AVAC’s Maureen Luba gave this essential plenary talk on a multipurpose prevention revolution at the HIV Research for Prevention 2018 conference, held in Madrid, Spain. Affectionately known as R4P, it’s a space where HIV prevention takes center stage. Read Maureen’s remarks below or watch her presentation here.

This last Sunday morning I got a very disturbing WhatsApp message from one of my closest friends and the message read:

“Good Morning Maureen, I just found out that my husband is having an affair with someone who is HIV positive. I don’t know what to do and Maureen you know I can’t leave him but my only challenge is that he hates condoms. When are you coming back? I really want to talk to you!!!

I felt helpless, I felt hopeless, and I asked myself some really hard questions: am I doing enough work as an advocate? Is the work that I have been doing really making an impact and is it really worth it? How can I call myself an HIV prevention advocate when I can’t even advise my own friend how she can protect herself from getting infected simply because her husband hates the condom and which is the only HIV prevention available for her (since we still don’t have PrEP in Malawi and we don’t know we are going to have it and I don’t even know if it was available she would like it).

Well you can imagine how painful this week has been for me. When I was coming to this conference for me it was just one of those, but when I got this message it gave me the impetus as to why I needed to attend the conference this week.

I know we all wear multiple hats and affiliations, but whether we are advocates, researchers, funders or policy makers, we are all part of communities, families and relationships. So I speak today as one Malawian woman wearing all my hats proudly.

For me a multi-disciplinary prevention revolution which is the title of my presentation is about four things. It is about a comprehensive, concerted, integrated and sustained response!!!

Comprehensive

And by comprehensive what I mean is that:

• We need to we design, develop and implement a wide range of products, programs and interventions that takes into consideration the different needs and vulnerabilities of different populations.
• It’s not about either/or.
• It is about providing a wide range of choices so that people like my friend can be able to choose the product that meet her needs.
• On Monday this week, my colleagues and comrades stood on this stage with banners written Choice All Over and Jim Pickett (whose persistent I admire so much) and that amazing young doctor from Tanzania passionately reminded us all why choice is important!!
• And I just wanted to use this moment to reinforce their call and that many others at this conference had made – we are not going to end this epidemic if we are not giving people choices!
• We are all working on the same side.
• And we are all working for the same goal. It is not about shame or blame.
• And fighting should not be the only way for us a reach a consensus!!
• We can do this better.
• When I was doing my AVAC Advocacy Fellowship in 2016, immediately after the ASPIRE and Ring results were announced at CROI, a few women from my community reached out to me and asked me where they could access the ring.
• For them the 31 efficacy did not mean as long there was some level of efficacy in it.
• To them they felt the ring could be able to meet their needs.
• And the ring is just one example.
• HIV prevention can become more comprehensive if we all understand and accept that that we can’t sacrifice good enough simply because we are in search for perfect.
• Because, ironically, the thing we are calling imperfect may be good enough for many people who want and need it.
• The voices we raise are not about making choices between long acting versus short acting.
• But it’s about what works for different people.
• Hence it’s not about having one clinical trial at a time, but rather it’s about multiple, simultaneous trials that are able to address the urgent needs of different people.
• Comprehensive prevention also means delivering the options available now whilst developing options we need for the future.
• The tools that exist today need to be implemented, not only because they have levels of protection but because they form the platforms for future strategies.
• Today’s daily oral PrEP program is tomorrow’s PrEP + ring + structural intervention platform.
• And tomorrow’s dapivirine ring program is the platform for a revolutionary integration of HIV and family planning via multipurpose prevention tools.

Concerted

On the other hand, a concerted prevention revolution means controlling or ending the epidemic will require concerted efforts from different stakeholders including from policy makers, funders, CSOs, advocates, communities and the end users.

