Press Release

Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Contacts

  • Gus Cairns, Editor, NAM/aidsmap, co-author and co-ordinator of the Community Consensus Statement, gus@nam.org.uk
  • Zoë Smith, Communications Manager, NAM/aidsmap: zoe@nam.org.uk
  • General queries: HIVt4p@nam.org.uk / 0044 (0) 20 7837 6988

The fundamentals of HIV treatment provision: eight global HIV advocacy groups release consensus statement at the International AIDS Conference

Durban, South Africa—The HIV epidemic could become a thing of the past, as long as everyone involved in providing HIV drugs as treatment and as prevention sticks to a few basic principles respecting the rights of people with or at high risk of HIV, eight global HIV treatment advocacy organisations announced today on the eve of the 2016 International AIDS Conference.

AVAC, the European AIDS Treatment Group (EATG), the Global Forum on MSM & HIV (MSMGF), the Global Network of People living with HIV (GNP+), HIV i-Base, the International HIV/AIDS Alliance, the International Treatment Preparedness Coalition (ITPC) and NAM/aidsmap have released the Community Consensus Statement on Access to HIV Treatment and its Use for Prevention as a sign-on statement at www.hivt4p.org for endorsement by as many people working with and affected by HIV as possible.

Simon Collins, advocate at HIV i-Base says, “This clear community demand for the right for universal access to ART is an essential step to achieving our common goal to end AIDS.”

Sixteen years ago, the International AIDS Conference was also held in Durban. That ground-breaking conference woke the world to the fact that providing HIV treatment to people in under-resourced countries was not only lifesaving and a matter of global justice, it was, even more importantly, feasible.

Since then, in what is one of the most remarkable medical initiatives of all time, HIV treatment has expanded to the point where 2016 will be the year that more than half of the people in the world who need HIV treatment get it.

But that still leaves nearly half the world in danger of dying from AIDS, and that need is concentrated among certain regions such as the Middle East and eastern Europe and among certain groups such as people who inject drugs.

In addition, although people on treatment are less infectious, the number of HIV cases continues to rise among some groups, most notably men who have sex with men.

Why? Partly it is due to the number of people still in need of treatment; equally, however, it is because those unreached by treatment or appropriate prevention belong to already-stigmatised groups likely to be stigmatised further if it is known they have HIV.

“While in practice, getting HIV treatment to those who need it may involve considerable expense, logistical challenges and a re-modelling in healthcare services,” says NAM/aidsmap’s Gus Cairns, who helped write the statement, “in principle, it’s not complicated”.

“At heart, the statement says two things: Don’t withhold HIV treatment; equally, don’t enforce it. People have the right to treatment, but also the right to the information and freedom they need to take it as a choice.”

The statement is written as 40 short sentences in deliberately simplified English, spelling out basic principles to be observed in extending HIV testing, treatment and drug-based prevention to all.

The statement emphasises that treatment should be free and offered to everyone with HIV without coercion. Information about treatment and support to take it should be available for everyone. Income, gender, sexuality, age, drug use or social status should not prevent people from getting antiretroviral treatment (ART).

The statement also covers the use of antiretroviral drugs by people who are HIV-negative to prevent HIV infection, known as pre-exposure prophylaxis or PrEP. The option to use PrEP should be available for all people who need it and information about PrEP should be available to all people at risk of HIV infection. PrEP should be offered now to those at high risk of HIV infection, the statement recommends.

“We wanted to hold people’s feet to the fire in the world of HIV,” Cairns continues, “and say essentially, ‘If you can’t agree to this, why not?’ We’d like to see it adopted by the organisations that write treatment guidelines and run programmes as a sort of DNA for what they are doing, the basic principles underlying and directing their actions.”

The following organisations have been involved in writing this statement:

Background

Two years ago, NAM and EATG, with the support of a number of other organisations, released the Community consensus statement on the use of antiretroviral therapy in preventing transmission. This went through a year’s worth of development and was released as a sign-on statement. This new statement is a simpler, more fundamental and more widely co-authored development of that.

Why a new statement?

