Consumers Committee Minutes, March 15, 2022



Tuesday, March 15, 2022, 2:00PM – 4:10PM

By Zoom Video Conference

Committee Members Present: Charmaine Graham (Co-chair), Leo Ruiz (Co-chair), David Martin (Consumer-at-Large), Atif Abdul-Haqq, Asia Betancourt, Paul Carr, Billy Fields, Lawrence Francis, Yves Gebhardt, Graham Harriman, Ralph Henderson, Michael Rifkin, John Schoepp

DOHMH: Melanie Lawrence, David Klotz, Jose Colon-Berdecia, Kimbirly Mack

Guests: Theo Sandfort (Columbia University HIV Center), Maiko Yomogida (CHAIN), Jovi Dixon (SUNY Downstate)

Agenda Item #1: Welcome/Introductions

Leo and Charmaine opened the meeting followed by a roll call.

Agenda Item #2: Letter of Support: Stigma Project

Theo described a new Ending the HIV Epidemic (EHE) project that Columbia University’s HIV Center is applying for to work with NYC and NYS on reducing stigma in healthcare settings.  The proposal is to develop a toolkit for providers and consumers to help them determine what steps they can take to reduce stigma in their own healthcare settings.  Michael and Billy had recommended that Theo ask the Committee for a letter of support.  Committee members suggested that the project include a focus on transgender individuals.  There was a consensus to provide a letter of support.  Council staff will draft it and run it by the chairs for review and signature.

Agenda Item #3: CHAIN

Maiko presented on young adults (18-35) in the CHAIN study.  She gave a brief overview of the CHAIN study (a representative cohort study to assess health and social service needs among PWH in the EMA).  Data from the cohort is from 2012 through 2021.  The age range studied is 18-35 rather than through 25 due to the low numbers of people under the age of 25.  Comparisons were made to the next oldest age cohort, 36-55.  CHAIN participants ages 18-35 were more likely to be male, Black and from the Bronx.  They were slightly more likely to have graduated from high school and to be employed (especially part-time).  More were likely to be unstably housed.  Fewer in the younger cohort were likely to use hard drugs or have been incarcerated, but more were likely to have experienced poor mental health functioning.  Significantly more reported condomless sex.  

Feelings of self-efficacy and perceived stress were similar to the older cohort.   The younger cohort was slightly more likely to perceive or experience HIV stigma.  Reported barriers to care were similar among the two age cohorts.  The older cohort was more likely to have received housing, food and mental health services, but the younger cohort was more likely to have received case management.  Levels of engagement in care, ARV use and viral suppression were similar. 

The study next hopes to look at predictors of outcomes (i.e., what works for younger people to maintain ARV adherence and reach viral suppression).  For example, for younger people, problem drinking and perceived stress may be factors in lower viral suppression.

A summary of the discussion follows:

  • The study affirms the need for a live resources map to help people locate services.
  • Having a job is a factor is missing appointments for all age groups due to the difficulties of taking time off or finding a clinic with after work hours.
  • It would not be helpful to compare the same group of people at different ages due to the changes in the health care environment (i.e., new treatments, etc.).

Agenda Item #4: Check In

Melanie led a check in for members, who answered questions on how they are feeling, what their goals are, and who they can turn to for help.

Agenda Item #5: Youth and HIV Forum

The Committee reviewed a draft agenda for the Youth and HIV Forum, which will be virtual.  There was a consensus to hold the ice breaker after the keynote speakers.  Leo stressed the need for the most recent data to be presented (epi data will be as of 2020).  The poll after the data presentation can be on how clear the data was to understand. 

Jovi presented a draft flyer for the event.  Committee members gave comments on the title, text and graphics.  Jovi will send a revised version to Melanie soon. 

Agenda Item #6: Public Comment

David M. reported that the Presidential Advisory Council on HIV/AIDS (PACHA) is asking for recommendations for improving HIV services and suggested that the Committee members submit some based on the Council’s work, particularly the new directives. 

Graham added that the Recipient has reported that all RWPA programs are offering in-person services for those who want it.

Yves asked everyone to keep Nina Rothschild in their thoughts.

The CC meeting was adjourned.