• Experience has shown us that when funding decisions are made in concert with all relevant stakeholders, the impact is way more better than when it is not only a single entity weaving the influential narrative of what gets funded and what does not.
• We need to create a space where everyone’s needs, fears, vulnerabilities are inherently valued and accorded the desired attention!
• To our funders, we know sometimes it’s really hard to choose from all these competing priorities, but together we can make those hard decisions and achieve the desired impact in the end!!!
• All we need is to recognise the expertise each one of us brings to this discussion and supporting each other’s efforts so that, synergistically, we can be able to enhance the impact of the individual spaces which we occupy.
• Again, it is about having one research agenda that is co-created by researchers, policy makers, funders, communities and end users.
• Like I said, all of us have the same goal which is to the end the epidemic.
• Yet currently everyone seem to be serving their own agenda.
• Advocates: we do have our research agenda, principal investigators have their own research agenda too and so do policy makers and funders!!
• Yet we know that the only way we can end the epidemic is by co-creating an agenda that prioritizes the needs of those affected by the epidemic.
• Talking about a co-created agenda, on August 30th this year (almost two months ago), civil society in Malawi conducted a national research consultation meeting where we brought together site investigators, ethics research committee representatives, policy makers and development partners in our room to discuss some of the critical issues in research in Malawi.
• This was a meeting organized and funded by civil society, with civil society leading the agenda setting with input from everyone else.
• One of the agenda items for the meeting was a discussion on the National Health Research Agenda (a document which highlights research priorities in Malawi).
• Everyone in the room had a chance to contribute to what should be included in the research agenda.
• I tell you this meeting was such thing of a beauty!!
• Everyone loved it!!!!
• I remember one of the principal investigators saying ‘Can we have such type of meetings every 6 months?’.
• And this just demonstrates the ability for us to co-create only if we choose too.
• It is possible if we make it happen.

Integrated

Integrated prevention revolution on the other hand is not requiring programs or stakeholders to lose their primary focus.

Rather, it’s about figuring out how do all these interventions that we are designing, implementing and advocating for fit into the broader context and complexities of the target populations.

• When we know that increasing frequency of clinic visits does not fit into the realities of the lives of women.
• Hence, when we are developing products and designing programs, we need to be being conscious of the fact that the same women we are targeting for our PrEP programs are the same women with two monthly clinic visits for DMPA shot who could also be same target population for once monthly bNAb vaccine shots.
• When designing our research and implementation programs, we need to design studies that recognize, recruit and follow up study participants as social beings and not just a biological product.
• Trials can only do better by paying enough attention to what is happening on the ground.
• Which many of us may have been missing — not by a purposeful act of omission — but maybe it’s because we simply don’t know how to reach and interact with communities as social beings!
• Well that’s our function. As your partner – as community advocates, we are here to support you and provide those insights.
• We can help bridge that gap.
• And we are very passionate about making things work.
• We have made HIV work, as history will recount.
• We have made research work for treatment.
• We created the concept of microbicides for our needs.
• We have pushed the field this far.
• We can push further whatever it is we co-create.
• We are alive to transparency and accountability.
• As watchdogs, this is the role we have to play.
• As different stakeholders we all have different strengths.
• But with synergy, we can achieve a lot more with our individual strengths.
• The lines in the HIV field are becoming blurred.
• The silos are breaking.
• With waning resources in the terrain, working synergistically is the only way we will all achieve our goals cost effectively.
• We do not need to learn lessons after huge expensive trials.
• There are lots lessons we can learn by listening, hearing, trusting and doing.
• I am an example of how we advocates drive the field with passion.
• I am an advocate from Malawi.
• I am a key player in the civil society space.
• I am a member of the Vaccine Advocacy Resources Group on whose platform I advocate for vaccine research.
• I am also a Board Member for Intentional Partnership for Microbicides where I have been strongly advocating for microbicides and the HIV prevention needs of young women.
• Back home I sit on the PrEP task force where I work with my CSO colleagues to advocate for the roll out of PrEP.
• I am also one of the core group members for AfnHI where I have been advocating for increased regional and sub-regional funding for HIV prevention.
• The list goes on.
• To some of you may, this may read like a confused human being.
• I however reflect the lives of many advocates seated in this room who think about integration rather than silos.

