History of the SDHIVC

8/11/24

The San Diego HIV Consortium was created in 2022 to bring the most recent scientific findings in HIV to the local PLH community in San Diego, and to give voice to PLH in writing and implementing research that they want, and how they want it done. It is an educational arm of Pozabilities, 501(c)(3) Charitable organization, EIN 47-3562551.

“Several of us who were infected with HIV over 30 years ago were getting together for bike rides, talking about how to live long and well with HIV, how to get and stay healthy. We remembered how HIV used to be on the front page, in the nightly news back then. We wanted to hear the newest guidelines, research findings, and open research protocols, and encourage in others a re-awakening of the importance of participating in research. New therapies only come from sacrifices we make to be in research studies.”

– John Steinmetz, President, Founding member, SDHIVC

Our mission statement is to facilitate a Patient-Provider forum for community-based HIV providers and patients in San Diego and Tijuana/Northern Baja to discuss the most recent HIV research findings, and open research protocols in San Diego and TJ/Northern Baja. 

SDHIVC objectives are:

  1. To provide a space for PLH to speak to HIV researchers directly about what they see as important to study and how.
  2. To bring the most recent HIV announcements, research publications and research protocols to the San Diego PLH community.
  3. To support local PLH and HIV researchers to attend large HIV conferences to present their research, through a yearly scholarship program that pays for their travel, lodging and conference registration costs.  We preference yearly CROI, IAS, International AIDS Conference, International Conference on HIV and Aging and ACT-HIV.

SDHIVC has a straightforward schedule to present yearly updates after CROI, International AIDS Conference/IAS Conference, ACT-HIV, and 4 visits a year from AVRC and HNRP. The other five monthly meetings have been used for topics that the attendees want to hear about, including nutrition, mental health, spirituality, and maintenance of sobriety.

SDHIVC encourages UCSD researchers to present their findings, especially if subjects are recruited locally. At SDHIVC monthly meetings, for example, Dr. Sara Browne presented at the SDHIVC a CROI 2024 and AIDS 2024 abstracts both on methamphetamine in PLH she authored; and Michael Schulte, UCSD MSIV, discussed an AIDS 2024 Conference abstract he presented their study, done with David Grelotti, UCSD HNRP researcher. Drs Gianella, Scott Letendre, Maile Karris, Dan Lee have also presented at SDHIVC monthly meetings about their specific HIV research.

SDHIVC has conducted many informal surveys, including three with 100 responses on

  1. “What has helped you live long and well with HIV?”

Good relationship with healthcare provider/Dr. (43%), Nutrition/diet (45%), healthy relationships (friends, spouses, lovers, companions (31%), Exercise (23%), Sobriety (11%), Alternative/complementary therapies (9%).

  • “What words or terms do you prefer when others are referring to a person living with HIV, such as ‘infected,’ or other?”

PLH, PLHA, PWH (person with HIV, people with HIV, persons living with HIV), were the most common positive term (33%). 17% left the answer blank or said it did not matter. Other many responses included HIV positive, “Victim, AIDS, full blown or infected” were the most common negative term reported (37%).

  • “What are the three most important research topics, or scientific topics, or new treatments or findings in HIV do you want the consortium to present at our monthly meetings?”

The top three responses were new medical treatments (72%), mental health (45%) and nutrition (38%). Other requests were memory/cognition in PLH (17%), methamphetamine treatment (4%), exercise (12%), yoga (3%), meditation, non-medicine treatments for HIV, “Something other than medicines,” (3%), heart disease, heart attacks, heart disease prevention in HIV (15%), bone health in PLH (4), Spirituality/religion/faith—3%, kidney health in PLH (1 respondent or 1%). AVRC HNRC-HIV research studies at UCSD”

This was a convenience sample, and we stopped at 100, asking attendees after monthly meetings over one year from July 2022 to July 2023. Respondents included 7 cis-female, 12 transgender all male to female, 81 cis-male all MSM, 85 were over 50 years old, 67 were over 65 years old, 10 over 75. Three respondents were in the 20s and all MSM.

Several sessions have been spent on writing research protocols for NExT, Amphetamine salts for methamphetamine withdrawal in PLH, Micronutrients for acute COVID-19 in PLH.

We asked consortium attendees if they would want to participate in a clinical trial in any of these. 20/20 said yes to NExT, 4/20 in methamphetamine study, but we did not ask if they used meth.

Dr. Sara Browne presented CROI 2023, with focus on one study, a late breaker, using eplerenone. Almost all 19 attendees said they had a strong interest in the study. The consortium emailed the PI at Harvard, but received no response, to ask about local studies. Link

Short sessions were held to review an abstract from Pozabilities in NExT in PLH, and to review two abstracts from Las Memorias, a residential facility for PLH in TJ.

Specific Aims:

After over two years later, we are planning

  1. to make our implementation session more formal, such as small, focused groups, with PLH and compensate at $60/hour, and to inform local researchers at AVRC and HNRP;
  2. to improve our website, including adding the capacity to conduct secure surveys of our membership; and
  3. to hire a communications manager to maintain existing important communications and to edit postings such as summaries from major HIV conferences;
  4. to continue our yearly scholarship program to support local research in PLH, and PLH attendance at major HIV conferences.