Consumers Committee Minutes, January 19, 2021



Tuesday, January 19, 2021, 1:05 – 3:00PM

By Zoom Video Conference


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

DOHMH: Melanie Lawrence,José Colón-Berdecía, Kimbirly Mack, Cristina Rodriguez-Hart

Guest: Mayra Leta (Health & Hospitals)

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

Lisa opened the meeting, followed by introductions and a moment of silence.  The minutes of the December 15, 2020 meeting were approved with no changes (note: after the meeting David emailed two minor changes).

John, on behalf of the Committee, presented a certificate of appreciation to Melanie for her work in support of the committee.  Melanie thanked the Committee for their recognition. 

Agenda Item #2: Outreach Report

José reported on his outreach activities to bring new consumer voices to the table.  Priority populations include: youth, Tri-County consumers, TGNB, women (esp. women of color), PWH with disabilities.  A list of outreach resources was distributed (e.g., networks, providers, advocacy organizations, etc.).  He stressed the need to bring more women to the table, and the importance of Committee members talking about the work of the Council to peers.  He’ll soon be presenting to the AIDS Institute Peer Certification training, which includes people from NYC and Tri-County.  He asked members to refer peers to him and recommend organizations to reach out to.  Committee members urged him to reach out to NATAP, and to highlight long-term survivors (including those who were perinatally infected.  The Committee’s flyer can also be sent electronically to providers.  Lisa noted that there have been challenges recruiting Tri-County consumers and asked José to speak to Living Together members.

Agenda Item #3: Planning Council Bylaws: Consumer Committee Duties

Melanie reviewed the draft of the section of the Council bylaws that describe the duties of the Consumers Committee, based on the discussions at the November and December meetings.  A motion was made, seconded and approved 14Y-0N to refer the amendment as written to the Rules & Membership Committee.

Agenda Item #4: Development of a Service Directive

Graham presented on how the Council develops a service directive.  A directive determines how a service is delivered and is usually originates in the IOC based on an identified need.  To form the directive, Council and Recipient staff and invited subject matter experts present data and information needed, including policy context, utilization data, information on other payers, applicable research, and recommendations.  Planners develop the service model, service elements, staffing recommendations, reimbursement (and rate setting, when needed), and evaluation process for the RFP.

He showed an example of a directive, which includes the HRSA definition of the service, the service’s goals and objectives, and how the service’s goals are aligned with the EMA’s existing Integrated HIV Prevention and Care Plan.  The core of the directive is the Program Directive and Service Model and Client and Agency Eligibility.  The HRSA allowable core medical and support services categories were listed. 

Program Directive and Service Model describes the purpose of the service, the manner in which services shall be delivered (e.g., cultural proficiency, anti-stigma and anti-racist service delivery), the provision of technical assistance and training, and the types of services offered (e.g., group, individual, education, counseling, etc.).  Client Eligibility describes basic Ryan White eligibility (e.g., income, HIV status), as well as Specific populations of need (e.g., incarcerated, PWH over 50, Black and Latino MSM, Black and Latina Women, Youth,  persons of trans Experience).

Agency eligibility describes who should provide the service (e.g., Community Based Organizations, Governmental programs, Hospitals, Community Health Clinics).  It also describes the targeted geography (neighborhoods, boroughs), depends on what is most needed to deliver services to PWH.

For a Services to Older PWH directive, the Consumer Committee can develop a directive and submit it directly to the Executive Committee, or present it to IOC (and possibly NAC) for input.  Also, the Committee can recommend changes to the Master Directive, which applies to all service categories.  Any new service must fit into of HRSA-defined core medical service or support service. 

A summary of the discussion follows:

  • The process for developing a directive needs to be more efficient, as it can take more than a year to develop a directive. 
  • The Needs Assessment Committee has a role to play, but for the population of older PWH, there is a pressing need to get services out. 
  • The Council can streamline the directive process, for example NAC and the Consumers Committee can collaborate on the community forum. 
  • The directive’s format can be updated to make it more reader-friendly.  The work of other EMAs can be reviewed for ideas.
  • There is a need to keep the Committee updated on data for both planning and assessing how the service is meeting the Council’s goals.
  • Procurement rules don’t allow for major changes to services after contracts are in place without a lengthy RFP process.  More flexibility would be helpful to allow changes in services in response to new needs or data.
  • Not having a printer at home can make looking at a large document difficult.  There are challenges for staff, who would have to go into the office to print and mail documents.  One option is to look into a VistaPrint account.

The discussion of the Community Forum was tabled to next month, since the forum can be done in May to fit better into the Council’s schedule.

Agenda Item #5: Follow-up: Aging and HIV

The Committee discussed their responses to Jules Levin’s presentation at the December meeting.  Points made include:

  • There is a need to expand access to geriatric medicine so that older PWH have specialized care.
  • The demand for specialty geriatric care exceeds the supply.
  • Consumers need education about how to access specialized care, including what to ask doctors, how to demand appropriate care from primary care providers, and how to ensure maximal insurance coverage.
  • COVID has changed so much about care delivery, which has to be taken into account.
  • The Committee should invite a doctor who has presented to the AIDS Institute about geriatric care. 
  • Geriatric and other specialists need education on HIV treatment and care.  Often it is up to the consumers to do their own care coordination.
  • The Committee may need to do a survey of older PWH to get direct input on the barriers they have faced getting appropriate care. 
  • There have already been similar efforts, including BHIV focus groups, CHAIN data, and ACRIA studies.  Also, the forum will gather direct testimony to enhance the existing data.
  • Jules’ presentation was a bit overwhelming and reiterated a lot of issues about gaps in care.  The presentation captured a lot of information and identified the need for additional and more diverse voices.

Next steps can be compiling the available data, reviewing it, deciding on subject matter experts to invite for additional presentations and developing a draft timeline for the work.  Each member should be on the same page on the ideas and trends regarding older PWH and planning for the forum.  Members can break up into small groups to parse the data.

Agenda Item #6: Other Business/Public Comment

Melanie reported that Darryl Wong will be invited to join the March Consumers Committee meeting so that members can honor his work supporting consumer involvement in the Council.  Members talked about how helpful and supportive Darryl was and how integral he was to bringing consumers’ voices to the table. 

John reported that MetroPlus will not be implementing the co-pay accumulator.

Melanie announced that Cristina will be presenting on community participatory research to IOC tomorrow and encouraged consumers, especially people who participated in her research, to attend.

David reported that his Facebook writing workshop is publishing an anthology of their writing called “2020: The Year that Changed America”, which will include his first published work.

Lisa announced that Cicatelli Associates is holding another round of Leadership Trainings Institute workshops.  Members were encouraged to referred peers.

There being no further business, the meeting was adjourned.