World AIDS Day 2016: The Year's Biggest Developments

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It was a year of breakthroughs in injectables, cures for hep C, and exciting news from studies on PrEP efficiency (excellent) how Treatment as Prevention really works (even better). To celebrate World AIDS Day this year, we asked 10 people from different walks of life to tell us about their 2016 news. 

 

NOTE: Dr. Demetre Daskalakis, assistant commissioner of New York City's Bureau of HIV/AIDS Prevention and Control, was first to publicly announce what the Swiss have known for a decade. Soon the National Alliance of State & Territorial AIDS Directors and National Institute of Health leaders joined him in endorsing a consensus statement declaring that people with HIV who have maintained an undetectable viral load (and thus are durably virally supressed) have a zero risk of transmitting the virus sexually.

 

Undetectable = Untransmittable

This is the game changer: people with HIV on effective treatment cannot transmit HIV. Twenty years ago we were told that treatment would keep us alive.  Now we know we can’t pass on HIV to the people we love. This is the most important development in the last 20 years. This new reality fundamentally dismantles HIV stigma in a way that has never been possible. It breaks down HIV stigma on the clinical, community, and personal levels. Stigma has made people with HIV vulnerable to all forms of harm and injustice and has impeded prevention, testing, and treatment efforts. It will dramatically improve the well-being of people with HIV from every beautiful walk of life. This is love without fear. It is reason to celebrate.

This momentous, wonderful magical message changes our lives, but it’s still virtually unknown. During this time of change there will be understandable resistance. After 35 years of fear of HIV and people with HIV, change won’t happen quickly. Stigma endures even within the HIV prevention field. People will continue to be anxious and stir up fear because science can never say that transmission is impossible. We need to know when to move on from those folks and encourage them to wear a helmet when they cross their kitchen floors since they are more likely to die from the ceiling falling in. 

Despite the advances in medicine and the conclusions of the top scientists, some will continue to stigmatize us and present us as the vectors of disease that they have always perceived us to be. Hand them the research, and move on.

It’s up to us to take control of the narrative about us. It’s up to people with HIV and our allies to mobilize, to monitor, and to correct the inaccuracies and biases of information providers and to speak out whenever and wherever we aren’t being represented with truth and dignity. And, we must demand that barriers are removed so that everyone has equal access to the prevention revolution. This is our time. Love without fear! #UequalsU- 

Bruch Richman is co-founder and executive director of the Prevention Access Campaign (preventionaccess.org/undetectable), which aims to end the dual epidemics of HIV and HIV-related stigma. @PreventionAC    

 

No More Cart Before the Horse

Earlier this year, the Centers for Disease Control and Prevention released data predicting that one out of every two young black gay men will contract HIV in his lifetime. Taking that dire warning into consideration, many researchers and leaders have begun to make more intentional efforts to address the needs of black gay and bi men. Issues and experiences of young black gay men, while shared amongst some other groups, are still quite unique. Frankly, despite that, as it relates to care of black gay men, providers and programs have, as the old adage says, “put the cart before the horse.” Before a collective address of what HIV looks like among black gay men in America can happen, we all must first look at what it looks like to be a black gay man in America.

Firstly, there is a need to address identity. Homophobia in black spaces and racism in gay spaces severely impacts the identity, self-worth, and life choices of black gay men. If I feel like I don’t belong, my actions show it one way or another. Even the term “gay,” neither historically nor currently captures, speaks to, celebrates, or embraces the black experience. Very rarely, if at all, is blackness and gayness authentically, collectively celebrated. Layer that with several systems of oppression and there’s no question that we will continue to see the disproportionate rates of HIV we currently see in black communities.

Systems of oppression impact a number of groups — women, immigrants, trans people — so addressing them can’t happen overnight. But where we can begin is by investing in leadership development, self-advocacy, and self-esteem among young black gay men. Giving them the tools they need to make better decisions, not just as it relates to their sexual choices, but their entire lives. When looking at black gay health, we need to look at the entire black gay man. How can one’s health be a priority when his very sense of self and identity is challenged or remains unacknowledged?

