The US Women and PrEP Working Group and partners had a first-hand look at PrEP and transgender women — through the eyes of women prescribing it, using it, choosing not to use it, advocates calling for more research on it and policy-makers charged with integrating it into the national HIV response.
You can click here to view the video.
Slides are also available here.
This webinar featured Jean-Michel Molina of the French research agency ANRS and Sheena McCormack of the UK Medical Research Council discussing the data from the IPERGAY and PROUD studies, respectively. Both trials evaluated oral TDF/FTC (brand name Truvada) as PrEP in gay men and other men who have sex with men, and both reported high levels of protection against HIV acquisition. PROUD prescribed a daily pill regimen; IPERGAY asked trial participants to follow an “event driven” regimen that involved a sequence of doses before and after sex. IPERGAY participants took an average of four doses per week—comparable to the estimated protective dose required in trials of daily oral PrEP.
This post first appeared in thebody.com by Julie “JD” Davids.
As more people consider pre-exposure prophylaxis (PrEP) for HIV prevention, the options for expanding their knowledge of PrEP are, well, expanding.
In July 2015, the Obama Administration cited PrEP as a top priority in its update to the National HIV/AIDS Strategy. Just weeks later, AIDS Healthcare Foundation, which opposed the FDA approval of PrEP two years ago and has campaigned against its use as a public health intervention, issued a statement laying out “principles” for PrEP usage.
So what resources are out there to assist individuals and providers in making decisions about PrEP? Here’s a quick look at a handful of the many options for PrEP information and support.
PrEP and HIV Prevention: A Quick Primer on a Hot Topic
This handy short video from your pals at TheBody.com gives the basics about PrEP, and also covers how people who take HIV treatment for themselves are a force of HIV prevention — all in a minute and a half!
A Video in English and Spanish: What Is PrEP?
To get a little more in-depth, turn to WhatisPrEP.org for a five-minute video that explains how PrEP works. Although this video came out a year ago, the basic information remains solid — and you can click on the page to swap into the Spanish language version.
Getting Yourself Prepared for PrEP: An Insurance and Access Flowchart from Project Inform
From the longtime community-knowledge bank on HIV prevention comes a comprehensive chart making the confusing hurdles to PrEP access — including insurance, public programs and assistance programs — easier to navigate.
My PrEP Experience: Stories from Real PrEP Users
This early and ongoing PrEP site features stories from PrEP users themselves, plus helpful information on PrEP for users, people who are considering using it and providers. New contributors are welcome!
PrEP Facts: Rethinking HIV Prevention and Sex
Nearly 9,000 people had joined this Facebook group by summer 2015. Its fast-moving discussions, debates, questions and answers seek to promote fact-based information, understanding, respect and compassion.
The HIV Prevention Pill: Facts, Fiction and How to Get It
What happens when activists and educators Damon Jacobs and Nelson Vergel do a video hangout about the use of Truvada (tenofovir/FTC) for PrEP? In just an hour they cover the landscape of research facts and misconceptions, and also how to access the highly effective prevention tool. Drop in and see for yourself!
This was first published in Radical Faggot by Cassie Warren. Cassie uses both male, female and ungendered pronouns.
Cassie Warren is a health educator, activist and youth worker dedicated to radical access to affirming health services, especially for trans and queer young people. She works at the Broadway Youth Center in Chicago–a community space for trans and queer youth experiencing homelessness.
Last month, Cassie was invited to speak on a panel as part of a meeting on PrEP and adolescents. He took the opportunity to address publicly not merely the barriers that keep trans and queer young people–particularly those of color–from getting on PrEP, but the structures of US healthcare that purposefully deny effective and affirming care for oppressed people at large. Here is what they had to say:
Today, I will be speaking from my current experience and relationships with young people. I help young folks navigate the American healthcare system, and provide supportive services and resources to primarily Black, trans and queer young people experiencing homelessness in Chicago, at a community space called the Broadway Youth Center.
I hope that I can contribute to this convening by illuminating the policy changes that could remove some of the barriers in writing PrEP prescriptions for young people, and the demands we should be making of our healthcare system when it comes to creating a landscape where PrEP is accessible to all young folks.
The successes I share with you today are largely due to the frameworks we use and our model of care.
We provide integrated social and medical services in a center that only serves young people. We believe there should be multiple points of access to these services. A young person may come to our space to get a hot meal, a state ID voucher, or to get some sleep, and they may stay or come back for community meeting, an HIV test, or our GED program. We believe young people are the experts in their own lives and position ourselves as resources or as advocates for the resources they tell us they need.
