The number of sexually transmitted infections that are contracted each day around the world. Source: World Health Organization 2019
1 in 5
People living with HIV who experience diarrhea. Source: IDWeek 2016
How often should you see a doctor? For people living with HIV, it is recommended to check in with your doctor every three to four months. HIV is a treatable and manageable condition not unlike diabetes. You can lead a happy, healthy life with a normal life expectancy and reduce the chances of transmitting HIV to others once you get on treatment. Once your viral load becomes suppressed to undetectable levels, it becomes impossible to transmit the virus to a sexual partner. But part of staying healthy is seeing your HIV care provider regularly so they can track your progress and make sure your treatment is working for you. Though guidelines recommend seeing a provider for lab tests every three to four months, some people might go more frequently—especially during the first two years of treatment or if their viral load is not suppressed. Those who take their medication every day and have had a suppressed viral load at every test for more than two years only need to have their lab tests done two times a year. Source: HIV.gov
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Watching the Bum Rectal douching might increase the odds of contracting HIV and other STIs—including hepatitis, chlamydia, and gonorrhea. Researchers in a new study state that douching before sex can damage the lining of the rectum, which leads to an increased risk of transmission due to indirect entry into the bloodstream. More studies are needed to examine co-occurring high-risk sexual behaviors among gay and bisexual men who practice douching. Source: Sexually Transmitted Infections 2019
CAN’T AFFORD YOUR MEDS?
8% 13%
of people living with HIV aren’t adhering properly due to cost.
of people living with HIV reported at least one cost-saving strategy.
Source: 2019 Conference on Retroviruses and Opportunistic Infections (CROI)
SHUTTERSTOCK (ALL)
DITCH CIGS NOW!
JANUARY / FEBRUARY 2020
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WITHOUT DOCTORS California becomes first state in the nation to make PrEP and PEP available without a prescription. As of January 1, pharmacists in California are able to dispense HIV prevention drugs without a prescription under a bill signed into law by Gov. Gavin Newsom, making the state the first in the nation to allow such an arrangement. Senate Bill 159 expands access to the prevention drugs, its backers say, as the need to obtain a prescription can be a barrier for many people. The bill authorizes pharmacists to furnish at least a 30-day supply and up to a 60-day supply of drugs used for pre-exposure prophylaxis, or PrEP, without a prescription, according to a press release from Equality California, a cosponsor of the bill. It also allows pharmacists to provide a full course of drugs used for post-exposure prophylaxis, or PEP. PrEP involves the daily consumption of a drug (longer-acting versions are in development) by people who are HIV-negative to prevent them from contracting the virus if exposed to it. PEP is the administration of drugs to prevent HIV contraction
Don’t Panic
Scientists have discovered the first new strain of HIV in 19 years, but it’s no cause for alarm.
SHUTTERSTOCK (BOTH)
BY NICO LANG Researchers with Abbott Laboratories and the University of Missouri, Kansas City discovered a new strain of the human immunodeficiency virus related to the Group M version of HIV-1, according to a report published in the Journal of Acquired Immune Deficiency Syndromes. There are two types of the virus: HIV-1 and HIV-2, the latter which is relatively rare. Of the four strains of HIV-1—Groups M, N, O, and P— the former is responsible for the vast majority of HIV cases worldwide. In order to be classified as a new subtype of HIV, scientists have to identify three independent cases. Researchers told CNN they have done so: two samples were discovered in the Democratic Republic of Congo, one in a sample from 1983 and one found in 1990, while a third person in the African nation was found to have the new HIV strain in 2001. Mary Rodgers, a coauthor of the study, told CNN that identifying the strain as an entirely new subtype proved a “real challenge for diagnostic tests,” which is why its existence is only coming to light now. “The sample was small, and while it seemed similar to the two older samples, scientists wanted to test the whole genome to be sure,”
after a person believes they have been exposed. The drugs must be taken within 72 hours after potential exposure and continued for 28 days. Two drugs, Truvada and Descovy, both marketed by Gilead Sciences, have been approved by the Food and Drug Administration for use as PrEP. A generic version of Truvada is expected to be available soon. For PEP, health groups recommend a combination of Truvada and Isentress, although if patients have a problem with these drugs, others can be considered. The California bill also prohibits insurance companies from subjecting antiHIV drugs, including those used for PrEP and PEP, to prior authorization or “step therapy,” which requires a patient to take cheaper alternatives to the drugs prescribed. An exception can be made if an equivalent drug is available. And insurers are required to cover the drugs, with some specified exceptions. Pharmacists who dispense PrEP and PEP drugs without a prescription must first complete a training program approved by the California State Board of Pharmacy. When providing the drugs, they must determine that the patient meets the clinical criteria for use, as established by federal government guidelines. The California Health Benefits Review Program estimates that the new law will increase the use of PrEP and PEP by 2 percent in its first year in effect, preventing 25 new cases of HIV. Access to PrEP and PEP is particularly limited in rural parts of the state and among minority populations, and SB 159 will help improve this situation, according to Equality California. “The HIV epidemic is still a pressing issue today—especially for LGBTQ people of color and folks in rural communities,” Executive Director Rick Zbur said in the press release. “SB 159 is a giant step forward in getting to zero transmissions, zero deaths, and zero stigma.” “Use of PrEP and PEP in California remain far too low, particularly in communities most affected by HIV,” APLA Health CEO Craig E. Thompson said in a press release when Newsom signed the bill, saying SB 159, “will increase the places where people can access these medications, increase the number of healthcare professionals who can provide them and remove onerous and unnecessary insurance barriers.” —TRUDY RING
CNN reports on the nearly two-decades-long process of verifying the strain’s existence. “At the time, there wasn’t technology to determine if this was [a] new subtype. So scientists at Abbott and the University of Missouri developed new techniques to study and map the 2001 sample.” The strain is now known as subtype L, the 10th strain of Group M. Different subtypes can also combine to form a “circulating recombinant form,” also known as a CRF. According to the international HIV nonprofit Avert, there are currently 89 known CRFs but there could be more in the future as the virus continues to evolve. “There’s no reason to panic or even to worry about it a little bit,” Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases, told CNN. “Not a lot of people are infected with this. This is an outlier.” Not much is known about how subtype L might affect individuals differently, but scientists are confident that they will be able to effectively test for and treat it. “This discovery reminds us that to end the HIV pandemic, we must continue to out think this continuously changing virus and use the latest advancements in technology and resources to monitor its evolution,” study co-author Dr. Carole McArthur told CNN. HIVPLUSMAG.COM
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NO BONES ABOUT IT BONE LOSS ASSOCIATED WITH ONE DRUG MAY BE REVERSED BY SWITCHING TO ANOTHER. BY JACOB ANDERSON-MINSHALL Switching from one tenofovir-based regimen to another may help increase bone strength among older people living with HIV whose viral loads are suppressed, according to a recent study in The Lancet HIV. The team of European researchers started with 167 participants over the age of 60 who had an undetectable viral load and were taking an antiretroviral regimen with tenofovir disoproxil fumarate. TDF has long been known to have potential detrimental impacts on bone health, and those over 60 are at the greatest risk for falls and other injuries where weakened bones can become life-threatening. As more and more people with HIV are living beyond their 70s, the risks posed by TDF become of greater concern. In the Gilead-funded study, investigators switched two-thirds of participants from TDF to a regimen containing tenofovir alafenamide, elvitegravir, cobicistat, and emtricitabine (brand name Genvoya). After 48 weeks of treatment, the researchers found that bone mineral density at the spine and hip increased in the TAF group but declined among those who stayed on TDF. “The increases in bone mineral density observed in these people with HIV after switching from TDF to TAF 12
have potentially important clinical consequences in terms of morbidity and mortality,” the authors noted of the impact of the drugs (and bone density) on the health and longevity of those living with HIV. “The bone mineral density increases were greater than expected in the general population.” In an accompanying editorial in the journal, Dr. Nicola Gianotti and Dr. Antonella Castagna (not involved in the study) argued that the findings are significant, particularly for older people living with HIV. “This study shows for the first time that bone loss is reversible in people living with HIV aged 60 years or older— i.e., people with physiologically reduced bone mineral density,” they wrote. Indeed, while it’s been known that TDF can cause bone loss, this is the first time a study has shown that that loss can potentially be reversed while retaining undetectability and viral suppression. But the study’s findings were not entirely positive for TAF, as the study found that those who switched to Genvoya from TDF also saw an increase in cholesterol, a major risk factor for heart disease. TDF has been a foundational component of many antiretroviral regimens over the past two decades because it has been proven effective and is well tolerated, but it has been increasingly associated with bone density loss and liver damage. The newer TAF has proven to be safer in relation to bone and kidney health while being as effective as TDF. Poz folks over 50 face higher risks of conditions associated with aging, including bone loss, but there has been little research done on the benefits of switching from TDF to TAF. At the beginning of the study about 50 percent of the participants had normal bone density at both the spine and hip. By the end of the study, 56 percent of those on TAF had normal bone density, but the rate had fallen to 46 percent among those remaining on TDF. In addition, those switched to TAF were more likely to see improvements in their preexisting osteopenia (bone weakness). Kidney function also improved with TAF, but growth in cholesterol and triglycerides, a negative impact, was noted as well. The study’s authors suggested that the rise in cholesterol and its impact on heart health “might be outweighed by the other major concerns noted with TDF, such as potential renal effects and decreased bone mineral density.” Gianotti and Castagna also called for more research involving women and nonwhite participants, since the majority in this study were white males. Still, they lauded the results, concluding, “We now know that switching from TDF allows a partial recovery of bone mass... which will probably reduce the risk of fractures in this population and improve quality of life in older people living with HIV.”
WOLFGANG ECKERT/PIXABAY
treatment
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DOES THIS PILL MAKE MY BUTT LOOK FAT?