The science surrounding the use of antiretrovirals to prevent HIV, as well as policy and activism, have moved rapidly over the last two years. In particular, there is now broad consensus for the first time that antiretroviral therapy is both of general medical benefit to people with HIV and, if provided globally, could drastically reduce the HIV infection rate worldwide. In addition, there is increasing awareness of and debate about the use of antiretroviral drugs as PrEP, to prevent infection in HIV-negative people at the highest risk of HIV infection.

New! AVAC Report 2016 Big Data, Real People: The annual state of prevention advocacy

If you’re packing for Durban, we hope you’ll pause right now and add to your bag AVAC’s annual state of the field, Big Data Real People. The full PDF, Executive Summary and graphics are available here.

As always, AVAC Report is our annual advocacy analysis, with an agenda that spans the next 12 months—and beyond. We’ve designed it be a clear, succinct, actionable statement of the strengths and weakness of HIV prevention data today—and we hope you’ll join us in amplifying these messages at next week’s gathering.

Even if you’re not heading to Durban, we hope that this year’s Report will top your packing list for the journey through the next 12 months of advocacy and action.

In the Report, we argue that the state of HIV prevention data collection in 2016 is poor. One part of the solution lies in the adoption of “HIV Prevention Data Dashboards”. This tracking tool could bring the same specificity and accountability to non-ART prevention services that the “treatment cascade” of diagnosis, initiation, retention and virologic suppression does for antiretrovirals for people living with HIV.

The world cannot even pretend that ending AIDS is possible without action on non-ART prevention. We need to roll out what we have, continue R&D on what we still need, as well as scale up ART for all people living with HIV. That’s what the new UNAIDS Prevention Gap report says. That’s what AVAC has said for years. That’s what we hope you’ll say in Durban and over the coming year.

Here’s the Report, a roadmap for the coming year. Please read it, join us on the journey, let us know what you think!

Press Release

Data gaps hinder global efforts to reduce HIV infections, AVAC report warns; improved data collection and reporting needed to meet looming global AIDS targets

Contacts

Mitchell Warren, mitchell@avac.org, +1-914-661-1536
Kay Marshall, kay@avac.org, +1-347-249-6375

In a report issued today, AVAC warned that major gaps in global HIV/AIDS data stand in the way of delivering HIV prevention advances to millions of people who need them most. The report identifies several critical weaknesses of today’s HIV prevention data collection and monitoring systems and offers a concrete roadmap for closing these gaps. The report, Big Data, Real People, was issued ahead of next week’s International AIDS Conference in Durban, South Africa (July 18-22), where advocates will demand action to speed HIV prevention research and delivery.

“In an era in which big data are expected to improve essentially every part of our lives, there’s no excuse for HIV prevention data systems to be so uneven, incomplete and inefficient,” said Mitchell Warren, AVAC’s executive director. “To have any chance of ending the epidemic by 2030, we need to be collecting and accounting for every bit of useful information from every person living with or at risk for HIV.”

The need for improved HIV prevention data systems is particularly pressing given the UNAIDS “fast-track” goal to reduce new annual diagnoses to no more than 500,000 by 2020. Earlier this month, UNAIDS reported that the number of new HIV infections has remained near 2 million per year for the past decade.

Report identifies specific HIV data gaps, recommends solutions

AVAC’s report focuses on four critical data gaps that must be addressed to effectively prioritize, target and measure the impact of efforts to develop and deliver HIV prevention advances.

Specifically, today’s HIV prevention data are:

  • Not sufficiently broken down by age, gender, income status, key population status and other vital categories
  • Missing or incomplete for key populations most in need of prevention, including adolescent girls and young women, men who have sex with men, transgender women, and others
  • Not tied to useful HIV prevention metrics and indicators, so that it is impossible to know whether prevention programs are actually averting infections and improving health
  • Not effectively informing the HIV prevention research agenda

To overcome these weaknesses, the report outlines three critical strategies that should be pursued most urgently:

1. Standardize and systemize data collection and reporting for HIV prevention

Understand, measure and report on the risk level of people testing HIV-negative; create and measure linkages to evidence-based prevention for people at substantial risk; and use a standardized “Prevention Data Dashboard” to continually evaluate progress. Such dashboards would consolidate and arrange available data to illuminate critical prevention gaps and help the global community, governments and funders better conceptualize their HIV prevention programming and evaluation. AVAC’s report provides a model dashboard for decision-makers to adopt.