We think there should be as few barriers as possible to accessing health care, that your documentation status doesn’t matter, that young people know what’s best for themselves, and that all gender expressions are valid, important, deserving of celebration. We utilize harm reduction, strengths-based, and transformative justice approaches to all our work.
Because of the context and setting in which we provide our services, we are able to make them accessible to the folks most likely to be turned away or banned from other social and health services. Yet, we still experience structural barriers that keep us from getting PrEP to the folks interested in starting. Three concrete policies whose support could remove some of these barriers and benefit young people are:
However, while these policy changes would put us in a place to provide a prescription for young people, successful PrEP access and use is not just about writing a prescription to a young person. It is about creating real paths to affirming healthcare for the young people most at risk of acquiring new HIV infections: Young, Black, trans and queer people, a significant number of whom are homeless.
I’d like to talk about the things that are integral to address when we are working together to support youth in accessing and taking PrEP successfully.
The young people I’m speaking of face significant barriers to basic resources on a daily basis, even outside of the barriers inherent within the US healthcare system. A lack of stable housing means a lack of storage, lack of security for your belongings, and a constant preoccupation with and hyper awareness of your surroundings. It means stress and anxiety stemming from not knowing where your next meal might come from, to constant surveillance and harassment by police. It often means you don’t have regular access to personal documentation, like an ID, social security card or birth certificate.
When I hear folks in healthcare concerned about young people adhering to the regiment of a medication like PrEP, I don’t often hear them talking about the structural oppressions that make adherence difficult to impossible: Lack of safe storage; the bureaucracy around Medicaid that makes it so easy to lose care; being denied services based on gender markers, or a new name that doesn’t match medical records; not having state ID, a social security number, or other documentation; lack of bus fare to pick up or refill prescriptions; the criminalization of survival crimes and/or quality of life crimes; limited access to a consistent phone number or email; the lack of youth-only spaces.
Within the US healthcare system there are mountainous barriers for Black, Brown, trans and queer young people–costs, required ID, not to mention care often is not gender-affirming, and rarely gives youth the ability to consent to their own healthcare. There is inherent harm and trauma in the medical system, especially for the young people at highest risk for acquiring HIV.
In the US, people without access to health insurance have learned to receive their care at hospitals and ERs. A study conducted by the Young Women’s Empowerment Project in Chicago found that young, Black, trans and queer people report hospitals as the second most harmful institutions in which they experience violence, second only to the criminal justice system.
And really, there is no difference.
When many of these young people attempt to access services at hospitals, they are regularly arrested or institutionalized. I’m going to say that again, because I want to make sure this point is clear:
The populations at highest risk for HIV are poor, young, Black, trans and queer folks, and often, when they attempt to seek services from public outlets, they are arrested or institutionalized.
The US healthcare system is one that often takes away our ability to have options and control over our own health, a place where many people feel shamed for their lifestyle choices, and where power dynamics are rarely in the favor of young people, people of color, trans and queer people. But PrEP should challenge all of these things.
PrEP and shame do not go together. PrEP is a new option we can offer young people. PrEP gives power and control to the receptive partner.
Often, because of the heirarchical structures valued by our healthcare system, the inherent abilities of young people are erased. But if we take the time to see their strengths, to recognize and defy those structural barriers, we are able to figure out how to meet folks where they are, and return some of their power to them. We cannot talk about successful uptake of PrEP and young people without being strengths-based, without being sex-positive, without being youth-centered, and without giving youth the ability to identify and address all their health needs.
The challenges surrounding offering PrEP to young people should not be seen as threats, but instead as opportunities. For they shine light on the inadequacies of our healthcare system, and bring into sharp focus the barriers we need to address and remove.
We have a highly effective, safe pill we can take to prevent HIV. But PrEP only works when we are given real access to it.
If trans folks are the most vulnerable population, and we don’t have trans competent doctors, we create barriers to access. If we arrest or institutionalize poor, Black young people for attempting to seek the care they need, we create barriers to access. And without access to take it, PrEP cannot work.
If we want young people to take PrEP, to get engaged in primary care, then we have to provide gender affirming services. We have to get rid of security guards and police in our healthcare clinics. We need to affirm young people’s consensual pleasures. We need more youth-only healthcare spaces, and insurance companies need to survive on something other than capitalism.
Last week at the exact same time that marriage equality passed in the United States, a vibrant, courageous, young trans person I work with was killed. This is crucial to note, because the successful advancement of policy does not equal the distribution of resources that are affirming, safe and accessible to all, especially those at the intersections of multiple oppressed and policed identities.
