Px Wire’s Take on 2017: #Onwards #UntilTheEpidemicIsOver

2017 promises to be a year of big changes, but how the political winds will touch the field of HIV is still unknown. Amidst the uncertainty, long hard work advancing HIV prevention is pushing frontiers all over the world from the lab to the clinic to the household medicine cabinet.

This issue of Px Wire, AVAC’s quarterly update on HIV prevention research, looks ahead at a host of issues we are watching in 2017. Are we confronting “Fast Track” goals with the sober analysis they demand? Will oral PrEP guidelines translate into programs and will programs meet people’s needs? What progress can we expect from studies on the dapivirine vaginal ring, various vaccine candidates or on broadly neutralizing antibodies, which are garnering so much press attention of late? Will global leaders embrace policies that ensure data gaps on key populations will finally be filled?

Check out AVAC’s round-up of these and other questions that we think will define the state of HIV prevention in 2017. And this issue’s centerspread extends the story beyond 2017 with an infographic showing the status of large-scale prevention trials through 2020.

AVAC Introduction to Long-Acting Injectables

A strategy that uses long-acting injectables is being tested now for treatment and prevention. Injected antiretrovirals that are being developed to remain effective for weeks or months could potentially simplify adherence. Our infographic explains the research underway and reviews some of the major questions that research must address.

Introduction to Long-Acting Injectables

This infographic details the process for developing long-acting injectables for PrEP and Treatment U=U.

PrEP Won’t Protect if it’s Priced Out of Reach

Kenneth is a 2015 AVAC Advocacy Fellow, hosted by HEPS-Uganda. He works with both grassroots communities and national level stakeholders in promoting health and the rights of people living with HIV in Uganda by advocating for consumer friendly policies. He’s currently the head of HEPS-Uganda’s advocacy program, and coordinates the Uganda Coalition for Access to Essential Medicines.

The cost of providing new tools for preventing HIV infections like oral PrEP is concerning. I hear cries about the sky-high prices of these new prevention options all the time. Unfortunately, after the lament, there’s little conversation about reducing these high costs and enabling access. Access is defined by 4 A’s: Affordability, Acceptability, Accessibility and Availability. Lose any one of them and you lose access – and impact – altogether. For anything and everything you ever wanted to know about PrEP, including information about costs as it becomes available, checkout PrEPWatch.org.

Globally, we have 37 million people living with HIV, but only 50 percent of these are enrolled on treatment. That’s despite the landmark study, HPTN 052, that showed early initiation of antiretroviral treatment in people living with HIV with a CD4 count between 350 and 550, not only improved their health but also reduced HIV transmission to HIV-negative partners by 96 percent.

There is a lot of public taxpayer’s money invested in research and development of new tools for preventing, and managing HIV. No doubt, a lot of innovation and brain power goes into the development of these products and I salute that work. But let’s not forget the ultimate goal of an AIDS-free generation. This can only happen if people, irrespective of their location, gender, race, sexual and political orientation, have access to affordable commodities.

The irony is once these products are out, few can afford them.

The latest prevention option, oral PrEP, has been adopted in guidelines, or is in the process of being adopted, by several countries, both middle and low income, as a prevention option for people at substantial risk HIV infection. However, there are already concerns that the cost of PrEP may be a barrier to access, and that’s partly the reason officials are dragging their feet as they consider adding it to their package of prevention.

Pricing PrEP is still underway, but looking at cost for the delivery of antiretrovirals for treatment may give us an idea. A July 2016 analysis of three ART delivery models in Uganda, published in the Journal of the International AIDS Society, showed that it costs $257 (facility-based model), $332 (a combination of community distribution and facility-based model) and $404 (community distribution model) to deliver ART annually per person. Like ART, the expectation is that most people taking PrEP will receive it for free, and if PrEP delivery costs about the same as ART delivery, this could be a big barrier to its access, especially for low income countries and populations at risk. Someone, somewhere, will have to pay, and $257 to $404 per person per year is quite a high cost.