Gerald Garth is the programs specialist at the Black AIDS Institute. @BlackAIDS_org

 

 

Medication Price Hikes Threaten the Fight Against HIV

Each year, World AIDS Day provides us with an opportunity to both celebrate how far we’ve come, and recognize just how much further we have to go in the global fight against HIV. While modern medicine’s ability to identify and improve HIV treatments is continuously progressing, these advancements have come packaged with the threat of corporate opportunism. In 2016, price hikes by companies such as Mylan and Turing Pharmaceuticals have underscored the dangers posed by a poorly regulated industry acting in complete disregard of the public interest.

It is important that we consider the recent successes and remaining challenges within the HIV and AIDS advocacy movement in historical context. When Gay Men’s Health Crisis was conceived in 1981, the gay community was under siege from a nameless “cancer” that had perplexed the medical field and guaranteed certain death for those who contracted it. GMHC has had one goal since its inception—to extinguish the threat posed by HIV and AIDS. To skeptics, this was a futile and desperate proposition at the time it originated; to others, organizations like GMHC offered a ray of hope in the otherwise grim battle against a merciless and unrelenting disease.

 Those skeptics could never have predicted the tremendous gains that such hope has generated. Over the last 35 years, we have produced increasingly effective treatments, and are inching closer to a vaccine with each passing year. The medical community has developed antiretroviral drugs that allow HIV-positive individuals to live normal, healthy lives. And since 2012, PEP, an emergency post exposure treatment, and PrEP, a daily treatment for individuals at risk of exposure, have played crucial roles in curtailing the spread of HIV.

However, we must temper our hopes with caution. While these and similar treatments have extended lives and reduced transmission rates, they also demand ready and uninterrupted access. For example, PEP treatment must begin within 72 hours after the point of exposure, and PrEP requires daily usage, as do antiretroviral medications for HIV-positive individuals.

As exemplified by Turing Pharmaceuticals, some drug companies will stop at nothing in their pursuit of higher profit margins, even at the cost of endangering lives. In the event of a significant price hike, many at-risk individuals will be left fully exposed to HIV and its debilitating effects. They can’t wait weeks, much less months, for insurance companies to determine whether they are willing or able to make the medications affordable. Moreover, there are scores of at-risk and HIV-positive individuals who are unable to access treatments at this very moment, let alone in the aftermath of potential price hikes.

The pharmaceutical industry’s seemingly unfettered ability to monopolize and exploit the market threatens to diminish the medical community’s miraculous work. As GMHC marches forward in search of an end to the AIDS crisis, we will re-double our commitment to improve not only the treatments available, but the public’s ability to obtain these treatments. We must fight for increased regulation of the pharmaceutical industry, guard against monopolization, and demand universal access to antiretroviral treatments, including PEP and PrEP. Otherwise, we remain one price hike away from catapulting back to 1981. —Kelsey Louie is CEO of the Gay Men’s Health Crisis. @GMHC

 

The Entertainment Industry Improved… Just Not Enough

Unflinching portrayals of HIV in entertainment, sadly, still feel rare to find in mainstream spaces. Looking, on HBO, approached the subject with beautiful nuance. After stumbling with its reveal, writers on How to Get Away With Murder smartly stepped back and tackled Connor and Oliver’s post-diagnosis relationship with honesty. They broke ground by being the rare network series that showed a couple loving and having intimacy while navigating and confronting a prognosis that has long been portrayed as a death sentence in media. 

Still, there needs to be more. A supporting character in one show isn’t enough. Yes, 2014’s The Normal Heart was an incredible glimpse at how far things have come, but we need stories beyond the grave. There are so many men and women living long, wonderful lives and they have stories to tell. Why does dialogue around HIV continue to feel so taboo? Why aren’t we telling more stories? Why does rapper Mikki Blanco revealing his status get more media attention than the incredible work and activism he’s done? 