Ending HIV is bigger than policy, bigger than the healthcare system alone. It is about ending prisons and detention centers as the primary places people receive housing and healthcare. It is about centering trans leadership across movements and communities. It is about a commitment to strong social services, including public education, child care, and reproductive freedom. It is about the decriminalization of street economies, of sex work, of homelessness. It is about ending all forms of violence that treat Black, trans and queer communities as undeserving of love, of respect, of care.
There is a clear, continued pattern, a pattern in which healthcare policy and practices uplift folks who are already privileged to have access to more resources that lower their risk, and provide them more support. At the last several PrEP summits I’ve attended, researchers talk about the outstanding number of people lining up for PrEP, but say that they are rarely the folks most at risk for acquiring HIV.
The time to recognize the barriers and challenges facing young, Black, trans and queer youth and respond in ways that are supportive, humanizing, and focused on their voices, is now.
PrEP can help all of us get to zero, or it can merely help certain communities with access get to zero. It can ramp up care for the communities that have always been most impacted by the HIV virus, or it can further widen the gap in racial, economic, and gender disparities that continue to fuel the HIV epidemic.
Now is the time to decide to be on the right side or wrong side of justice. PrEP works, but only when we actively dismantle the barriers to young folks’ access to it.
The World Health Organization (WHO) released updated guidance in late 2015 on oral pre-exposure prophylaxis (PrEP), containing tenofovir (TDF), as an additional HIV prevention choice. The new guidance is significantly broader than previously and creates real opportunities to move forward with implementing PrEP as part of comprehensive HIV programmes.
This publication, produced collaboratively between UNAIDS, WHO and AVAC, is intended to complement WHO recommendations and support the optimal use of oral PrEP to protect individuals and contribute to ending the AIDS epidemic.
On July 19, AVAC convened a satellite session, Injectable Options and Preventable Confusion: An Update and Interactive Discussion on the Pipeline of Antibodies, Long-acting ARVS and Vaccines. This session, part of the IAS Conference on HIV Pathogenesis, Treatment and Prevention, featured presentations on trials of long-acting injectable PrEP agents by Mike Cohen (HPTN and UNC), Larry Corey (HVTN) gave an update on HIV vaccine research and John Mascola (NIAID Vaccine Research Center) reviewed the state of passive antibody infusions for prevention. The presentations were then discussed by a panel that included Brian Kanyemba (Desmond Tutu HIV Foundation), Veronica Noseda (Sidaction) and Jerome Singh (CAPRISA).
The session provided a moment to consider what might be coming for HIV prevention. The speakers provided a guide to the prevention pipeline. The three approaches that the speakers highlighted—injectable PrEP, an HIV vaccine and passive antibodies—are in trials now. All three approaches, even if they show efficacy, are years from being implemented. But the HIV field must be ready, and must prepare now.
These updates were particularly relevant at a conference that was focused heavily on ART—whether the START results establishing the health benefits of early treatment, or the expanding implementation of daily oral PrEP globally and in different populations.
The lessons from and, ideally, successes of implementation of early treatment and PrEP that will emerge in the months and years after this discussion will provide a roadmap for these new options if they become available. Speakers emphasized the challenge of success. As Glenda Gray said at the session “We are used to failure in HIV prevention but market failure for effective interventions is the thing that worries me the most.”
Micheal Ighodaro is an AVAC staff member.
Over the past few months I have spent a lot of time talking to LGBT people about PrEP. I have been at meetings that were specifically focused on HIV and meetings where HIV was a very, very small part of the agenda. And while it’s clear that PrEP is needed for LGBT people, it’s also clear that we have a lot of work to do.
Many members of the LGBT community are still struggling with the idea of PrEP, and many do not know about it or how it works. For example, I was at a conference this past June that brought together LGBT and sex worker activists from east Africa and around the continent. HIV was a very small part of the conference agenda. In fact, AVAC, amfAR and IAVI hosted the only HIV-related panel in the conference. I spoke about this new pill that prevents HIV. To some, this was a totally new concept, but to others PrEP sounded good. Others asked whether it would take away ARVs from people living with HIV who still can’t always access them?
But before I answered the questions, one of the panelists who was openly living with HIV as a gay man in Africa—a very brave individual—stood up and said that if there was a pill that could help prevent other members of his community from having to go through the same experience he has had to face as a gay man living with HIV in Africa, he wanted to make sure every member of his community knew about this pill and advocated for it.