As we prepare to deliver PrEP, we need to mirror the solidarity and teamwork exhibited when these products were developed. A multi-disciplinary collaboration between potential PrEP users, healthcare providers, government and funders should characterize how we make PrEP accessible to everyone who needs it.

In October, I attended the 2016 HIV Research for Prevention (R4P) Conference in Chicago. Being the only conference focused solely on biomedical HIV prevention, I was really looking forward to hearing new ways to address the access issues I highlighted above. Unfortunately, even here there was too little conversation about protecting public health interests over private commercial interests, which hike prices for new HIV prevention tools. I’m excited by the potential of PrEP to drive new infections down, but I worry that if the high cost of its delivery isn’t checked, PrEP may not realize this potential, especially not in the developing countries where it’s needed most.

To Be PrEP-ared for the Future, We Must Learn from the Past

Simon K’Ondiek is a 2011 AVAC Advocacy Fellow, hosted by the Nyanza Reproductive Health Society in Kisumu, Kenya. He is an HIV prevention research advocate with vast experience in the mobilization of communities to effectively engage with HIV prevention research and educating these communities on clinical trials around them.

Five years ago, I was an AVAC Advocacy Fellow. At the time, voluntary medical male circumcision (VMMC) was just beginning to be rolled out in sub-Saharan Africa. Kenya, where I live, was out in front of many other countries but even then, there were problems and challenges—getting information out about what the intervention did and didn’t do, encouraging adult men to take up the procedure, fostering support from female partners, spreading the word, persuading traditional leaders to take it up—I spent my fellowship working on these things. The year culminated in a documentary photography series, exploring themes centered on the knowledge, attitudes, communication and behavioral intentions of young men and women as VMMC rolled out in Nyanza Province. I also built an advocacy task force to work in the province and monitor the rollout.

All of that work was triggered by a joint recommendation in 2007 from the World Health Organization (WHO) and UNAIDS. It called for the adoption of VMMC as an additional strategy for HIV prevention in priority countries. A subsequent document, Joint Strategic Action Framework to Accelerate the Scale-Up of Voluntary Medical Male Circumcision for HIV Prevention in Eastern and Southern Africa, identified key success factors for VMMC. These include leadership and governance. Steadfast political support, if sustained through the entire process of implementation, results in much greater uptake. Engaging national champions (such as Prime Minister Raila Odinga who became one of the key faces of VMMC in the region), developing national policy and operational plans, and designating a spokesperson for the national program helped bolster VMMC uptake in Kenya. I focused on community-level work and can say from first-hand experience that rollout without comprehensive community engagement beforehand almost brought VMMC to its knees. Few men showed up at clinics to be circumcised, and local leaders balked at the idea of circumcision, considering it a foreign intrusion. Something had to change to address these and other challenges. And when communities and traditional leaders were more meaningfully engaged, the pace of rollout intensified.

So much of what I did in that fellowship is applicable today—especially when it comes to PrEP. Here is what I wish everybody knew, and would carry forward as they plan for the kind of comprehensive engagement that made VMMC a reality in Kenya.

For PrEP to be effective community-wide, it will take strong leaders, resources, and the engagement of multiple stakeholders, including health service providers, clinic by clinic. Pre-exposure prophylaxis, or PrEP, for HIV prevention involves the use of antiretroviral medications, known as ARVs, to reduce the risk of infection in HIV negative people. Oral PrEP uses a two-in-one antiretroviral (ARV) pill, containing the ARVs tenofovir and emtricitabine under the brand name Truvada. These ARVs were originally developed to treat people who have already acquired the virus. As a pill taken as HIV prevention, several trials have found PrEP to be safe and effective if taken correctly.

PrEP implementation shares similarities with other sexual and reproductive health products being implemented across sub-Saharan Africa. Contraceptives, like PrEP, are also safe and very effective if used. Adherence in both cases is essential. PrEP is highly protective for both men and women. Similarly, a condom also protects both men and women from contracting sexually transmitted diseases (STIs) and prevents unintended pregnancies. Voluntary medical male circumcision (VMMC), PrEP, condom use and other safe sex practices represent a range of options that can be used in combination and tailored to individual needs.