2. Improve use of data for adolescent girls and young women

Ensure that a growing volume of available data can be applied in a meaningful way. As a first step, funders, implementers and governments need to do a better job of defining and segmenting this population; map who is investing in what and where; put adolescent girls and young women in control of core aspects of the data-collection enterprise; and adopt gender-specific indicators tailored to girls and women.

3. Put research on the “fast-track” and countries at the center

Fit biomedical HIV prevention research into comprehensive prevention plans tied to national targets for incidence reduction. Countries and research institutions must invest time and resources in stakeholder engagement; ensure that research priorities are informed by epidemiological and other quality HIV data; and develop national research plans for meeting the prevention needs of specific, affected populations.

The new report and related resources, including downloadable graphics, are available now at www.avac.org/report2016.

###

About AVAC: Founded in 1995, AVAC is a non-profit organization that uses education, policy analysis, advocacy and a network of global collaborations to accelerate the ethical development and global delivery of AIDS vaccines, male circumcision, microbicides, PrEP and other emerging HIV prevention options as part of a comprehensive response to the pandemic.

MPT Products in the Pipeline: Selected highlights

This table shows which MPTs are further along in testing for both sustained-release and on-demand products. Women will have different needs and preferences throughout their lives. An array of different types of products is key to meeting the varying needs of different women. Excerpted from the MPTs factsheet.

“We Neglect Primary HIV Prevention at Our Peril”

Inspired by a steady decline in new HIV infections and AIDS-related deaths, the sustainable development goals call for ending the AIDS epidemic as a public health threat by 2030. However, the world is not on track to end the epidemic. – “We neglect primary HIV prevention at our peril”, Lancet HIV

The July issue of The Lancet HIV, launched online earlier this week, focuses on the need to scale up prevention to reduce new infections—reiterating that achieving the UNAIDS’ 90-90-90 treatment targets is not possible otherwise.

As the editors note in the introduction to the issue, “We can do much with existing interventions, but as the papers in this issue show evolution of programmes and technology will be needed to have the greatest effect.”

The issue is made up of a series of papers that attempt to show what needs to happen in prevention to reduce incidence and reach global and national targets. The papers cover a range of topics, including:

  • How we might create, use and understand a “prevention cascade” to assess programming;
  • What modeling shows we might be able to achieve if available interventions are appropriately scaled;
  • A framework for how to achieve UNAIDS’ ambitious targets and the actions need to get there; and more.

For those attending AIDS 2016, please save the date for a special session that will focus on this issue and its call to action: What Will it Take to Reach the Fast Track Prevention Targets: What, Who and How, on Monday, July 18, 14:45–16:45, Session Room 5.

In addition, as many in the field prepare to head to Durban next month, we are pleased to see that the Second Durban Declaration, released today by the International AIDS Society for endorsement through the end of the AIDS 2016 conference, devoted significant ink to prevention, both the implementation of what’s currently available, the need for research into new options and the fundamental structural barriers that must be addressed.

What Should the Next US President Do? Advice for Hillary and Donald.

On behalf of IFARA, thebodypro.com recently posted two videos. In the first, Jim Pickett, director of Prevention Advocacy and Gay Men’s Health at the AIDS Foundation of Chicago, spoke with Robert Grant, MD, MPH, Mike Cohen, MD, Ian McGowan, MD, PhD, FRCP, and Mitchell Warren about HIV prevention research presented at this year’s Conference on Retroviruses and Opportunistic Infections (CROI).

New prevention tools, such as a safe and effective vaginal ring and the prospect of long-acting injectable agents are exciting news, panelists agreed. However, these tools are only as good as their implementation — as is the case with already approved methods, such as oral pre-exposure prophylaxis (PrEP). This includes finding and effectively treating people living with HIV, because those with an undetectable viral load do not transmit the virus.

