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.”

Who do you love? Finding treasure at the last day of R4P

Greetings from the last official day of R4P 2016! It’s been a week of conversations, presentations, celebrations and—sometimes—consternation. And yes, it’s been a lot of words. New terms, familiar ones and the occasional Greek character (we’re talking to you α4β7 integrin).

Speaking of ancient Greek and also words: did you know that “treasure” and “thesaurus” share a common Greek relative? Thesaurus originally meant storehouse and treasure. From that, it was borrowed for the usage current today: a storehouse of words.

However, at the end of any gathering of this dynamic, dedicated field, what becomes clear is that the treasures are not the words but the people. The friends, fighters, thought leaders who propel this work forward. For our final update from the final day of HIVR4P, we offer you a round-up of (inter)national treasures.

Treasure 1: The adolescent girls and young women of western Kenya

Yesterday morning Kawango Agot (IRDO) presented data from a study in western Kenya aimed at understanding who adolescent girls and young women are having sex with—and why. This work is part of Kenya’s DREAMS initiative. Supported by PEPFAR, the Bill & Melinda Gates Foundation and private sector partners, DREAMS is a multi-country effort aimed at reducing incidence in adolescent girls and young women by 40 percent by 2017. Success depends on identifying and reaching those girls and women most likely to acquire HIV—and to understand how and why they are at such high risk. The data from Agot’s presentation may not be not the last word, but it is a stirring example of research that clarifies the lived realities of people who need HIV prevention.

Young women and adolescent girls reported having sex because they wanted chips (French fries) or because they wanted someone to give them a ride. They said that they had sex for money and for prayers, which they hoped would help them to pass exams. Fifteen- to nineteen-year-old girls who were in school but lacking one or both parents reported that their teachers were the only men with whom they sometimes used condoms. Every column and cell of Agot’s slide contained a world. It is a world we all have to work together to imagine differently. We start this effort by recognizing how invaluable, beloved and needed these adolescent girls and young women are. They are resilient, resourceful, forthright—and urgently deserving of a world where they wake every day to a reality that treasures their young lives.

Treasure 2: Young African men making the decision to get circumcised

Thursday brought insights into the decision-making paths that men in sub-Saharan Africa travel before undergoing voluntary medical male circumcision (VMMC). Tremendous progress has been made in rolling out VMMC in priority countries in the region. Continued success depends on acting on the kind of information presented today. Karin Hatzold (PSI) presented market research conducted by IPSOS that helped generate an understanding of how men make the decision to undergo VMMC—and how long this decision takes. As Hatzold described, an average of two years and three months passes between the time that a man becomes aware of VMMC and decides to undergo the procedure. These and other data were used to inform a strategy to create demand in specific target groups of men in Zimbabwe.

Later that day, Bertran Auvert of the French National Institute of Health and Medical Research (INSERM) reported on a “short-time” intervention designed to increase uptake of VMMC in Orange Farm, South Africa. The site of the first randomized trial to show the impact of VMMC, Orange Farm had relatively stable prevalence of VMMC between 2010 and 2015. Since population-level impact depends on coverage, Auvert and colleagues designed a short, household-centered intervention and piloted it in 983 households in one site within Orange Farm. The intervention brought VMMC prevalence up from roughly 50 percent to 80 percent—a finding that supports further investigation of this approach. Why is coverage so important? John Stover (Avenir Health) gave a presentation on the estimated number of HIV infections averted by the rollout of VMMC in ten priority counties in Kenya. By 2015, over one million Kenyan men had undergone the procedure. Three different modeling groups calculated the number of infections averted—and all came to the same conclusion: by 2015 VMMC averted 5 percent of the HIV infections that would have happened in that period. Stover reported that the impact, and numbers of infections in both men and women that are averted by VMMC, only increases over time—a potent reminder of the need to pursue ambitious VMMC scale up as part of combination prevention.