SHUTTERSTOCK
New studies suggest common antiretroviral meds cause changes to body fat. Dolutegravir (Tivicay, also found in Triumeq and Dovato) and raltegravir (Isentress), both integrase inhibitors commonly used in HIV regimens, may change the structure of fat cells and could cause insulin resistance, French researchers reported at the 17th European AIDS Conference in Basel, Switzerland. The researchers studied cells from people living with HIV who had been taking dolutegravir or raltegravir. Previous studies have suggested that people taking an integrase inhibitor were more likely to gain weight, but until now it’s been unclear exactly why or how. Basically, it all comes down to the two kinds of fat tissue: brown fat (a.k.a. visceral fat), which collects around organs and in the abdomen; and white, or subcutaneous, fat, which collects just beneath the skin. Researchers found that dolutegravir and raltegravir can both have a direct effect on these fat tissues because they are associated with lower levels of leptin, a hormone that decreases the appetite, and adiponectin, a hormone that manages how our cells store glucose, a primary source of energy. After studying two groups of monkeys—where one group was on a regimen of either dolutegravir, tenofovir, and emtricitabine; or raltegravir, tenofovir, and emtricitabine; and another group was untreated—researchers found greater fibrosis (or a high formation of excess tissue) in fat tissue in the monkeys that were exposed to antiretroviral therapy. When it came to humans, researchers analyzed samples of fat cells from 14 people living with HIV, some who were taking integrase inhibitors and some who were not. The fat cells were collected when the people underwent weight-loss surgery. The data showed that 80 percent of the subjects had fibrosis in their subcutaneous fat tissue and 70 percent of those on integrase inhibitors had fibrosis in their visceral fat tissue. Some scientists believe fibrosis contributes to insulin resistance, which can cause diabetes and heart disease. To better understand the impact integrase inhibitors have on fat cells, researchers looked at
adipose (fat) stem cells collected from HIV-negative women. The scientists found that cells exposed to dolutegravir or raltegravir in the laboratory produced more of the types of collagen associated with obesity and with fibrosis in adipocytes, a specialized type of fat cell. The drugs were also associated with a greater production of fat cells and lipid storage, and with lower levels of leptin and lower uptake of glucose. A previous review of literature in JCI Insight noted that fibrosis within the adipose tissue might influence the development of obesity or obesity-related comorbidities, but that connection has not yet been proven conclusively. There is no scientific consensus about whether such fibrosis causes or contributes to obesity or is a result of being overweight. The 2018 piece called for additional research. The more recent study adds to our understanding of how two integrase inhibitors impact adipose tissue. It may not prove that the changes the integrase inhibitors cause in fat cells are the drivers of the weight gain associated with the drugs, but the results do suggest that there is a correlation. The authors concluded, “We demonstrate here for the first time…that INSTI [integrase inhibitors] exert a direct impact on adipose tissue adipogenesis, fibrosis and insulin resistance. These results, which reveal the adipose tissue toxicity of dolutegravir and raltegravir, are important to explain fat modifications reported in INSTI-treated HIV-infected patients.” — DAV I D A R TAV I A
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SWEAT YOURSELF HAPPY EXERCISE CAN LIFT DEPRESSION AND ANXIETY FOR PEOPLE WITH HIV.
LI SUN/PEXELS
Exercise reduces symptoms of depression and anxiety in people living with HIV, notes a new study published in the Journal of Psychosomatic Research. Specifically, researchers noticed that aerobic exercise, training at least three times a week, and exercising under professional supervision had the greatest benefits. The study’s authors note these findings are significant given that doctors often recommend exercise to those living with HIV. However, they still say results are varied, and argue that larger studies are needed to indicate what workouts benefit anxiety or depression symptoms the most. “The results of the meta-analysis for depression revealed a high and significant effect on depressive symptoms,” the authors explained. “A large and significant effect for anxiety was found at post-treatment.” People living with HIV are two to four times more likely to have anxiety and depression than their HIV-negative peers, according to the study. Dr. Andreas Heissel of the University of Potsdam in Germany conducted a metaanalysis of nearly two decades-worth of findings around the benefits of exercise for depression and anxiety in adults with HIV. These studies were published between 1990 and 2018, and involved a total of 479 individuals across the world, with locations including sub-Saharan Africa, India, the U.S., Iran, and Germany.
“Eight of the studies examined the impact of traditional types of aerobic and resistance training, with two evaluating yoga,” NAM’s AIDSMap reports, while “use of antiretroviral therapy was reported in six studies and data on antidepressant use were provided for two. The studies had a high retention rate and overall 90 percent of participants completed follow-up.” Nine of these studies reported on depression, and those results showed that exercise provided major benefits. Five studies examined anxiety, and they likewise found that exercise had a positive impact. “This meta-analysis showed the benefits of performing exercise for reducing depressive and anxiety symptoms well beyond the well investigated benefits for general health in people living with HIV,” Heissel pointed out. Larger studies with better methodology could help improve treatment for those living with HIV who also experience mental health struggles, Heissel and his team concluded. — DA
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INTERNATIONAL STI
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CLUSTERS OF DRUG-RESISTANT DIARRHEA FOUND AMONG GAY AND BISEXUAL MEN IN U.S. AND CANADA. According to researchers, a certain bacterial strain has acquired a new gene that makes it able to resist antibiotics via the DNA sequence known as CRISPR, clustered regularly interspaced short palindromic repeats (not to be confused with the CRISPR gene-editing technology). “Bacteria acquire CRISPR sequences from infecting viruses called bacteriophages, which insert fragments of DNA into bacterial genomes,” the University of Washington School of Medicine, which was involved in the study, reported in a news release explaining how bacteria get these pieces of DNA via viral infection. (Yes, even bacteria can get a viral infection.) These bacteriophages hijack their host system to reproduce and can leave bits of DNA behind. “In this case the CRISPR sequence appears to have included the drug-resistance gene.” The recent study, led by Dr. Alex Greninger, assistant professor of laboratory medicine at the UW School of Medicine, discovered nearly identical bacteria among these unrelated men in the two cities, and concluded it is likely being transmitted by men who have sex with men. Campylobacter is one of the most common causes of diarrhea around the world. In fact, according to a Centers for Disease Control and Prevention estimate, it causes 1.5 million illnesses in the United States every year. People usually recover without treatment, but those with serious cases or compromised health require antibiotics. What makes this new strain particularly dangerous is that it is resistant to those antibiotics used for treatment. “Enteric infections can be sexually transmitted infections,” Greninger said in the press release, about the intestinal infections that can be transmitted via anal intercourse, rimming, or other sexual practices. “The international spread of related isolates among MSM populations has been shown before for Shigella, so it makes sense to see it in Campylobacter as well.” The group of bacteria called Shigella cause about 500,000 cases of diarrhea in the United States annually, and outbreaks among gay and bisexual men have been noted for two decades. Men who have sex with men are at higher risk of multidrug resistance because they’re more likely to have taken antibiotics to treat past STIs, the authors of the new study state. According to MedScape, Campylobacter infections may be more common and cause prolonged or recurrent diarrhea among those living with HIV. While STI rates have increased significantly over the last few years, less is known about STIs related to intestinal bacteria. This outbreak among gay and bisexual men with a strain that is resistant to antibiotics raises the stakes. “The global emergence of multidrug-resistant enteric pathogens in MSM poses an urgent public health challenge that may require new approaches for surveillance and prevention,” the authors concluded. — DA
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PREVENTION B Y D AV I D A R TAV I A
THIS NEW TEST CAN PREDICT THE RISE OF HPV-RELATED CANCER.
OMNIPATHOLOGY HAS UNVEILED a new test that detects human papillomavirus (HPV)-related cancer in patients more accurately than other means by using advanced fluorescence microscopy and computer-aided visual analysis. A fluorescence in situ hybridization test (a.k.a. the FISH test) is used to map genetic material in a person’s cells. In early results, over 10 percent of people tested positive for the acquired genetic abnormalities—people who would have otherwise been left untreated without early detection. The FISH test works by detecting fluorescently labeled DNA probes bound to the TERC gene, a gene that speeds along virus replication and gives instructions for making one part of an enzyme called telomerase. From there, the FISH test is able to detect new genetic changes, such as expansion of that TERC gene, which can lead to cervical, anal, and oral squamous cell carcinoma in those living with HPV. Researchers say the FISH test can be used for early detection of HPV-related malignant and premalignant conditions in all patients, including those at high risk for HPV, such as bisexual women, gay and bi men, transgender people, sex workers, and those living with HIV.
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The FISH test is performed much like a vaginal Pap smear, a swab obtained with a brush by a gynecologist, physician, or other medical professional. It is now available at a nominal cost and covered by most health insurance plans. HPV is a sexually transmitted infection that affects 79 million Americans, according to the Centers for Disease Control and Prevention. Another 14 million people acquire the virus each year. In fact, HPV is so common that the CDC predicts that, without a vaccine, almost every person who is sexually active will become HPV-positive. Nine out of 10 cases of cervical cancer are caused by HPV. Unfortunately, most HPV-related conditions are slow to develop and early detection is difficult (except through cervical cancer screenings). “HPV is the most common sexually transmitted virus and without early treatment it can lead to life-threatening cancers,” says Dr. Mohammad Kamal, founder and CEO of OmniPathology. “Our new FISH screening test bridges a gap in HPV diagnosis by its ability to accurately detect the progression of HPV virus into cancer in any patient. We hope that more ob-gyns and other physicians will take advantage of this breakthrough test and screen more patients so we can prevent HPV-related cancers.”
SHUTTERSTOCK
TESTING THE WATERS
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A 12-MONTH PREP IMPLANT?
DANIEL64/PIXABAY
New research shows that a small implant in the upper arm might be the next step in long-term HIV prevention. Research presented at the International AIDS Conference in Mexico City earlier this year shows promising results for a new HIV prevention implant by the drug company Merck. According to data, the implant might be able to protect people against the virus for an entire year. The implant contains the investigational drug islatravir, the first in a new class of drugs called nucleoside reverse transcriptase translocation inhibitors, “which block movement of the enzyme responsible for cloning HIV’s RNA so that it can infect new cells,” as described by The New York Times. Similar to strategies used for birth control, this implant is a matchstick-sized plastic rod that would be inserted under the skin of the upper arm and would slowly release tiny doses of islatravir. Conducted by Merck, the trial is the first of its kind for a PrEP implant. Researchers gave 12 healthy adults an implant for 12 weeks, which contained either a 54mg or 62mg dose of islatravir. Meanwhile, four people making up a control group were given placebo implants. (14 of the 16 total participants were cisgender men.) The results showed that the implant was tolerated well in the body, and a closer inspection of the drug concentration in the participants’ bodies led researchers to believe that the implant could possibly have worked for at least another eight months for the lower-dose implant, and at least a year for the higher-dose implant. While a long-form trial would be needed to conclude whether or not a year-long implant would work, it hasn’t stopped experts from being excited about the potential. “If—and I’m emphasizing if—if it pans out in a larger trial that it delivers a level of drug that’s protective for a year, that would be a game-changer,” Dr. Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases and a top authority on HIV and AIDS, told the Times.
