There will be no issue for the next two weeks. The NewsDigest will return on January 11, 2019. Our best wishes for happy holidays and a peaceful new year, and our thanks for reading!
As 2018 comes to an end, AVAC extends gratitude to all HIV prevention advocates—those we work with, those whose names we do not know—for the hope and fierce commitment that you bring to the work every day.
This year, perhaps the best news was also the most sobering: UNAIDS finally fully acknowledged that there is a prevention crisis, which must be resolved for the epidemic to controlled. A global view hides sites of hope: there are places where there is progress. Our fervent wish for next year is that this progress spreads, as it can and must when we stand together demanding human rights, prevention options and programs built on a foundation of informed choice for all bodies and all lives.
Fighting for justice is only possible when we find time to restore ourselves and connect with our loved ones and communities. We wish you rest and joy—and hope to see you in 2019 for the work that still needs to be done. Want to preview what’s going to require close attention? Check out:
- The current issue of Px Wire, which offers our list of the top 10 questions that need to be answered in 2019.
- The latest episode of Px Pulse, which features a gripping, tripartite conversation among prevention research advocates on the changes in store for trial design and what it means for community engagement.
- AVAC Report 2018: No Prevention No End, which has urgent action items for 2019—and beyond.
With tremendous gratitude, we wish you happy holidays and our very best for the New Year.
This December, Px Pulse features a gripping, tripartite conversation between activists Morenike Giwa-Onaiwu, Stacey Hannah and Jeremiah Johnson about what their long histories fighting for community engagement in HIV prevention research have taught them, and how these lessons can be applied today, and in the future. Tune in to hear three fierce voices with fresh perspectives on how to continue designing trials, and engaging communities, in today’s landscape of expanded, but inadequate, prevention choices.
With daily oral PrEP, VMMC, partner testing and treatment that leads to virologic suppression available as potent biomedical tools, along with condoms and a range of other structural interventions, clinical trials of biomedical HIV prevention strategies to block sexual transmission are more complex, in terms of design and conduct, than ever before.
Listen to this episode of Px Pulse on iTunes or at www.avac.org/px-pulse to learn why this conversation is at a critical moment and how to manage the opportunities for an innovative and collaborative effort with the research community.
Also, in case you missed it, check out the latest issue of Px Wire, which is hot off the presses. Our year-end edition offers 10 questions for activists to galvanize their work in the year ahead. We consider the future of NIH funding for HIV prevention and its research priorities, anticipated results from the ECHO trial, what’s next for the dapivirine ring and much more! The centerspread visualizes a single time frame for trial results and critical targets for incidence reduction and scale up of primary prevention-an essential perspective for the work ahead.
Finally, please don’t forget, your support makes our work possible. Help us continue with a year-end donation at www.avac.org/donate. You can also use smile.amazon.com for your online shopping and select AVAC as your charity of choice. A portion of your purchase price is donated to AVAC—at no additional cost to you!
Happy listening and reading, and happiest of holidays!
As 2018 winds down, we’re struck by the many moments, and movements, in the past year that have depended on listening, without bias and also without loss of conviction. From a bold activist challenge in an elevator, to an array of young women speaking their truths about HIV prevention—the future has hinged on being willing to listen, and on demanding to be heard.
In that spirit, our year-end edition of Px Wire offers 10 questions for activists to pose, with curiosity and conviction, in 2019. What answers do you want, what do you hear, what needs to happen next? We’ll be listening!
Our questions take on the upcoming announcement of how future NIH funding of HIV research will shape biomedical prevention, the anticipated results of the ECHO trial looking at how different contraceptive options impact women’s risk of HIV, the future of the dapivirine vaginal ring and much more.
In our centerspread, we provide a visual for uniting biomedical prevention research and implementation—a necessary fusion for our work in the coming year, and beyond.
Also necessary: your continued support. AVAC depends on your contributions of work, ideas and, yes, funds for our work! We appreciate your support in one or more of the following ways:
- Donate: Visit www.avac.org/donate.
- Amazon Smile: Shop at Amazon.com? Visit smile.amazon.com and select AVAC as your charity of choice and a portion of your purchase price is donated to AVAC—at no additional cost to you!
- US Combined Federal Campaign: If you are a US government employee, support our mission through the Combined Federal Campaign, CFC #12308.
Many thanks for your continued support, partnership and inspiration.
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.