Numerous demonstration projects aim to establish the benefit of PrEP in the real world, outside the controlled environment of a clinical trial. As access expands, oral PrEP will surely face several challenges.

One example, a lack of awareness of available options, and lack of access to services adversely impacts the health of women, and children too. For PrEP implementation to be effective, administrators must overcome a similar lack of awareness and create access for those most vulnerable to HIV. Key populations need to know it’s available and effective. These groups, including sex workers, adolescent girls and young women, men who have sex with men (MSM) and discordant couples, must be engaged.

Consider this: in places where family planning needs are great, common explanations given for not using family planning methods include health concerns, side effects, poor access to products and services, partner reluctance and prohibitive costs. In some place, family planning challenges have been overcome by integrating HIV treatment and maternal and child health (MCH) services, training healthcare workers, engaging male partners, and continually building awareness of the availability of family planning services through TV and radio to reach a wider community.

It’s also important to note two other factors shaping local context: poor attitudes among health care workers hold back the uptake of family planning services, especially for adolescents and young women. And the involvement of men in family planning plays an important role, as women in many developing countries are not empowered to take family planning decisions on their own.

Therefore, successful PrEP implementation at the community level depends upon engaging those most vulnerable to HIV, and address these real-world challenges. They need to be aware of the availability, the side effects, the benefits. Unforeseen obstacles must be addressed as they arise to ensure successful rollout and uptake.

At the national level, we must operationalize PrEP guidelines and work with politicians to secure political will for a sustained delivery model. Well-coordinated community education and literacy programs are needed at the outset to explain PrEP and identify challenges such as stigma and the under-use of reproductive health services.

Government campaigns on TV, radio and posters, with support from local NGOs and local opinion leaders, should be considered. Such campaigns increase knowledge of PrEP, and influence social and cultural attitudes. Health care workers must be trained and provided with materials on PrEP as prevention, and their training must be integrated with reproductive health services to reach women and speed the delivery of PrEP to everyone who needs it.

As Kenya again leads in HIV prevention, this time with PrEP, we cannot repeat the mistakes of the past, which seriously hampered the roll out of VMMC. The potential public health benefits are enormous. There must be a pragmatic approach of integrating existing HIV prevention efforts, especially PrEP, into broader sexual reproductive health services. Overall, increasing PrEP access and acceptance requires effort to make sure those most vulnerable to HIV—including adolescents, sex workers and MSM learn about PrEP and can get it in a safe, culturally sensitive and cost-effective manner.

What’s New and What’s Needed: Updates in research results and advocacy

Welcome to our first post-US election update! Many of us, in the US and around the globe, continue to be moved, activated and concerned by the recent US election. We have been grateful for forums exploring how our work may be affected by various political scenarios, including this call on the future of Global AIDS Funding, hosted by GNP+. At the same time, we want to restate our long-standing and vigorous commitment to our ongoing work, which will continue with the same rigor as ever, in pursuit of our mission.

In that spirit, this update highlights recent developments in biomedical prevention research. Together they serve as a great example for why a pro-science, pro-research, pro-stakeholder engagement agenda is a non-negotiable necessity, irrespective of politics and political parties.

New basic science provides clues on cure and vaccines. Earlier in the month, two papers were published regarding new innovations in HIV prevention and cure.

A paper authored by Katharine Bar at UPenn and colleagues reported on the effect of the antibody VCR01 in people living with HIV. In these trials, people living with HIV stopped their antiretroviral treatment (ART) while receiving infusions of VRC01, a broadly neutralizing antibody that blocks the activity of many strains of HIV. The study measured the safety of VRC01 and sought to determine if it helped people control their virus while off treatment. Researchers compared viral “rebound” (the reappearance of virus in the body after ART is stopped) between people who received VRC01 and people who did not. Findings show VRC01 only slightly delayed viral rebound. This shows the value of the scientific research field in action, testing and narrowing the field of solutions until we hit the bullseye. VRC01 is also under study as a tool for HIV prevention in the ongoing AMP trials (HVTN 703/HPTN 081 and HVTN 704/HPTN 085), and a number of other antibodies are in various stages of both prevention and therapeutic research.