A PrEP implant would greatly impact the number of new HIV diagnoses, and could become a critical tool in the effort to stop the epidemic. The Centers for Disease Control and Prevention previously announced that PrEP use among at-risk men increased 500 percent between 2014 and 2017. Those numbers are expected to rise following Gilead Sciences’ new commitment to donate up to 2.4 million bottles of Truvada to the CDC by 2030 (which amounts to 200,000 per year). In addition, the pharma company’s drug Descovy has become the second FDA-approved drug that can be prescribed as PrEP. Both Descovy and Truvada are daily pills, which can make adherence difficult for some people with busy lives. More importantly, many of those with the highest risk of contracting HIV simply haven’t had access to the prevention strategy. Women in Africa are particularly
desperate for prevention methods that are easier to use than a daily oral tablet. An annual implantation would have the added advantage of not being controllable by partners, as oral meds can be. Worldwide, over 6,000 women under age 24 contract HIV each week, and in sub-Saharan Africa, girls account for 80 percent of new diagnoses among teenagers, UNAIDS reports. A PrEP implant has been in development for some time. Two years ago, the Bill & Melinda Gates Foundation teamed up with Intarcia Therapeutics to invest upwards of $140 million with the intent of developing the first once- or twiceyearly antiHIV prophylactic to help prevent the spread of HIV in sub-Saharan Africa and other countries. While HIV diagnoses have decreased steadily in the last decade, numbers remained somewhat stable between 2012 and 2016. In 2017, 38,739 people received a positive diagnosis in the U.S. —DA
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WELLNESS BY D O N A L D PA D G E T T
THE SIMPLE LIFE A FEW TIPS ON SCANDINAVIA’S SLOW-LIVING PHILOSOPHIES FOR A GOOD LIFE. to instant insurance quotes, Americans place a premium on speed. It seems only in retrospect we lament about not appreciating the time we have. Our addiction to the daily rush of life can blind us to the benefits of a slower lifestyle, but we need only look to Denmark and Sweden for a different perspective. Both countries have long cultural traditions that value the little things in life, which can help you simplify, downsize, or fight FOMO. Danes are fiercely proud of hygge, a philosophy loosely translated as taking comfort and intrinsic rejuvenation from the simple things around us. Sweden’s relaxing national mind-set, lagom, is, for lack of a better analogy, Goldilocks’s mantra of not too much, not too little, but just right. The differences between the hygge (pronounced “hoo-gah”) and lagom (“law-gum”) may seem subtle but are fairly significant. The Danish hygge is appreciating the world around us to experience a more personally rewarding life, but Swedish lagom seeks the same goal through moderation in everything from meal preparation to social planning. There are, of course, misconceptions about both. Hygge does not mean settling for what one has but instead designing our homes, physical environments, and lives so they can be sources of comfort and validation. Lagom is often confused with base minimalism rather than the elimination of unnecessary clutter to better appreciate the act of living itself. Both philosophies have escaped their original countries and are impacting everything from fashion and home decor to cooking and cocktail parties. These books will help you understand and embrace these and similar concepts in your own life:
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The Hygge Life by Gunnar Karl Gìslason and Jody Eddy is a food and lifestyle book extolling the benefits of Danish comfort food and practices. With chapters such as “Caring for Yourself” and “Easy Gatherings and Holidays,” it provides brief explanations of various hygge concepts followed by recipes (spicy baked cod) and other helpful tips (packing for a flight). Hygge Life has slower-paced solutions sure to help you overcome life’s annoyances and better appreciate the little things. (Ten Speed Press)
The Little Book of Fika: The Uplifting Daily Ritual of the Swedish Coffee Break by Lynda Balslev touches on a subject near and dear to the hearts of most Americans. The Swedes love their coffee, and perhaps the easiest entry into a slower lagom lifestyle is to take a fika, the Swedish version of the coffee break. The Swedes have taken the simple coffee break and transformed it into an art form to unwind from the stresses of life, where the true value is found within the social experience rather than in the coffee itself. Fika provides recipes, facts, and insightful trivia to transform your quick “cuppa joe” into a more relaxing and fulfilling experience. (Andrews McMeel Publishing)
The Little Book of Lagom by Jonny Jackson and Elias Larsen explores the process of finding balance in daily life. Filled with tips on how to save energy, upcycle decor, and reduce food waste, it also features simple craft projects, inspirational quotes, and sensible but delicious recipes to introduce lagom. Other helpful topics include guidance in making social commitments, planning family activities, setting life goals, and even managing money. The perfect book for helping find balance in a hectic life. (Andrews McMeel Publishing)
Live Lagom: Balanced Living the Swedish Way by Anna Brones is a more detailed look at lagom as it is practiced Sweden. How did the harsh Swedish landscape inspire lagom and the nation’s environmentalism? Where did the word lagom originate? Is there a darker side to the practice? All these questions and more are answered, and tasty recipes and useful advice dispensed. (Ten Speed Press)
Things Are What You Make of Them: Life Advice for Creatives by Adam J. Kurtz is a guidebook that focuses on finding the motivation and balance to maintain a healthy and creative mind-set. Most people are creative, Kurtz argues, even if they don’t realize it. This life-affirming book has the feel of a personal diary, with hand-lettered text and heartfelt but practical advice. The perfect handbook for the creative soul in need of a gentle kick-start. (Penguin Random House)
Falling into Joy: Eight Simple Steps to Allow Your Body to Become Your Best Friend by Conni Ponturo provides steps to stay connected to your natural state of joy, and better support and appreciate your body. Very few people are completely satisfied with their bodies, and we often focus on our flaws, which Ponturo argues can hinder our ability to find joy. From dealing with pain to learning to face your fears, she offers small but significant steps you can take to better care for yourself, revealing insights from her own struggles. (Balboa Press)
Change Happens: A Compendium of Wisdom by the sisterbrother writing duo Kathryn and Ross Petras is a collection of brief quotes and sayings that teach us to embrace change rather than fear it. Listed alphabetically by subject, Change Happens shares the wit and wisdom from a wide range of personalities (George Carlin, Maya Angelou, Stephen Hawking, David Bowie, and many others) to illustrate that change is inevitable. Learn to go with the flow, embrace change, and transform it into success. (Workman Publishing)
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The MAN With A
PLAN
U=U is redefining how people living with HIV view themselves and their bodies, and it’s become one of the biggest developments in HIV since antiretrovirals. But Bruce Richman, the man who crafted the message and helped push it to the world, says there’s still more work to be done. By David Artavia
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Bruce Richman speaks on stage during the Life Ball 2019 in Vienna, Austria
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ruce Richman, the renowned activist and founder of the Prevention Access Campaign, the organization that launched the undetectable equals untransmittable (U=U) message, is on a return flight from Greece where he joined local advocates in sharing the news that when you’re living with HIV, on meds, and undetectable, it is impossible to transmit the virus to others. For the last several years, Richman has united activists in efforts to end both the HIV epidemic and the stigma that many people living with HIV face. A growing network of health experts, professionals, teachers, siblings, spouses, parents, and friends have changed perspectives on what a positive diagnosis means. Through hard-hitting research and tenacious activism and lobbying, U=U has become a global consensus, recognized by the Centers for Disease Control and Prevention and numerous other agencies, doctors, and organizations around the world. But despite the immense impact U=U has already had on the esteem, relationships, and overall wellness of those living with HIV (and the people who love them), the rest of the country’s general perception of HIV is still outdated. This is what drives Richman’s pursuit to change hearts and minds. “U=U is my calling,” Richman, a lawyer-turned-activist, says. “It grabbed me by the gut and yanked me forward. I’ve never felt such a compulsion and clarity. I knew that undetectable equals untransmittable, but millions of people were suffering because they were not being told and people in positions of great influence to alleviate that suffering were sitting on their hands. I had no choice.”
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Bruce Richman (right) with Sam Stone at the LIFE+ Solidarity Gala prior to the Life Ball 2019 in Vienna, Austria, last June.
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Mr. Jones
COURTESY BRYAN JONES
“We have a powerful voice collectively,” says Bryan Jones about HIV-positive people. Now he’s harnessing it to share the U=U message. It’s been over 10 years since Cleveland native BRYAN JONES walked out of his prison cell, having survived stage 4 cancer chained to a prison bed. But even while he was hitting rock bottom, Jones knew this wasn’t the end. Something much larger was in store for his life. “I had come to prison to die because I didn’t want my family to take care of me in this ugly death, [but] something was in store for me,” the long-term survivor who has been living with HIV for over 30 years reflects. “When I got out, I said I was no longer going to sanction my words. I was going to speak out about HIV. I took back my power.” Jones is one of the pillars in the undetectable equals untransmittable movement, which began with a simple Facebook conversation in 2015 with its creator Bruce Richman. Jones took the U=U message to Canada with the help of numerous other activists, including the HIV community in Ottawa, and in 2018 he was present when Canada became the first country to sign on the consensus. “It’s funny to be part of history because you don’t know that when you’re in it,” he says. “Bruce made a point of being inclusive. I’ve been on stages I probably wouldn’t have got on if it weren’t for Bruce helping me. Most of the U=U ambassadors are people who don’t fit into the mold, we’re all people who are strong and opinionated, who don’t agree with the status quo of what’s been going on. I think U=U is the most important piece [of the movement] since ACT UP.” As U=U continues to shatter HIV stigma, Jones argues that if we’re truly going to serve those who need the most help, we must have a larger conversation about privilege and how it impacts care and treatment.
