Consumer Committee Minutes June 17, 2024


Minutes of the


Chairs: Charmaine Graham, Marcelo Maia

Consumer-At-Large: Raffi Babakhanian

Monday, June 17, 2024, 2:05PM – 4:00PM


Committee Members Present: Charmaine Graham (Co-chair), Marcelo Maia Soares (Co-chair), Raffi Babakhanian (Consumer-at-Large), Asia Betancourt, Billy Fields, Lawrence Francis, Yves Gebhardt, John Goldenbridge, David Klotz, John Schoepp, Rob WalkerStaff and Guests Present: Jeff Klein, Kimbirly Mack, Daniel Bickram (Planning Council); Roya Barakzai (Intern)

Agenda Item #1: Welcome/Introductions/Minutes

Charmaine and Marcelo opened the meeting, followed by introductions and a moment of silence.  The minutes of the May 21, 2024 meeting were approved with no changes. Charmaine read #7 from the committee’s “Rules for Respectful Engagement” as a reminder.  In recognition of Pride Month, Raffi gave comments to spotlight Spencer Cox, an activist and advocate for fair clinical trials and specialty health care for gay men. Marcelo and David commented further about personal experiences with Spencer. Jeff and Charmaine explained that just as Raffi gave a spotlight to highlight Pride Month, we will try to include a short presentation on the agenda each month aligning with that month’s particular awareness. Raffi mentioned that July is Disability Pride Month and National Minority Mental Health Awareness Month, among others. Jeff invited the committee to submit to him ideas to spotlight one such awareness for July, which will be included on the next meeting’s agenda. Rob suggested spotlighting Xavier Moons for Disability Pride Awareness. Billy suggested reaching out to Audrie King, who was involved bringing awareness to the committee regarding wheelchair regulations.

Agenda Item #2: Provider Workshop Breakout SessionJeff began by explaining that the breakout session will be part of the one-day mandatory meeting for all RWPA providers on July 16. Participants will have an option of attending this or another session.Rob mentioned that he would like to be involved in facilitating; there was no objection. The session agenda and timeframe for each session was explained: Introduction and Objectives – 10 min; Recipient Survey Results: CABs in the NY EMA – 15 min; Group Discussion Activity: Experience Sharing and Problem Solving – 45 min (25 min for small groups, 20 min for sharing out); Lessons Learned and Best Practices for CAB Implementation – 15 min; Concluding Discussion – 5 min.Jeff proceeded to walk through the content of the recipient survey results section of the slide deck. Billy mentioned that the survey was one-sided in that it did not solicit input directly from consumers, and that providers may want to present themselves in the best light. Jeff acknowledged that any survey can be affected by bias and explained that both provider-level and consumer-level data are valuable and provide different insights. Providers can offer a broader programmatic view, while consumers offer insights around their own experiences and health outcomes. Furthermore, if the recipient
solicits input from consumers directly that data collection will be held to human subjects’ research standards.While displaying findings from the survey regarding CAB sizes and meeting frequency, Marcelo stated the option of less than 5 attendees in a CAB does not constitute a CAB. Jeff responded that discussion during the workshop will bring forward what size providers envision for CABs. John S. added that it depends on the size of the clinic. Rob added that CABs may have limited engagement due to the time/place meetings are held. Charmaine added that limited engagement may be intentional so that, for example, only trans- people are involved in CABs to focus quality improvement for people of trans experience. Jeff acknowledged the points raised and emphasized that the workshop will allow further understanding.Jeff displayed survey results for respondents whose programs do not use CABs. Rob commented that hospitals have many overlapping services so may not dedicate a CAB for RWPA services. John S. mentioned that some CABs lost space during the early pandemic and never got it back or lost members. Jeff acknowledged that the survey reported 80% of the respondents who had but discontinued a CAB did so for COVID related reasons. Rob and Charmaine
added that it may be more appealing for agencies dealing with multiple services to have an umbrella CAB for all services than an HIV specific CAB. Jeff acknowledged the points raised and emphasized that the workshop will allow further understanding about most appropriate and appealing models.Jeff then transitioned to the portion of the proposed workshop plan to include participant group discussion. Groups will be mixed with members whose programs have CABs and members whose programs do not. Each group will designate a note-taker, timekeeper, and spokesperson. In the first 10 minutes, each group will segregate so that members who use CABs will discuss with each other up to 3 success stories and 3 perceived barriers to maintaining
their CABs; those without CABs will discuss up to 3 perceived barriers. to taking up or maintaining a cab. After that first 10 minutes, the timekeeper for
the group will prompt the small group to come together to share what they discussed and settle on one common challenge. Then, groups will brainstorm
solutions and settle on one solution to that challenge. The note-taker will write down the group’s challenge and solution and the spokesperson will be ready to share out at the end of that 15 minutes. After this 25-minute group discussion period ends, we will hear from all the groups, one at a time by spending 20 minutes going from group to group, hearing like what each group’s common challenge and solution to that challenge were. With time remaining, groups can ask each other questions and allow some cross-pollination.John S. raised a concern that the 45-minute discussion may not allow sufficient time for participants to fully engage and enough voices to be heard. Jeff acknowledged the concern and the need to create an equitable and inclusive environment and reiterated that the 20 minute “sharing out” should be sufficient to allow groups to share the points they wrote down and ask each other questions. Raffi offered the option of facilitators having a “dress rehearsal” before the workshop.Jeff closed by walking through the end portion of the workshop slide deck regarding lessons learned, best practices, and the consumers committee vision for CABs, including that if possible, reinstate CAB as a requirement for RWPA subrecipients. Rob John S. Raffi, and Marcelo explained that CABs were a requirement in the past and dissolved due to COVID and lack of effort on the part of agencies who complained to the recipient about the high burden of using CABs. David K. suggested a final statement on the slide restating the Consumers Committees vision that cabs are the best way to get client input for quality improvement and that any challenges can be overcome. Rob offered the suggestion of having a dedicated technical assistance team to assist agencies in uptake and implementation. Jeff acknowledged the need for giving providers a place to start and meeting them where they are. Raffi suggested specifics for tracking and implementation, including a recipient CAB registry, notification when CAB is discontinued, and include in their annual report what topics of discussion that CAB took up, any proposals, suggestions, or demands made, and what the outcomes were. Jeff acknowledged those suggestions and offered including them in this presentation or future discussion with recipient.Charmaine reminded the committee of the Rules of Engagement before transitioning to the final agenda item.

Agenda Item 3: Proposed Budget Cuts to HIV Services

Marcelo commented on the $5.3 million proposed cuts to HIV services in proposed City budget and a desire to know specifically which programs would be affected. David K. explained that these budget cuts affect city tax levy funded programs (part of “Programs to Eliminate the Gap” or PEG) and will likely affect mostly prevention programs but not grant funded programs. Ryan White is entirely federally grant-funded and will not be affected by the PEG, which remains uncertain anyway as it has to go through city council approval. John S. and Marcelo raised whether RWPA funds could be redistributed to programs facing the cuts. David K. explained that RWPA funds are planned and allocated so far in advance and dedicated to broad service categories, not specific
organizations. Once planning for grant year is completed and funds are dedicated to certain programs, it cannot be taken from them to fill funding gaps in other areas.

Agenda Item 4: New Business/Public CommentFurther information regarding the budget cuts will be sought before the next consumers meeting for discussion.The next consumers committee meeting will be held Monday, July 22.

There being no further business, the meeting was adjourned.