Consumers Committee Minutes, May 18, 2021



Tuesday, May 18, 2021, 1 – 3:00PM

By Zoom Video Conference


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

DOHMH: David Klotz,Melanie Lawrence,José Colón-Berdecía, Cristina Rodriguez-Hart, Guadalupe Dominguez Plummer, Scott Spiegler, Jennifer Carmona  

Other Attendees: Gregg Bruckno, Stephen Karpiak, Mayra Leto

Agenda Item #1: Welcome/Introductions

Randall and David M. opened the meeting, followed by introductions and a moment of silence.  The draft minutes of the April 22, 2021 meeting were approved with no changes. 

Agenda Item #2: Public Comment

John announced that there is an upcoming webinar on Zoom fatigue. 

José announced that the deadline for applications for the Council and committees is June 18th and encouraged Committee members to reach out to their networks and peers.  He is available for presentations or to speak one-on-one with consumers who have questions about the Council.

David M. clarified his comments at the April meeting that it is important for people to be able to relate to their mental health provider, particularly for African-Americans who have specific issues that an African-American provider would have a special understanding of.

Yves announced a meeting of the HIV Prevention Trial Network featuring Dr. Fauci and the CDC director, Dr. Rochelle Walensky.

Charmaine suggested that something like a pin or badge be created so that Council members can be identified in public settings as a Council member to facilitate outreach.

Agenda Item #3: Draft Service Directive for Older People with HIV (OPWH)

Cristina explained the Implementation Research Logic Model (IRLM), a new format for the Council’s service directives.  The Logic Model is divided into four sections: 1) Determinants (factors that might prevent or enable improvements/barriers and facilitators); 2) Implementation Strategies (interventions to increase adoptions of evidence-based innovation); 3) Mechanisms (processes or events through which an implementation strategy operates); 4) Outcomes (the effects of the actions).

Graham presented the draft Service Directive for OPWH as written using the IRLM.  The rationale for the intervention is to increase screenings to support early detection and treatment of co-morbidities among PWH over 50 because PWH over 50 represent a majority of the total PWH population (59% of PWH in NYC in 2019) and yet their unique intersectional needs are often underrecognized and unaddressed by HIV service organizations.  PWH over 50 have achieved the highest proportions of sustained viral suppression of any age group and yet care for their comorbid health conditions remains suboptimal; and PWH still have shorter life expectancies than those not living with HIV.  This directive was initiated at the request of and co-designed with the Consumer Committee, PWH with lived experience of the issues to be addressed. 

The first Implementation Strategy is to increase the capacity of Outpatient Medical Care to treat the complex needs of PWH over 50.  The Intervention mirrors aspects of Golden Compass model used in San Francisco and provides health education (in group classes and individual consultation); Geriatric, Psychiatric, and Cardiology consultation; and referral to ongoing specialty care.  Resources would be provided by RWPA to address gaps in current care provided at clinical sites. 

The next Implementation Strategy is referral for healthcare and supportive Services.  This includes: 1) Increase the knowledge of resources available to support PWH over 50 among the RWPA-funded providers; 2) Utilize referral tracking to ensure PWH over 50 are engaged in needed services; 3) Utilize an adaptation of effective referral practices from the Antiretroviral Treatment and Access to Services (ARTAS) model.

The third Implementation Strategy is to provide social support for exercise by setting up a buddy system, making contracts with others to complete specified levels of physical activity, or setting up walking groups or other groups to provide friendship and support.; and to provide peer support using navigation and structure health education to increase engagement in care.  The fourth strategy is to increase training of RWPA providers to ensure they are able to  effectively support PWH over 50 through increased ability to identify comorbidities, link PWH over 50 to needed resources, and increase ability to effectively serve PWH over 50 given the intersectional identities experienced by this population.  The mechanisms of the Implementation Strategies were described.  For example, for the first strategy, obtain formal commitments to coordinate care that leverage existing resources (current RWPA programs, Ryan White Part B, C, and D programs, Medicaid funded services and other resources at program sites); and increase provider screening of comorbidities associated with PWH over 50.

Outcomes to be achieved include: increasing the number of  HIV clinics providing screening and assessment for comorbid conditions; increasing the number of clinics with increased capacity to provide services for common comorbidities for PWH over 50 through provider survey to determine increase in knowledge and skills; and an increase in appointment attendance for PWH over 50 with comorbidities over 12 months (attendance at one appointment resulting from referral).  Clinical outcomes include: increase in PWH over 50 aware of their status, retained in care, and virally suppressed; increase in PWH over 50 quality of life and satisfaction with HIV services; increase in treatment of comorbidities for PWH over 50; improved health outcomes for PWH over 50; and reduction in premature death among those served.

A summary of the discussion follows:

  • Data to follow life expectancy over time is not available, only annual snapshots in national studies.
  • The directive should consider addressing aging issues at an earlier stage in life.  Reaching PWH in their 40s with prevention and wellness services can result in improved health outcomes as people reach their 50s and beyond.
  • It is arguable that OPWH connected to care may have better health outcomes than non-PWH who may only receive services in urgent care settings.  (Data shows that even PWH in care have higher co-morbidities than non-PWH.)
  • Some infectious disease doctors may not look beyond HIV issues to larger concerns, particularly those related to aging.
  • The directive should address improving self-advocacy so that OPWH can talk to their ID doctors about broader health concerns.
  • Insurance companies may put up barriers to optimal care if they do not cover all needed medications or treatments.  Also, the ADAP formulary may not cover drugs related to non-HIV related aging issues. 

A smaller group will meet before the June 4th Forum to review the comments from today’s meeting and make changes for review at the Forum.  Volunteers were: Paul, Randall, Leo, Rob, Charmaine, David M., Graham, Yves, Maria, plus Guadalupe, Scott and Council staff.

Agenda Item #4: Forum on OPWH

Graham reviewed the agenda for the June 4th Forum.  There was a recommendation that a moderator keep the Panel of Subject Matter Experts to their allotted time.  Also, there should be an acknowledgement of people born with HIV as long-term survivors.  There was discussion of the timing of the survey, which will be a short poll to elicit immediate feedback.  It was also recommended that there be an evaluation of the event at the end. 

Agenda Item #5: New Business

Melanie announced that a new batch of gift cards was procured and will be distributed soon.  Per HRSA rules, some form of documentation will be needed to demonstrate that there were costs incurred to participate in the Council (e.g., a phone or WiFi bill). 

Rob suggested that the Committee revisit the requirements for agency community advisory boards (CABs).  HRSA requires that providers obtain input on programs from clients but does not specify how.  Local requirements have resulted in less effective CABs.

There being no further business, the meeting was adjourned.