Sustained

Lastly it is about a sustained response and by this I mean:

• HIV prevention can be sustained if countries and communities are able to own the response.
• It’s about governments beginning to own the response.
• We as community members are leading that push for government ownership.
• We push for regulatory actions now ahead of the future.
• We advocate for country preparedness for future products down the line.
• Because we believe we are the face of the sustained interest in biomedical HIV prevention research.

Closing

In closing!!!

• It’s has been great conference for me, but sadly as am going back home to my friend and I am still not sure how I am going to help her.
• I still don’t have the right answers for her!
• And she is just one of millions people across the globe who are in similar situations like her.
• I hope by the time we will all be leaving this conference today everyone of us in this room will realize that the stakes are high.
• We need to build bridges between science and real life experiences, responses need to be comprehensive, approaches have to be integrated and our efforts need to be sustained.
• There is no time for complacency.

Thank you!!!!

The August episode of Px Pulse is waiting for you!

In this episode, featuring Ambassador Deborah Birx, we take a look at one area of great importance that was center stage at last month’s AIDS 2018 conference in Amsterdam: primary prevention.

Hear Brad Jones of Weill Cornell Medical College pose a basic question about T cells and what his research could teach us about the immune system. Advocate Dorothy Okatch of the NGO Young 1ove sizes up the challenges for prevention in her country Botswana, where gains in treatment have been lauded.

And you won’t want to miss our discussion with the head of PEPFAR (the US President’s Emergency Plan for AIDS Relief), Ambassador Deborah Birx, who oversees one of the biggest HIV/AIDS programs in the world. Hear how Amb. Birx defines today’s prevention priorities and find out the difference between “lumpers” and “splitters”.

For the full podcast, highlights and resources go to avac.org/px-pulse. And subscribe on iTunes to catch every episode!

Emily Bass is the Director: Strategy & Content at AVAC.

“Making yourself vulnerable means looking in the mirror,” said David Malebranche in his plenary speech today (July 26) at the International AIDS Conference in Amsterdam. His talk was pure power and poetry, and I (yes, it’s Emily Bass here again) would probably be well-advised to get out of the way and just transcribe it, but instead I’ll urge everyone to view it in its entirety (what do you think comes up with a Google image search for idiot?!) and, in the meantime, look in the funhouse mirror of the conference a bit more.

What do I see when I look at myself? A white, American, feminist, writer, mother and rights-based social justice activist with a passion for queer and women’s issues who has focused her work on HIV in biomedical issues for much of her career. Rights is in that list, but it’s more context than primary subject—until this week, when, as lead rapporteur for Track D, which focuses on human rights, I’ve looked at the conference, combination prevention, and myself differently. (Check out daily summaries here.)

Here’s what I see at the conference: The biomedical prevention field that is one of my professional homes has both an obligation and an opportunity to merge science and rights. So do I. The field, with historic and ongoing acknowledgment of the human rights issues that affect whether a program works or a product gets used, has laid a fair foundation. But in many parts of the world, foundations stay bare for years. Especially if money is lacking. We need to build, together, a deeper, more systematic, detailed and intentionally-designed approach to a hybrid rights-and-science agenda. The anti-HIV criminalization movement says it perfectly: human rights plus science equals HIV justice.

The signpost at this intersection of rights and science? Combination prevention. It’s a destination we haven’t arrived at yet. Not me, not the biomedical prevention field, not the broader AIDS response.

From both the human rights and biomedical perspective, the AIDS response is largely missing the boat on combination prevention, with sloppy definitions, inadequate funding and poor adaptation of evidence. Fortunately, Wednesday’s plenary speaker Nduku Kilonzo, director of Kenya’s National AIDS Control Council, said as much in her tremendous presentation, highlighting a “prevention crisis” and calling for reinvigorating primary HIV prevention and delivering differentiated prevention programs. Peter Piot, another Thursday plenary speaker, said much the same thing, pointing out diminishing prevention funding and that the quality of funding matters as much as the quantity—and dollars dedicated to censorious programs that prevent discussion of comprehensive sexual and reproductive health are not high quality.

