AVAC on World AIDS Day: We’re 20. We’re not giving up.

When AVAC was founded in 1995, we were called the AIDS Vaccine Advocacy Coalition. Our singular goal was to advance swift, ethical research for a vaccine that was then — and is today — essential to bring the epidemic to a conclusive end.

Twenty years later, AVAC is still focused on swift and ethical research, but our scope has expanded. Along with vaccines, we advocate for PrEP, microbicides, voluntary medical male circumcision and more.

Through it all, our message has been the same: prevention is the center of the AIDS response. Not just any prevention but smart, evidence-based, community-owned, rights-based strategies.

We do this work because it’s essential. We are able to do it because of our robust partnerships worldwide. We will keep doing it — with your help — until the epidemic has, finally, come to an end.

We’ve experienced 20 years of breakthroughs and disappointments in prevention research. A vaccine that many had given up on was the first to provide modest protection. One microbicide everyone hoped for didn’t pan out. Male circumcision and PrEP studies overcame skepticism and, together with antiretroviral therapy, paved the way for a prevention revolution.

Through it all, AVAC has worked with partners to maintain the field’s focus and press for continued research into an AIDS vaccine, a cure and more.

When AVAC was founded, the only biomedical HIV prevention options for adults were male and female condoms. The pathway for introducing any new strategy was largely unmapped. No one knew where the gaps would be—between trial result and country action, between guidance and financial support. Now we do.

Over two decades, AVAC has not only identified the gaps; we’ve worked to bridge them, so that products reach people in programs that work — without delay.

Twenty years ago, advocacy for HIV prevention hardly existed. So AVAC helped build a global network of advocates equipped with effective advocacy strategies and the latest evidence.

With our support, they are putting prevention on the agenda in countries and communities around the globe.

When the world lacked a plan for ending AIDS, we helped create one.

Now we’re holding global leaders accountable for results — demanding the resources, policies and evidence-based plans needed to deliver all of today’s prevention options to the people who need them, and to plan for the rapid rollout of new options as they emerge.

Communities’ support for prevention research can never be taken for granted — it has to be earned. For 20 years, we’ve helped build trust between researchers, funders and communities to speed the ethical development and rollout of new prevention options.

And when controversy threatened to derail those efforts, AVAC provided leadership and resources to help get them back on track.

Your gift to AVAC will support our efforts to accelerate the development and delivery of HIV prevention options to men and women worldwide. With your help, we can continue to convene, collaborate and communicate a strong, clear and cohesive vision for HIV prevention today, tomorrow and to end the epidemic.

It will take all of us working together to end AIDS. Please join us.

Give Us the 2-in-1 HIV Prophylaxis

In this Mail and Guardian editorial, South African advocates call on the South African government and health department to do its part to expand the provision of PrEP and integrate it into combination treatment and prevention programs before “people are agitated and take to the streets to demand these tools”.

South Africa has rolled out the largest antiretroviral treatment program in the world—about 3.1 million people are now on treatment, according to health department figures.

This is a remarkable, given the earlier years of poor political response. But South Africa still has unacceptably high rates of infections and HIV remains a public health emergency.

Within the general epidemic in South Africa, some specific population groups—such as sex workers, gay men and other men who have sex with men (MSM), discordant couples (where one partner is HIV-positive and one HIV-negative), truckers and people who inject drugs—have higher rates of HIV and require specialised interventions.

The disease takes a particularly devastating toll on the lives of adolescent girls and young women between the ages of 15 and 24, a rate more than four times that of their male counterparts, according to the Human Sciences Research Council’s 2012 National HIV Prevalence, Incidence and Behaviour Survey.

The HSRC survey, also found that more than 400,000 new HIV infections occurred in 2012, bringing the number of people infected in South Africa to 6.8 million in 2014.

A disturbing picture
These statistics present a disturbing picture of the HIV epidemic and our response. In delaying the implementation of pre-exposure prophylaxis (PrEP), has South Africa failed to embrace the wisdom of science?

This new option for HIV-negative people at substantial risk of HIV infection is a combination antiretroviral drug, TDF/FTC, taken once a day, which can drastically reduce their chances of becoming infected. Research studies show that, when this two-in-one pill is taken correctly and consistently, it is more than 90 percent effective.