“I think it’s important for the CDC [Centers for Disease Control and Prevention] and our government to start funding smaller organizations and community-based organizations,” Jones says. “As an advocate, I found that many providers, ASOs [AIDS service organizations], have their own agendas because so much is required of these organizations to include what the national agenda may be—and the national agenda I think looks very different in different communities.” “The CDC and other organizations have to be careful with the branding they use,” argues Jones. “They lock people of color all under the same umbrella. Black, Latino, Pacific Islanders, and Native American people all have our [own] issues. But as it relates to funding, they have us under one umbrella. Then, there’s white people. So white people are getting their funding, but people of color, we have to fight for our funding.” Jones has founded The Dirt Advocacy Movement, whose primary goal is to reach the most vulnerable and at-risk in his community, including hosting a food pantry that serves 15,000 people a month. “There are no single-issue fights because there are no single-issue lives,” he says. “The government has to stop treating HIV like a single-issue fight, because there are more important things such as survival, feeding your kids, having shelter, things like that. People have enough to worry about.” “We as people living with HIV have an insight, we have a powerful voice collectively,” Jones concludes. “U=U is another example that people with HIV are an intricate part of this fight. People with HIV are going to take it across the finish line.”—DA HIVPLUSMAG.COM
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that goes straight to the core of U=U by encouraging us all to tap into our intrinsic value as humans, as activists, as people, rather than be defined by borders and terminologies. “I must have been a guard dog in a past life, because I tend to protect people and be loyal to a fault at times,” he explains. “I feel that loyalty to people with HIV whose lives have been clearly devalued in the field and in society. I am very committed to ensuring all of us are valued.” A Harvard Law School graduate, Richman worked in global philanthropy for two decades, developing foundations and programs around a variety of issues (including HIV). Long before U=U came
Richman (center) discussing U=U at a recent community symposium in San Francisco
COURTESY BRUCE RICHMAN
Richman was recently ranked an impressive no.15 in New York Pride’s Power 100, a prestigious list of the state’s “100 most powerful members of the LGBTQ community.” It’s always been in his nature to question injustice and stand up for others. When he was just 6 years old, Richman organized a bird club to protest the bulldozing of land for a new development that would destroy an essential bird habitat. “We didn’t win,” he admits. But it was just the start of his activism. By the time he reached his early 20s, Richman was reading a lot of Buddhist texts, specifically the mantra: “Be happy and help others be happy,” an idea JANUARY / FEBRUARY 2020
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U & Dee
CALEB ALVARADO (CONNER)
A courageous activist found her calling with U=U.
After ending an abusive 10-year relationship, DEE CONNER learned she was living with HIV. Though she went through short waves of depression and alcoholism in response, she knew deep-down that her destiny was too strong to ignore. Conner rose from the ashes not only for her then-6-year-old daughter, but also for the life she knew was in store. Two years after being diagnosed, she married again and had another healthy baby girl. These days, Conner uses her platform as host of Pozitively Dee’s Discussion podcast to address issues relating to HIV and stigma, to be a strong voice for those who need it most, and to continue spreading the message that when you are undetectable it is impossible to transmit the virus to others. “Sometime in the mid-2000s I knew that I could not [transmit] HIV to my husband,” explains Conner, who came out publicly about her status on Facebook in 2014. “We were married for about 14 years and there was a physician I had who basically let us know that I could not transmit HIV to him. Although the words ‘You can’t transmit’ weren’t said, I knew what the doctor meant.” But the full breadth of U=U didn’t crystalize for Conner until she met likeminded HIV activists like Bruce Richman at the Positive Living Conference three years ago. It was here that the U=U message became articulated in such a way that it inspired Conner to join the fight more directly. “I knew it was my purpose because I could feel it and it made me feel so good,” she says. “My advocacy and U=U have become part of my life and I’m sure there are people who don’t get what I am saying. I fall asleep thinking about what else I can do to make an impact to help others—so I don’t sleep as much as I should since my brain is always working. My love for community and people leads me to want to educate, motivate, inspire, and encourage everyone.” Another layer of Conner’s message is that, “[Community organizations] are the ones doing all the leg work in these vulnerable communities working tirelessly to get people in care who are out of care, working hard with access to care and getting individuals tested,” she explains, adding that federal agencies should “stop funding the bigger organizations as much as they do and start looking at who is really doing the work out here in all these communities.” The U=U ambassador adds, “I know many small organizations that have to almost beg for help with funding and this leaves many people left behind who need them. Without the funding, how can any of the small nonprofits get the work done that is needed? That’s what I think about resolving barriers, and Bruce Richman is doing just that by starting an ambassador’s program for U=U with a panel of all people of color.” As for the future of U=U, Conner says it is “very bright right now as we speak and will continue to keep moving forward in other countries. Now, if we can get more people in the U.S. to do more when it comes to U=U that would be one of the greatest accomplishments for The Prevention Access Campaign and U=U. We can’t say we care about those who are living with HIV and not give them this very important message. We all say, ‘If you don’t want to talk about it, then we’ll do it for you.’”—DA HIVPLUSMAG.COM
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Found in Translation VICTOR CLAROS knows the ugly realities of war. The El Salvador-born immigrant fled his country after being captured and nearly killed by guerrillas when he was 15. But the young man’s spirit never died. Despite having grown up in a religious and homophobic family, Claros found the strength to come out twice: first as gay to his then-wife, and later telling the world he’s living with HIV. What happened next prompted him to take the first step towards becoming a staunch activist. “I felt guilty, I was really afraid and ashamed,” remembers Claros, who was working as an HIV educator at a nonprofit at the time of his diagnosis. “I think, sadly, it took me being diagnosed to realize how much stigma and discrimination people living with HIV face on a daily basis. What made it even harder is the fact that way too often the stigma came from individuals, providers, and workers who were helping people with HIV.” One of Claros’s a-ha moments came when he overheard providers making negative comments about their own HIV-positive clients, an experience that made him realize he needed to fight harder for the people they were serving. So, he joined ranks with Bruce Richman and the Prevention Access Campaign to further promote undetectable equals untransmittable (U=U), a consensus that states when you are HIV-positive, undetectable, and on meds, it is impossible to transmit the virus. Claros says, “The only way I was going to help others was by becoming vocal and openly start talking about these people I was testing on a daily basis. That’s kind of the thing that pushed me to come out [positive].” Being part of the U=U movement helped Claros zone in on the specific needs Latinx people face, which prompted him to cofound Impacto LGBT (ImpactoLGBT.org), an independent group developed and led by queer Latinx individuals from the Washington, D.C., area. “One of the things we do is we accompany the client—sometimes we have to make two or three interventions—and we take them by the hand to their first appointment,” he says of the organization. “Instead of having an interpreter over the phone, we do it for them.” Impacto LGBT, which is in the process of getting its 501(c)(3) status, also advocates for more inclusive language across the medical sphere, highlighting the negative impacts of naïve and stigmatizing language and how important it is for people to understand how it is detrimental to immigrants and monolingual Spanish speakers. While it’s slowly bringing vulnerable Latinx communities together, Claros says the impacts are wide-reaching. “We’re sending people who they can identify with because they look like them, speak like them,” he says. “They come from Central America like they do. People living with HIV who’ve experienced other issues like violence. That makes a big impact.”—DA 26
DANNY NAVARRO
Victor Claros is helping other Latinx immigrants understand the U=U message.
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to his attention, he founded Inspired Philanthropy Group, where he worked on initiatives for social change with everyone from Ellen DeGeneres to Archbishop Desmond Tutu, as well as brands like Sephora and Banana Republic. Still, his personal climb towards clarity wasn’t always easy. After being diagnosed with HIV in 2003, Richman spiraled into a cyclone of fear and shame, afraid of transmitting HIV to those he loved. Like many others, he became isolated and says, “[I] didn’t allow myself to love.” “I was depressed, suicidal at times, because I’d really internalized the stigma and felt toxic, dangerous,” he explained. However, in 2012, Richman discovered the scientific fact that when you are on treatment and your viral load is undetectable, it is impossible for you to transmit the virus to others. That’s when he “started to see the possibility of love and real intimacy in my life without fear. It was like a new world.” But the realization turned into outrage when Richman realized that not only were health professionals and the HIV community failing to discuss this fact, but that millions of people living with HIV were not well-connected enough to the medical field to even know it. “I was being told I wasn’t infectious. They were being told they were infectious. Something wasn’t right,” Richman says. “I started collecting research and talked to clinicians, HIV-positive leaders, heads of medical associations, [and] journalists for input and found the general consensus was that U=U was true and accepted by many in the highest levels. People were so open with me about what was essentially a massive human rights abuse, and many in the field were participants or bystanders.” He adds, “I learned that some doctors felt it was okay to talk about U=U on an individual level, but
there was a great fear that if the information got out to the general public then some people with HIV would stop using condoms, which would contribute to the already rising STI rates. And some people with HIV wouldn’t understand that they’d need to take their medications as prescribed to stay undetectable. Rather than educate about STIs and how to stay undetectable, it seemed like it was generally OK to withhold life-changing information from people with HIV.” Richman also found out that doctors who did know U=U were only telling patients who they deemed “responsible.” That means that decisions were made through the lens of racism, classism, sexism, and all the other kinds of prejudice. “People already marginalized by the system were being further marginalized,” he says. “It is a human rights issue on a massive scale. I couldn’t see that and not do anything.” In 2015, Richman formed a founding task force for PAC to help get the U=U campaign off the ground, today it includes many notables such as Housing Works founder and CEO Charles King, National Black Justice Coalition’s Venton C. Jones Jr., chief medical officer of the San Francisco AIDS Foundation Dr. Robert Grant, and HIV activists JD Davids, Carrie Foote, Peter Staley, Sean Strub, and Kamaria Laffrey. Richman also reached out to Dr. Pietro Vernazza, the author of the Swiss Statement, a proclamation published in 2008 that stated people living with HIV on effective treatment cannot sexually transmit the virus. PAC also worked with respected researchers to create a consensus statement clearing up mixed messages and to confirm U=U was true. “We created an advocacy video of people with HIV explaining why U=U is important to all of
Richman with famed performer Conchita Wurst
