Consumers Committee Minutes, June 15, 2021



Tuesday, June 15, 2021, 1 – 3:00PM

By Zoom Video Conference


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

DOHMH: David Klotz,Melanie Lawrence,José Colón-Berdecía, Kimbirly Mack, Scott Spiegler, Jennifer Carmona  

Other Attendees: Mayra Leto

Agenda Item #1: Welcome/Introductions

Randall opened the meeting, followed by introductions and a moment of silence.  The draft minutes of the May 18, 2021 meeting were approved with a revision to spell out ARTAS (Antiretroviral Treatment and Access to Services), and the addition of Randall to the list of small group volunteers. 

Agenda Item #2: Public Comment

Lawrence reported that the State is seeking to get consumer input through surveys, rather than direct participation, which is a diminishment of the consumer voice.

Michael announced that the NYS AIDS Institute is holding a statewide Peer Check-in Meeting on June 21st.

Graham announced that there will be a picnic for the Council and consumers on Fri., August 6th, 2-6pm at Riverside Park.  It will be a great opportunity to celebrate the work done over the year and to see everyone in person.

José reminded everyone that the deadline for applications for the Council and committees is June 18th.

John thanked the Council staff for the summary of the Forum and inquired about follow-up to questions submitted online.  Melanie stated that all questions were answered except those that require additional research.  

Atif thanked Melanie and the staff for the gift cards and for supporting consumer participation in the Council.

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

Graham presented the draft revisions to the Directive based on the feedback gathered at the June 4th forum.  The following is a summary of the revisions:

  • In the Intervention section on Outpatient Medical Care, referral to ongoing specialty care and services “shall be based on current clinical guidance” to allow for flexibility as guidelines change.  There was a suggestion that language is inclusive of the prenatally infected who are long term survivors but are not over 50. Graham will craft language to use throughout the directive to reflect that, while not excluding those newly diagnosed over 50.
  • The directive should allow for a Nurse Case Manager to coordinate the medical and behavioral health needs of those with multiple comorbidities, with referrals to case management for benefits and entitlement programs and programs that may be of assistance to partners and families of PWH.
  • There should be support for advance directives (living wills, powers of attorney, etc.).
  • There was a discussion on the types of social activities not allowed by Ryan White, but which can be paid by Project PROSPER (e.g., movies or other outings).
  • Allow for exercise groups (virtual or face to face, including yoga, neighborhood-based walking groups, or other exercise activities that may be popular with aging PWH) to increase social support and physical activity. Support faith-based organizations in the provision of social support services, including pastoral counseling as outlined in the Supportive Counseling directive.
  • services that enhance social support networks should use tool such as peer networks or use of technology for virtual communication/connection (including training for the use of such technology). Provide education and support to family members (as defined by the client) so that they too can be sensitive to the needs of aging PWH.
  • Maximize the employment of peers in supportive counseling, psychosocial support, food and nutrition programs providing congregate meals, mental health, and harm reduction programs to support Aging PWH.
  • Health education curricula should include such issues as physical exercise (including low cost/accessible physical exercise options), common comorbidities, wellness/prevention , sexual health, and any other common issues affecting PWH over 50 including those the HHS guidance for Aging PWH.  Curricula should reflect updated HHS guidance.
  • Ensure Food and Nutrition Providers maximize the potential of congregate meals as a means of reducing social isolation. Update provision of food so that it reflects the nutritional and dietary needs of Aging PWH.
  • The directive spell out abbreviations and define less well-known terms, perhaps in a glossary. 

Graham will make the revisions and circulate the updated draft for final review and approval at an additional Consumers Committee meeting on Tuesday, June 29th, 1pm.

There being no further business, the meeting was adjourned.