Consumers Committee Minutes, December 15, 2020



Tuesday, December 15, 2020, 1:05 – 3:30PM

By Zoom Video Conference


Committee Members Present: Lisa Best (Co-chair), Randall Bruce (Co-chair), Atif Abdul-Haqq, Asia Betancourt, Reginald Brown, Billy Fields, Lawrence Francis, Charmaine Graham, Graham Harriman, David Martin (Consumer-at-Large), Michael Rifkin, Leo Ruiz, John Schoepp. Rob Walker

DOHMH: David Klotz, Melanie Lawrence,KristinaRodriguez, Cristina Rodriguez-Hart, Johanna Acosta; AIDS Institute: Tracy Hatton

Guest: Jules Levin (NATAP); Daniel Laub, MD

Agenda Item #1: Welcome/Introductions/Review of the Meeting Packet

Randall and Lisa opened the meeting, followed by introductions and a moment of silence.  The minutes of the November 17th meeting were approved with no changes.

Agenda Item #2: Planning Council Bylaws: Consumer Committee Duties

David K. reviewed the draft of the section of the Council bylaws that describe the duties of the Consumers Committee, based on the discussion at the November meeting.  David M. mentioned that the sentence from the current bylaws about working with staff to ensure financial support for consumer participation should be included.  There was a consensus to re-circulate the draft for comments by email before signing off at the next meeting for referral to the Rules & Membership Committee.  A motion was made, seconded and approved to table the issue until the next meeting.

Agenda Item #3: Debriefing: Power of Quality Improvement Conference

The Committee discussed the Telehealth Workshop that the Committee conducted at the December 8th Power of Quality Improvement Conference.  Kristina reported that 119 people logged in for at least some part of the workshop.  Committee members congratulated the Quality Management team on a successful conference, in spite of some technical challenges.  Kristina and Tracy were thanked for their support to the Committee members.  A recording of the workshop was made and will be available online.

Tracy noted that this was the first conference where all the presentations were tied to the conference theme (Redesigning Systems to Address Social Justice and COVID-19).  The information from the conference is being synthesized and the issues brought up at the meeting will continue to be addressed.  The best practices compiled during the workshop were conveyed to the QM team and the Grantee.  The discussion of the urgent issues around access to telehealth will continue even after COVID.  Providers and consumers will be engaged in those discussions on an on-going basis. 

There were some concerns raised about the technical difficulties that some participants experienced accessing the conference.  It was noted that this was a real-time lesson in the challenges that many people have with telehealth.  Committee members recommended that future conferences include virtual options, even if they are held in person.  Kristina said that at future virtual conferences attendees will be encouraged to log in early to test out the platform.  Also, the exercise to prioritize recommendations in the moment was difficult and time is needed for more deliberative discussions.  Graham added that the Committee can work on extending the discussion, such as by developing tools like a FAQ sheet for RWPA and other providers.

Agenda Item #4: Aging and HIV

Jules, Executive Director of NATAP (a leader in HIV and hepatitis education) presented on Aging and HIV with supportive statistics and data.  Topics and themes described include:

  • Aging of the HIV population and the increasing percentage of people with HIV (PWH) who are over 50 and over 60, both nationally and in NYC.
  • Limited number of geriatric clinics that specialize in HIV care.
  • “Aging and HIV Syndrome”: factors that affect health and well-being.  Biomedical (co-morbidities, multiple medications/polypharmacy, aging syndromes); Psychiatric (depression, anxiety, cognitive decline, PTSD); Existential (loneliness, fear, abandonment); Unmet Practical Needs (nutritional, insurance, housing, transportation); and Social Stressors (stigma, isolation, poverty).
  • Factors that impact non-AIDS co-morbidities (aging, genetics, obesity, smoking, drug toxicity, chronic HIV infection) which lead to adverse physical manifestations (decreased physical functioning, inflammation, diabetes), leading to organ disease (brain, kidney, liver, heart, frailty).  Survival for PWH on ART can be 9 years less than HIV-negative people.
  • The decline in functioning can be rapid if there is an acute illness or injury.
  • The variety of possible aging problems for PWH that are more severe and appear earlier than for HIV-negative people (muscle wasting, lipodystrophy, bone fractures, psychological issues)
  • Patient concerns and needs (stigma/self-stigma, navigating the health care system, cognitive impairment, financial concerns, food and housing insecurity, isolation).
  • There is persistent, higher levels of cognitive impairment and depression even in virally suppressed PWH, which increases with age.
  • Co-morbidities in PWH generally appear 10 years earlier than for HIV-negative people.  There are greater disparities in health outcomes for African-American, Latinx and women with HIV.
  • While death rates for PWH have decreased, they are still higher than the general population.
  • An updated care infrastructure is needed for aging PWH.  A new care model should include: longer visit times with doctors, geriatric care, investment in telemedicine and home visits, care coordination, education, nurses who specialize in aging, services to address isolation and physical impairment.
  •  New research studies are needed (e.g., how many PWH have osteoporosis or depression, how many need physical therapy, how many are homebound, etc.).

A summary of the ensuing discussion follows:

  • There is conflicting data about the impact of past use of illegal drugs.
  • Mental health issues should be on an equal footing as physical issues.
  • NATAP recently had a seminar on brain health and how chronic inflammation can affect cognitive functioning in PWH.
  • Provider education will be crucial to improving care.
  • Adverse childhood experiences can also be a source of problems when aging.
  • Perinatally infected people may experience aging-like syndromes despite being chronologically young.

The Committee will need to reflect on this presentation and distill the information so that the Committee can focus the discussion.  The committee also needs to look at existing evidence-based models of care.  The process will lead to a set of recommendations to help the RWPA program meet the needs of aging PWH.  This may take the form of a service directive, which is something the Integration of Care Committee usually does.  If the Consumers Committee does develop a directive, it can go directly to IOC for review. 

Graham introduced Daniel Laub, a medical resident who is volunteering to help support this effort through a literature review.

There being no further business, the meeting was adjourned.