There have been unexplained delays by the Medicine Control Council to approve and license TDF/FTC as pre-exposure prophylaxis and the department of health’s response to South Africans voicing their demand for this action has been silence. The council should approve TDF/FTC before the end of this year.

New guidelines
Advocates welcomed the World Health Organisation’s (WHO) new guidelines for HIV treatment, released in September. These recommend that: “Oral PrEP… should be offered as an additional prevention choice for people at substantial risk of HIV infection as part of combination HIV prevention approaches”.

The new guidelines have broken the silence among policymakers on the future of pre-exposure prophylaxis in South Africa. Following their release, Yogan Pillay, the health department’s deputy director-general for HIV, endorsed the WHO guidelines in an article in the Mail & Guardian. This demonstration of commitment is an important step in realising our dreams about providing pre-exposure prophylaxis.

As HIV prevention advocates, we talk to many people, including potential users of TDF/FTC. We hear from a host of people from all walks of life who are demanding pre-exposure prophylaxis. They want to know when the drug will be available in South Africa and how they can get access to it. These questions have been previously been impossible to answer, but now we hope to work with health department. Will the department follow through on its commitment and the ethical imperative to provide medicine that is a crucial step in confronting the HIV epidemic?

We would like to see such a programme rolled out in the shortest possible time, and through existing structures, where possible.

We know that implementation of this new intervention will not be easy. It requires political will, dedicated advocacy, domestic sources of funding and international donor commitment.

More importantly, investment must be based on decisions that are driven by evidence rather than sentiment. The health department will need support from a variety of stakeholders—much of which can and will come from the huge groundswell of civil society support for the implementation of a pre-exposure prophylaxis programme.

As we prepare to support the department in planning and executing such a roll-out, we have questions. What are the department’s plans for this? What are the timelines? Has the department started seriously with advocates in the provinces? What are the advocacy issues that civil society can push?

We need effective models to deliver PrEP. Demonstration or pilot projects in South Africa and around the world will provide us with the knowledge to guide a roll-out in real-world settings. The health department can also take advantage of data on existing public health programmes that can be adapted for providing TDF/FTC.

Some organisations that already provide comprehensive HIV prevention services are suggesting that the department use existing structures and services to start and expand the provision of PrEP and integrate it into combination treatment and prevention programs.

Within these organisations, there are champions who have already established positive working relationships in communities. They can help to identify barriers to implementing and recommend strategies to address the barriers.

Young women tell us, “We recommend that youth-friendly clinics be established and that health staff be sensitised about the unique needs and problems that young people face.” Similarly, sex workers have suggested that TDF/FTC should be provided “within user-sensitised facilities” and, where possible, through mobile clinics. Men who have sex with men are calling for the medicine and some are already getting it from private clinicians through “off label” prescriptions.

As advocates, we will continue our work to educate the public about TDF/FTC, how to get it and how it can further strengthen existing HIV prevention efforts. But we know that there is more to be done through working closely with people and with social marketers.

We will also continue preparing for the results of a vaginal microbicide ring study expected early next year. The vaginal ring, another form of PrEP, slowly releases the antiretroviral drug dapivirine over the course of a month. If proven safe and effective, the vaginal ring could expand options for women-initiated HIV prevention methods.

Civil society is working with the International Partnership for Microbicides, the organisation which developed this technology, and other partners who conducted microbicide research among South Africans to plan for the results and introduce the product if it is proven effective. No microbicide has yet been licensed for use.

We acknowledge South Africa’s remarkable success in fighting HIV. There is now opportunity to build on these successes by taking advantage of new innovations such as TDF/FTC to reduce the chance of infections and save on treatment costs. HIV-negative South Africans have a right to use this life-saving intervention now.

We should not have to wait until people are agitated and take to the streets to demand these tools.

Will South Africa show global leadership and take immediate action to get PrEP into people’s hands? Or will our collective conscience be haunted in years to come, knowing we could have averted new infections and saved on costs of lifetime HIV treatment and sickness? The science is clear that TDF/FTC works when taken correctly and consistently; now we must follow this evidence and act on it.

John Mutsambi is an AVAC Fellow. AVAC is a US based organisation that advocates for HIV prevention to end AIDS. Brian Kanyemba, Yvette Raphael and Ntando Yola are the leaders in PrEP advocacy in South Africa.

