In Their Own Voices: South Africans at High Risk of HIV Infection Demand Access to PrEP

John Mutsambi is a 2015 AVAC Fellow, hosted by TB/HIV Care in Cape Town. He is a community engagement specialist whose experience spans two decades working on HIV prevention and implementation. John has developed and managed community engagement programmes at clinical trial sites in six countries in eastern and southern Africa, including IPM’s Ring Study, HPTN 052 and BufferGel and PRO 2000 microbicide studies. As a 2015 Fellow, he’s working to speed up regulatory approval of Truvada as PrEP, codify the Southern African guidelines for PrEP into policy and create demand for PrEP.

“Who knows my HIV prevention needs, fears and experiences better than myself?” asked a young woman at a recent community event in Cape Town. She considers herself at high risk of HIV infection. And I agree with her and others at risk that they know their sexual situation better than anyone. It is only when we mentally put ourselves in their shoes that we gain a sense of what they are going through. Our ears need to be awakened to hear what people are saying. This awakening should move our hearts to action. But what prompts me to make this statement?

As an HIV prevention advocate who works closely with a host of people from different walks of life, it touches the deepest part of my life to hear those at high risk of HIV calling for access to scientifically proven HIV prevention options. One of these options is pre-exposure prophylaxis (PrEP), an evidence-based biomedical intervention to prevent HIV infection. PrEP is an exciting new HIV prevention tool, which if taken correctly and consistently, can prevent HIV infection by more than 90 percent.

For most of the voices demanding PrEP, the existing interventions aren’t sufficient. Even though they may not be heard at the moment in South Africa, these voices are very clear and they carry an emotional urgency – one that calls for attention. Their demand is expressed in different forums such as community meetings, informal dialogues and in conferences, to name a few.

On 8 August, for instance, I jointly organized a large community event with other civil society partners to celebrate Women’s Month in Cape Town. Here, women expressed a great demand for PrEP. “How and where can we get PrEP?” asked some of the young women. The demand for PrEP, as I have seen, increases proportionally with the level of awareness created.

Also at the 7th South African AIDS Conference held in Durban in June, young women demanded that PrEP be made available without any further delays because it is the only HIV prevention tool that they could initiate without a partner’s consent. They emphasized the need to be involved in decision-making when planning for the rollout of PrEP and asserted “Nothing for Us without Us”.

To effectively access PrEP, the young women pointed out that health workers’ negative and judgemental attitudes towards them should change. “We recommend that youth-friendly clinics be established and that health staff be sensitized about the unique needs and problems that young people face,” said one of the young women at the conference.

Sex workers have also expressed a high demand for PrEP. Some have even stated their support for the possibility of a long-acting injectable PrEP option and the ongoing clinical trials. It is this expressed demand for PrEP that collectively spurs prevention advocates into action.

By citing only a few key groups above, the reader should not assume that these are the only people demanding PrEP. It is in fact different people who perceive themselves to be at high risk of HIV infection whom we talk to during outreach who are eagerly waiting with anticipation for its availability.

In spite of all this, the people’s wishes have either been drowned out by voices of power or the politics of inaction and even complete silence. Nothing is more disheartening today than knowing that PrEP is here, and yet so far unavailable due to regulatory and other hurdles. We must heed the advice of Woodrow Wilson, the 28th President of the United States of America, who advised that, “The ear of the leader must ring with the voices of the people.”

Getting PrEP into people’s hands so that they can prevent themselves from HIV infection should be placed high on the HIV prevention agenda of African countries if we are to drive down the HIV incidence. Of course, PrEP won’t work in isolation of other options. It should be rolled out as part of combination prevention, along with male and female condoms, prevention of vertical transmission, syringe exchange and harm reduction, medical male circumcision and treatment, among others. Scientists, sponsors of PrEP trials and other stakeholders have already put substantial resources into this research to give us the evidence of its efficacy. What baffles me now is the delay in turning the research results into policies, and then policies into services – more so when the demand for the prevention tool is so apparent.

Oh! this reminds me of the other day when I heard people arguing that there aren’t enough resources to roll out PrEP. They said rolling out PrEP would divert scarce resources from ARVs, which are already in short supply in South Africa. Believe me, rolling out PrEP is not going to be easy in any country. It requires political will, advocacy, generation of domestic sources of funding, continued external resource mobilization, continued donor contributions and commitment, and more importantly, investment based on decisions that are not driven by sentiments but rather evidence.

Advocates and NGOs want to support the Department of Health (DoH) in planning and executing such a rollout. Some NGOs that are already providing comprehensive HIV prevention services to different key population groups in South Africa have suggested that the DoH could take advantage of these existing structures and services to understand how best to integrate PrEP into existing prevention packages. This technical assistance would support the DoH in putting in place structures in district and provincial hospitals to scale up PrEP rollout.

I do not see PrEP competing with, undermining or replacing the availability and promotion of other existing HIV prevention methods, including treatment. In fact, the introduction of PrEP would complement existing strategies and give people a wider choice of options. PrEP would also avert new infections and subsequently result in less need for treatment, putting countries on a more feasible path to UNAIDS targets of ending AIDS. Also, PrEP should not lead to drug shortages. As established by GroundUp, the South African community newspaper, drug stockouts in the country have predominantly been due to poor management not a lack of resources.