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us,” Richman remembers. “Our idea was to use that scientific statement, the video, and our voices to change the narrative about our bodies. We would engage influential people and organizations to join us in confirming what we knew to be true.” The campaign launched in July 2016. Within a few weeks, New York City signed on as the first city, public health department, and group of public health officials in the world to officially recognize the truth in the U=U statement. It was the birth of a movement. “During the first few years, I was a machine,” ref lects Richman. “The movement was much bigger than me, and I felt that my personal life didn’t matter. I was intensely driven because I knew how people with HIV were suffering, and then I’d see how U=U was changing lives. And I was full of outrage that people in influence were doing nothing about it, especially in the U.S.” Something shifted at the 22nd International AIDS Conference in Amsterdam in 2018. “U=U was everywhere,” he says. “It was truly global. When Dr. Alison Rodger [of the PARTNER studies] said from the stage, ‘The risk is zero’ and ‘The time for excuses is over,’ and acknowledging our campaign, I felt I could relax more. I felt tremendous gratitude.” It’s clear that U=U is a torch for the HIV community as it steps into the future. It’s also a reminder of where we come from. As Richman puts it, “Systems need to be challenged, or else they become monsters that thrive on keeping things the way they are.” “We can say U=U now because of activism dating back to the ’80s. We also can’t get complacent now that we know U=U. We must continue to hold accountable not only our government, but also the community organizations and people who are meant to represent us and have our backs yet are still not sharing the message.” Richman adds, “Before U=U, so many of us never imagined being able to love, to have sex or to conceive children without fear. That fear was present in the most intimate moments of our lives. After U=U, people are having social, sexual, and reproductive lives they never thought would be possible.” For example, “There is a well-known activist in the U.S. who hadn’t had sex in 15 years. Now she’s in a relationship with a woman,” Richman says. “Another activist had attempted suicide after diagnosis and felt his semen was toxic. Now, he’s 28
married to an HIV-negative man. A woman living with HIV in Canada had been afraid a condom would break every time she and her husband had sex for over 20 years. The day she learned U=U, she went home and had sex without a condom for the first time. I’ve met people who point to their babies and say they’re because of U=U, or show me their engagement rings.” A major piece of the movement is sparking a la rger d ia log ue b et we en c om mu n it y organizations and federal agencies, like the CDC, which is often criticized by HIV activists for not including people of color and transgender representatives on initiatives that impact these communities most. However, despite numerous protests and demonstrations, which Richman admits are sometimes necessary, ultimately we need to get to a place where we change the world together. “I think if we point fingers at the feds, we also need to be looking at the nonprofit and activist role,” he says. “Are we doing enough to address the barriers to care? There are powerful people and organizations in the U.S. who have done essentially nothing to share the U=U message. They talk about stigma being the greatest barrier
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Truth Teller
COURTESY ALLEEN KING-CARTER
This Louisiana-born activist had enough of the official HIV narrative, so she decided to change it. ALLEEN KING-CARTER has used her life to spark change and dialogue about HIV. She is the founder and CEO of Living in 3-D, an HIV education organization that produces anti-stigma initiatives across communities. A state-certified HIV counseling, testing, and peer facilitator, King-Carter began her career at the Philadelphia Center in Shreveport, La. But while her life has been widely centered on activism, she’s the first to tell you that finding her voice took effort. Even while King-Carter was working in the HIV sphere, she tells Plus that she was still closeted about her status. It wasn’t until she attended the DREAM Symposium Retreat several years ago that a fellow advocate helped her realize a larger calling. “During a breakout session, my shero Monica Johnson said, ‘I don’t have time or T cells to stress about how someone else feels about my HIV status,’” King-Carter remembers. “She was the first openly positive woman I ever met. She was open in her truth and encouraging, confident, no filter. She helps so many, including me. I thought, If she can help people living with HIV by just being bold and telling her story, I want to be like her.” The next year, King-Carter had a huge HIV coming out party to celebrate her birthday. Little did she know that soon she would meet a man named Bruce Richman who would alter the course of her activism. While attending the “HIV Is Not a Crime” conference, Richman posed this question to King-Carter and other attendees: “Did you know that if you become undetectable while taking your meds, science says you can’t transmit HIV?” That one sentenced struck a chord in King-Carter. “[Richman] told me where to find the research, and so I did,” she says. “I became angry. Why hasn’t anyone told me this before now? He asked after knowing the science, would I be willing to speak out on film and support the movement. So, I pulled out my smartphone [and] ranted about the B.S. of it all. Then I joined the founding steering committee for U=U. I thought, If they can’t tell the truth, we’ll tell it for you.” Now a U=U ambassador, King-Carter has pushed the movement to new heights, leading with the message that the quicker a person starts medication, the sooner they can become undetectable. She’s also been a staunch critic of the Centers for Disease Control and Prevention for failing to do proper outreach to those most in need. “The CDC and other federal agencies did PLHIV and all humankind a disservice by not supporting and promoting the true science of U=U,” she says of the years prior to October 2017, when the agency endorsed the consensus. “Now, they have finally embraced U=U, but after years of not telling the truth. Many—on their watch—did not obtain access to care because who in their right mind would take meds, attend appointments, and take care of their health, when eventually it didn’t matter because they could always down the line harm the people they loved? Although it is untrue, that’s the myth their unwillingness to tell the truth promoted.” Looking to the future, King-Carter knows that things are changing swiftly. This time, poz folks are leading the conversation. “U=U is for the people by the people,” she says. “People living with and affected by HIV/AIDS said that since society won’t tell the truth about our health, we will! I believe the future of U=U will reflect all people, be in all languages, in all regions of the world, told by people living with HIV.”—DA HIVPLUSMAG.COM
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Author and activist Maria Meji (below) is a U=U ambassador
to ending the epidemic and aren’t using U=U to dismantle it. They talk about having the tools to end the epidemic and mention PrEP, but forget to mention U=U, which [renowned HIV researcher] Dr. Fauci calls, ‘The foundation of being able to end the epidemic.’” “Roughly 500,000 people with HIV are not on treatment and in care,” Richman adds. “Most are slowly declining in health and progressing towards an AIDS diagnosis because they are not getting the care they need. And there are also several hundred thousand people with HIV who are suffering from social rejection, isolation, depression, suicide, intimate partner violence, prosecution, and murder because they and others think they’re infectious. The fact that PrEP continues to be the priority of too many of our leading HIV organizations shows us who is valued and who is not. I’m not knocking PrEP. We need PrEP. It is an extraordinary HIV prevention option, [but] access to PrEP should not be a higher priority than saving the lives of people with HIV.” Moving into 2020, the future is certainly bright for the U=U movement. But in order to fully grasp its potential, Richman says we need new minds and innovators at the table. “We talk about disruptive innovation, but we’re going back to the same well that has kept us where we are,” he says. “We need the greatest minds to come together to work on the U.S. HIV response like it’s a high-level consulting project. We need brains from other industries like the high-tech field to attack this issue from multiple perspectives. There are many entrepreneurial and brilliant leaders emerging in the U.S. field who could make an impact on a national scale if they were in positions of influence.” While he cares most about saving lives of those already living with HIV, Richman knows it’s also critical to share the broader public health impact of U=U. In other words, broadcasting that getting all HIV-positive people on treatment and to undetectable viral loads is the best way to end the epidemic. “It’s important that advocates prioritize the U=U public health argument when asking for increased funding for treatment, care, and services; not just for the wellbeing of people with HIV but also to prevent new transmissions. That prevention argument will align with many policymaker’s interest in HIV prevention. The concept is: if you 30
want to end the epidemic, invest in the wellbeing of people with HIV. Ensuring the people with HIV have the treatment, care, and services we need not only keeps us healthy, but it’s the most effective way to stop new transmissions.” The campaign is also building its global communications division to better serve the nearly 1,000 official U=U partners in almost 100 countries that are seeking resources to get the message out in clinical, public health, and policy networks. In late 2020, it plans to launch a U=U grantmaking fund. After all, “it’s important to cultivate the innovators,” Richman says. “Look at the people and organizations who got behind U=U early on when most folks were either afraid to say it or were fighting us. These are the bold innovators and early adopters who challenged business as usual. They risked their personal and professional reputations—some risked their lives—to stand with the truth. These are the kinds of people we need to be leading the U.S. and global HIV response. We need to look at the ones who fought [against] U=U and are still in positions of power. These are not the people who should be in power. They should never be allowed to make decisions about our HIV-positive bodies again.”
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Meet More U=U Ambassadors
These activists have answered the call to share the undetectable equals untransmittable message. The Prevention Access Campaign is the organizational force behind the consensus that undetectable equals untransmittable (U=U). Leading activists, growing voices, and renowned healthcare professionals have joined PAC in educating and empowering HIV communities and health care providers. The U=U campaign’s current ambassadors (some profiled in this issue and others listed below) have gone through extensive training in the science that proves those who have undetectable viral loads cannot transmit HIV, as well as in strategies for communicating and advocating around that stigma-busting message. To learn more or to connect with the ambassadors for community events, speaking engagements, and more, visit PreventionAccess.org/ambassadors. Arianna Lint, Fort Lauderdale, Fla. An outspoken trans activist living with HIV, Lint is the executive director of Arianna’s Center, a South Florida community-based organization providing advocacy, education, and training; case management; and linkage to care for trans people. Originally from Lima, Peru, she is also part of the National Board of PositivelyTrans and The Well Project. Anselmo Fonseca, San Juan, Puerto Rico A long-term survivor diagnosed nearly 30 years ago, Fonseca is a gay Latino whose work was recognized by the Obama administration as one of the 350 Most Influential National Advocates during the launch of the National HIV/AIDS Strategic Plan 2010. With over 20 years in the field, Fonseca is also a Ryan White Part B Community co-chair where he mentors poz representatives. He is also the cofounder of the Coalition Cero HIV PR. Deondre Moore, Houston, Texas Since being diagnosed at 19 years old, Moore has dedicated his life to help his community achieve a vital education on HIV and prevention. He has also served as ambassador for Greater Than AIDS as well as the SpeakOut advisory committee. Recently, he became the first out HIV-positive person in Texas to announce his candidacy for state representative.