ICASA 2015: A conference guide to participating on-site and virtually

For the latest from the conference, visit our ICASA page.

This update includes information on the 18th International Conference on AIDS and STIs in Africa (ICASA 2015). Featured below are details on select events related to biomedical HIV prevention research and implementation as well as how to follow the conference from afar.

The 18th ICASA conference theme is AIDS in Post 2015 Era: Linking Leadership, Science & Human Rights. AVAC and many of our partners will be participating in and presenting at the conference. There are several ways you can link to HIV prevention research and rollout-related events—both in-person and from afar:

  • ICASA 2015 HIV Prevention Research Roadmap: There is a wide range of sessions planned for the conference (full program available here), and we have pulled together a roadmap of select sessions that may be of interest to those tracking biomedical prevention research and rollout. Download as a PDF or XLS file and please let us know of any other related events that should be added to the roadmap.
  • Biomedical HIV Prevention Forum (BHPF) Pre-conference Session: Hosted by the New HIV Vaccine and Microbicide Advocacy Society (NHVMAS), in collaboration with a number of partners including AVAC, this session will take place on 29 November from 9:00 to 16:00 at the Rainbow Towers. See the BHPF website for more information.
  • Key Population Pre-conference Session: Hosted by African Men for Sexual and Health Rights (AMSHeR), African Sex Workers Alliance (ASWA) and Gender DynamiX, this session will take place on 28 November and 29 November from 9:00 to 17:00 each day at the Crowne Plaza Hotel. For more information contact icasa@amsher.org.
  • Youth Pre-conference Session: Hosted by the ICASA YouthFront, this session will take place from 27 November to 28 November from 9:00 to 16:00 at the Rainbow Towers. For more information visit the YouthFront website.
  • Satellite Session: Adapting the WHO guidelines on oral PrEP: What will it take?, hosted by USAID, PEPFAR, WHO and the OPTIONS Consortium, comprised of FHI360, Wits RHI and AVAC, this satellite session will take place on 3 December from 7:00 to 8:30 at the Rainbow Towers. The panel will cover an overview of the WHO Interim Guidelines and key oral PrEP research findings and demonstration projects, with a discussion to follow on what it will take to introduce and scale up PrEP and other ARV-based prevention options within combination prevention programmes. Breakfast will be provided. For more information contact us.
  • WNZ@ICASA: AVAC is excited to partner with many African partners on sessions at the Women’s Networking Zone (WNZ) at ICASA. Please check out the WNZ programme and please visit the zone for opportunities to engage and dialogue with women’s organizations across Africa. AVAC is collaborating on a number of sessions and dialogues at the WNZ, including session updates on the dapivirine ring trials, PrEP for women, hormonal contraception and HIV, women’s role in VMMC rollout, barriers in access to treatment and HIV prevention research and delivery.

ICASA on Social Media: Follow the conference in real-time on social media by following us on Twitter and Facebook — and using the official conference hashtag #ICASA2015.

Want a Healthy World? Let the HIV Response Lead the Way

This post first appeared on The Huffington Post.

World AIDS Day 2015 comes at a watershed moment in the fight for the health of people living with HIV and for the health of all the citizens of this planet. The two are intimately related: HIV has, for the last three decades, defined the landscape of ambitious, collaborative and innovative responses that marry science, rights, community-based responses and structural change. Ultimately, these responses can be leveraged to improve health everywhere, but only if we continue to make real progress in battling HIV.

In recent years, collaborations between research teams and thousands of volunteers in clinical trials have yielded insights into how to use HIV prevention and treatment options to end the epidemic. These insights have led to the Joint United Nations Programme on HIV/AIDS (UNAIDS) “Fast-Track” approach to ending the epidemic, which sets ambitious targets for a range of interventions, including 27 million voluntary medical male circumcisions by year 2020, three million people on daily oral pre-exposure prophylaxis (PrEP) annually, major reductions in violence against women, improvements of human rights and, of course, the 90-90-90 targets for 2020: 90 percent of all people living with HIV will know their HIV status, 90 percent of all people with diagnosed HIV infection will receive sustained antiretroviral therapy (ART) and 90 percent of all people receiving ART will have viral suppression.

