Support AVAC on Giving Tuesday

Tomorrow, November 29, is Giving Tuesday. Two days after that, December 1, is World AIDS Day. AVAC is writing to you today to ask for your support to help us keep doing what we do best—advocating for comprehensive HIV prevention to help end the epidemic in our lifetimes.

A new UNAIDS report, released in advance of World AIDS Day, tells us this work is urgently needed. You can count on us to call attention to key findings and follow-up actions this week and in the year to come, just as you can count on us to be a clear, consistent and uncompromising voice for human rights, sexual and reproductive health, and robust investment in the AIDS response from research to rollout.

These voices are as important as ever. We hope you’ll support us in raising ours so that the progress we’ve made is sustained, and the work ahead is not derailed.

As part of Giving Tuesday, a global day dedicated to giving back, we ask you to consider supporting AVAC’s work in one or more of the following ways:

Donate: Visit www.avac.org/donate.

Amazon Smile: Shop at Amazon.com? Visit smile.amazon.com and select AVAC as your charity of choice and a portion of your purchase price is donated to AVAC—at no additional cost to you!

US Combined Federal Campaign: If you are a US government employee, support our mission through the Combined Federal Campaign, CFC #12308.

Help us celebrate what we’ve accomplished together and ensure that this progress continues!

Microbicides and Gender Project

Under the Preventive Technologies Agreement supported by the US Agency for International Development, FHI 360 implemented two projects designed to increase understanding of the gender issues likely to affect women’s microbicide use. Findings, including the role of male partners, will inform the future introduction of a microbicide product. Resources developed under these projects are now available at the FHI 360 website here.

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.

Standing Together: AVAC statement on the US election

For the past 21 years, AVAC has advocated for a comprehensive, rights-based response to the HIV epidemic that respects the choices and the dignity of all people. In recent years, science, activism and political will have brought us within striking distance of ending HIV in our lifetime.

The results of this week’s US election could imperil this progress. Racism, xenophobia, sexism and homophobia place all people at risk. Hatred is devastating and dangerous for personal and public health. Love and action are the antidote to hate and the ammunition for a response that protects human rights and continues the progress that has been made towards securing health for all people.

AVAC is committed to action, and we will remain vigilant in our efforts to protect those rights and advance an agenda for global health and HIV prevention. We are committed to fighting for and with allies within the US and around the world who are understandably deeply concerned about the implications of a Trump presidency. We are committed to working together to define a truly inclusive and intersectional movement that protects open borders, women’s right to choose, the rights of all people to love and live as they choose without fear of violence, and that dismantles racism and xenophobia every day.

AVAC embraces the freedom and accountability all citizens have under a democracy. We will seek to work constructively with the new administration. But on no account will we compromise on the hard-won rights that form the basis of a vibrant, inclusive and just society.

We are proud to be part of the lineage and living movement of AIDS activists and advocates who used every conceivable strategy to secure access to medications and save lives. Today these issues include continuing US funding and leadership for the global AIDS response, protection of the Affordable Care Act in the United States, funding for the National Institutes of Health—and much more. These health-related issues sit within a larger social justice agenda that we embrace and support. The tools are as powerful as ever. We are as powerful as ever. We will not give up.

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.