None of this would be possible without the boys, young and adult men who undergo the procedure. It is a profound personal choice and one with tremendous impact on the effort to end AIDS. We treasure you.

Treasure 3: The CAPRISA 256 Antibody

“It’s a South African national treasure,” remarked a researcher to Penny Moore (University of the Witwatersrand) about CAP256, a broadly neutralizing antibody isolated from a South African living with HIV. Moore—who is an absolute treasure of lucid, engaging and enthusiastic information about all things antibody—described new insights into how CAP256 can show us how broadly neutralizing antibodies develop. We won’t seek to replicate her explanation in detail—check R4P for the webcast—but it appears that CAP256 is elicited by a rare group of HIV viruses that have holes in the sugary glycan shield that makes up most of the virus’s outer covering concealing key parts of the viral anatomy. (Antibodies emerge or are elicited by the parts of the virus that the immune system is able to “see”. The antibody then binds to that specific part of the virus. Many antibodies bind to HIV without impeding it. But some antibodies target hidden regions of HIV that may only be exposed for briefly when the virus is binding to a cell. These kinds of antibodies can neutralize and block HIV activity.)

Treasure 4: Omololu Falobi Award Winners

The fifth Omololu Falobi Award for Excellence in HIV Prevention Research Community Advocacy was presented as part of the closing. The award is given in memory of Nigerian activist Omololu Falobi. Falobi is remembered by friends and fellow advocates as a talented journalist, an activist for social justice, an advocate for prevention research and a son of Africa who worked tirelessly to ensure Africans were taking ownership of their own HIV care and prevention. Since 2008, the award has been presented in his memory as an ongoing legacy to recognize his commitment and lasting contributions to HIV prevention research advocacy, and to honor those who follow in his footsteps. In a break with tradition, on the 10th anniversary of Falobi’s passing, the honor goes not to an individual, but the prevention advocacy movement. The 2016 award celebrates 85 advocates from 19 countries, all nominated by their peers in the field. These advocates represent thousands who are part of the movement that has helped fuel the great progress the field has seen over the last decade. Profiles of the 85 honorees are available online at www.avac.org/falobi.

Treasure 5: Ward Cates

We probably would have started this list with Ward, a beloved and sorely missed friend, colleague, mentor and advocate who passed away earlier this year. But Ward would have argued to put young African women first—the way he always did in his work as a researcher dedicated to advancing the sexual and reproductive health rights of all women and girls. And then he would have told us that you can’t just talk about the women—that men matter too. And we agree, as the list reflects. And then he probably would have wanted us to highlight the work of a younger investigator emerging as a thought leader in the field. So we did that too. Not stopping there, Ward would surely have urged us to recognize the critical role of advocates in shaping the HIV response. And then, and only then, might he have allowed us to celebrate him, as two long-time colleagues and friends, Mike Cohen (UNC) and Helen Rees (WRH), both did in talks at the conference’s closing session. In a way, this whole list is for—and because—of you, Ward. You taught us who and what to treasure. We will always treasure you.

Check out all the webcasts online—and stay tuned for future updates as we unpack our bags and all the data and discussions from Chicago!

Debate This: What do HIV prevention and elections have in common?

In a baseball-obsessed town (see Monday’s round-up) there was competition for TV viewers last night in Chicago as millions of people, including many conference-goers, watched the third and final debate between the two candidates vying to become the next US President. What do political campaigns and HIV prevention have in common? Read on for our (non-partisan) thoughts!

Lesson One: Tell a story, make it personal.

Politicians, advocates and parents—these are all groups that know the power of storytelling. Wednesday’s plenary session featured Noël Gordon Jr. (Human Rights Campaign) who told his unique story of getting on PrEP. He also shared his observations from working with gay men and transgender women, he talked about how their attitude toward HIV prevention, the threats to uptake and what opportunities we have to succeed. In advocacy, the best stories are the ones that (re)connect people to the issues. Gordon showed statistics on who is using PrEP in America—and the racial, age and gender demographics of PrEP users do not match those of people most at risk. Stigma also remains a huge issue.