The world has gotten this far because of massive investments in the HIV response. To actually end the epidemic, though, it is imperative that we resist complacency, cutbacks in funding and a sense that, on any level, our work is done.

Over the last 15 years, the Millennium Development Goals guided the global response to development. Health, including controlling HIV, figured prominently in these goals. In September, the members of the United Nations adopted the Sustainable Development Goals (SDGs), which will guide policy and funding for ending poverty everywhere over the next 15 years. Health is one of 17 goals. To meet it, funders, implementers and country governments will need to be smarter with investments in HIV/AIDS. This means working side by side with people living with and most affected by HIV to develop rights-based approaches and efficient and community-supported service delivery models. And, it means thinking beyond any single health issue and toward integrated approaches that both fight HIV and contribute to ending poverty, hunger and inequality.

This integrated, rights-based approach is needed for all the SDGs. But just as HIV has transformed the way that the world thinks and acts on a single issue, it must also be the leading edge of the pursuit of even more ambitious targets: end epidemic rates of new HIV cases, but also begin to change the quality of life for people everywhere.

Is this a lot to ask of the response to a single virus? Perhaps. But HIV is a virus that reveals the fault lines of societies. HIV follows poverty, stigma, discrimination, criminalization and inequity. Treating HIV effectively means addressing these issues. In many parts of the world, girls and young women are at particular risk, as are men who have sex with men, transgender individuals, sex workers and people who inject drugs. A human-rights-based approach that engages these key affected populations is the basis for a sound, effective response.

Successful achievement of both the SDG health goal and the UNAIDS Fast-Track targets hinges on innovation. Here, too, the HIV response lays tracks for the path to true global change. Over the last few years, the HIV prevention, care and treatment cascade has emerged as an effective tool for describing the status of the response, influencing policymakers and guiding investments in treatment and prevention. Consistent use of effective ART both improves the lives of those living with HIV and dramatically reduces the chance of transmitting the virus to others. New World Health Organization (WHO) guidelines recommend that people with HIV start ART regardless of their stage of infection. WHO also provided a huge step forward for daily oral PrEP by recommending this proven intervention for all people at substantial risk of HIV infection. More recently, UNAIDS included PrEP in its prevention targets, while the US President’s Emergency Plan for AIDS Relief (PEPFAR) Scientific Advisory Board just released a strong recommendation for PrEP.

Delivering daily medications to both HIV-positive and HIV-negative people in programs that are supportive, accessible and sustainable is a major challenge. But, it can be done. And if it can be done for HIV, it can be done for many other strategies, too. Today’s HIV investments are increasingly focused on creating platforms for health delivery as part of a comprehensive approach to women’s sexual and reproductive health.

Happily, these investments will not only increase the impact that existing interventions can have today, but will also lay the groundwork for eagerly anticipated ARV-based microbicides, especially the vaginal ring with dapivirine, if and when it is demonstrated to be efficacious in clinical trials that will report out early next year.

While the range of options for impacting HIV has grown tremendously, additional research is needed to make things simpler to use, to expand choices and to make health a reality for all. Here, too, HIV is aligned with the broader health response, which seeks to expand access to effective vaccines and durable cures to a range of other diseases. We believe the same tools—a vaccine and a cure—can and must be pursued for HIV.

The broader goals of the SDG era will likely see increased attention on integrated programs that combine multiple health programs, rather than disease-specific programs, with links to education and social and economic development efforts. Smart investments to sustain the momentum for HIV/AIDS control will strengthen health systems and contribute greatly to ending poverty, hunger and inequality, moving the world closer to ending HIV/AIDS once and for all.

Advocates Call on WHO to Lead, Not Confuse on DMPA

What’s the best way to deal with the uncertainty regarding the use of hormonal contraceptives (specifically injectable progestogen-only products like DMPA/Depo Provera) and women’s risk of acquiring HIV? As AVAC and our allies have said for years, it’s to tell women the truth—what’s known and unknown—in the context of programs that offer multiple contraceptive methods and male and female condoms.

More recently, PrEP has entered the equation as another HIV prevention option that should be offered to all people at substantial risk of HIV (per WHO recommendations) and could be piloted in innovative family planning programs. And up until recently, the World Health Organization had supported this approach, with a clear, expert-informed 2014 statement that women should be informed about the uncertainty regarding progestogen-only methods and HIV risk, and that those women choosing DMPA should be urged to use condoms.

