2020 has brought unprecedented catastrophe and uncertainty—from droughts, storms and wildfires related to climate change, to short-sighted, self-serving political manipulations, and a pandemic ravaging global health and the world economy—but those committed to the research enterprise in HIV have persevered with important advances. Efficacy results for one trial on long-acting injectable PrEP and a positive opinion allowing the Dapivirine Vaginal Ring to continue toward regulatory approval, right? These results have won inspiring news headlines, and HIV cure research is no exception: Has someone just been cured of HIV with a cheap, simple drug regimen? Promising results for vesatolimod in monkeys and humans. Brazilian man in long-term HIV remission – without a stem cell transplant. HIV and COVID-19 research must continue, and advocacy for funding is imperative. This just released report from AVAC and the International AIDS Society, the Global Investment in HIV Cure Research and Development in 2019, tracks the latest investment data and provides an analysis of funding trends. Read on for a recap of the findings and also check out AVAC resources on funding for COVID-19 research here.

Key Findings in Cure R&D Funding for 2019

Investments in HIV cure research, including therapeutic HIV vaccines (for treatment), increased approximately 1 percent, from US$323.9 million invested in 2018 to US$328.2 million in 2019.

Compared to the US$88.1 million invested since tracking began in 2012, 2019 investments represent a 272 percent increase. But these 2019 figures also represent a much smaller year to year increase than seen in previous years.

The public sector accounted for the majority of funding, at US$306.7 million, with the remaining US$20.7 million invested by philanthropies such as amfAR, the Bill & Melinda Gates Foundation and Institut Pasteur.

The smaller year to year increase may reflect research funding cycles or even the challenges of funder reporting in the midst of the COVID-19 pandemic, and may not reflect a broader trend. But another report, the Fiscal Year (FY) 2021 NIH HIV/AIDS Professional Judgment Budget: Catalyzing Partnerships for HIV Prevention, released by the National Institutes of Health (NIH) Office of AIDS Research (OAR) on August 4, 2020, adds an additional dimension to consider.

The Professional Judgment Budget provides guidance to the US Administration and US Congress on underfunded research in HIV. It’s a sort of wish list for HIV research at the NIH. For FY21, the OAR recommended a 9.2 percent increase for HIV cure research at the NIH, an amount significantly smaller than other areas of research addressed in the Professional Judgment Budget. This budget suggests that the largest funder of HIV cure research by far, the NIH, sees both opportunities for growth, but also limits to new research opportunities as compared to other research.

As advocates, it will be important to continue to highlight the importance of HIV cure research and areas where research should focus. This report should serve as a tool for advocacy and to inform public policy that accelerates scientific progress in cure research. We thank all of the individuals who contributed data to the report and who gave time and effort as trial participants.

If your organization is a funder or recipient of HIV cure grants, and we don’t know you already, please contact us at analysis of funding trends for HIV prevention research at large, due out early in 2021.

Jeanne Baron is AVAC’s Senior Editor and Producer of Px Pulse.

The Advocacy-for-Cure Academy, a partnership of AVAC and IAS, has been developing its cutting-edge curriculum, having completed two annual sessions and promising more in the years to come, just as the field of cure research and advocacy has accelerated on the heels of high-profile breakthroughs.

This is a time like no other before for cure research in HIV. The second person in the history of the virus was determined to be cured, announced in early 2019. This event came as heightened interest in the progress of cure-related research can be felt in standing-room-only sessions at scientific conferences. It’s no surprise that for every available seat at the most recent Advocacy-For-Cure Academy there were 10 times as many applicants who vied to fill them.

The Advocacy-For-Cure Academy has set out to prepare a generation of cure advocates. Over three days of the 2019 Academy in May, leading cure researchers and seasoned advocates explored the current strategies under investigation. They took a focused look at adult versus pediatric immune science and the implications for the cure strategies being pursued in different populations. They turned over the pros and cons of treatment interruption, boned up on points of advocacy around trial design for small, early-phase in human trials, and more.

Long-time advocate in HIV, Botswana’s Kennedy Mupeli of the Centre for Youth of Hope, who is also a former AVAC Fellow, was one of 27 applicants who won a seat at the Academy held in Gabarone, Bostwana.