How can HIV prevention advocates help PrEP become a reality in South Africa? We need to continue supporting the people’s demand for PrEP. We must urge the Medicines Control Council (MCC) of South Africa to quickly approve the application for Truvada as PrEP. (Truvada is already approved as a treatment drug in South Africa.) And we must continue advocating for extended clinical guidelines for PrEP. This cannot be done without mobilizing resources internally and externally and by civil society working closely with national and provincial policy makers to map the landscape and PrEP agenda together. As we do this, we need to ensure communities are provided with adequate and accurate information about PrEP. What an opportunity we have to make prevention a reality for some of the most at-risk individuals and groups! We must seize it.

From Cartoons to Charts, Learn About PrEP for HIV Prevention

This post first appeared in 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 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 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!

The Real Barriers to Care: What We Truly Need to Combat HIV

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:

  1. People under 18 need to be actively included and addressed in trails that are fortifying PrEP access nationally and internationally.
  2. The creation of medication assistance programs for young people who are on their parent’s health insurance, but don’t want to use it because of the physical, emotional, or economic risks tied to depending on their biological families.
  3. Same day initiation of PrEP, or getting folks who express interest on the pill as soon as possible.

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.

Mitchell Warren on HIV Prevention Research

This article first appeared on

Fred Schaich of IFARA spoke with Mitchell Warren, executive director of the AIDS Vaccine Advocacy Coalition, about HIV prevention research presented at the 8th IAS Conference on HIV Pathogenesis, Treatment and Prevention in Vancouver, Canada. Much of that research confirms what we already know, Warren said. Treatment as prevention works when linked to a serodiscordant relationship, but more prevention services are needed outside such relationships. The Kenyan COUPLES study provides one avenue by combining treatment of the HIV-infected partner with pre-exposure prophylaxis (PrEP) for the uninfected partner to address transmission events not linked to that relationship.

Warren pronounced 2015 “a really important turning point” because research proved that treatment upon diagnosis, coupled with PrEP for anyone at high risk of infection, is the best way to prevent the spread of the virus. Another important development is the involvement of industry in vaccine studies, he said.

However, antiretrovirals alone cannot end the AIDS epidemic, Warren believes. Criminalization and stigmatization of HIV infection must end so that both prevention and treatment services can be implemented. “Even with the greatest antiretroviral, even with the greatest vaccine strategy, if we don’t address those fundamental issues, we do not end this epidemic,” he concluded.

Watch the video to learn more:

2016 amfAR HIV Scholars Program Announcement

amfAR, The Foundation for AIDS Research and the Center for LGBT Health Research at the University of Pittsburgh Graduate School of Public Health are announcing continuation of the amfAR HIV Scholars Program: a training program for junior investigators from low- and middle-income countries who are interested in conducting HIV research among gay men, other men who have sex with men (MSM), and/or transgender individuals (collectively, GMT). Applications due date is 17 September 2015 at 5:00 PM EDT.

Funding opportunity: ethical, legal and policy issues in HIV research with key populations

This announcement encourages empirical and conceptual research projects in relation to research studies or program implementation for HIV or associated co-morbidities affecting one or more of the following: men who have sex with men; people who inject drugs; people in prisons and other closed settings; sex workers; transgender people or adolescent girls and young women at high risk of HIV acquisition or who are living with HIV.


Devex recently published Right things, right places, right targets — right now, an article by policy staff at amfAR, AVAC, Elizabeth Glaser Pediatric AIDS Foundation, IDSA and ONE, calling on the US President’s Emergency Plan for AIDS Relief (PEPFAR) to set new treatment and prevention targets. The article notes that the last PEPFAR targets, which were met ahead of schedule, expired in 2013.

Why is this important, when UNAIDS just announced that 15 million people are now on life-saving antiretroviral treatment? Isn’t the global response getting there? Although many things contributed, it is not insignificant that “15 million people on ART by 2015” was a target. Just as it is not insignificant that targets supported two biomedical prevention methods— voluntary medical male circumcision and prevention of mother-to-child transmission of HIV. Without these targets, it is highly unlikely that PEPFAR would have quadrupled the number of medical circumcision procedures it supported or been able to announce the millionth baby born HIV-free.

As AVAC said earlier this year targets matter, particularly prevention targets, which too often lack precision. Targets need to be resourced, audacious, achievable, measurable, accountable, politically supported and a collective priority—see Prevention on the Line for our “Anatomy of A Target” infographic and an analysis of targets that have worked in the past.

Right things, right places, right targets— right now makes the point that the time for new targets is now with the upcoming adoption of the new Sustainable Development Goals (SDGs) in September—Transforming Our World: The 2030 Agenda for Sustainable Development. The Devex article warns:

  • For PEPFAR targets to be absent from these discussions is a glaring omission and a missed opportunity — particularly in light of the program’s transformative role in improving the global health landscape and how integral it will be to any future HIV and AIDS successes.
  • There is still time to fix this problem, but the clock is ticking. It is time for PEPFAR and the White House to establish new treatment and prevention targets to guide the years ahead. These targets should be announced ahead of September’s UN meetings, so that PEPFAR’s vision can be included in and help shape the global dialogue. Every week and every month that goes by, we risk losing momentum. And in the fight against AIDS, we have no time to lose.

As world leaders meet in New York in September, it would be inspiring and powerful if PEPFAR provided the leadership it so often has provided in leading the way.

Injectable Options and Preventable Confusion: An update on the pipeline of antibodies, long-acting ARVS and vaccines

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.”