A paper authored by Dan Barouch of the Ragon Institute and colleagues looked at a strategy for a cure that combines a therapeutic vaccine with a TLR7-agonist. TLR7 is a protein that controls and activates human immune responses. This study looked at non-human primates (NHP) with SIV (the simian version of HIV). The study used the vaccine vector Ad26/MVA from Janssen Pharmaceuticals to instruct immune cells to recognize SIV, and the TLR7-agonist to activate those immune cells. This strategy tested whether the Ad26/MVA/TLR-7 combination would be able to marshal immune cells to eradicate SIV. In the study, non-human primates were put on ART immediately after infection. One group of NHPs received the vaccine alone, another received only TLR7, a third received a placebo and the last received a combination of Ad26/MVA and TLR7. All were then taken off of ART. Those that received the combination had the largest drop in SIV and the longest delay in viral rebound. There are a lot of caveats with animal models, but this finding could add to optimism for the scientific pursuit of an HIV cure. The Ad26/MVA vaccine vector is also being tested as a preventative vaccine, and a large-scale efficacy study of the regimen could begin in 2017.

Community mobilization on the DISCOVER trial of Gilead’s F/TAF as oral PrEP.

An article published on TheBody.com by long-time advocates Anna Forbes and Marc-André LeBlanc outlined the latest developments related to Gilead’s Phase III trial of the drug F/TAF for oral PrEP. The trial, known as DISCOVER, has raised concerns among advocates that stakeholder engagement has been insufficient. The study plans to enroll 5,000 participants from 92 sites across the US and Europe. Participants will be randomized to receive either daily TDF/FTC (Truvada), which is a proven prevention option approved by the US FDA for PrEP in 2012, or daily F/TAF, which is a different version of the drug combination that has been approved for treatment but the efficacy for prevention is unproven. Given the complex messaging of this trial—one that compares an approved option with an experimental one—community engagement over the course of trial planning and execution is imperative. The standards for stakeholder engagement, outlined in the Good Participatory Practice Guidelines, are designed to address this type of trial and should be met. While Gilead has engaged a limited subset of community stakeholders, a group of advocates, representing a range of organizations, submitted a public letter to Gilead on November 16 demanding substantial and meaningful improvements to the process of community engagement. This is the right thing to do and history has shown this process improves the chances for the trial’s success.

Decades of testing and research reflected in studies like these are doing the painstaking, instrumental work it takes to move us toward our goal, the end of AIDS. Let’s keep our eyes on the prize.

Achievements and Disappointments: From Cape Town to Chicago

Teresia is a seasoned advocate for gender equality and sexual reproductive health and rights, especially for HIV-positive women. She is passionate about promoting HIV prevention strategies that work for women and girls. Teresia was a 2014 AVAC Advocacy Fellow and a founding member of the Personal Initiative for Positive Empowerment (PIPE Kenya). She is the vice chairperson of ICW-EA and represents the region in the ICW Global International Steering committee. She is a counselor by profession and currently volunteering with ATHENA Network in community engagement on gender eqality and HIV.

In 2014, at the peak of my excitement as an HIV prevention advocate and an AVAC Fellow, the first Research for Prevention (R4P) Conference was held in Cape Town. I left that conference anxious but hopeful about a few things: The outcome of the FACTS 001 microbicides trial, the outcome of PrEP demonstration projects in different countries, how implementation in the real world would look, and the start of the much-talked-about ECHO trial that will answer key questions about whether certain hormonal contraceptives increase the risk of HIV acquisition.

In the time in between Cape Town and Chicago a lot has happened in all of these areas, and so much remains to be done.

A few months after leaving Cape Town, new findings came out about FACTS 001. There was no evidence of overall protection associated with the gel tested. Younger women were not correctly and consistently using the gel, and therefore were not protected.