“What I learned these couple of day—about things like latency-reversing agents [drugs that force latent HIV to express itself so that the immune system can find and kill it] or a therapeutic vaccine [a vaccine for inducing remission rather than prevention]—it’s going to be up to advocates to connect both communities and policy makers to this information.”

And Mupeli had no trouble explaining the value of this education, “Long-term ART, that’s what we have right now, but the failure to eradicate HIV in the long term is not acceptable. We need to bring hope to the community.”

Yet fundamental questions remain to be solved before a viable strategy can emerge. For one thing, scientists are struggling to measure the viral reservoir—a key consideration when trying to evaluate if an intervention has eliminated latent HIV. The uncertainty leaves researchers looking at treatment interruption (aka, analytic treatment interruption or ATI) as the only sure-fire method to learn if HIV is still in the body or not. But interrupting treatment to test an unproven strategy raises unique challenges and ethical questions, particularly when the trials may involve placebos to account for the number of individuals who naturally control the virus after treatment known as post-treatment control. The pressure is on.

“It’s time for a cadre of advocates with expertise in cure research to be at the table, pushing for advances that will empower affected communities and be centered in human rights,” said another attendee at the 2019 Academy, Ulanda Mtamba, Country Director of Advancing Girls’ Education in Africa and also a former AVAC fellow.

Among other things, the field needs advocates offering a critical eye on trial designs and helping communities understand the science as well as the risks and benefits of participating in research. This is all the more urgent, as Mupeli said, because the interest among researchers is not matched by even general awareness of these advances among communities most affected by HIV.

“Cure-related research is happening but no one has any idea of the work being done on this. I hear from many stakeholders in my community. They know about advances, we talk about 95-95-95, we talk about viral suppression, but nothing whatsoever about cure.”

But with the announcement earlier this year of the second known cure on record, awareness may be on the rise. The agenda in Gabarone featured an overview of the science behind the two only known cures to date—both involving bone marrow transplants among patients with cancer and HIV. Participants learned why these two cases cannot be scaled to the 37.9 million who are infected today, and why and how they do inform the science of other strategies like cell and gene therapy.

AVAC’s Jessica Salzwedel, who coordinates the Academy, said participants learned “when and if the cohort of people who have achieved long-term remission from a bone marrow transplant grows from 2 to something bigger, researchers might be able to find commonalities in their genes or in the immunologic pathways. If you can find a common thread among them you can use those pathways to find curative strategies—like a drug or a gene manipulator or a new target—that could be effective for a broader population.”

Attendees learned the basics of a widening number of strategies under investigation such as cell and gene therapy, latency reversal, immune-based strategies and block and lock.

Mtamba digested these new concepts but was just as rapt by a history lesson. A morning session by Kenya’s Maurine Murenga, founder of the Lean on Me foundation covered the role civil society played in major advances in HIV treatment and prevention. “That journey really struck me. Civil society has done so much. They had their demands and were not afraid. It just happened again around the guidelines the WHO has issued for dolutegravir. A battle may look impossible, but we can win. The ultimate goal is finding a cure and the time has come to fight for it.”

Since the 2019 Academy ended, both Mtamba and Mupeli have expanded their work in cure advocacy. Mtamba held a media training with Malawi journalists who were learning about cure for the first time and published stories. More trainings are planned for media and Malawi’s civil society. Mupeli who conducts trainings on HIV across Botswana now includes a section on cure, and he’s developing a cure manual to leave behind. “The idea is to expand this movement across Botswana.”

With the help of the Academy, it won’t just be Botswana that sees a growing movement.

Rob Newells, Executive Director of AIDS Project of the East Bay, PxROAR member, and minister and founder the HIV program at Imani Community Church in Oakland, delivered this address to the amfAR Cure Summit in November.

Thank you to Dr. Rowena Johnston and all the good folks who organized this Summit for allowing me the opportunity to share some thoughts about my vision for HIV Cure research. I won’t be before you long… and if you’ve ever been to a black church, you know that’s the lie that the preacher tells before they put you to sleep with a 2-hour sermon… but I promise, I’ll try my best not to do that this early in the program.

