Consumers Committee Minutes, January 18, 2022



Tuesday, January 18, 2022, 2:00PM – 4:00PM

By Zoom Video Conference


Committee Members Present: Charmaine Graham (Co-chair), Leo Ruiz (Co-chair), David Martin (Consumer-at-Large), Billy Fields, Lawrence Francis, Yves Gebhardt, Michael Rifkin, John Schoepp, Asia Betancourt, Rob Walker, Atif Abdul-Haqq, Steven Wilcox

DOHMH: Cristina Rodriguez-Hart,Melanie Lawrence, Jose Colon-Berdecia

Agenda Item #1: Welcome/Introductions

Leo and Charmaine did the introductions. Yves and Jose said they were in fact at the December CC meeting and then the committee approved the 12/21/21 minutes. The rules of respectful engagement were read out loud.

Agenda Item #2: Public Comment

David said that N95 masks were recommended especially for healthcare workers, but he feels that this implied that other people are not important. Now N95 masks are recommended to everyone so he encourages consumers that if you have forward thinking thoughts about protection from COVID don’t be shy to share those. COVID can affect the vascular system, penis length, and for some men lead to erectile dysfunction, so this is something that people should be aware of. Perhaps this information would encourage people to get vaccinated who have resisted thus far.

Agenda Item #3: 2022 CC Workplan Presentation

Melanie pointed out that the CC can decide whether to take off August and September 2022, as other Council committees do. Charmaine and Leo presented on the CC January-July workplan, the same document as was presented during the December CC meeting. The CC buddy system began in December and a directory was created and sent out to improve communication between members. Member buttons will be developed by a workgroup. There will be an end-of-year picnic like last year. The fall of 2021 was spent getting the HIV & Aging service directive approved and developing a Power of QI workshop. Now the CC will focus on the needs of youth and young adults ages 13-29. Billy said that usually in August they are sorting out the abstract submission for the Power of QI Conference through a subcommittee since several months of planning are needed. Regarding consumer engagement there was confusion as to who Michael Hager and Favio Freyre are, so Graham will be asked to provide an update. There is a secret shopper presentation planned, but it’s unclear when this will occur. John wasn’t sure how a secret shopper would work because clinic’s take your personal information down. Leo said that where he was at it had worked by just saying that you don’t feel well and then while you’re there, you note down various aspects of the place like how welcoming it is, posters, etc. Asia explained her experience as a secret shopper for the past 6 years and felt that it’s been a positive experience.

Agenda Item #4: Youth and Young Adult HIV Surveillance Data Presentation

Cristina presented health department HIV surveillance data on youth and young adults 13-29. The first components of the presentation, which was sent to the CC, consisted of an orientation to HIV surveillance data, and the social-ecological model and upstream vs downstream factors. HIV surveillance data are very complete, because these data have to be reported by law to the health department, but they include a limited set of variables. Data on new HIV diagnoses for youth and young adults were shown by age group, gender, race/ethnicity, transmission risk, among MSM and transgender persons, HIV clinical outcomes of linkage to care and viral suppression, cause of death, and clinical outcomes by borough. Key takeaways were presented at the end of the slide set. A discussion followed, including that most new diagnoses are among Black and Latina young women as compared to white women; neighborhood-level HIV diagnoses and death data are available on the health department’s website; many PWH in Staten Island seek care in Manhattan, but their HIV surveillance data would still be reflected in the Staten Island slides because we use patient’s zip code of residence; HIV surveillance data don’t explain why timely linkage to care is higher for young people but viral suppression is lower but this may be due to timely linkage to care being about providers who know to quickly link young MSM to care, while viral suppression is more about what is happening outside of clinics in PWH’s personal lives that are harder for providers to resolve; although HIV surveillance doesn’t provide info on upstream factors we can seek that out through surveys conducted by the health department, by talking to providers and youth consumers, and looking at structural-level factors through other data sources; HIV surveillance data have a 1-year lag usually because it takes a tremendous amount of effort to collect, clean, and analyze them, but when you consider the long-term trends they don’t tend to change much in a single year for HIV outcomes; home tests results are not automatically reported to the health department, but if the person seeks confirmatory testing that will in fact be reported, so it is likely that the number of new diagnoses caught by home testing alone is small. The health department’s HIV Prevention Program runs the home testing initiative and would have more info on that.

Agenda Item #5: CC Business

Member Buttons

David said we’d like to develop the member buttons through a workgroup so that the CC meetings can be spent on other business. If any CC members would like to be part of the member button workgroup, email the CC consumer-at-large/co-chairs: David, Charmaine, or Leo to participate. Lawrence said that he would join the button workgroup.

CC Buddy System

Jose asked how the buddy system is going. David said he has been in touch with his buddy and they will make a time to connect. Jose reminded everyone that buddies decide the shape of the relationship, e.g., how frequently they speak. In the buddy system document, people that are in a box together are each other’s buddies. Leo and Charmaine as chairs can be anyone’s buddy, so feel free to reach out to them if you need to. John reminded everyone that the CC directory is also a resource so you can find out how to reach out to any member. Please reach out to your buddy before the end of January to talk.

Agenda Item #6: Public Comment

Leo suggested that in the next meeting having 2 CC members to speak to everyone about what they do in their communities. This type of info can also be included in the directory. Atif reminded everyone that you can get your covid tests now and the link was posted in the chat box Billy said that the Rules and Membership Committee is meeting Jan 24th and if any consumers would like something added to the agenda, email Billy. Billy asked if N95 masks are being made available to the public. Will there be more giveaways? Melanie provided a link to reputable masks that you need to pay for. David suggested that Finn Schubert present on understanding HIV data that he presented at the October NAC meeting. Atif’s father was in surgery and so consumers expressed their support for Atif. Lawrence expressed concern with how uncomfortable the N95 masks are and thinks Biden should create a government mask that is more comfortable to wear for longer periods of time. Melanie followed with information that N95 masks are 5-10% more effective than surgical masks if they have been fitted to the wearer (most Americans do not get fit tested for N95s).

The CC meeting was adjourned.