Panelists would advise the next US President to invest in long-term research, including the search for a vaccine, cure, fund open-label studies of the vaginal ring, and provide treatment and prevention services to as many people as possible — especially women and men of color.

Watch the video on thebodypro.com.

In the second video, AVAC Policy Director Kevin Fisher spoke with Steven Wakefield and Ntando Yola about the development of a vaccine for HIV.

Wakefield called antibody-mediated prevention “the next holy grail.” Trials of broadly neutralizing antibodies that are infused every two months will start enrollment across the globe by mid-year, he said. However, a potential vaccine is just one component in a set of HIV prevention methods. Yola described HIV prevention as “a track field where products are racing each other.” Communities pin their hopes on each new prevention modality, but the focus needs to be moved from specific methods to overall prevention science, he believes. To that end, the science behind vaccine research needs to be explained in a way that people in the community can understand.

This video is also available at thebodypro.com.

New Film Series Captures Activists United by Urgency for HIV Prevention in Europe

In January 2016, the European AIDS Treatment Group (EATG) and AVAC jointly convened the Second European HIV Prevention Summit in Brussels. This unique meeting brought pharmaceutical companies, public health experts, academics and leading scientists in the field of prevention research together with over 50 European community-based advocates for three days of information exchange and debate.

Participants discussed the latest scientific and policy developments in the field of HIV prevention and formulated demands for researchers, medicine manufacturers and decision makers. The community urged concerted action and clear financial and political commitment to achieve effective prevention of HIV/AIDS in Europe. Specifically, the Summit called for the accelerated approval and rollout of PrEP in countries across the region, following France’s recent example as the first and only in Europe to officially implement and fund PrEP programs for men and women at substantial risk of HIV. The meeting also concluded with a call for the continuation of research for HIV vaccines, and rectal and vaginal microbicides, along with better systems for tracking the epidemic, including where new cases occur and where and how access is happening.

The packed agenda of the European HIV Prevention Summit included detailed reports on and discussions about groups of people at highest risk of HIV across Europe, including gay men, trans people, sex workers, people who inject drugs, migrants and the African diaspora. Timely information from completed, on-going and planned PrEP implementation studies was presented along with new civil society initiatives to provide PrEP and other prevention tools to those who need it. For a rare moment, stakeholders involved in the field of HIV prevention could gather in a space to exchange scientifically sound and politically meaningful ideas about way of slowing down the HIV epidemic in Europe.

In order to make the meeting accessible to those who were unable to attend in person, EATG and AVAC commissioned a three-part video series designed to give an overview of the main topics of the meeting: PrEP, Testing & Treatment, and the Future of HIV Prevention. The first of these films, focusing on PrEP, is now available here. The meeting report is also available for download.

CROI for the Community

Rob Newells is the newly appointed Executive Director of AIDS Project of the East Bay. He is minister and founder of the the HIV program at Imani Community Church in Oakland and has been an AVAC PxROAR member since 2012. This blog is one in a series written by community scholars who attended CROI 2016.

I have a love-hate relationship with the annual Conference on Retroviruses and Opportunistic Infections (CROI). The 12-hour days of high science can be overwhelming, and even after being deliberate about building down time into my schedule, I still crashed and burned before the end of Day 3. (It took the entire week to adjust to the time difference between East and West coasts, and after the daily 7 am Community Educator Breakfast Updates, I struggled to stay awake and alert for the morning plenary sessions.) But I survived!

There are always major headlines coming out of meetings like CROI. As a biomedical research advocate, my inner nerd gets super-excited about things like Phase 2 study results from MTN 017 (a rectal microbicide study), but at CROI I’m a community educator. I try my best to take off my research nerd hat for a few days and tune my ears to hear what members of my community will find useful right now. (I’ll have plenty of time and dozens of webinars to help me grasp all of the high-level science presented at CROI so that my inner nerd will be ready for additional updates during the International AIDS Conference in July.)