Yesterday also brought the release of data from several trials that were, when launched, billed as “combination prevention” trials. The Botswana Combination Prevention Project (BCPP) and the SEARCH study both claimed that moniker—and then defined the approach quite differently, as did PopART (HPTN 071), a study in Zambia and South Africa that has not yet released data. In Hall 12, the largest room in the conference center, BCPP reported a 30 percent incidence reduction in communities where individuals with HIV were initiated on ART compared to those who were treated according to national guidelines. While BCPP included that buzz-phrase “combination prevention” in its name, the other element in the combo package was HIV testing, which is not, in itself a prevention tool, unless all people who receive a test result, positive or negative, also get linked to evidence-based prevention or treatment.

SEARCH went much further, defining its package to include same-day ART, treatment for diabetes and hypertension, and testing for malaria and TB. This trial, which ran in Uganda and Kenya, did not find evidence of greater incidence reduction in those who received the package, though it did see significant reduction in viral load, TB diagnoses, hypertension, knowledge of status and linkage to treatment in the intervention arms compared to the control. Why no incidence reduction? One answer, offered by SEARCH principal investigator Diane Havlir, is that SEARCH had an “active control” arm insofar as all communities had access to ART under government programs, and the control arm also had health fairs at the beginning and end of the three-year trial.

There is much to say about what the studies did and didn’t find—and why. In this particular note, I want to call attention to the results but also to a broader issue, which is that neither defined combination prevention in ways that reflected the evidence available at the time that they were launched. For example, in the context of study countries, they could have but did not include data on the number of infections averted when voluntary medical male circumcision is taken to saturation coverage (80 percent) among target male populations. Data on oral PrEP arrived later in the trial periods; data from the DREAMS Initiative programs on the impact of layered structural interventions for adolescent girls and young women must be integrated in any meaningful examination of combination prevention.

Combination prevention also, per this conference, must address rights infringements. In a powerful, information-packed session (WEPDD01), researchers from Kenya, Canada and Russia described how food insecurity, gentrification and housing insecurity respectively were independently associated with having a detectable viral load (Kenya). The same was noted for lack of access to health services (Canada) and risk of sharing injection equipment or using a syringe after someone else (Russia). Given the emphasis on U=U (undetectable equals untransmittable) as a prevention tool (the co-chairs choice session also saw data showing U=U is true for men who have sex with men!), integration of methadone maintenance treatment, policies and practices supportive of housing and food security and decriminalization of sex work and drug use are all evidence-based components of true combination.

Do these things need to be evaluated in trials? Not necessarily. In pointed remarks from the floor of a session on PEPFAR engagement on different thorny issues, Ambassador-at-Large and PEPFAR head Debbi Birx compared the investment in combination trials with investment in national-level programs taking key interventions to scale. “My opinion on this, not the US government’s, is if I look at what Namibia did, they got the same results as PopART, SEARCH and BCPP—these three studies cost more than all the PHIAs (Population-level HIV Impact Analyses) put together. We have to relook at how we invest and what we invest in.”

To date, the PHIAs have captured a remarkable level of incidence reduction accomplished mainly through scale-up of testing, treatment and achievement of virologic suppression in people living with HIV. That’s significant but not adequate to dropping incidence to the levels that would be classified as epidemic control. What gets us all the way? Scale up at a level not yet attempted, or even funded, of the elements of true combination prevention. And, as David Malebranche told his fellow Black same-gender loving comrades, “Let’s love on ourselves.” He wasn’t talking to me, nor should he have been. But he offered an invitation, as I heard it, to pose these questions: When you look in the mirror do you love what you see? Do you love it if you admit what you don’t know, if you cease to be the expert? Does the definition of combination prevention look different? I know I will be checking myself on these questions more frequently in the months and years to come.