Also in this plenary session, and available via webcast: two excellent research updates—Dennis Burton (Scripps Research Institute) on broadly neutralizing antibody-based vaccine design and Sharon Hillier (Microbicide Trials Network) on the state of the microbicide field.

Later that morning in the Advocates’ Corner, four advocates—Chilufya Kasanda, current AVAC Fellow at the Treatment Advocacy and Literacy Campaign (Zambia), Chamunorwa Mashoko, a leader of the Advocacy Core Team in Zimbabwe, Morenike Upkong, founder and leader of the Nigerian HIV New HIV Vaccine and Microbicide Advocacy Society and Amaka Enemo, current AVAC Fellow at the Heartland Alliance in Nigeria—shared personal stories about empowerment, advocacy and being human. All participated in a training for advocates earlier this year conducted by The Moth, a US-based organization focused on the art and craft of storytelling. Check back at avac.org to see video from their stories later this year.

Lesson Two: Exercise choice, give consent, show zero tolerance for sexual violence.

Some of the story lines in the American election have been a potent reminder of the fundamental right that all people, women and men, have to exercise choice about their bodies. In her plenary, Sharon Hillier (MTN) showed data that underscored the importance of full, free choice. Among women under 21 in the ASPIRE trial of the dapivirine ring, overall use was very low. But among women in this age range who were invested in using it—indicated by the amount of dapivirine still remaining in used rings, drug levels in samples, and self-report—use levels were stronger. And when they did use it, they were protected. Hillier reported analysis from the ASPIRE data indicating that the ring, used consistently, reduced risk by up to 84 percent compared to women under 25 using a placebo ring. This information complemented findings, also from ASPIRE, presented by Thesla Palanee-Phillips (WHRI) at the Tuesday press conference (and on the conference program today) that found that intimate partner violence—which can be physical and psychological—impeded adherence among ASPIRE trial participants. In this election and prevention season, it bears repeating: no biomedical prevention strategy will eliminate the need to prevent and address sexual, psychological and physical violence against women, sexual minorities and all people under threat because of how they live or what they do.

Lesson Three: Look who’s talking (or being talked about).

Sometimes the candidate who seizes the spotlight is campaigning for the next election. HIV prevention, like American politics, can gravitate towards the next big thing, be it a vaccine candidate or a presidential hopeful. The relatively untested is also relatively untarnished—and it can inspire hope for major change. Much of the vaccine discussion was not on the candidates now in efficacy trials but rather on candidates in earlier phases of development. On Tuesday, Chris Parks (IAVI) discussed the results of a trial in non-human primates of a vaccine that uses Vesicular Stomatitis Virus (VSV) as a vector. VSV is a replicating vector: a virus that has been disabled so that it doesn’t cause disease or carry risk but does have the ability to copy itself. It is thought that replicating vectors could prompt strong and sustained immune responses.

Later on Tuesday, Hanneke Schuitemaker from Janssen said that a decision is expected as early as the 4th quarter of 2016 about whether to move forward with a three-part vaccine strategy known as Ad26/gp140/MVA, which is currently under development in collaboration with a number of organizations including the HIV Vaccine Trials Network (HVTN), International AIDS Vaccine Initiative (IAVI), the US Military HIV Research Program (USMHRP) and Beth Israel Deaconess Center.

Interest in next-generation candidates also showed up in discussions of long-acting antiretrovirals, which could be used for both treatment and prevention. Data were shown on a new compound known as EFdA, which is in early animal studies, and on cabotegravir, the candidate moving toward possible efficacy trials in 2017. Politics remind us—don’t discount or count on any single candidate to get the job done!

Lesson Four: Money talks.