Unfortunately, a statement WHO issued in late-October, ostensibly to clarify the 2014 statement, directly contradicts this message. The October statement says, incorrectly, that there is no evidence of a causal association between DMPA and increased risk of HIV acquisition. (There is no definitive evidence, and no concrete proof of causality, but this statement as it stands eliminates all sense of uncertainty for the vast majority of readers.) It rolls back women’s right to know and it removes the recommendation that DMPA users get specific counseling about condoms.

Civil society has responded with concern and urgent demands. An array of groups from many countries, led by ICW-Eastern Africa, sent a letter today to the Director General of WHO, Dr. Margaret Chan, and the head of the Human Reproduction Unit, Dr. James Kiarie. In it they demand that the statement be removed from the WHO website until it can be discussed, with substantive civil society input, at a meeting in December that WHO already had planned on this topic.

The text of the statement is below, along with a list of signatories. A link to the PDF is here. If you would like to download and send with your additional signature to the WHO representatives, be in touch and we will provide their email addresses.

A PDF version of this letter is available for download.

To: Dr. Margaret Chan, Director General of the World Health Organization
Dr. James Kiarie, Coordinator, Human Reproduction Team, World Health Organization Re: Women’s Response to new WHO statement on DMPA

Dear Dr. Margaret Chan and Dr. James Kiarie,

We are writing to express grave concern with the WHO’s 21 October “Statement on Depot- medroxyprogesterone acetate (DMPA)1” and, for the reasons described in the letter that follows, to ask with urgency that the statement be removed from the WHO website until it can be discussed with stakeholders, including in-person consultation at your upcoming meeting on HC-HIV in early December, and revised as needed.

Our reasons are as follows.

  1. Whereas there are a range of studies indicating that DMPA increases women’s risk of HIV and a range of studies that do not find an association, we are gravely concerned that the first sentence of your conclusion, stating “There is no evidence of a causal association between DMPA use and women’s risk of HIV acquisition” is demonstrably false and request that you either furnish the new data upon which your conclusion was based or immediately clarify that statement which, if left standing, will have a detrimental effect on programs and research immediately. This clarification should return to the existing 2014 statement which recognizes the need for further research and the current uncertainty about the existing data in language that is clear and supported by the evidence.
  2. The new statement notes that, “The purpose of this statement is to reiterate and clarify the existing (current) WHO position based on public guidance that is still valid.” We take this to reference the statement released in 20142 based on input from the WHO Guidelines Development Group. We have come to understand that the new statement issued in October 2015 came as a surprise to several members of the GDG, raising questions about the process by which it was developed and reviewed. These concerns are particularly urgent given that your new statement does not clarify or support the 2014 statement but in fact appears to contradict it. For example, the 2014 statement includes the recommendation: “Given the importance of this issue, women at high risk of HIV infection should be informed that progestogen-only contraceptives may or may not increase their risk of HIV infection. Women and couples at high risk of HIV acquisition should be informed about and have access to HIV preventive methods including male and female condoms.”

    We note that the October 2015 statement directly contradicts this important guidance regarding women’s right to information that allows a full, informed choice about their contraceptive methods. Your representative, Dr. Petrus Steyn, has indicated in a recent public forum that the new language was developed “at the request of member states” who found the previous guidance confusing. Rather than acquiescing to member states’ requests without engaging stakeholders who have contributed hours and days of time and analysis to this issue over the years, it would have been far preferable that you referred to the reports, proceedings and action steps from consultations in 2012 and 2013 where the question of whether a broad dual protection message urging all women to use condoms for HIV prevention was a sufficient response to the current uncertainty regarding a specific hormonal method. The answer, as evidenced in the WHO’s own 2014 statement was: No. There is a specific right to information regarding the uncertainty about DMPA. Your current statement rolls back that right and so harms women everywhere.

  3. We note that the existing statement contains expanded language regarding prevention options that should be made available and recognizes the importance of VMMC and ART for HIV positive partners. The new statement, in its brevity, omits these key elements which should also be addressed in a clarification, with additional recognition of the PrEP as a new tool now recommended by the WHO and the subject of a new target from UNAIDS.

Finally, we reject this statement as final and demand that it be removed from the website and treated as a draft until it is put through a rigorous consultative process that aligns it with your existing guidance as developed by the GDG.