Results from PrEP demonstration projects showed that discordant couples using oral PrEP had very low levels of HIV transmission – reducing the risk by up to 96 percent. More demonstration projects with different populations are currently underway and will answer questions related to implementation. In Kenya and Uganda, the open-label demo projects continue to record high adherence rates among discordant couples.

We know PrEP works but availability is limited. In most African countries, PrEP is not yet part of public health programs. In a few places it can be obtained at demonstration sites that target specific populations. Kenya and South Africa are the only African countries where Truvada (the brand name for drugs used as PrEP) has been approved and it is now available in South Africa’s public health system for certain high-risk populations. Regulatory applications have been submitted in Botswana, Lesotho, Malawi, Mozambique, Swaziland, Tanzania, Uganda and Zambia (see complete global map here).

“People at high risk of HIV are more likely to take PrEP if [they are] drawn out,” said Dr. Elizabeth Irungu of the Kenya Medical Research Institute who was in Chicago for R4P. Drawing out people at high risk means many things including outreach, reducing stigma, and using innovative approaches to overcome structural barriers such as distant or understaffed clinics, prejudiced service providers. It also calls for training health workers and strengthening health and community systems. We still don’t have PrEP guidelines in most countries; Kenya for example has made big strides in PrEP and other prevention tools, yet policy makers are yet to develop guidelines, which instruct health workers on how to administer PrEP. At R4P 2016, Kenyan policy makers promised to do so by 2017.

In the US, PrEP is widely available to those at risk. However, there are disparities in access there too: 70 percent of those accessing PrEP are men; although 75 percent of new infections are among people of color, only 25 percent of them are accessing PrEP. And the disparities go on and on. Communication campaigns should reach out to women and people of color who are at higher risk of acquiring HIV.

The discussion around hormonal contraception and the risk of HIV acquisition was filled with uncertainty in Cape Town. The World Health Organization (WHO) had issued a statement that women at high risk of HIV should be encouraged to use condoms alongside the hormonal contraceptive known as Depo-Provera. The uncertainty about Depo’s effect on HIV risk stems from conflicting and unclear observational data. Only a randomized controlled trial can resolve the question, “Do hormonal contraceptives like Depo-Provera increase the risk of HIV acquisition?” When ECHO was initiated advocates called for a four-arm trial but with not enough resources ECHO kicked off as a three-arm trial of Depo-Provera (or depo), a copper intrauterine device (IUD) and Jadelle (an implant). NET-EN, another injectable and potential fourth arm of the trial, was omitted from ECHO. What do we do in the meantime as we wait for ECHO results?

For me, the human rights issues are striking. Women considering Depo-Provera need accessible and complete information about this issue so they can make informed decisions. WHO is slow to respond to additional data about Depo’s potential for increasing risk and inconsistent in continued engagement with local communities in Africa.

Civil society organizations and advocates will continue to push for a mix of birth control methods and the funding to support it in all settings, including rural areas so that women will have a range of options to choose from. Engagement and consultations between WHO and advocates must continue. Conversations should be brought to communities; leaving no one behind. Most importantly, the conversation should be taken to the broader movement for sexual and reproductive health and rights (SRHR). All stakeholders should work and collaborate with sites that deliver reproductive health services, keeping PrEP access a high priority along with other SRHR services.

Sitting in a Chicago conference center, R4P’s home this year, I heard calls for innovation, with more and better tools that women can use and control. And leaders were calling for engagement across the biomedical frontier. “We need to work towards an HIV cure,” urged Ambassador Deborah Birx of PEPFAR, while also calling for the delivery and implementation of what we have. In short, Birx said we need to integrate programs, disseminate science, and engage communities meaningfully to shape the agenda for research and implementation.

Although there’s a lot that needs to be done to make Amb. Birx’s hope a reality, I’m more hopeful after Chicago than I was after Cape Town. Science continues to deliver – now it’s time for us as advocates, service providers, governments and funders to effectively implement what’s been delivered to us as we work towards new possibilities for tomorrow.

What If Young Women were Offered PrEP or PEP?