At an afternoon session, we heard that money for HIV prevention R&D has remained essentially flat for over a decade. These data come from a new report, HIV Prevention Research & Development Investments, 2000–2015: Investment priorities to fund innovation in a challenging global health landscape, from the Resource Tracking for HIV Prevention R&D Working Group, which AVAC leads. Read more on the new data in our blog post here.

Lesson Five: People in power can and must listen to and be guided by people “on the ground”.

Who are politicians or trial site staff responsible to—and dependent on—for success? The people in the communities in which they work. Without collaboration, there is no change. No engagement, no chance of making real progress. This is recognized across the field—and there’s expanding data on just how to engage. This contribution to the field is coming from widespread use of the Good Participatory Practice Guidelines (GPP) framework, which has been mentioned throughout the conference. In a presentation by Kenyan researcher Jane Ng’ang’a from the KAVI Institute of Clinical Research, she described how KAVI evaluated and improved its engagement plans using GPP. She credits the GPP framework for fostering community understanding and genuine support for the research. AVAC is proud to be the home of an online course on GPP—be sure to subscribe to the Advocates’ Network for announcements of when the next course will run.

When scientists work with (or as) advocates, or when politicians serve as (or team up with) activists, great things can happen. So one of our favorite moments of yesterday’s dialogues came at a “Meet the Experts Session”. Discussing their respective presentations, antibody expert Dennis Burton, and Noël Gordon, expert on the real world experience of people whose lives are affected by HIV in the US, realized they needed to connect. Business cards were exchanged—and perhaps the next prevention revolution was born.

For those on-site today, be sure to check out the final sessions at the Advocates’ Corner and grab some extra materials to take home! Thursday’s sessions include:

  • 10:00am – 10:30am: PrEP implementation in Chicago’s STI clinics
  • 12:00pm – 1:00pm: “It’s too complicated for them”: Service providers as gatekeepers to PrEP information and access

For the latest from the conference follow in real-time on Twitter and check out meeting coverage on aidsmap. The daily rapporteur summaries also provide report-backs on the conference. Missed a session? Visit here to see the webcasts as they become available.

HIV Prevention Research & Development Investments, 2000–2015: Investment priorities to fund innovation in a challenging global health landscape

This annual accounting of funding for biomedical HIV prevention research tracks trends and identifies gaps in investment. In 2015, reported funding for HIV prevention R&D decreased from US$ 1.25 billion in 2014 to US$1.20 billion. However, overall funding has remained essentially flat for over a decade. While investments towards research for preventive vaccines and female condoms increased from 2014 levels, investments towards microbicides, PrEP, TasP, VMMC and PMTCT declined.

HIV Prevention Research & Development Investments, 2000–2015: Investment priorities to fund innovation in a challenging global health landscape (1-pager)

This annual accounting of funding for biomedical HIV prevention research tracks trends and identifies gaps in investment. In 2015, reported funding for HIV prevention R&D decreased from US$ 1.25 billion in 2014 to US$1.20 billion. However, overall funding has remained essentially flat for over a decade. While investments towards research for preventive vaccines and female condoms increased from 2014 levels, investments towards microbicides, PrEP, TasP, VMMC and PMTCT declined.

Not To Be Missed: New report on funding for prevention research

The span of a decade—that interval that’s neither too long nor too short to bring innovation—is one that’s often used in the HIV prevention research space, usually to convey optimism. Back in 1997, then President Bill Clinton called for a national commitment to develop an AIDS vaccine within ten years. Just this week, Bill Gates said, “With the right leadership and investments over the next decade, we can discover and deliver a vaccine for HIV.”

The success of these forward-looking claims has always depended on sustained funding. Note, in both cases, the emphasis on commitment and leadership. No one is promising a vaccine with anything less. A look back at the last ten years provides a warning on this front. Released today, the Resource Tracking for HIV prevention R&D Working Group’s latest annual report on global investment into biomedical HIV prevention reports that overall funding for HIV prevention research and development (R&D) has remained essentially flat for over a decade.

