Consumers Committee Minutes, February 15, 2022



Tuesday, February 15, 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, Yves Gebhardt, Michael Rifkin, John Schoepp, Steven Wilcox, Atif Abdul-Haqq, Paul Carr, Asia Betancourt

DOHMH: Cristina Rodriguez-Hart,Melanie Lawrence, Jose Colon-Berdecia, Kimberly Mack, David Klotz, Graham Harriman (Governmental Co-chair), Noelisa Montero, Michael Lutete

Other Individuals: Mia Edwards, Jeffrey Birnbaum, Stephen Sukumaran, Claude Mellins, Robert Remien, Karen Mckinnon

Agenda Item #1: Welcome/Introductions

Leo and Charmaine did the introductions. Atif led the moment of silence. The rules of respectful engagement were read out loud during introductions. No corrections to the minutes and they were approved.

Agenda Item #2: Public Comment

No public comment.

Agenda Item #3: Presentation on Ending the Epidemic for Young Adults Living with HIV

Cristina gave a brief introduction to the speakers and that they kick off our focus on the needs of young PWH for the committee. For copies of the presentations, see outlook calendar invite.

Claude and Stephen presented on young people with HIV in NY Ryan White Part A, as part of a study they did with Matt Feldman. Only 2/3 of young PWH are virally suppressed compared to ¾ of older PWH. The study had 3 aims: to develop and expand partnerships, identify barriers for viral suppression, and work with partners to explore implications of findings. Used mixed methods. 7 youth members in youth CAB and 6 providers in provider CAB. Youth CAB said they want to be treated like a person and not a number, challenges accessing mental health services, long wait for appointments, fears in transitioning from pediatric clinics to adult clinics, lack of employment opportunities. Provider CAB said importance of addressing mental health, substance use, neurocognitive issues to access and stay in treatment, some youth need help with life skills (often for young PWH who acquired HIV perinatally), challenges with scheduling appointments.

Ryan White enrollment and programmatic data were assessed as part of the study. Eligibility was young people 18-29, diagnosed with HIV, had received Ryan White services. 58% unstably housed/homelessness, very high rate of mental health symptoms and substance use. Many of those living with HIV their whole lives want to be off meds and they’re more likely to be unsuppressed. 13% food insufficient and few became food sufficient. 11% recent hard drug use. 44% had poor mental health symptoms and very few accessed RW mental health services, although they may get it through Medicaid. 48% had suboptimal HIV outcomes. Almost half received care coordination services.

Key informant interviews findings from 10 young PWH and 10 providers working with young PWH. All young people interviewed were virally suppressed and engaged in care. Some key themes: one stop shop model of care desired; transportation is a major barrier (car services and metrocards preferred); need flexible scheduling and non-rigid attendance policy; frequent appointment reminders helpful; long wait times for appointments mean they need more reminders; preferred in-person visits while others like telehealth; want services in calm and discrete and private service areas with entertainment; providers that are caring, interested, and responsive to their needs and not stigmatizing; did not like visits where they were rushed or felt unsafe; recommended mandatory ethics training for staff; want individualized harm reduction services over group services; mothers need more support for breast feeding, medication adherence, and disclosing status to children; want healthier food options and child-friendly waiting spaces. Leo said that a lot of youth at his clinic didn’t relate to therapist, didn’t feel it was a conversation but overly clinical and checklist-oriented, didn’t feel empathy of providers. David M. said he sees similarities with the needs for young PWH and older PWH, particularly for mental health. PWH need a provider that can provide mental health support. He had difficulty finding a mental health providers due to insurance, lack of available appointments, etc. so he had to take anyone. Next open appointment was 4 months from now. He’s concerned that we don’t have mental health treatment capacity. ACEs need to be assessed for everyone. He asked do any facilities provide weekend or after hours appointments? Claude said COVID-19 has spotlighted mental health surfaces gap. They’re working to integrate mental health into primary care. ACEs checklists are happening in pediatric clinics but not happening in adult clinics. John said no one mentioned support groups between youth and family. This didn’t come up in the study, but some youth wanted to have their phone calls outside the house because they wanted to talk privately away from their family. Claude said that yes, families are very important and peers are also very important. Karen pointed out that she knows of a family-oriented intervention in RI but these evidence-informed programs often don’t make it into practice. Charmaine asked if young PWH are aware of Ryan White services. Jeff said he has avoided applying for Ryan White services because it’s usually fee-for-service, reimbursement rules are too punitive and rigid. If you’re supposed to have 100 clients and you only get 80 in, you only get 80% of the money. And you have to give services 1-10 and can’t just give some of them. He gets funded by AIDS Institute. Places that can manage Ryan White funding are usually large and youth are just a part of the client population. He does like that ages 18-29 are included in Ryan White services, because the AIDS Institute limits this to ages 13-24. People have difficulty transitioning to independent adulthood. Age cap does need to be through 20s. Leo said that rules like 3 missed appointments and you’re removed as a client doesn’t work for young PWH. One barrier is person power. Many agencies are not staffed to closely monitor a few people closely.