Luis Mares, New York City As director of community mobilization programs at the Latino Commission on AIDS, Mares plans, develops, and implements national campaigns for National Latino AIDS Awareness Day and National Hispanic Hepatitis Awareness Day. He also plays a vital role for the New York State Department of Health AIDS Institute, the AIDS United Community Mobilization Subcommittee, and the NYC AIDS World Day Event Planning Committee, among many others. Maria Mejia, Fort Lauderdale, Fla. The current co-chair of the women and minorities outreach for Dab the AIDS BEAR project, Mejia also coauthored the book From a Warrior’s Passion and Pain, a real-life account of her 30-plus year battle with HIV. She sits on the board of directors for CANN and Arianna’s Center, and is currently representing the state of Florida as an advisor and consultant for Gilead’s Compass Initiative. Roscoe Boyd, New York City, N.Y. As executive vice president of external relations at SLAY Media House, a leading online entertainment destination for queer and trans people of color, Boyd is an expert in leadership, sales, public speaking, and education. A Detroit native, he has worked with various organizations like Callen-Lorde Community Health Center, the HIV Stops With Me Campaign, and New York State Department of Health. Wanona “Nunu” Thomas, Atlanta, Ga. Thomas has used her HIV diagnosis to inspire people across the country through Live In Your Truth, a Milwaukee-based nonprofit she founded that focuses on empowering and inspiring individuals in recovery from diagnoses of life-changing conditions. A writer for the blog A Girl Like Me with The Well Project, Thomas is also an ambassador for Youth Across Borders and is an HIV expert consultant for Merck. Yonce Jones, Bronx, New York A vocal trans advocate for nearly 15 years, Jones is part of Harlem United and AIDS United. She began her HIV activism as a teenager while working a summer job in the basement of a community center, and continues her advocacy today. “I am not a disease, I am simply Yonce from the Bronx.” —DA HIVPLUSMAG.COM
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AFRICAN-AMERICAN WOMEN WITH HIV ARE OFTEN OVERLOOKED AND UNDER-SUPPORTED. BY THURKA SANGARAMOORTHY The face of HIV in the United States has long been white gay men, even though the epidemic has had a devastating and disproportionate impact on AfricanAmerican communities. This is especially true among women; 60 percent of newly diagnosed cases of HIV in women in 2017 were African-American. Yet, African-American women’s voices are notoriously absent from the national discourse on HIV. Largely invisible to a fractured health care system, these women are often breadwinners and matriarchs whose families count on them for support and care. Treatments to help people who are HIV-positive manage their illness and survive into older age have improved greatly, yet the unique health needs of African-American women living and aging with HIV—estimated at about 140,000—are often ignored. While many are actively taking medication and receiving care, some do not know their HIV status. Aft er diagnosis, many have diffi culties managing their HIV, which can contribute to their other health challenges. I have been working on collecting oral histories from many older HIV-positive women in the Washington, D.C., area, where I live and research. It is my hope that by focusing on the voices of AfricanAmerican women themselves, we as a country are able to better understand the profound impact that HIV has had onBlack life. 32
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I was so afraid of going to a dark place, from my childhood. I know my triggers. Many believe the HIV epidemic in the United States is nearing an end, in part because increased funding, targeted prevention efforts, and better treatment have resulted in drastic reductions in new HIV-positive cases. Even President Trump, in his recent State of the Union address, discussed his goal of ending HIV by 2030. I am an HIV researcher, and I can say this is totally unrealistic, especially for African-Americans. Despite comprising only 12 percent of the overall U.S. population, African-Americans represent 43 percent of all persons with newly diagnosed HIV and 42 percent of all people living with HIV. AfricanAmericans living with HIV are nearly 10 times more likely to be diagnosed with AIDS (now often called advance or late-stage HIV) and over six times more likely to die of complications of advanced HIV than their white counterparts. African-Americans are also at a higher risk for other health conditions, which can make managing HIV infection more difficult. For instance, AfricanAmericans are twice as likely to die from heart disease and 50 percent more likely to have high blood pressure than whites. In Washington, D.C., a place filled with public health experts and policymakers, the HIV prevalence rate is the highest in the nation, exceeding the World Health Organization’s definition of a generalized epidemic. African-Americans represent a staggering 75 percent of all HIV cases in D.C. HIV in Washington, D.C. is a regional epidemic, and crosses the jurisdictional border into Prince George’s County, Maryland. The sprawling suburbs of Prince George’s County are well known for their ranking as one of the wealthiest African-American-majority counties in the nation, but with HIV rates that are four to 10 times higher than those of white adults. The high rates of HIV in Washington D.C. and Prince George’s County reflect a growing public health crisis in the United States, where the disproportionate burden of HIV is increasingly concentrated in the U.S. South. Southern states, where 55 percent of African34
Americans live, have the highest rates of new HIVpositive diagnoses, the highest percentage of people living with HIV, and the lowest rates of survival for those who are HIV-positive. Government investment in the domestic response to HIV tops more than $26 billion per year, yet these health inequities in HIV for AfricanAmericans continue to persist. These inequities are due in part to abstinence-only funding to schools with large minority populations and HIV-specific criminal laws, which undermine the health and well-being of African-Americans and perpetuate systems of inequity. Systemic racism in resource distribution, such as concentrated poverty and health care and funding disparities is also a significant driver of the epidemic within AfricanAmerican communities. Since the beginning of the epidemic in the 1980s, African-American women have carried a large burden of HIV, and more than 60,000 lost their lives. But not everyone died. My project of personal narratives of these women suggest that they live with multiple uncertainties brought on by HIV. Many worry about how their health, disability, and eventual death will impact their roles as mothers, grandmothers, daughters, sisters and wives.
LIVES OF SUFFERING, STRENGTH AND SURVIVAL
Shawnte’ Spriggs’s story is typical of many AfricanAmerican women living with HIV whom I spoke to. Many suffered trauma and abuse as children. Like everyone, however, she has her own unique story. “My family stories are not pretty,” said Spriggs, 45, who grew up in northeast Washington, D.C., in a neighborhood with open-air drug markets, crime, and gang violence. “My mother had a very bad temper. If she had a bad day, or someone teed her off, or one of her boyfriends did something to her, I was abused pretty bad.” Her father was around only intermittently. She later learned the reason for his disappearances: He was often in prison.
TESS (UNSPLASH)
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Looking for love and craving protection from her mother, she turned to her godbrother, a caring guardian whom she later married. Three months into their marriage, beatings began. The first was in the middle of the night. She woke suddenly. Her ex-husband was still asleep but sat up as if he were awake and punched her in the face. They both laughed about it in the morning, as if it had been an accident.
THE ABUSE CONTINUED
Her initial reaction was that she was going to die. She researched to learn more about HIV and began to realize that many people in her life probably died of it even though it was being labeled as something else in the community. She was terrified, especially because she feared returning to the pain and trauma from her past. “I was so afraid of going to a dark place, from my childhood. I know my triggers,” Spriggs said. She took action, signing herself up for both inpatient and outpatient mental health care, which helped her with her healing process. She attended HIV support groups, where she was the only woman among gay men. Spriggs counts herself fortunate. She knows that many others have fewer resources, more responsibilities, and a lack of accessible and culturally appropriate care.
Thurka Sangaramoorthy is an associate professor of anthropology at the University of Maryland. This piece was previously printed in The Conversation (TheConversation.com).
PHOTO CREDIT
Eventually Spriggs escaped the marriage. She moved to another state and created a rewarding life. She even found love again, and remarried. She changed careers. She also became an evangelist, traveling for religious conferences frequently. In 2010, Spriggs accepted an invitation to speak at a women’s conference in Lynchburg, Va. The conference offered health screenings. Some of the women invited her to take an HIV test with them. Sure, why not? she thought, wanting to set an example for the young women attending.
THE LAST THING SHE EXPECTED WAS TO TEST POSITIVE
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WHAT ABOUT US? Stories of African-American women aging with HIV: “My life wasn’t what I hoped it to be.” BY THURKA SANGARAMOORTHY PHOTOGRAPHY BY AAMIR KHULLER
ophia Harrison, 51, is a single mother of two, with an extended family to support. She has lived with epilepsy her entire life, she suffers from hypertension, and she is a breast cancer survivor. Yet more challenging than any of these was learning she was HIV-positive. “I was crying for at least six months,” she said of learning she was HIV-positive 10 years ago. “It hurt me real bad.” Harrison’s story is far from unusual. She is one of about 140,000 African-American women living and aging with HIV. While she is grateful to be alive, she faces multiple health challenges in addition to HIV, like hypertension, diabetes, and breast cancer, that disproportionately plague African-American women. And they often struggle to take care of themselves and their families because of limited resources. In working with older African-American women who are HIVpositive, I learned about their individual stories. VICTIMS OF HIV’S EARLY DAYS
In the 1980s and 1990s, an HIV diagnosis often equated to a death sentence, with many given weeks or months to live. Much of the public health focus in the early years was on white gay men in urban centers. Early stories of women living with HIV focused on sex workers and injection drug users, those who were highly stigmatized by society for behaviors it deemed immoral. Conversations about women with HIV were silenced and shamed, causing delays in testing and treatment for women. HIV research specifically excluded women, perpetuating the myth that women were not at risk for HIV. Even today, women represent less than a quarter of clinical trial participants for HIV medications, and prevention strategies for women lag far behind those for men. As a result, African-American women living in places like Washington, D.C. and Maryland were not tested routinely or well informed about HIV until they fell seriously ill, I found as part of my research. Many who were in their 20s and 30s when
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they were first diagnosed were in a state of shock and denial, certain that they would not live to see their next birthday. My research, which has involved ethnographic and oral history interviews with 45 women over five years, reveals that HIV for African-American women has never been a single issue, separate from histories of addiction, trauma, and poverty. For some, an HIV diagnosis signaled death and an end to the future they had imagined for themselves. While for others, diagnosis was a form of redemption and a second chance at life. Regardless of how HIV altered their lives, these women, now in their 50s and 60s, suffer from debilitating health problems, a result of living a lifetime with HIV and the toxic effects of long-term medication use. Many rely on fragmented public safety nets and will need even more health and disability benefits as they age. While public health officials and politicians are focused on ending HIV in the next decade, very few resources are available to those already living and aging with HIV. Amid the uncertainty that life with HIV brings, African-American women, like those featured here, live with hope and strength. “I’m a survivor,” Harrison told me.
Sophia Harrison (above), also a breast cancer survivor, has been living with HIV for over a decade
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Marcella Wright, who’s been living with HIV since the early ‘90s, has also overcome abuse and addiction
ELOISE AMBURSLEY/UNSPLASH (TRIO)
I DIDN’T CARE WHAT HAPPENED TO ME
Marcella Wright was born in Washington, D.C., in 1943. She has suffered from debilitating asthma for as long as she can remember. When she was growing up, her neighbors grew wild cannabis and treated her with the vapor. She eventually learned to smoke cannabis to ease the pain of her asthma. She later added alcohol to the mix. After graduating from high school, she found out that her boyfriend of two years was going to marry an older woman. “After that I didn’t give a damn. I didn’t care what happened to me.” She became pregnant by a man who would eventually end up in jail, and she gave birth in a home for unwed mothers. She recalled: “I had the baby all alone in the cold. It seemed like one of the most horrifying moments of my life. And I have had guns to my head, I have been choked, and all that. But this particular time, having this baby. All alone.” Wright was forced to marry her son’s father, and the relationship became abusive. She turned to crack cocaine to cope and became hooked. “You wanted to do the right thing because you’re a mom and you got this damn job you have to get to,” she said. “But you didn’t have any control. You wanted it all the damn time.” She lost her job and became homeless. She began to get sick. Even though she knew something was seriously wrong, she was either too high or too scared to go the hospital. She decided to get clean in 1989 for her children. A few years later, she found out that she had HIV. She was recruited into one of the earliest treatment programs for people living with HIV. She was the only woman when she enrolled. Most of the other participants who began the program with her, mainly gay men, have since died. Wright’s experience was transformative. “If it wasn’t for them I may not have accepted this situation,” she stated. “They just did everything that I expected everyone to do all my life—take care of me.” She also credits her faith in God for getting her here. “He allowed me to know that this is just a journey,” she stated. “That is what keeps me.”