There needs to be more visibility and dialogue about HIV and AIDS in mainstream media; it’s 

the only way we can ease the stigma. Charlie Sheen unveiling his status as HIV-positive and the release of Straight Outta Compton choosing to ignore some of the uglier truths that came with Eazy-E’s prognosis and death back in the ’90s shows how uneducated mainstream media is decades later. Let’s do better in 2017. —Gerrick D. Kennedy is an entertainment writer at the Los Angeles Times. @GerrickKennedy

 

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Finding Prince Charming Got Easier 

It’s yet to be seen how Logo’s new gay dating show, Finding Prince Charming, will really handle having an HIV-positive contestant. But Prince Charming himself revealed that the coming out was a rather tearful disclosure. Given the state of HIV treatment and prevention today, my first thought was, “Why all the dramatics?”

The topic of HIV might be shocking — if it was a storyline on ABC’s The Bachelor — but a gay dating show of any kind should know better than to address any person with HIV as if they are any less valuable or deserving of love. The 33-year-old bachelor, Robert Sepulveda, said something similar, when he told People, “For me, it’s like: Is someone HIV-positive not worthy of love? That’s really the question …. I’m not going to not date someone because they’re HIV-positive. That’s ridiculous. It’s really a stigma that we have to resolve now.”

Exactly. For me the real surprise is that there’s only one contestant on Finding Prince Charming with HIV, or at least only one that disclosed his status on camera. Regardless, when it comes to dating with HIV, it couldn’t be more of a non-issue — so long as both parties are aware of their status and informed about prevention. The biggest news of 2016 when it comes to dating is that it’s no longer up for debate: undetectable equals uninfectious. There is no asterisk needed, no requiring a condom or PrEP (although both of those should certainly be considered by any HIV-negative person having casual sex). People with HIV who are on treatment and have reduced their viral loads to undetectable levels simply do not transmit HIV. Period.

I hope that the other Prince Charming contestants — and the viewing public — are intelligent enough to realize that just because only one person revealed his status, it doesn’t mean everyone else on the show is HIV-negative. Not all who know their status feel like disclosing their confidential medical information in public (nor should they feel compelled to). And not everyone knows their status, which is why it’s up to each of us to take responsibility for our own sexual health. —Tyler Curry is Plus magazine's editor at large. @IamTylerCurry

 

The Imperative Became Super Obvious

The biggest news this year concerning black gay and bisexual men, was the announcement by the Centers for Disease Control and Prevention researchers regarding HIV lifetime risk estimates. The announcement suggested that if current HIV rates of diagnosis remain the same, about one in two black gay and bisexual men will be diagnosed with HIV during their lifetime.

We now know more than ever how imperative it is, how urgent it is, that we continue to address the socioeconomic drivers of HIV in our community. In addition to promoting HIV testing and PrEP, we must address issues like: personal and community trauma, criminalization and mass incarceration, economic distress, housing instability and stigma. We cannot afford to have conversations around the impact 

of HIV on black gay and bisexual men, and not consider the role of anti-black violence, homophobia, and other forms of structural violence. Any attempt to address HIV in black communities and not address racial justice, will end in failure. Racial justice is HIV prevention. 

We must also continue to advocate for resources to strengthen our community institutions and support our movement leadership.  Understanding the role and possibilities of arts and culture as structural interventions for black gay and bisexual men will carry us further in addressing both trauma and stigma. Additionally, we must continue to amplify the stories of black gay and bisexual men to counter the narratives circulating that misrepresent and distort who we are. The whitewashing of AIDS movement history is one of many examples of how our stories as black gay and bisexual men are systematically marginalized. Our stories build power. 