The week after returning to Oakland from Boston, I shared information with the staff working at AIDS Project of the East Bay (APEB) and with community members participating in a series of breakfast discussions coordinated through my ministry at the Imani Community Church in partnership with the East Bay HIV Faith Collaborative. This is what I told them:

  • Vaginal microbicide rings look like they’ll work. Don’t be frightened when you hear that the HIV infection rate was only reduced by about 30 percent. Remember that old 44 percent reduction in the HIV infection rate for pre-exposure prophylaxis (PrEP) when the first iPrEx study results were released just over five years ago? It gets better! With PrEP we saw that when people know the product actually works, they use it more and risk goes down. It works when you use it! Will the same thing hold true for the vaginal ring? There’s a need for open-label studies to see if women will use it more when they know it works.
  • There’s reason to think injectable PrEP might work, but there are questions about how to deal with the “tail” — the period of time after injectable PrEP is terminated but there still may be low (non-protective) levels of drug in the system.
  • People who use oral PrEP are generally people who are already at-risk for STIs, and they should be tested more often than every six months as is currently recommended by the CDC. (Our Medical Director at AIDS Project of the East Bay already screens PrEP clients for STIs quarterly as suggested by the research presented at CROI.)
  • We talked a little about the PrEP failure case from Canada, which occurred when the PrEP user was infected with tenofovir- and emtricitibine-resistant virus. But staff and community members alike were more interested in the HPTN-073 study results showing that, with a little client-centered care coordination (C4), it’s really not so difficult to spark black men’s interest in PrEP. This was the silver lining in the cloud hovering over the community after CDC presented lifetime risk estimates indicating that half of all gay black men in the US will test positive for HIV if we don’t do something about it now. (If my community needed a wake-up call… a new reason for a sense of urgency around this HIV epidemic… a fire lit under its collective ass… This has to be it.)

Then we spent a little time talking about things I heard at CROI that probably won’t make headlines:

  • Do you really understand how much smoking while living with HIV increases risk for opportunistic infections, cardiovascular disease, lung disease and some cancers while decreasing life expectancy? What are we saying to our clients living with HIV about smoking that’s different from what we say to clients not living with HIV? (After checking in with our Medical Director, APEB will be implementing a smoking cessation program through our primary care clinic.)
  • When researchers looked at people’s “Perception of Infectiousness,” the takeaway for me was that black people still don’t believe having an undetectable viral load prevents the transmission of HIV. (There are lots of conversations about medical distrust among African Americans begging to be had over and over and over again until someone figures out how to effectively address the issue.)

Another CROI is in the books (and on webcast). It will likely take months for my inner research advocacy nerd to wrap my head around all of the science, but now that my sleep pattern and weather conditions are closer to California-normal, the community educator in me is very happy.

Context Matters: Key Thoughts from CROI 2016

Josephine Ayankoya works for the San Francisco Department of Health’s Bridge HIV program and is a member of AVAC’s PxROAR program. This blog is one in a series written by community scholars who attended CROI 2016.

Attending the Conference on Retroviruses and Opportunistic Infections (CROI) for the first time was an excellent learning opportunity. In the midst of many of the world’s leading researchers in basic, clinical and translational science, I was excited to be among the first to hear about breaking news in biomedical research. While sitting through sessions, and talking with colleagues, I constantly reflected on what this research meant for my communities. My excitement about the progress in research was matched with a desire to build on the data. With every study that I learned about, I was further inspired to support multidisciplinary approaches to ending the HIV/AIDS epidemic.

This is why I found Dr. Gerald Friedland’s N’Galy-Mann Lecture on confronting HIV and tuberculosis in New York and South Africa to be incredibly encouraging. As Dr. Friedland spoke on his experience working with under-resourced, low-income communities of color, he highlighted the importance of understanding the context in which HIV disparities occur. Two quotes stood out to me as he spoke about overlapping epidemics that people at risk for HIV have always juggled. The first was that, “We have to meet marginalized and stigmatized populations where they are and increase resources where they live.” The second was a reminder that, “Declines in HIV have followed eras of activism that led to an increase of political will.”

Meeting underserved communities where they are, increasing resources where they are needed, and increasing political will are easier said than done. It takes sustained commitment, and strategic planning but these actions are possible. More than anything at CROI, I was reminded that data are powerful and should be used as a foundation for civic engagement efforts.