Close followers of the annual “RT” report take note—a preliminary version was released at AIDS 2016 in Durban in July. The final version contains slightly updated data and the same overall messages: with a slight fall from US$1.25 billion in 2014 to US$1.20 billion in 2015, overall funding for HIV prevention research and development (R&D) has been more or less level for the past ten years.

And what a decade it’s been! Consider the developments in PrEP, the pipeline of injectable ARVs for prevention and treatment, the continued advance of the ARV-containing vaginal dapivirine ring, and the insights and advances that have come from sustained scientific inquiry related to the search for an HIV vaccine. These are exciting times. And the fact that all of this happened in the context of flat funding for research doesn’t mean that flat funding will get us where we need to go next. As Tom Hope, PhD (Northwestern University) stressed at an opening plenary of the HIV R4P conference where the report was launched, the fact that funding is declining concurrent with new discoveries is a major challenge for the field.

The report notes that preventive vaccine research funding constituted the bulk of all investments, followed by investments in microbicides, TasP, PMTCT, PrEP, VMMC and female condoms. With the exception of vaccines and female condoms, every other HIV prevention option tracked by the working group experienced a decline. These trends are somewhat reflective of the cyclical nature of large-scale clinical trials—when trials end, funding drops off. Likewise, as some interventions enter full scale rollout, like VMMC and TasP, research in this arena can be expected to slow down. Nevertheless, the overall trends bear close watching and strong advocacy to ensure that research continues.

The right products need to be tested in the populations who need them most. The report is also a powerful reminder that this isn’t necessarily how research works. It provides information on the demographic breakdown of almost 900,000 participants in ongoing HIV prevention trials in 2015, with the majority of these volunteers residing in sub-Saharan Africa, most notably Uganda, Kenya, and South Africa. Only one in eight trial participants in 2015 belonged to a population most affected by HIV, including MSM and transgender women, injection drug users, and cisgender women.

These sobering facts come in the context of a vigorous period in research and development. It’s a time of growing recognition from the global community that research has to be part of the long-term fight to end the HIV epidemic. Taking stock of all that’s been accomplished with ten years of flat funding, now is the time to support continued progress with additional, well-targeted resources.

The Resource Tracking Working Group hopes that this tool provides strong facts for advocacy and supports efforts to assess public policy and its role in accelerating scientific progress. We thank all of the individuals who contributed data to the report and who gave time and effort as trial participants.

Check out the report, share it with your fellow advocates, and be sure to let us know if your organization is either a funder or recipient of HIV prevention grants or if you have further questions or information about resource tracking at all!

Press Release

A Decade of Flat Funding Could Imperil Progress of the HIV Prevention Research Pipeline

Contacts

AVAC: Kay Marshall, [email protected], +1-347-249-6375
IAVI: Arne Naeveke, [email protected], +1-212-847-1055

A PDF version of this press release is also available.

Report released at HIV Research for Prevention Conference highlights funding trends, opportunities and challenges for HIV prevention R&D

Chicago – A new report released today at the second HIV Research for Prevention Conference in Chicago documents 2015 funding, highlighting a decade of flat funding and its potential impact on continued innovation in the HIV prevention research and development (R&D) field.

The Resource Tracking for HIV Prevention R&D Working Group’s (RTWG) 12th annual report, HIV Prevention Research & Development Investments, 2000-2015 Investment priorities to fund innovation in a challenging global health landscape, finds that funding for R&D of new and emerging prevention options decreased slightly in 2015. This was due in part to decreases from the US public sector and a downswing in global philanthropic funding.

Steady progress in R&D for AIDS vaccines, microbicides, pre-exposure prophylaxis using antiretroviral drugs (PrEP) and treatment as prevention (TasP) confirms science’s critical role in providing solutions to end the HIV/AIDS epidemic. Yet research for these badly-needed solutions is in danger of being slowed or even sidelined by inadequate funding.