Thirty years after black gay writer and activist Craig G. Harris stormed the stage at the American Public Health Association meeting (in protest of the lack of people of color represented at their first plenary on HIV) and proclaimed, “I will be heard,” we, as black gay and bisexual men  and allies, must take his words not only as inspiration but also prophecy, and ensure that our voices are heard and that our stories are heard. —Charles Stephens is the founder and executive director of the Counter Narrative Project. @buildingdesire

 

Themissinggeneration Seandorseydance 6 Photoby Ivy Maiorino

The Missing Generation

 

My Year With Long-term Survivors 

Over the past year, I've been blessed with the most extraordinary gift: traveling the U.S. and facilitating hundreds of conversations in communities small and large about HIV and AIDS, past and present, among transgender and LGBTQ people. I’m a transgender and queer choreographer and dancer. Right now, the Sean Dorsey Dance company is mid-way through a two-year, 20-city tour of our show, The Missing Generation, which gives voice to transgender and LGBTQ long-term survivors of the early AIDS epidemic.

To create The Missing Generation, I recording oral history interviews with longtime survivors across the country. I then spent over 500 hours listening (and listening, and listening) to these interviews, working with community members, writing, working with a team of composers, and finally creating a sound-score that features clips of these people’s remarkable voices and stories layered with beautiful original music. We dance non-stop for more than an hour to these stories and music.

I created this work as an invitation across multiple generations (long-term survivors as well as young people who have never been taught about this vital history) to feel deeply, to crack open our hearts, to touch the grief and loss and rage and humor and power inside, to see and talk to each other, and to begin to heal and connect. It’s been especially important for me that the show articulates trans women’s experiences of the early epidemic — particularly transwomen of color!

In each city we visit, we perform The Missing Generation, sit in conversation with people at inter-generational community forums on HIV and AIDS, and dance together in free workshops and classes (open to those living with HIV, those with dis/abilities, people of all ages and levels of experience).

Over the past year, I’ve had conversations, dances, embraces, and shared tears with literally thousands of people and survivors across the country. Here’s what I’ve learned:

Until America reckons with its intensely racist history and institutions, we will never find a cure nor be able to properly support people living with HIV and AIDS.

Transgender women are powerful and important sources of wisdom, insight and information about the history of HIV and AIDS in America—and they must be invested in as our future leaders.

When we have old hurts and trauma locked inside our hearts, we have to crack open them open in order to heal. Doing this work is painful, but it’s also important and powerful when done in community.

It’s tragic that LGBT communities continue to be so segregated by age and generations. Younger people are not benefiting from friendship, family, mentoring, and exchanges with our elders.

We have a lot of work to do to fully understand and attend to the physical and emotional impacts of longtime survivors, who have been living with long-buried trauma and PTSD, taking HIV meds for decades without knowing the long-term impact of doing so, surviving without so many of their lost peers, and trying to navigate the impact of aging; all without support from LGBT community.

The capacity to experience grief, beauty, devastating pain, and deep love are some of the most sacred parts of being human.

I cannot express how powerful and life-changing it has been to witness, hold, mirror, and learn from long-term survivors. One of the most exciting parts of this project is bringing the work into schools and to young people; having conversations, and then pairing them with elders and survivors to talk with and learn from. I get giddy when I see young people getting fired up and diving into activism, relationships, and community. I count my blessings and give thanks for this work. It’s been a very, very good year indeed. —Sean Dorsey is the award- winning dancer and choreographer of Sean Dorsey Dance Company. @seandorseydance

 

Drawing a Line

I believe 2016 will be seen as a line of demarcation, between fearing that I might still infect someone, even though I am undetectable — and now knowing for sure that people who are undetectable pose no risk to anyone. What incredible peace of mind! For me, it’s as significant as the line drawn in 1996 between living and dying, when new medications were introduced. —Mark S. King is a poz activist and the writer behind My Fabulous Disease. @MyFabDisease

 

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Making My Marriage Even Safer