Lillian Mworeko
Executive Director, ICW EA

Mitchell Warren
Executive Director, AVAC

On behalf of
AIDS Information Centre, Uganda
AIDS Legal Network, South Africa
ARASA, South Africa
European AIDS Treatment Group (EATG)
GS:SG, Germany
HEPS, Uganda
International Planned Parenthood Foundation, UK
International Community of Women Living with HIV/AIDS Eastern Africa
International Community of Women Living with HIV/AIDS Southern Africa
International Community of Women Living with HIV/AIDS
Lux Vitae, Croatia
Nigeria HIV Vaccine & Microbicide Advocacy Group
Mama’s Club, Uganda
Planned Parenthood, France
Salamander Trust, UK
Uganet, Uganda
Uganda Network of AIDS Service Organizations (UNASO)
Young Black Gay Men’s Leadership Initiative, USA
Zambia Network of People Living with HIV

Anna Forbes, MSS, Independent Consultant, USA
Erica Gollub, DrPH, MPH, USA
Angel Luis Hernández, HIV Prevention Advocate, Puerto Rico
Heidi E. Jones, PhD MPH, Epidemiology & Biostatistics Program, CUNY School of Public Health, Hunter College
Maria José Campos, Medical Doctor, Internal Medicine Specialist, Portugal
John Mutsambi, HIV Prevention Advocate, South Africa
Definate Nhamo, HIV and Sexual Rights Advocate, Zimbabwe
Teresia Otieno, Personal Initiative for Positive Empowerment (PIPE)
Julie Patterson, AVAC PxROAR Advocate, USA
Marion Stevens, WISH Associates, South Africa
DaShawn Usher, Community Education and Recruitment Manager, Project ACHIEVE
Jacque Wambui, HIV Prevention Advocate, Kenya


Biomedical HIV Prevention Forum Special Award

“At the forthcoming 2015 Biomedical HIV Prevention Forum, Professor Elizabeth Bukusi of KEMRI, Kenya, will receive the 2015 Special Award, unanimously nominated by the Forum Organizers for her significant contributions to the science and development of biomedical HIV prevention interventions in Africa.

The New Context for HIV Prevention: Is the world on target?

The new issue of Px Wire, AVAC’s quarterly newsletter on HIV prevention research and implementation, is now available. In this issue, we decipher the strengths and limitations of the multiple recent developments impacting HIV prevention: new PEPFAR targets, new UNAIDS targets, new guidelines on ART and PrEP from the WHO and new Sustainable Development Goals. What does each development mean, and how do advocates tailor their advocacy accordingly?

We’re especially excited about our centerspread graphic (see below) which looks at the sum total of the new targets and guidelines and gives our “take” on whether the current context is on target.

Click here to download.

The full issue of Px Wire, as well as our archive of old issues and information on ordering print copies, can be found at www.avac.org/pxwire.

As always, we welcome your questions and comments at avac@avac.org.

An HIV Vaccine: Imagining the Future of HIV Prevention

In this article, South African HIV prevention activist and member of the Vaccine Advocacy Resource Group—a small, global group of advocates specifically focused on the HIV vaccine research field—Tian Johnson reflects on his participation in the recent HVTN Conference in Cape Town, his hope for a vaccine and the necessity of advocates’ involvement in the search. This first appeared in NGO Pulse.

My sister Miranda, died of AIDS in 2007 at the age of 35, a year older than I am now. She was a mother to three boys who had yet to reach their teens when she took her last breath. That last breath came in a hospital that, even after a prolonged stay, was unable to provide her with the most basic care.

My family, as is often still the case with in many other families, spoke in hushed tones about the cause of her death: pneumonia, tuberculosis (TB)… anything but AIDS. It was almost as if the mention of her name and the disease in the same sentence would erase everything she was and everything good that she had done. She was a sister to me (which alone required the patience of a saint) and a mother who did everything she could to provide her boys with the best childhood she could – far from the turmoil that was our shared upbringing.

As I landed in Cape Town for the bi annual meetings of the HIV Vaccine Trials Network – a global network whose goal is to develop a safe, effective vaccine as rapidly as possible for prevention of HIV infections globally – I wondered what a world with a vaccine for HIV could look like. What would it mean for millions of women like Miranda, living with or at risk of contracting HIV?