“It is critical that investments into HIV prevention innovations, science and technology are scaled up to put us firmly on the Fast-Track to ending AIDS by 2030,” said Luiz Loures, Deputy Executive Director, UNAIDS.

In 2015, funders invested a total of US $1.20 billion across R&D, down from US $1.25 billion in 2014, across eight key areas: preventive AIDS vaccines, microbicides, PrEP using antiretroviral drugs, TasP, HSV-2 vaccines and operations research related to voluntary medical male circumcision, female condoms and prevention of vertical transmission.

The report also finds that investment is being made along all phases of the research pipeline but remains concentrated among a few large investors. A more diverse base of funders would increase the stability of R&D financing and cushion the impact if any of the major funders were to reduce their investments. To improve continuity, RTWG calls for a more balanced funding base, especially through support of new investment by European and low- and middle-income countries. The US public sector (primarily via the National Institutes of Health) remained the largest global contributor at US$850 million, accounting for 70 percent of total funding. Together the US government and the Bill & Melinda Gates Foundation, the largest philanthropic funder, accounted for 81 percent of all funding in 2015.

“There is now very strong momentum in research and development, and we need to expedite the development of vaccine strategies and other new, biomedical prevention options that promise to be safe, accessible and effective for use throughout the world,” said Mark Feinberg, President and CEO of IAVI. “There must be adequate and sustained investment at all stages from early laboratory research and to clinical testing if we are to truly be able to contain the HIV pandemic and approach and end to AIDS.”

This is indeed a time of great optimism for HIV prevention research. Daily oral PrEP is gaining traction as a new prevention option in an increasing number of countries; an antiretroviral-based microbicide ring that showed modest efficacy earlier in 2016 will be further evaluated to determine its viability as a prevention option for women; large-scale efficacy trials of an AIDS vaccine candidate and an injectable form of PrEP are slated to begin soon and a novel proof-of-concept trial of antibody-mediated prevention is underway in several countries. Many more promising candidates in earlier stages are progressing toward pre-clinical and clinical evaluation.

Importantly, 2015 saw increasing investment in the science of delivery – or implementation research – primarily focused on delivery of TasP interventions. Such investments will become even more important to help ensure new prevention options move quickly and efficiently into prevention programs and begin to have an impact on HIV infection rates. There is also an increasing understanding that research must understand and integrate the needs and desires of people who will eventually use new prevention options. Ensuring that the perspective of those for whom new prevention options are being developed is included from the beginning of the research process can help ensure that safe and effective products can be rolled out swiftly and be more fully accepted.

“Innovative science needs innovative funding,” said Mitchell Warren, AVAC Executive Director. “We need an expanded and more diverse global cadre of funders who will be involved in and dedicated to advancing HIV prevention R&D, including product delivery. And these investments need to ensure that new options like daily oral PrEP, and potentially the dapivirine vaginal ring, do not sit on the shelf unused because we don’t know how to effectively deliver them, and that future R&D better meets the needs and wants of those for whom products are developed.”

The report and infographics on prevention research investment are online at www.hivresourcetracking.org and on social media with #HIVPxinvestment.

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Since 2000, the Resource Tracking for HIV Prevention R&D Working Group (formerly the HIV Vaccines & Microbicides Resource Tracking Working Group) has employed a comprehensive methodology to track trends in research and development (R&D) investments and expenditures for biomedical HIV prevention options. AVAC leads the secretariat of the Working Group, that also includes the International AIDS Vaccine Initiative (IAVI) and the Joint United Nations Programme on HIV/AIDS (UNAIDS). This year’s report is additionally made possible by the support of several donors, including IAVI, UNAIDS, the Bill & Melinda Gates Foundation and the American people through the US President’s Emergency Plan for AIDS Relief (PEPFAR) and the US Agency for International Development (USAID). The contents are the responsibility of AVAC and the Working Group and do not necessarily reflect the views of PEPFAR, USAID or the United States Government.