For me the biggest news for partners of people with HIV is that “undetectable” means you can not transmit the virus. I was married in 1997 and diagnosed in 1999. I have always used a condom with my husband, but I was always worried about something going wrong and him becoming HIV-positive.  This news has made a our intimacy better and I feel better about myself.—Olga Irwin is co-chair of Ohio’s chapter of the Positive Women’s Network-U.S.A. @uspwn

 

Anti-Criminalization Advocates Get a Big Win

HIV criminalization reform efforts are growing across the U.S., and increasingly recognized as critical to reducing HIV transmission, protecting civil rights, and improving health outcomes for those living with the 

disease. As activists move forward, it is vital that these grassroots advocacy and mobilization efforts remain informed by the latest science, expert strategies, and well-grounded research.

HIV is Not a Crime II, was held this spring at the University of Alabama/Huntsville. The nearly three hundred advocates engaged in HIV criminalization reform who attended represented 34 U.S. states, Mexico, Canada, Germany, and the United Kingdom.

In keeping with the philosophy, “nothing about us without us,” The Sero Project and Positive Women’s Network-USA — two of the largest national networks of people living with HIV in the U.S . — co-produced the event, in coalition with scores of global, national, state, and local HIV organizations and HIV-positive individuals. Allies — including organizations addressing LGBT, economic, racial, and gender justice or addressing other intersecting issues (such as drug and immigration policy, sex work organizing, criminal justice system reform) — were also involved in many ways.

The primary focus of the second national training academy was on uplifting the work of people living with HIV and connecting activists, advocates, organizations, and networks from around the country to coordinate and maximize the efficacy of our efforts. A key aspect of this was providing forums for advocates to learn from each other.

This year Colorado became the second state to significantly reform their HIV specific laws through comprehensive modernization of legislation addressing sexually transmitted infections. Barb Cardell, one of the leaders from the Colorado Mod (modernization) Squad and Colorado Orgs Responding to AIDS (CORA) told the HINAC audience, “One of the consequences of changing Colorado’s law is that it showed the world that a group of advocates could make a change in the laws; progress is possible!”

As the Colorado example indicates, achieving significant reform can take years; but serious efforts are now underway in at least a dozen states, including Florida, Ohio, Indiana, Michigan, Louisiana, Mississippi, Idaho, California, Georgia, and Tennessee.

Joel Goldman, managing director of the Elizabeth Taylor AIDS Foundation, spoke at the HINAC closing reception, promising that HIV criminalization will be his foundation’s top legislative priority at  AIDSWatch 2017 in Washington, D.C. Earlier, in a pre-recorded video, Hillary Clinton told our attendees that if she wins the Presidential election, she will also work to reform outdated and stigmatizing HIV criminalization laws.

At Huntsville, the attendance, programs, and ensuing discussions reflected the evolution of the HIV criminalization movement; as it matures it is becoming a central element in a broader movement combating the carceral state and the criminalization of disenfranchised populations. Work is already underway for HIV is Not a Crime III, planned for 2018. —Tami Haught is the director of training and state organizing for The Sero Project. @theseroproject

 

Hiv Is Not A Crime

The South is Seeing Change

After living with HIV for 27 years I have arrived at my station to fully speak my truth, hold institutional structure accountable, and build an amplified voice of people living with HIV throughout the South. I want to pull up our seats at every table that speaks to, works on behalf of, and/or funds HIV. I join other advocates in pushing for nothing about us, without us. After a 14-year policy battle, the South will now have its just due through restructuring of Housing Opportunities for People With AIDS. Here’s to the tireless work of Kathie Heirs, CEO of AIDS Alabama, and the many others who know that even when we don’t like it, slow and steady wins the race. [Editor's notes: NAWA is a slogan meant to illustrate that no policy should be decided without participation of people who will be affected by that policy. The HOPWA Program is the only federal program dedicated to the housing needs of people living with HIV.] Khafre Kujichagulia Abif is a community organizer for Southern AIDS Coalition, and a contributing editor for Plus. @SouthernAIDSCo 

 

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