Maureen coordinates an advocacy project that aims at improving the participation of people living with HIV and key populations in the Global Fund and PEPFAR processes in Malawi. She is very passionate about HIV prevention efforts for young women and girls. Maureen was also a 2015 AVAC Fellow.

Let me start by posing these questions: how many young women are having sex in your community? How many of those are having it safely? And how many of those are having it consensually?

All these questions are coming alive as I type this, anticipating that the answers could be provided by the scientists who I rubbed shoulders with at the 2016 HIV Research for Prevention (HIVR4P) conference. HIVR4P is the only global conference that brings together researchers and community advocates from all over the world, in support of the cross-fertilization of work on HIV vaccines, microbicides, PrEP, treatment as prevention, and other biomedical prevention approaches. R4P provides a forum to discuss research findings alongside community experiences. This year the conference was held in Chicago, USA with almost 1,500 delegates in attendance.

About three weeks ago I came across a very disturbing story of a young girl who was raped by seven men. Chikondi (name changed to keep her identity confidential) is a 14-year-old girl who comes from a rural part of Salima District in Malawi. The son of the community’s traditional leader was celebrating his birthday. To show solidarity, community members on such occasions are expected to celebrate with the family. Such celebrations are usually conducted at night and are known as “Mchezo” in my local language.

On the night of the celebration, Chikondi and her younger sister attended the night party. Around 11pm, whilst the party was still going on, Chikondi and her sister decided to leave early. They were assured that it was safe for them to travel back home since the community was still awake. On the way home they met seven men who raped Chikondi, but she managed to identify one of the boys. The issue was reported to the traditional leader of the community who ruled that each of the seven men should pay 10 dollars. Out of that money 20 dollars was given to the parents of Chikondi as compensation and the case was closed.

When I heard the story my heart broke. I thought of Chikondi, I thought of the trauma and psychological torture she was going through. I asked myself, what if one of the men was HIV-positive? What if one of them had STIs? And then I thought: how many other young women in Chikondi’s community are being sexually abused? Maybe you have some answers. But I don’t. So many thoughts lingered my mind. And then for a minute, I asked myself, “What if post-exposure prophylaxis (PEP) was readily available and accessible in Chikondi’s community? Or what if pre-exposure prophylaxis (PrEP) was one of the HIV prevention interventions readily available to young women in Chikondi’s community? What difference would it make in Chikondi’s situation?

Unfortunately, this is far from the reality. Despite the fact young women and girls are continuously being subjected to sexual abuse that puts them at risk of HIV (not to mention host of other threats to mind and body), there are still limited options available when it comes to HIV prevention interventions. Condoms, which are not readily available, remain the only HIV prevention interventions available for young women in Malawi. Yet young women and girls don’t have the power to negotiate for safe sex.

On the other hand, our policy makers have taken a stand: In Malawi as a country, they say, we are not ready for interventions like PrEP.

After listening to numerous presentations and stories from different research experts and community advocates I have learnt that young women and girls are indeed at risk. There are over 7,500 young women getting infected with HIV every week. From the conference I have also learnt that PrEP works if taken every day. Currently, there are few countries where PrEP is now accessible to the general public. And my question is when will PrEP be available in Malawi? When will Malawi be ready for PrEP? If we are saying our girls don’t need PrEP then what are we offering them instead?

It is time to act. We cannot wait anymore. Not when our young women and girls are continuously being put at risk of HIV.

Moving Forward with PrEP and MSM in Africa: Next Stop Zambia

As PrEP begins to reach communities throughout the world, access to this groundbreaking HIV prevention medication cannot be taken for granted. In many cities and rural areas in Africa, PrEP is still a foreign idea instead of an exciting new approach that can save lives. This blog is the latest in our series of updates on PrEP advocacy in Africa. This month, we are in Zambia and our focus is on a coalition focused on key populations (those considered to be at high risk for HIV), and it just kicked off its advocacy work.

While the gay community in the US strongly advocates for PrEP and backs education campaigns to reach those at high risk of HIV, the gay communities in African countries, and other places with gay populations that are mostly not white, have yet to show this kind of support and enthusiasm.