Can We Change The Numbers?
Black females remain the women most affected by HIV, but the latest data shows things may be shifting.
Unfortunately, Black and brown women continue to be the hardest hit female demographic in terms of new HIV diagnoses. Earlier this year, the Centers for Diseases Control and Prevention’s Morbidity and Mortality Weekly Report revealed that Black women accounted for 60 percent of all new HIV diagnoses in women in the United States—despite the fact that they only make up 13 percent of the population. However, not all of the newly released data was discouraging: between 2010 and 2016, new HIV diagnoses among women and adolescent girls fell overall. This decline was largely driven by a 21 percent decline in new HIV cases among Black women and adolescent girls. New diagnoses among white women and adolescent girls remained roughly the same during this period. Just as with Black gay men of color, the higher rates among Black women are reflective of the impact of broader socio-economic disparities, and the compounding impact of dating within the African-American community, which is itself disproportionately impacted by HIV. “Reducing racial disparities among women is needed to achieve broader HIV control goals,” investigators concluded in the report. “Addressing social and structural determinants of health and applying tailored strategies to reduce HIV incidence in Black women and their partners are important elements to achieving health equity.” HIVPLUSMAG.COM
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Toya Tolson, living with HIV for nearly 15 years, has overcome grief, addiction, and homelessness
“REAL-LIFE STORIES OF PAIN”
“I have a lot of stories,” said Toya Tolson. “They are real-life stories of pain.” She became pregnant when she was in 10th grade. Her son was born prematurely, and he died right after his birth. She remembers holding him. “I have his birth and his death certificates,” she said between tears. She coped by turning to drugs, mainly marijuana and love boat, a street drug made of marijuana dipped in a toxic chemical like formaldehyde, PCP, or both. It can cause severe brain damage and even death. She didn’t care. “I was getting high,” she said. “I was selling. I was my best customer.” Eventually she became homeless. Alone on the streets, she became numb to feelings. “I put myself in a lot of dangerous situations,” she said. “It was just about survival.” She was involved with a lot of strangers. “They weren’t relationships. They were sexual activities when I was out in the streets. I was in a confused state of mind. Where I probably encountered AIDS.” What she really wanted was affection and attention, things that she felt like were always missing from her life. “I wanted to be loved. I wanted just to be around and thought they were my friends. But they wasn’t. They was using me. I didn’t comprehend until it was too late.” Things hit bottom when she fell into a coma. No one expected her to survive. She spent months in rehabilitation, until she was sent home in 2005. That’s when she found out that she had HIV. Today, she is thankful for being alive. “Every morning I wake up, I’m more than a moment. It’s a gratefulness. I’m still here. I have a second, an hour, another day.”
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Deborah Dyson, a childhood sexual abuse survivor, has also been living with HIV for 30 years
I THOUGHT I’D RATHER DIE
“My life wasn’t what I hoped it to be,” Deborah Dyson said. Both of Dyson’s parents were alcoholics. Raised by her godmother, her life took a turn for the worse when she moved back in with her biological family. A relative began to rape her when she was 12. Out of fear, she didn’t tell anyone. She turned to alcohol and drugs, both readily available in her home. Things soon spun out of control. She dropped out of high school. A sister introduced her to crack. She remembers the first time she smoked it. “That’s when you first figure out how crack works,” she recalled. “Because drinking was a thing I knew how to do, so I just needed to add the drinking to the crack to make that high. When you first drink, you get that good little buzz, so you’re always trying to find
it again. That’s what I was doing, trying to find that feeling again.” Soon, she turned to heroin. She used for 17 years, often out on the street. Early in 1989, she became increasingly sick. Her friends urged her to get tested for HIV. “I didn’t know anything about HIV,” she said. “I had friends dying of it but I didn’t know anything. I started taking AZT. I hated it. I got sick of it. I got mad. One day I took the whole bottle of pills and threw them up on the roof. I thought I’d rather die than take this.” A friend recommended that she switch doctors and clinics, and this change made a huge difference. “They showed me that I could live. They gave me good medical treatment,” she said. Being around others with HIV and becoming a grandmother has also helped Dyson be less fearful of death and HIV. “I don’t let anything scare me because I know at the end of the day God has my back,” she said. “I’m not perfect, but I don’t allow a disease to tell me what I can and cannot do.
Thurka Sangaramoorthy is an associate professor of anthropology at the University of Maryland. This piece was previously printed in The Conversation (TheConversation.com).
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Being HIV-positive doesn’t need to get in the way of your dreams, including building a family. By T y l e r C u r ry
Whether it’s the apps on your phone, the wardrobe in your closet, or the language you use, everything needs to be upgraded from time to time. The more comfortable we get with certain words and phrases, the more we risk losing the potential for new ones that more accurately reflect what we mean. This has never been truer than when it comes to the phrase: “HIV is no longer a death sentence.” As an HIV activist, I hear the phrase echoed almost daily. While it is most definitely true, it falls incredibly short in describing how far we have come with HIV treatment. And frankly, it does an injustice to those living with HIV. My husband and I, both living with HIV, recently started the process to adopt a child. (Gulp!) We were referred to an adoption agency, which another same-sex couple recommended, and were ecstatic to have an initial conversation with the adoption coordinator. It was a local agency that works with other LGBTQ couples, so we were confident about choosing it to represent us. Unfortunately, it didn’t quite go the way we had hoped. We were off to a great start at first. My husband and I are great candidates, and the agency was prepping us for the next step. We wanted to be upfront about our status in case there were any questions we could clear up ahead of time, as a medical examination is part of the process. Being healthy and fit, we foresaw no issues arising from the pending medical evaluations. All the same, we came out to the coordinator about living with HIV. Then came the pregnant pause (pun intended). “Well, I know HIV is no longer a death sentence,” she finally said. As someone who is used to navigating people’s limited knowledge, I knew then our journey with this agency had come to an end. After taking a day to determine how they were going to handle our HIV status, they determined they would require us to list our status in our adoption profile. For those who might not know much about adoption, this information should only go in the home study—if at all. As part of the process, your doctor must sign off on your ability to parent the child through adulthood. Even though there are multiple chronic illnesses many adoptive parents might have, HIV was the one they required to be listed. Since they believed this would deter birth mothers from choosing us, the agency offered us provisional acceptance so we wouldn’t “waste our money,” in case we didn’t get paired. Luckily for us, I knew better. I know that living with HIV will not keep us from adopting and it wouldn’t keep us from being great parents, nor will it prevent us from shepherding our kid(s) through the challenges of childhood. It also shouldn’t keep us from having a great experience while building our forever family. Indeed, it didn’t take long for us to locate an agency that didn’t even flinch at our statuses. We are happy to report that we have selected an agency and are on our way to becoming parents. Still the experience had me thinking about when I hear, “HIV is no longer a death sentence.” The line seems eons away from where we’ve come. To say it’s no longer a death sentence is to say its only one step away from it. Let’s be clear. HIV is now a manageable chronic condition. With treatment, we can live nearly as long and be as healthy as anyone else. And yet, we have not upgraded our language and adopted a new phrase that more accurately describes what life with HIV means in 2019. So, I humbly propose that we retire the aforementioned phrase and adopt this new one instead: “Life with HIV is now limitless.” As I start to shop for baby clothes and imagine the life I’m still so excited to live, this has never felt more accurate. HIV is a chronic illness, and although the barriers around this disease may be unique, we must shout from the rooftops that you do not have to sacrifice one damn thing because of your status. And if someone disagrees, the only thing you have to limit is your relationship with them. My future is limitless, and so is the future of most people living with HIV, as long as we don’t allow anyone to tell us otherwise.
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B AC K TA L K B Y D AV I D A R TAV I A
TOM HENNES, THE MAN FAMOUS FOR REDESIGNING THE EMPIRE STATE BUILDING’S OBSERVATORY, IS ALSO LIVING WITH HIV.
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Thinc Design founder Tom Hennes (above and right), speaking at the reveal of the Empire State Building’s new “Observatory Experience” he designed
JORGE MARTINEZ
STRONG BY DESIGN
designing for the theater and being a photographer, Tom Hennes found a true calling in his firm Thinc Design, a highly respected agency that creates exhibitions and attractions across a diverse portfolio. Hennes has used his skills and intuitive judgment to build some of the world’s most high profile projects—like the Sustainability Pavilion at the upcoming Expo 2020 in Dubai, the 9/11 Memorial & Museum, the Steinhart Aquarium at the California Academy of Sciences, and much more. Last fall, Hennes wrapped the second phase of a spectacular reimagining of the Empire State Building’s Observatory. Immersive exhibits merge the building’s unique history with its evolving role in popular culture. There’s even a section where visitors can plunge themselves into an epic scene with King Kong himself. Diving deep into history is a driving force behind Hennes’s creative process, and truth be told, not much has changed since he began as a young student in Berlin where he spent six months walking the streets and taking pictures of people to “formulate a portrait of individuals there that are just searching for an essence.” Like many starving artists, his move to New York City happened on a whim when a friend of a friend was directing a series of new plays at a festival and asked if Hennes would come design the sets. It was the beginning of an incredible career, but the moment also represented the height of a bubbling queer scene that
ORIGINALLY SPLIT BETWEEN
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NOAM GALAI/GETTY IMAGES FOR EMPIRE STATE REALTY TRUST, INC.
would ultimately crash as the dawn of the AIDS crisis edged closer. It was during this time that Hennes met his late partner of 13 years, Kevin Hassler, a classical musician and agent at Columbia Artists Management. The bond between the young intellectuals was unbreakable. “He was diagnosed first,” Hennes shares. “We lived in the late ’70s and early ’80s in New York and [AIDS] started to happen and our friends started to get sick. Kevin told me one day he didn’t feel right and he was going to get tested. I said to him, ‘Why get tested? There’s nothing we can do about it. Why start dying before we have to?’” Still, Hassler went forward and discovered his T cells hovered near 200. Hennes tested soon after and learned he too was HIV-positive, though his T cells were still in the 800s. “I was relatively on solid ground and he was relatively on shaky ground,” Hennes recalls. Living with HIV was never a solitary experience for the couple. Not only did they have each other, but they had the broader queer community. “I was part of a group of people who had a very uncertain future,” he remembers of those days. “The fact that my mate had a much less certain future made me feel pretty fortunate, and as he went onto AZT at the beginning and went through all the difficulties of overdosing—nobody knew how to use it—he managed to live.” By the time Hessler died in 1993, he was considered a long-term survivor. (Although Hennes admits that Hessler always disliked that phrase, saying, “He felt like he hadn’t ‘survived’ yet.”) During these years, HIV stigma was rampant and ignorance was perpetuated by a lack of accurate information on the virus. As a result, employers and business owners often fired workers when they learned they were HIV-positive. Yet in that same environment, Hennes says he gained a powerful lesson about the human spirit from one of music’s most prominent figures. When Hassler decided to quit his job in the early ’90s, Ronald Wilford, who was head of Columbia Artists Management and considered the most powerful man in classical music at the time, instead granted Hassler a disability policy and put him on medical leave so he could keep his salary.
