Consumers Committee Meeting Minutes February 18, 2020



Tuesday, February 18, 2020 1:00PM – 3:00PM

LGBT Center, 208 West 13th Street, NY, NY


Planning Council Members Present: Randall Bruce (Co-Chair), Lisa Best (Co-Chair), Atif Abdul-Haqq, Paul Carr, Billy Fields, Charmaine Graham, Ron Joyner, David Martin, Michael Rifkin, Leo Ruiz, John Schoepp, Rob Walker (by phone)

Committee Members Absent: Asia Betancourt, Maria Diaz, Jesus MaldonadoNYCDOHMH:  Melanie Lawrence, José Colón-Berdecía, Graham Harriman, Cristina Rodriguez-Hart, Kimbirly Mack


Randall Bruce, Consumers Committee Co-Chair, with the assistance of Paul Carr, Consumer-at-Large, opened the meeting, followed by introductions and a moment of silence led by John Schoepp. Rob Walker and Billy Fields were called from the meeting.Melanie Lawrence introduced the agenda, which is focused on tightening the themes to be addressed during the Aging Forum, and took the committee through the agenda.

Agenda Item #2: Public Comment

The Ryan Center will be conducting a town hall – Leo Ruiz will send the information when a flyer is available. It will also be posted to the Council’s website.

Mr. Carr is working on a website that will highlight resources and issues that impact consumers.

Agenda Item #3: Outreach Report

Jose Colon-Berdecia, Outreach Coordinator for the Council discussed the multiple presentations he conducted throughout the metro area. He gave a special acknowledgement to Mr. Ruiz, for his efforts in bringing people into the fold.

Mr. Berdecia also made a call for special outreach to engage more consumers in the committee with an emphasis on diversity.

Barriers to recruiting youth are high – meeting times, desire for stipends, etc. Mr. Martin emphasized that the committee is a sounding board for the issues consumers are facing. Mr Berdecia-Colon noted that people often tell him that HIV is no longer an issue. Mr. Martin proposed the development of standardized responses to some of the more common questions that Mr. Berdecia-Colon receives when conducting outreach.

Many barriers prevent undocumented persons from participating – and the public charge rule will exacerbate that.

Is it possible to get a standardized script to direct people on who the public rule affects, and how to respond to ICE. Mr. Schoepp noted the incredible fear that undocumented people will experience.

Mr. Martin suggested that we develop standardized responses to common questions about the Council and HIV. Ms. Lawrence will investigate the possibility of stipends for youth attending the Council.

Agenda Item #4: Review of the 2018 Aging Forum Findings

Ms. Lawrence reminded the committee of the forum that the grantee held in 2018. A handful of consumers attended. She then reviewed the findings. Dominant issues include social isolation and its correlation with sedentary lifestyles; lack of competency of HIV providers around aging and geriatric providers around HIV; a lack of integration of care, i.e. behavioral health. There is an opportunity to push for holistically designed services that consider the whole person.

Mr. Ruiz noted that he is constantly encouraging other consumers to walk more and think about alternatives to pills. Personal testimony is very powerful. Mr. Carr noted that people’s sense of community has moved online. SAGE is like the gay AARP.

Mr. Martin noted that seeing yourself as healthy is incredibly important – which is why dental care, and feeling confident in your smile is so important. There are no events for people who are on the “young” side of aging.

Ms. Lawrence continued the review of findings.

It is important to have sufficient time with your provider – a 15 minute appointment is not adequate. Mr. Ruiz finds that older patients want to talk and talk.

Addressing social isolation is critical – how to build a real community from the virtual. Planning Council recommendations often go beyond the scope of what is possible just with Ryan White Part A (RWPA).

HIV testing is often overlooked – many providers are not pushing the issue. Stigma plays a huge role. Ms. Graham noted that when staff are the same background as the patient, patients will frequently decline the test, out of fear of being outed. There’s also stigma around the disbelief that older people are having sex.

Older people tend to have better viral load suppression, but when you bring in mental health diagnoses, you see a significant drop off.

When accessing support services, are you feeling in community.

Is there a need to learn more about DSRIP and its intersection with RWPA?

Peer support is vital to addressing social isolation. Medicaid does not reimburse for peer delivered services except in Harm Reduction.

Asking people what they like to do, i.e. sewing, knitting, has been a bonding activity according to Ms. Graham.

Agenda Item #5: HIV & Aging Forum Planning

June sounds like a good time to have the forum. A debate about how a quorum of the consumers committee is defined followed. Comments about the length of time necessary, the best date, and the amount of necessary planning led to the decision to hold the forum on the June date for the consumers committee.

Before deciding on the length of the event, the committee will determine the objectives and goals for the day.

Mr. Carr suggested we talk with the aging coalition to learn more about agencies and programs that are delivering services to PLWH who are aging.

Mr. Bruce encouraged us to look at the health issues that come up for people who are aging.

Mr. Martin suggested a listening session for issues not being addressed, as well as role playing/scenarios where seniors highlight how they want services delivered. As you get older people start making decisions for you – so it is important to empower people to make their own decisions.

Mr. Rifkin found a 2009 powerpoint from the AIDS Institute on this issue.

Ms. Graham noted that we need to discuss issues around dating. Ms. Diaz noted that for women, the empty nest can lead to isolation and not feeling useful. Mr. Martin asked if this doesn’t also apply to men.

Some of these issues overlap – women and men have overlapping issues, but might need spaces that allow people to feel heard.

Mr. Martin noted that queer folks often don’t feel their children will be there for them – or they never had kids, so who will take care of them.

Mr. Carr noted that not all long term survivors (LTS) are queer – maybe find out what kind of workshops are being provided, and incorporating them. But LTS can also be people born with HIV, so there is a need to differentiate.

Ms. Diaz suggested a survey on the barriers people are facing during the forum. Mr. Carr noted that you don’t see the body dysmorphia to the same extent – but these issues are very present for many older PLWH.

Would be great to look at the impact of HIV on the body.

Ms. Lawrence will look for a selection of spaces. The committee will look into finding speakers and agency partners to help with outreach.

The day can be a mix of trainings, self-care, testimony gathering. We should think about all of it, rather than on limiting ourselves.

Agenda Item #5: New Business/Public Comment

From Mr. Martin: It is tax season – I’m on Columbus Ave but Tax 8 on the AARP website is open to everyone.

Ms. Lawrence noted that small group meetings are welcome and will be supported. Presented the idea of doing an anti-racism training, possibility of egg timers for everyone, having Mr. Carr join the pre-call.

There being no new business, the meeting was adjourned.