I have worked in HIV prevention for nearly two decades now. So, as I imagine a world with an HIV vaccine, part of me cannot help but be sceptical. I wonder if it would have made a difference to Miranda at all. Would she have been able to access the vaccine? Would the nurse or doctor giving her the vaccine have judged her? In all likelihood, the same nurse probably would have judged her when she asked for a contraceptive just a few weeks before coming in for the vaccine. I wonder if Miranda would be able to live with the stigma of being ‘that woman’ who got the ‘AIDS Vaccine’ at the clinic. Would her husband have gone with her? Would he take the vaccine too?

The other, more idealistic part of me imagines that she could access the vaccine with ease, that she would have been received like a hero at her local clinic by health workers proud of her: this beautiful Afrikan goddess who had chosen to make the journey that day to get herself vaccinated, to keep herself safe, to keep herself alive. Alive for me, her brother. Alive for her three boys.

From a distance, the vaccine world is a scary place. It is a deeply scientific and privileged world (a world that I think needs many, many more black faces in it!). Talk of ‘non-human primate’ (monkey) trials, and acronyms like RV144 can be pretty intimidating for an activist who is programmed to just get on with it and start advocating for universal access to a vaccine!

Part of my journey as a member of the Vaccine Advocacy Research Group (the VARG, if you want to sound cool) is to bring advocates from related areas of HIV prevention advocacy into the vaccine fold in order to build our capacity and to support activists to access the researchers. As we get one step closer to creating a vaccine that prevents HIV, the existence of groups like the VARG is increasingly important. The VARG is supported by AVAC (a global NGO) that supports advocates and community members to play a leading role in defining the HIV research agenda.

Although the world still does not have an HIV vaccine, research has been underway for many years, much of it built on work that is happening in South Africa. And just this month, the School of Medicine at the University of Maryland in Baltimore launched the first phase of clinical trials for an exciting new product. In this trial the vaccine is intended tackle virus at the moment of infection, when there is a greater chance of neutralising it. Some pretty impressive people are leading this work including Dr. Gallo, who was part of the team that identified HIV as the cause of AIDS, and developed the HIV blood test.

As ground-breaking science happens around the world, we have a moral obligation to ensure that advocates are brought along for the journey in a meaningful way. Spaces must be created for learning and sharing and opportunities made for mentoring and engagement – as we have found out in the past, creating these spaces takes time and resources – resources that are usually the first to be cut when budgets are tight. The reality is that no matter how impressive the science is, it will have been in vain if it does not fit into people’s daily lives and realities. Sadly, this is what we have seen too often over the years with male and female condoms, treatment and other HIV prevention methods. A product can only work if it gets used. A key barrier to a product getting used is stigma, perhaps the most difficult aspect of uptake and use. As long as sexuality is scandalised and individuals do not see their health, success, and prosperity as being linked to that of their neighbours, we truly have a momentous task ahead of us. The work of changing minds and hearts is never easy, but it is essential. And its work that advocates and activists must lead, hand-in-hand with scientists.

As the first vaccine is likely many years away, we must keep the discussion alive. We need to force ourselves to imagine what the future of HIV prevention could look like: so much of it emanating from world-class South African science and supported by the South African Government. Imagine having a basket of options that we could pick and choose from depending on where we are in our lives: a daily pill to prevent HIV, an annual vaccine to do the same, a female condom when I want and a male condom when I want, a vaginal or a rectal gel to stop me from getting HIV. Whatever world we imagine, we need to keep on doing just that. They say when you become a parent you do everything you can to ensure that your own children have a better life then you had. So we need to keep on working, keep on moving forward, not just for us now but for those who are growing up in this challenging world. Boys like my nephews, who can access options that my sister, their mother, never had.

I am glad I spent a week at the HVTN meetings. They were insightful and at times filled with equal parts of hope and anxiety at the momentous task ahead of us as we collaborate, learn, engage and take time to listen to the multitude of lessons this virus has and continues to teach us about our resilience and tenacity to push ahead in spite of it. As we look forward to many more years of research and advocacy in the quest for an HIV vaccine, we will also keep the faces and memories of those that did not make it along the way first and foremost in our minds. And we must imagine and ACT to realise a better future.