This has left a majority of Africa’s gay men without knowledge of or access to PrEP. And even those who do know about it are unsure what steps to take or what message to share with their friends. But the good news is—this is changing very rapidly. The voices of gay men in Africa are raising questions now about PrEP, creating platforms for advocacy, forming strategies for creating demand and working with national governments to develop guidance for implementation. Just last month the PrEP train stopped over in Uganda and Kenya where gay men in those countries came together to create an advocacy platform focused on rolling out PrEP to at-risk populations.

In October, PrEP advocacy picked up in Zambia. Friends of Rianka, Trans Bantu and Treatment Advocacy and Literacy Campaign (TALC) worked together, with support from AVAC, to convene a multistakeholder meeting on PrEP.

The meeting, which took place on October 10 in Lusaka, included different stakeholders from communities of men who have sex with men (MSM) and lesbian, gay, bisexual, trans & intersex (LGBTI) people. The participants discussed the current national context for rolling out PrEP for MSM in Zambia. The group identified the need to develop a strategy (with division of labor, resource needs, etc.) with a focus on raising awareness, creating demand and policy advocacy, all aimed at winning increased access to PrEP among MSM in Zambia. The meeting, also attended by government and donor agencies, presented an opportunity for the community to create an advocacy strategy that goes beyond PrEP and MSM, to one that touches on other biomedical interventions for HIV prevention within key populations in Zambia—a gap everyone in the room thought needed to be filled.

photo of the meeting

The group identified some critical steps for rolling out PrEP in Zambia:

  • Revise The 2017 National AIDS Strategic Framework (NASF) guidelines and align them with recommendations related to PrEP in Zambia, developed from this day’s consultative meeting.
  • Prioritize existing funding for key populations to support access to PrEP for MSM and LGBTI.
  • Use existing knowledge of PrEP to inform next advocacy steps. Advocate for PrEP uptake as an entry point for other services such as Voluntary Counseling and Testing (VCT).

After identifying these steps, a nine-person Zambia Key Populations Biomedical Advocacy group was formed and will carry out recommendations developed below:

  • Engage governments to support the uptake of PrEP
  • Collaborate with health service providers to develop a strategy for the provision of PrEP
  • LGBTI community in Zambia to set PrEP literacy as a top proirity
  • Consultations with key population constituencies in all of Zambia’s districts
  • Demand creation
  • Create PrEP champions who will act as PrEP Peer Educators

This group will be working in the coming days and weeks with the government and donor agencies to implement these recommendations. We are very excited to be supporting these initiatives, in partnership with amfAR, and led by African gay men.

We know that when people have information and knowledge about an HIV prevention tool, they take action. Early in the epidemic, the government and donors supported prevention efforts in the MSM communities around condom education. PrEP is no different. African gay men need to be provided with information that is culturally sensitive. New prevention campaigns, targeted just for them, are needed. They need the financial and moral commitment of the society around them, to support efforts to educate their communities about all available prevention options, including PrEP.

Often this work involves the patience to move one step at a time, sometimes falling back before heading forward again. In Zambia, a group of dedicated MSM activists just took several long strides forward all at once, and we look forward to being there as they round the corner, bringing PrEP with them to Zambia’s gay community.

Stay tuned.

HIVR4P: “Where Are the African Americans?”

Rob Newells is an Associate Minister at the Imani Community Church in Oakland, California, and serves as Executive Director for AIDS Project of the East Bay—a community-based organization serving the most vulnerable and marginalized communities in Alameda County since 1983. He was a 2011 Fellow of the Black AIDS Institute’s African American HIV University Community Mobilization College and has been a biomedical HIV prevention research advocate with AVAC’s US PxROAR group since 2012.

I looked around a conference room at HIVR4P and said to myself (and my Facebook friends), “Where are the African Americans?” Chicago has lots of African Americans, but this research-heavy conference was lacking in community representation. (Shout out to the folks like Matthew Rose from NMAC and Noël Gordon from HRC, and also an R4P plenary speaker, doing the very necessary national and international policy and advocacy work, but as one colleague put it, “Who represents black and brown men in the US?”) African biomedical HIV prevention research advocacy is strong. African American research advocacy could use a boost.