Agenda Item #4: Presentation on Adolescents and Youth

Jeff Birnbaum then presented based on his experience running the HEAT Program for young PWH at SUNY Downstate. The care model really matters: youth-centered, interdisciplinary, and with primary care integrated into HIV care. Young PWH often don’t disclose their HIV status or sexuality to family. Need to be able to navigate confidentiality and privacy issues for youth. Teen services are at forefront, and HIV funnels into other issues. Too many adult clinics are adult-centered, medical model, young persons’ transitional needs not addressed often. In pediatric clinics they smother them with case management. It’s easy for youth to slip through cracks at adult clinics.

Jeff went through elements of a successful youth program. Young people feel a lot of stigma and will avoid places geared towards HIV. Need a lot of grant funding because youth don’t bring in much money through insurance. Need advertising that is colorful and attractive. Essential to have community linkages to outside groups where you can reach youth. Go out to where youth are, have mobile services, and staff can engage them and bring them in for more intensive services in the clinic. Having a multi-disciplinary team is important. One of the more exciting things they’ve done recently was to have youth peers. Youth peers make them feel comfortable and like there is someone to talk to. They spend time with them in the waiting room. They have banned white coats and everyone is addressed by their first name and not titles like “Dr.” Staff need to know rules around confidentiality in NY. Have to figure out ways to work with lack of confidentiality for mental health services and substance use treatment and stretch it as far as you can because these issues are common.

Young PWH who are gay/MSM have special needs: reach out to House Ball community and other venues, address mental health issues and homelessness, stigma is overwhelming so need a status neutral venue, and need clinical expertise in STIs and anal health. It’s best not to have to refer outside of the clinic. Need to know hormones as well as ARVs for trans clients. Young PWH who acquired HIV have more complicated medication regimens, often have lost both of their parents to HIV, and their other caregiving relatives are getting older. Make it as safe as possible to take medications and make mistakes. Assess treatment adherence at every visit and understand adherence issues early. Behaviorally and perinatally infected young PWH have some shared and some distinct issues. They meet monthly with adult care providers and keep cases open for 6 months after transition. Youth don’t always want a support group because they don’t want to out themselves. Can deal with family issues in other ways.

David M. said it’s really hard to get youth to the table so they can hear from them directly. He’s also very concerned about the safety of youth. Jeff said Dan Tietz was creative to getting youth together. You need to have a separate group for youth and it’s labor intensive to do it. Take them on a retreat. Make people feel good about showing up. With shelters what kills him are the age cutoffs. SCO has a wonderful group home situation with staff. When they age out of housing services, they are leaving safety and need help. Get to know which sites are youth friendly and work with youth on life skills to survive. Karen said that youth are really great at technology and self-presentation. Could we use technology to get their stories in front of young people? Jeff said they’re in the process of retrofitting an AIDS Institute app called Why get it. It can help to get youth to come one time on a topic they want and not having them commit to an ongoing meeting schedule. Expect inconsistent attendance. Charmaine said what’s really important is to listen to them and make them feel heard.

Agenda Item #6: Discussion of May Young PWH Forum

Cristina pointed out that an invitation letter was attached to the calendar invite and she emailed out a flyer before the meeting. Jeff said that young people at his clinic designed their lovely flyers. John is concerned with May forum date because youth might be busy getting ready for their exams. Melanie suggested that this forum could be used as extra credit for school so could be a good time to have it. Jeff offered that one of his youth could work on the flyer to make it more attractive and to promote it to get word out to youth. John suggested adding contact info. Jeff thinks third week of June might also be better. David M. said maybe we could have the forum as a build up to Pride in June.

Public Comment

David M. asked if we can get the Power of QI recordings. Wants to talk about the buttons and wants to know the status of Ron Joyner. Cristina asked if anyone knows anything about Ron, let us know because we haven’t been able to reach him. Leo sent his condolences to Asia who recently lost her father.

The CC meeting was adjourned.