In the United States, Black men who are gay, bisexual, or same-gender-loving (GBSGL) carry a disproportionate burden of the HIV epidemic. For years, the Centers for Disease Control and Prevention (CDC) have reported that while new infection rates in most populations are stable, they are increasing among Black GBSGL men, especially young ones. At CROI, the CDC released data which estimated that throughout the span of their entire lifetimes, half of Black GBSGL men could be infected with the virus. It is a heartbreaking, yet sadly unsurprising, call to action.

As performer, activist Tim’m T. West stated, “It’s easier to blame victims when you can’t talk about systemic racism… when you can’t talk about institutionalized homophobia… Then Black men become responsible for their own dying. In that sense, ‘It’s something they brought upon themselves.’” We cannot talk comprehensively about the disparities among Black GBSGL men without talking about the effects that oppression and under-representation play on their health. It is impossible to fully understand this disparity without acknowledging how the blockage of Medicaid expansion in the Deep South hinders millions of Black people from accessing basic health care. There is a myriad of social, political, economic and cultural barriers that exacerbate HIV disparities.

The socio-cultural context in which Black men, and all African heritage people around the world, live is complicated. Mitigating the multiple challenges that lead to these disparities will take a lot of work. In the words of Dr. Darryl Wheeler, “It’s difficult, but it’s still worth doing.”

Our work as HIV/AIDS researchers, educators and advocates naturally aligns with the work of colleagues in the legal, health, urban planning and educational sectors of society. The people most at risk for HIV are dealing with a series of challenges outside of maintaining their sexual health.

I was thrilled to hear researchers Darryl Wheeler and Sheldon Fields talk about the results of the study HPTN 073 looking at PrEP uptake in Black GBSGL men, because it demonstrated how research can be used to meet marginalized people where they are. The study enrolled over 200 Black gay and bisexual men in three cities across the United States—Atlanta, Chapel Hill and Los Angeles. These men were engaged in a culturally-competent method of counseling called client-centered care coordination (C4). They were also offered access to PrEP. The study found that with C4, the majority of Black GBSGL men decided to initiate and sustain the use of PrEP. Men who attended more of the C4 sessions tended to use PrEP more often than those who attended less of the C4 sessions.

Not only did this research meet people where they were by responding to psychosocial needs that had not been fulfilled, it increased resources for those who need them most. I have known about this study for years, so I was proud of its outcome. It reiterated what many already know: the context in which HIV disparities occur matters.

We will never end the epidemic without strategically working to change public policy. It is critical to use data from studies like HPTN 073 to increase the political will of our elected officials to implement interventions proven to work. To truly address HIV, we’ll have to build and maintain coordinated advocacy movements with coalitions across different sectors of society.

As Dr. Friedland stated the first day of CROI, activism leads to political will and, in turn, the decline in HIV. Our individual and collective actions will determine what this era of HIV research, prevention and treatment will entail. In a time when we have more tools than ever to prevent HIV, no one should be getting infected and every person with HIV should be able to access treatment. I hope now, more than ever, we use evidence-based approaches to advocate for and with communities most at risk for HIV.

Let’s make this era one to remember. Let’s make this the era where data were used to change the many structures that influence HIV/AIDS disparities.

CROI, For the First Time

Yvette is currently working at the Centre for Communication Impact (formerly JHHESA). She is a founding member of the new Advocacy for Prevention of HIV and AIDS (APHA) in South Africa, a former AVAC Advocacy Fellow and a leader in the country’s HIV prevention movement for young women. This blog is one in a series written by community scholars who attended CROI 2016.

My first CROI and it was not the science that was overwhelming…

When I was presented with the opportunity to apply for a scholarship to attend this very scientific meeting and conference as a community educator I was thrilled and most of all exited that I would be in the presence of all the scientists who’s work I have torn to shreds to get my communities in Mpumalanga, Limpopo and KwaZulu-Natal (KZN) to understand. As a community educator I have had to explain microbicides, PrEP, TasP, HIV vaccines and the BIG one: why we still don’t have a cure. Also, I have had to explain why it is important that we know the new research and why a lot of the HIV research happens in South Africa.