But all these concerns are very valid. When the WHO’s recommendation for PrEP as a prevention option for gay men and other men who have sex with men came out in 2014, many LGBT activists around the world had mixed reactions. Some didn’t know very much about PrEP and didn’t pay much attention. For others the recommendation singling out MSM just proved the point that the LGBT community is viewed by many stakeholders primarily as the “carriers of HIV.” To get away from this perception, many LGBT Africans I know don’t want to work on HIV at all anymore. And so they weren’t excited when the WHO recommended this new pill just for gay men.
Now that the WHO seems likely to issue broader recommendations for all people at substantial risk, there is a chance that access efforts will focus on other populations.
Last week when I was in Thailand for several meetings with transgender groups, a very close friend of mine who is transgender asked me, “Why can’t people just use condoms? Why do we have to take this pill?” My answer was short and quick, “Condoms are great but not everyone can use them all the time, just like not everyone will use PrEP all the time. PrEP is just an added HIV prevention option.”
In contrast to my sense of the how gay men in Africa are viewing PrEP, which based on recent conversations is with some skepticism, the question for most gay men I met in Thailand was whether or not to start taking PrEP. Dialogues are happening in Thailand that are moving beyond whether this strategy is a good idea or whether it is stigmatizing a specific community. The Thai LGBT community is talking about this medication and what it can do for them and that should continue, not just in Thailand but in Africa and Europe.
This graphic, appearing in AVAC Report 2014/15: HIV Prevention on the Line, shows the planned, ongoing and completed PrEP evaluation studies as of July 2015.
Emily Bass is an AVAC staff member.
The first AIDS conference I attended was the 1999 Conference on Retroviruses and Opportunistic Infections. This annual meeting happens in the northern hemisphere’s winter time, and this particular gathering was in Chicago. It was cold on many levels. Chunks of ice floated in the river that ran between the hotel and the conference center. There was no consensus that AIDS drugs should be made available to poor people in developing countries. The scientists, activists (and hyphenate scientist-activist-journalist types that AIDS work breeds) all seemed fluent in a language I didn’t speak and was just beginning to understand.
The colleague who I’d traveled with said that activists met daily to discuss what they had learned and so at the end of the first day I hovered by an indoor water feature and waited. Slowly people began to arrive—there were men and women, nurses and educators and writers. And we sat down and everyone went around and said what they had seen that was most interesting about the day. There was tremendous warmth in that circle. Commitment, wisdom, frustration and, as I recall, a man with a beautiful smile. That circle is where I met Bob Munk for the first time.
Bob, who passed away earlier this month, has been on my mind as I have watched the events from IAS 2015 in Vancouver unfold. I have thought about him because he was a familiar, friendly face that I saw at AIDS conferences, and because so much of the road that lies ahead depends on the work that Bob, who founded and wrote for AIDS InfoNet, did better than anyone I have ever known.
The final day of the Vancouver meeting, July 22, the international NGO Medecins Sans Frontieres (Doctors without Borders) released a statement that the successful global HIV response will depend on a much greater emphasis on adherence. Adherence is just one of the many words that has crept from public health jargon into widespread use within the community of people living with and working on HIV. But even though it has crossed over, it hasn’t lost its scientific veneer.
Bob Munk’s genius lay, in part, in his ability to explain the most complicated terms in simple language. His black-and-white fact sheets, all designed to be read by someone who hadn’t completed secondary education, were and are unequaled in their accuracy and accessibility. There has not been a year in the two decades that I have done this work that I haven’t suggested that a colleague “see how Bob would say it” or contact him for advice on how to word something. The day that he got in touch with AVAC in recent years to look at the AIDS InfoNet PrEP fact sheet draft, was the day that I realized this intervention would “take off” in the US and around the world.
Adherence is critical, so is saying what that actually is: sticking to the plan. And going forward, it’s not just adherence by people living with HIV or people at risk who receive PrEP—it’s also adherence by the global leaders who promise so much at these meetings and hear so much and present so much of what might be possible, if only action is taken.
Sticking to the plan is only possible if you understand why you’re doing what you’re doing. For a whole generation of AIDS writers and activists and treatment educators, Bob Munk set the gold standard for this understanding. With so much work to be done, we’ll miss him dearly and carry on, as clearly as we can, in his name.
AVAC sends wishes for peace and ease to Bob’s family, friends and husband.
It speaks volumes about the, well, volumes of PrEP data emerging from the International AIDS Society meeting in Vancouver that we can’t even try to summarize all the findings here in P-Values. Excellent round-ups can be found on the NAM website and you can access some of the PrEP sessions online. In this post, we offer up a birds-eye view of what is known and what is anticipated in the coming weeks and months.