I’m not here to talk to you about all of the new and exciting things that are happening with cure research. There are people with degrees that will share that stuff with you later. I am a community advocate. Yeah… I’m the Executive Director for the oldest HIV services community-based organization in Alameda County… but at my core, I am a community advocate.

I am a 48 year-old, same gender loving black man born and raised across the Bay in Oakland. I’m a 70s baby, so I saw the city go from 50 percent black when I was a teenager to 25 percent black now. (Gentrification is real.) I went to middle and high school with the children of some of the country’s most legendary drug kingpins of the 70s and 80s. I’m pretty sure I grew up middle class… but sometimes I think white middle class and black middle class are totally different. I’m a United States Marine Corps veteran who didn’t figure out he was gay until halfway through college, which for me was after my military service… Which means that I became sexually active when the epidemic was still at the top of the national news.

I started doing work around HIV prevention education in 1999. (I had a cousin and some friends living with HIV, and I had lost an uncle, a couple of church choir directors, and a choir member to the disease by then.) I tested positive for HIV in 2005. Seven years later, in 2012, I became a licensed Baptist minister… as a gay man living with HIV. (My ordination is next Sunday in Oakland in case you’re interested.) 2012 is also when I formally started working with AVAC on biomedical HIV prevention research advocacy, and talking to black men in Oakland about what was coming down the prevention pipeline. I had learned a little about cure research by then, but my real intro was at the HIV Cure Community Workshop and Pre-Conference Symposium in Durban, South Africa, before the 2016 International AIDS Conference.

That’s where I met my brother Moses Supercharger from Uganda. Getting to know Moses and his work helped me to understand that there isn’t much talk among members of my community about the need for an HIV cure mostly because in this country we’ve been driving home the message that we already have the tools we need to end the HIV epidemic. PrEP has been approved for 6 years now. Treatment as Prevention works. Undetectable really does equal untransmittable. And condoms still work. So why do we need a cure?

Moses asked the question a couple of years ago, “How do you end the HIV epidemic if people are still living with AIDS?” It’s a simple question, but when government agencies and charitable foundations are deciding where to send limited research dollars, it starts to get complicated. Why do we need a cure?

Cure may not be at the top of the HIV wish list for much of my community, but for our brothers and sisters in Africa – the continent most affected by the virus – cure is essential. U.S. citizens enjoy the privilege of traveling to countries around the world without having to obtain a visa. Africans living with HIV are routinely denied travel visas. And the social stigma of living with HIV in Africa is many times greater than it is in the United States… and the pill burden is often greater. While Americans have multiple options for once daily single-tablet regimens, Moses told me that he takes seven pills each day: three in the morning, one in the afternoon, and three in the evening. He’s been living with HIV for 20 years now. He’s tired of taking pills. Hell! I’m tired of taking pills. We’re tired of taking pills. And everybody doesn’t even have the option. Everybody doesn’t have access to treatment. So the 36.9 million people living with HIV and AIDS globally need a cure.

So… even if we can all agree that we need an HIV cure, do we really know what that means? Nope. We don’t know because y’all don’t know. A cure could be total eradication of the virus from the body. Or it could be more like remission is with cancer. Or it could be a “functional” cure where the virus remains in the body at undetectable levels without the continued use of antiretroviral medications. Who knows? There are all sorts of extremely smart infectious disease specialists, oncologists, geneticists, mathematicians, social scientists, physicists, lions, tigers, and bears (Oh, my!) working to make something happen. Something that will mean I don’t have to take any more pills, and I won’t infect my partner by having condomless sex, and my HIV test will come back negative. Well… maybe not me… but maybe my little cousin’s oldest son who called me while I was at the airport on my way back from the International AIDS Conference in Amsterdam this summer to tell me that he had just tested positive for HIV. Maybe he’ll get a cure.