THE DAY I GOT WORD THAT I WAS UNDETECTABLE, I WAS STUNNED… IT WAS THE FIRST TIME I HAD A VISION OF MYSELF AS AN OLD MAN LOOKING BACK AT THIS YOUNGER MAN I HAD LOST. “They were acknowledging Kevin’s value,” Hennes says. “That was forming in my whole view that there are people who behave with immense humanity.” In the years before Hassler’s death, he and Hennes were active in organizing Music For Life at Carnegie Hall, a series of free concerts for Gay Men’s Health Crisis. The event raised about a million dollars a year, and the musicians happily donated their services—a testament to the level of commitment in ending the epidemic.
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years he’s participated in the Braking AIDS Ride, a three-day 300-mile bike ride from Cooperstown, N.Y., to Manhattan that has raised over $2 million for Housing Works, an organization that houses and provides services to thousands of New Yorkers living with or at risk of HIV. This year, Hennes raised $55,000 for the organization. Since reuniting with the activist community in a big way, he acknowledges the years of internalized stigma that have been pushed to the wayside. “I feel [it’s] a privilege to talk about [HIV history],” he says of the transformative revelation behind Braking AIDS. “The dirty little secret is that, for a while, I shunned activism. After Kevin died, I couldn’t bring myself to do much of anything. I donated money. I was an armchair activist. I just couldn’t mobilize myself. I got in Braking AIDS for the cycling, not for the cause. I thought, I love Housing Works, great. And the first time I did it, it reawakened something in a way that was stunning for me and joyous.” He continues, “The fact that my HIV-positive status, that part of my identity can be a positive and not a negative, it can be something that is an example for people that my vitality and aliveness can be useful to people who are doubting their own vitality and their own aliveness, it was just fantastic. It was weirdly something that didn’t even occur to me. It was just a part of my identity I put to the side. It’s not that I denied it, most of my clients knew about it. All my colleagues know about it. It’s not like I hid it, it’s just that I wasn’t making use of it. Now I feel like I can make use of it in a way that is very affirming and very positive— forgive the pun.”
Hennes has done the three-day Braking AIDS Ride for the last five years
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ALAN BARNETT
“At the time I felt less bad about his dying because I figured I’d be following him soon enough, so my survival wasn’t such a bad thing, but I failed to get sick,” Hennes recounts. “Then in the late ’90s, my T cells started to drop.” Hennes’s doctor switched his regimen, and a year later his viral load had reached undetectable levels. That’s when his future really began to reveal itself in an entirely new way. “The day I got word that I was undetectable, I was stunned,” the designer says. “That was probably the biggest shock of all. It was certainly a moment of joy because by then I decided I wanted to live and have as full a life as I could. I wanted to make as much of my life as I could. It was the first time in 15 years that I actually believed it was possible.” Hennes has taken these lessons and examinations of the human spirit into a newfound activism. For the last five
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COURTESY TOM HENNES
Hennes (right) and his late partner Kevin
Nowadays, Hennes inspires people living with HIV to reawaken their own self-worth not only through his work, but also in the manner in which he leads his life. “Lead with our own humanity,” he advises. “We are in a world that is accurately characterized by madness. Madness is about disassociation. It’s about shunting off. It’s about denial of truth, the denial of reality, the denial of others’ humanity. I don’t know if there is any recipe for success here…. Human beings are wired to select facts and create structures of meaning that are driven primarily by our sense of who we are, which is emotionally driven, and our emotional context for the world around us. We’re not going to get there by citing facts and figures. We need to have those to back things up and to give to the receptive but creating the receptivity for the
positions we believe in has to come from the fundamentals of being a human being, valuing each other.” “Start living today,” he continues. “Find someone to connect to in this community, to reengage with others. With respect to my HIV status, I’d been living in isolation, and reconnecting to others who are positive or whom that is a point of connection, not just an incidental piece of knowledge, has actually engaged in positive work.” “Hatred and homophobia and transphobia, list the phobias, are the root cause of the epidemic. The virus hasn’t been at the root cause for 15 to 20 years. [These points] contribute to the marginalization of people who are not in the perceived mainstream. That marginalization becomes material and real, and lethal, among vulnerable groups of people—people who are HIV-positive, LGBTQ youth whose families threw them out or because they’re using drugs or abusing alcohol or because they have issues with mental illness.” “You have to look at those things and say that’s not who I am,” he concludes. “It’s true neither [being gay or HIVpositive] define who I am, but they’re deeply part of who I am and in my own experience, the more of the fullness of who I am I can acknowledge and make use of, the more alive person I can become. And I think that’s true of everybody.” HIVPLUSMAG.COM
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STIGMA
BY NEAL BROVERMAN
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U=U ISN’T REACHING THOSE WHO NEED IT MOST A NEW STUDY SHOWS A SHOCKING AMOUNT OF IGNORANCE WHEN IT COMES TO YOUNG PEOPLE AND HIV. of HIV-negative millennials report that they avoid hugging, talking, or being friends with someone who is HIV-positive, according to a new study from the Prevention Access Campaign and the pharmaceutical company Merck. The study uncovered widespread ignorance and stigma from young people when it comes to HIV. Thirty percent of HIV-negative millennials (people between the ages of 23 and 36) said they would prefer not to interact socially with someone with HIV. One in three Black and Latinx millennials reported avoiding even shaking hands or sharing drinks or utensils with someone with HIV, despite the known fact that HIV can’t be transmitted through casual contact. The study also included members of Generation Z, finding that 41 percent of those aged 18-22 were either not at all informed or somewhat informed about HIV, compared to 23 percent of millennials. In response to the findings—culled during the summer of 2019 among nearly 1,600 Generation Z and millennial individuals—Merck and the Prevention Access Campaign launched a campaign entitled “Owning HIV: Young Adults and the Fight Ahead.” “Despite scientific advances and decades of HIV advocacy and education, the findings highlight a disturbing trend: young adults overwhelmingly are not being informed effectively about the basics of HIV,” Bruce Richman, executive director of the Prevention Access Campaign and the Undetectable Equals Untransmittable (U=U) campaign, said in a statement. “These findings are a call to action that the crisis in the United States is far from over. It’s time to elevate a real conversation about HIV and sexual health among America’s young people, and roll out innovative and engaging initiatives to educate and fight HIV stigma.” New HIV diagnoses in the U.S. remained stable between 2012 and 2016, but rose among people aged 25-29. The survey from Merck and the Prevention Access Campaign also found that a majority of Generation Z and millennial individuals are unfamiliar with the term “undetectable” and the phrases “undetectable equals untransmittable” and “U=U.” U=U refers to the consensus that people living with HIV on treatment who reach and maintain an undetectable viral load have zero risk of transmitting HIV to others.
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D A I LY D O S E BY TYLER CURRY
HOW TO DATE AN HIV-NEGATIVE PERSON IT’S GOTTEN EASIER IN THE ERA OF U=U
CUT THEM SOME SLACK. As long as they are willing to learn, give them some time to ask questions and become comfortable with what it means to be undetectable. After all, it took you a while to figure it out. It will take time for them as well. Let them know they can ask any question they want. Make them feel comfortable enough to talk about any concerns they may have. Soon enough, they will feel at ease with it and you two can move on to more important topics. BE OPEN ABOUT YOUR OWN CONCERNS. Just like you hope they will be open with you, let them know what’s going on in your mind. Talk to them about your concerns and fears regarding HIV. Be honest about any worries you may have. If they are the right person for you, they will be happy to listen to the things that keep you up at night. It may even bring the two of you closer together. 48
INITIATE THE TALK ABOUT SEX AND SAFETY. You know that undetectable equals untransmittable, but they may not. Talk about safer practices and explain the simple science about sex and HIV. Share that even the Centers for Disease Control and Prevention has acknowledged it is impossible to transmit HIV when you are undetectable. Discuss what it means to have an undetectable viral load. Give them all the information they need to help find their comfort level while sharing your own. Then, after the sex talk, both of you can leave the rest up to hormones and chemistry. DON’T SELL YOURSELF SHORT. Maybe your date doesn’t have to take a daily medication like you do. Big deal. Just because they are HIV-negative doesn’t mean they are worth more or less than you are. They have to win your love and respect just as much as you need to win theirs. Do not mistake your partner’s comfort level with your HIV status as a sign of their good character or a reason to overlook their character flaws. You are deserving of a partner who deserves you, regardless of status. DON’T WORRY ABOUT BEING REJECTED. Be up front about your status with no regrets. You’re not the first one to be rejected. Believe me, there are plenty of people who are rejected for a myriad of reasons each day. Someone will be able to recognize what a catch you are and feel lucky to have you. Stand tall, make no apologies for who you are, and find the one person who is right for you. HIV be damned.
Editor at large TYLER CURRY is also a contributing editor at The Advocate magazine and the author of A Peacock Among Pigeons. (@IamTylerCurry)
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THE AFTERMATH OF an HIV diagnosis can often leave you with so much to think about that you sometimes forget what life was like before receiving your results. But as the shock wears off and the meds do their thing, life starts to resemble something closer to normal. Before you know it, you are undetectable and your mind shifts to something that can be even scarier than your lab results…dating. You may think it’s easier to date someone with the same status as you, but with the emergence of PrEP and U=U (undetectable equals untransmittable), your status should have nothing to do with chemistry, compatibility, or sexual attraction. You deserve to be with someone who is the right match. Why? Because you and your partner have nothing to fear. Still, you might be concerned about how someone who is HIV-negative will react to your positive status. So much so that you might sabotage the connection before it has a chance to take. Relax! You aren’t the only one who may be navigating new territories. Here are a few things to be aware of before dating someone who is HIV-negative. Pay attention because you might just live happily ever after. If you do break up, trust me, it won’t be over HIV.
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