On July 17, the Friday before the conference opened, UNAIDS released two new documents: a “Q and A” document on oral PrEP, and WHO/UNAIDS released a background paper, developed jointly with AVAC, titled “Oral Pre-exposure Prophylaxis: Putting a new choice in context”.
What context, you ask? Well, there’s the rub… at least for now. In the cover note from UNAIDS and in the actual text of the latter document, reference is made to a forthcoming recommendation from WHO on PrEP. This guidance is, “likely to be significantly broader than previously and creates real opportunities for moving forward with implementing PrEP as part of comprehensive HIV programmes.”
Exactly what the recommendation will be, and when in 2015 it will be released, remains to be seen (although at the meeting, WHO leadership has alluded to an expedited process—mentioning a September release in one public session). But the “PrEP in context” document spells out the scope: PrEP works for men and women when it’s taken correctly. It’s an important option for people at risk of HIV. It’s safe, needed and should be introduced in close collaboration with civil society and communities in need and at risk. In the absence of the actual recommendation, there may be little action—but this preview could and should catalyze action to be ready for when the recommendation comes as well as for action that can happen in the meantime.
Guidelines don’t turn into programs over night. And it’s important to anticipate the questions—many already being asked—that will only become more urgent when there is an official recommendation on PrEP. The conference provided some concrete info to consider and feedback to various partners on how PrEP is working in the real(-ish) world of open-label access and demonstration projects. Here are some key takeaways from sessions that can be found by the abstract numbers here:
PrEP is a needed, additional option. An unofficial (aka from a seat in the session) analysis of the baseline characteristics gay men and other men who have sex with men who participated in PrEP studies shows that the vast majority reported condomless anal sex at the time of trial enrollment. Some of these trials had prior condomless sex as an entry criteria, and self-reporting of sex acts can be unreliable. But with these caveats, it’s still useful to note where PrEP trial participants were, in terms of ability to negotiate condom use with every sex act, when they began research.
One concern some have raised is that PrEP is going to cause people to abandon condoms, and these data are a reminder that suggest that PrEP needs to be there for is going to be sought out by people who are already not able to use condoms all the time. The information shared by these participants bears out the argument that PrEP is an additional, needed option.
PrEP is feasible—with support. Data from the US PrEP demonstration (Demo) project in San Francisco presented by Albert Liu (San Francisco Department of Public Health) show that those gay men and other MSM at highest risk based on reported behaviors were able to adhere to PrEP regimens sufficiently well to achieve protective levels. Adherence happens in an environment—family, community, country—and the parameters of this environment need to be taken into account as PrEP rolls out. Sybil Hosek (Stroger Hospital of Cook County and ATN) also called for “more in-depth understanding of the historical, societal, behavioral, and attitudinal barriers to PrEP access and adherence among those most impacted in the US—young black MSM.” Dr. Liu also noted that participants in the Demo Project received a financial incentive (USD$25 per study visit). Retention was good in this trial, but the role of incentives need to be interrogated—see our blog here for more on this issue.
People can figure out whether they need PrEP. Beatriz Grinsztejn (Fundação Oswaldo Cruz (Fiocruz)) reported on a Brazilian demonstration project that is the first in a middle-income country in a trial-naïve population (i.e., not post-trial access.) Among gay men and other men who have sex with men, and transgender women offered PrEP, roughly half opted to use the strategy. Uptake was higher among those who self-referred (as opposed to learning about PrEP during an HIV testing visit). These data reinforce that people in some contexts can recognize risk and be interested in PrEP. Is 50 percent uptake success—e.g., people are assessing what will work for them? Or will patterns of uptake change over time? That’s exactly the kind of question that further investigation as PrEP rolls out.
PrEP works in women and men AND women and men are not the same. As we discussed in a blog on Tuesday, there have been various statements at the conference that PrEP doesn’t work as well in women. These need to be tempered and nuanced. No prevention strategy works all the time for every individual and sometimes this is related to biology, other times to culture, context and society. A poster presentation on barriers and facilitators to PrEP use from the ADAPT open-label study of PrEP in young women in South Africa, provides a fascinating, multi-faceted look at how many parameters affected participants’ choices. These sorts of investigations are crucial to introducing PrEP in ways that do work for both men and women. On the biological plausibility front, data reported from the Botswana TDF2 open-label extension trial in men and women found high levels of protection in both sexes—though the numbers were small. As Gus Cairns explains in a terrific post on PrEP for vaginal versus rectal exposure, there are areas for further investigation and a need for careful messaging. But when PrEP is taken by women in many settings, these women are protected. Let’s remember, and act, on that.