It’s natural for black men working in HIV to attend conferences geared towards community like National African American MSM Leadership Conference on HIV/AIDS and Other Health Disparities (NAESM) and the United States Conference on AIDS (USCA), but we also need be in those spaces that are geared towards the researchers who are developing new strategies that will eventually be implemented in our communities. There’s no reason for the disparities in PrEP awareness between black people and white people that exist today.

Advocates like those I joined in being honored with receiving the 2016 Omololu Falobi Award for Excellence in Biomedical HIV Prevention Research Community Advocacy, have been trying to get the word to our communities since before the US FDA approved Truvada for PrEP in 2012. We’ve got to stay ahead of the curve.

After a few years of relative calm on the HIV prevention research front, the San Francisco Bay Area is now looking at four major studies, which will be recruiting participants at the same time (more info below). The HIV epidemic in the US disproportionately affects black MSM, which means they are also targeted for enrollment in these studies. And the way gentrification has affected demographics in San Francisco (black people made up 13.4 percent of the population in 1970, down to less than 6 percent today), black men 15 minutes across the bay in my hometown of Oakland which is still about 27.3 percent African American (down from 46 percent in 1980) will be heavily recruited to participate in these studies. And the data keep telling us that black men have lower health literacy than other groups – not only in the community, but also on the front lines of the HIV workforce as noted in the Black AIDS Institute’s 2015 “When We Know Better, We Do Better” report.

Black men need to be in the rooms where scientists are discussing their research because it affects us directly. As advocates, it’s our responsibility to help our communities understand sometimes hard-to-understand clinical trial results and their implications. We can’t wait to get to 1-in-2 black MSM diagnosed with HIV before we start taking HIV in black communities seriously.

On a community level, we have to talk about sex and sexuality. The young people who shared their experiences during the symposium “How to Talk to Me About Sex” told us that they learn from their friends and social media and the Internet. Not talking about sex responsibly in community is not helping prevent STIs, pregnancy, or HIV infections.

HIVR4P is focused on HIV prevention research, and black men from the United States were vastly underrepresented. The things being studied today may be the new prevention tools we’re rolling out in our communities in a few years. We have to be talking about them now. And for those of us who act as resources for clients and friends, we need to be able to answer (and ask) questions about these studies. Who should participate? Why would anyone participate? Which study might be the right study for you?

Locally, we have the AMP Study and Gilead’s F/TAF for PrEP study recruiting now. A long-acting injectable study is ready to start recruiting. And we expect to see a new vaccine trial start up in 2017. And California is a Medicaid expansion state, so most people already (theoretically) have access to Truvada for PrEP covered by their health insurance plans. You don’t have questions?

Conferences like HIVR4P are where advocates can engage in conversations with colleagues and researchers from around the world. It’s where we come to understand the issues around various biomedical HIV prevention methods and start to think about how to share what we learn with our communities. (Dennis Burton’s plenary presentation on “Progress in Neutralizing Antibody-based HIV Vaccine Design” helped me understand bNAbs for the first time since I started paying attention to them at HIVR4P2014 in Cape Town.)

I recognize my privilege. Not everyone gets awarded scholarships to attend meetings like HIVR4P. Fortunately, the conference sessions are available online for everyone to access. The Chicago Black Treatment Advocates Network hosted an AIDS2016 Report Back on the South Side at the same time as HIVR4P. (I missed a symposium session to Uber over for a couple of hours.) However we get the information, we have to improve our health literacy in general, and our biomedical HIV prevention research literacy specifically. Sharon Hillier’s plenary talk on “Rings and Things” is a reminder that Truvada for oral PrEP is just the tip of the iceberg. There are new options coming. We have to be ready. It’s past time for more African Americans to get with Solange and pull up “A Seat at the Table.”

“This sh*t is for us… Sometimes we don’t trust… This sh*t is for us.”