Upon my arrival I was overwhelmed by the beauty of the city; the buildings all looked old but they were a beautiful sight. When I left South Africa, the university students were burning old art and statues because it reminded them of our painful past. As I was driving from the airport upon my arrival in Boston, I saw a few homemade banners of Black Lives Matter in the city attached to these old buildings. They were not torn apart; they looked just like they belonged there. They were not threatening each other—the old building and the new feelings of we matter, black lives matter. I wish I had stopped my driver to take a picture.

I was invited to a pre-conference on cure research, on where we are. Because of my suspicions with cure and quacks, I thought I would only last 30 minutes at the most. How wrong I was. I was intrigued by how much research is happening and the amount of work that researchers were putting in trying to unlock this mystery. I was overwhelmed about how much of this research is happening in South Africa and that one study was actually happening in KZN. Research showed that even with focused interventions of counselling and empowerment skills, there were no differences in the new infection rates of young women in the program and those not in the program. Suffice it to say I was there the whole day and did not want to miss a presentation let alone a slide.

The next day was the first day of the conference and our day started at 7 am. I was jet lagged but did not want to miss anything. Not even the cold could keep me in bed. For the duration of the conference we had an opportunity to interact with the scientists, thanks to a great initiative by the BAI, AVAC and CROI Community Liaison Subcommittee. These morning meetings were a space where we as community advocates could come together and learn from each other. I realised that I knew about 30 percent of the community through our work and most of all our very vocal online presence on Facebook. I did not want to show my anxiety around the pending Ring and ASPIRE results so I would walk around meditating that it works. After all, my girls were hoping it does. The day the results were going to be announced I dressed like a winner—I wanted women to win.

When Dr Annalene Nel, lead researcher on the <Ring Study, mentioned a “significant” efficacy result, I did not know what to feel. I was overwhelmed by the word and I knew it worked. I knew our work was cut out for us as advocates. A lot of questions still remained unanswered for the young women but at least the ring works and we know that now. I was happy, very happy. I immediately announced it on my FB Page and I received so many inboxes from young women— both positive and negative—and most told me there is HOPE. Seeing Annalene made me very emotional because unlike the other researchers at CROI she did not see “subjects”— a word that made be shiver every time it was mentioned at sessions throughout the conference referring to research participants. She saw trial participants as young women, some of whom she had met throughout out the study period. I knew she was counting on support and I walked up to her and I told her what this means to the young women I worked with. Annalene received a standing ovation. I was happy—finally a woman for other women. For a feminist like me it mattered that Dr. Annalene was at the forefront. It mattered that she was OK. I was overwhelmed with pride to be South African at this conference and it mostly mattered that I was a woman at the conference too. The rectal microbicides trial results were also positive news for HIV prevention.

At this conference I learnt that there are more HIV prevention tools than there has ever been before. I was left wondering who these prevention tools are developed for. Why is it that if treatment is prevention are there not more visible TasP campaigns, despite UNAIDS’ 90-90-90 and MSF’s Getting to Undetectable? Why is it taking policy makers so long to implement early treatment when the benefits from the START study are so overwhelmingly positive? The benefits, especially for those living with HIV, are lowered risk of cancer, among other risks. This cannot be rocket science, especially seeing that women living with HIV are at such high risk of cervical cancer. Why is it that if being virally suppressed reduces the risk of passing the virus on to others, we are not including this in mass HIV communications? If PrEP works and can help defeat HIV, why are there only four countries that have approved the use of Truvada as PrEP? (Since CROI, two more countries have approved PrEP.) And why is South Africa not moving any faster with rolling out PrEP to those who need it?

I was also swayed in my initial stance against home testing, thinking pre- and post-testing might get lost in the process. However, if this is not the case and home testing will increase the number of men who test, I am now for it.

It was a week of late nights and early cold mornings, a week of appreciating the science. By including the community educators at CROI 2016 I hope the scientists will appreciate the work done by communities and most of all advocates. We will only appreciate your science if you appreciate our stories. And yes it does matter who delivers the news to whom: Male, Female Gay or Straight.

Thank you for the opportunity, the support and the guidance AVAC, BAI, CROI, Sister Love and all the other sponsors.