This is my second year working with the Community Advisory Board for the Institute, and I’m still learning. As you can tell, I am not a scientist, nor am I trying to be one. I see my role as asking the questions my community members would want answers to, and understanding enough about what the researchers are doing to be able to talk about it in plain language with the folks who live and work and play and worship in the same circles where I live and work and play and worship. So catch phrases from researchers like

Block and Lock…
Shock and Kill…
Reduce and Control…

…those all sound a lot like…

“Catch and Release” from immigration officials or
“Stop and Frisk” from law enforcement officials…

These cutesy little shorthand ways of talking about getting to some sort of cure might work for some folks, but… as for me and my house… these phrases can be triggering. As much as I would love to be cured of my HIV, the language we use has the potential to keep a lot of my cousins away.

As unbelievable as it may sound, everyone doesn’t want a cure for HIV. There are folks who are afraid of a cure for HIV. The freedom from daily pill-taking and the (maybe) reduced stigma, depending on what type of cure we end up with, are huge pluses, but are we really ready for a cure?

I was in Madrid for the HIV Research for Prevention conference last month, and there was a poster about what HIV prevention researchers should know about what HIV Cure means to what they called “HIV disparity populations” in the United States. Some researchers in Chicago talked to groups of young men who have sex with men, men of color who have sex with men, transgender women, and cisgender women of color about HIV cure research. This fear kept coming up.

For a lot of folks, having a cure for HIV would bring a kind of freedom… freedom from pill-poppin’… freedom from HIV stigma… freedom from discrimination and criminalization… But for a lot of folks, having a cure for HIV would just make it okay for people to start having lots of crazy, condomless, raw sex. (Oh, no!!) The folks implementing PrEP have heard all this stuff before.

I mean… HIV has made us afraid of our sex. That’s absolutely horrible. It’s bad enough that we are ashamed of our sex… but we have been afraid of our sex… afraid our sex would kill us… for almost 40 years now. What will it take to address that fear? How long will it take? Who’s gonna handle that? Seriously. We’ve got to have some real conversations about what sexual freedom looks like post-HIV in the years leading up to a cure if a cure for HIV is going to be widely-accepted in communities where effective treatment is already an available option.

So, I guess my vision for HIV cure research is not really about advancing the science. Y’all are gonna do that. My vision for HIV cure research is about the freedom. (I think about my freedom a lot in our current political environment.)

My vision for HIV cure research is about freeing all of us from disease and stigma and shame. It is about freeing all of us from these daily handfuls of pills for treatment of HIV and the other stuff that comes with it… but it’s also about freeing all of us up to, without fear, have as much (or as little) good, guilt-free sex as our little souls desire…

So, researchers… I need you to be having lots of good, guilt-free sex. Get out of the lab or the clinic or the office and go get some. I need you to be free, too! As Bishop Yvette Flunder says, “Free people, free people.”

And I believe in y’all. You can do it. I believe that the smart people in this room are gonna help develop a cure for HIV. And every once in a while, when you’re in your lab or your clinic or your office, you’re gonna think about me and my baby cousin and the other folks you’ll meet today who are living with HIV… and you’ll be thinking about all the good, guilt-free sex we wanna have… and you’re gonna come up with something that will work… even for folks who don’t trust you and your little research… and it’s gonna be good. I need you all to believe that… because I am believing in you.

Thank you for your time.

The June episode of Px Pulse is up!

In this episode, researchers and advocates debate the rationale, risks and ethics of interrupting treatment as part of cure research. This is known as analytic treatment interruption or ATI.

AVAC spoke with advocate Udom Likhitwonnawut about when and why treatment interruption might make sense. Two cure researchers—Dr. Steven Deeks and Dr. Dave Margolis—share their differing views on treatment interruption; Deeks is professor of medicine at the University of California, San Francisco, while Margolis leads the Collaboratory of AIDS Researchers for Eradication at the University of North Carolina at Chapel Hill. Finally, HIV advocates Flahvia Namwaya and Moses Supercharger Nsubuga talk about what a cure would mean for those living with HIV.

Listen to this episode to hear the hopes, scientific mysteries and doubts surrounding HIV cure research and ATI.

For the full podcast, highlights and resources, visit here. And subscribe on iTunes to catch every episode!