The pre-CROI Cure Research Community Workshop is a common ground for researchers and community
There was a time when someone mentioned science to me that my first thought was of dissecting frogs, lab beakers and making a paper-mache volcano explode. These days its viral life cycles, medication modalities, implementation science and most importantly—the impacts of all of these things on people living with HIV.
Having said all that, I love when community and science converge in an intentional way. Particularly when it is driven by members of the HIV community who are versed in science and want to use their access and proximity to research to foster conversations and understanding into the broader community. The Pre-CROI Community Workshop, hosted by TAG (Treatment Action Group), held every year before the Conference on Retroviruses and Opportunistic Infections is one of those spaces. Richard Jefferys pulls this meeting together and it grows year over year. I have attended three of the last four years and this year, co-facilitated the meeting with Micheal Luella (Fred Hutch/defeatHIV Collaboratory), Jeff Taylor (HAR+PS/RidHIV Collaboratory), Luis Shackleford (HVTN) and Danielle Campbell (UCSD/RidHIV Collaboratory).
Held February 21 in Denver, Colorado, the meeting brought research and scientific experts into a space with people living with HIV and translated complex HIV and cure science research and its trials into translatable understanding. This accessibility helps to ensure that advocates and community leaders have the critical information needed to support the HIV community. The thing I think that is far less recognized is that it is also an opportunity for researchers to hear the voices and opinions of the experts outside the lab—those of us living with the virus.
The workshop this year featured seven presentations highlighting infrastructure of cure research and studies about the HIV reservoir (places the virus hides in the body) by Nicholas Chomont of Canada, unique clinical trial designs for HIV cure research focused on analytical treatment interruptions (ATI) and viral rebound once medication is stopped, by Carlo Sacsalan of Thailand. Danielle and I led a conversation and presented data about the under-representation of women along with their preferences around cure research. Important in the current climate of global HIV, Gaston Devisich of LAC-Cura, the consortium that fosters cure research across Latin America and the Caribbean, , impressed upon us the importance of expanding research beyond high-income countries. Rachel Rutishauser helped us examine post-intervention control through a look at biomarkers and immune response, while Shari Margolese talked about collaborative engagement and why it should be treated as core to research. Finally, Linos Vandekerckhove of EU2Cure, which is a European collaborative effort, discussed combination cure approaches and international cure trials.
Exploring how medications work and why it’s necessary to have so many different classes of medication gives me a sense of investment in my treatment.
I’m always amused when basic science comes up as a descriptor about HIV topics because it is anything but basic, however, a good presenter such as the ones at the meeting can break the talks down in ways that make it feel approachable and digestible. If I tried to explain a bit of all of these talks this article would be pages long. Fortunately, Micheal and the good folks at defeatHIV have all of the presentations broken up by talk on their YouTube channel. One of the Martin Delaney Collaboratories, the defeatHIV YouTube page also hosts a robust library of other community and science conversations.
Since choosing advocacy as a path within my HIV diagnosis, I have become increasingly interested in the science behind it. The Human Immunodeficiency Virus is interesting, in fact if one is able to set aside the stigma that comes to the forefront of HIV, it’s actually fascinating. As a nurse, it’s critical to me that people living with HIV are represented as more than blood, tissue and cell samples.
Personally, I feel better understanding the life cycle of the virus and how it inhabits my body. Exploring how medications work and why it’s necessary to have so many different classes of medication gives me a sense of investment in my treatment. I worry about people being able to make informed choices about treatment or understanding the nuance in cure research. Having choice in what you take for HIV management is important, but understanding the origins, mechanisms and history of those choices can bring clarity beyond just feeling like you “have” to take a pill or get an injection because a clinician told you to. I especially think that understanding why cure has been elusive and what combinations of treatment might work to finally make it scalable and equitable for everyone can foster hope and encouragement to those struggling with the diagnosis.
I want to send a huge hug to everyone who was in the room both virtually and online during the meeting. HIV cure is a complex, ever changing field. The support and love of the HIV community for each other doesn’t change, and that matters as we navigate this life process. Do yourself a favor, check out the videos. If you learn something, thank a scientist, researcher or an advocate. We’re all in this together.
Be well. You matter.
BRIDGETTE PICOU, LVN, ACLPN, is a licensed vocational and certified AIDS Care Nurse in Palm Springs, California. She works for The Well Project-HIV and Women as their stakeholder liaison. Bridgette is a director at large for ANAC (the Association of Nurses in AIDS Care) and a sitting member of the board of directors for HIV & Aging Research Project-Palm Springs (HARP-PS). Bridgette’s goal is to remind people that there are lives being lived behind a three- or four-letter acronym.