Consumers Committee Meeting Minutes May 21, 2019


LGBT Center, 208 West 13th Street, NY, NY
Tuesday, May 21, 2019 12:30PM – 3:30PM

Planning Council Members Present: Billy Fields (Co-Chair),  Lisa Best (Co-Chair), Atif Abdul-

Haaq,  Randall Bruce, Paul Carr, Maria Diaz (Co-Chair, Tri County Steering Committee), Jesus

Maldonado, Malaya Mañacop, John Schoepp 

Committee Members Absent: Asia Betancourt, Charmaine Graham,Justin LiGreci, Monique Mackey, Saul Reyes (Consumer At Large)

NYCDOHMH:  Jose Colon-Berdecia, Darryl Wong, Kimbirly Mack, Christina Rodriguez-Hart  Others: Ron Joyner, David Martin, Leonardo Ruiz, Rob Walker 


Billy Fields and Lisa Best, Consumers Committee Co-Chairs, opened the meeting with member introductions and a reading of the Rules of Respectful Engagement.  Billy led the group in a moment of silence in honor of those who have passed and those who continue to endure in the struggle.  April 16, 2019 minutes were distributed.  Randall Bruce requested that his name be added to the list of attendees.  Having made this correction, the minutes from April 16th were approved.  Meeting materials were presented & reviewed.  

José Colón Berdecía, Community Outreach Coordinator, spoke to members about 2019 Planning

Council applications.  This year, the deadline to apply for Planning Council applications is Friday, June 14, 2019. José encouraged members to reach out to their contacts and ask them to apply in order to continue to have a robust and diverse Planning Council composition. José thanked the members of the Consumers Committee for their active participation in the Planning Council’s activities.  

Agenda Item # 2: NY Links Webinar: Patient Engagement  

The Committee participated in a NY Links webinar on “The Patient Engagement Capacity Model: What Factors Determine a Patient’s Ability to Engage?”  As engagement is key to improved health outcomes, but is hard to measure, the model tries to explain the various ways that people acquire behaviors.  The theory includes the idea that there is a dynamic relationship between the person, their environment, and their behaviors, in which they continually influence each other and are influenced by each other.  This concept is particularly relevant in understanding capacity for patient engagement, because changes in one element (person, environment, or behavior) can result in changes in another.  Identifying elements within these interconnected domains may improve our ability to help patients engage.  

The main elements of the model are: Self-efficacy (an individual’s belief in their own capability to perform a behavior); Resources (factors external to the individual that support participating in care: financial resources such as household income or health insurance; Willingness (quality or state of being prepared to take action); and Capabilities (knowledge and skills that enable people to perform a behavior). Members requested copies of slides in order to comprehend the entire webinar. Darryl will ask for slides and share their with Committee members as soon as they become available.  


Lisa Best and Darryl Wong gave an update from the MMP on Trends in provider-advised HAART deferral; Recruitment resources/Local Consumer Advisory Board (CAB) feedback; and How MMP has made a difference.  The MMP is a CDC sponsored national project.  The Consumers

Committee (Billy and Lisa, representatives) is a member of this project as a local CAB.  The goal of this meeting was to look at a report that examines trends in provider-advised antiretroviral therapy (ART) deferral from 2009 to 2014 or the reasons a person decides not to begin ART. Domestic guidelines recommend Highly Active Anti-Retroviral Therapy (HAART) as soon as a person is determined to have HIV.  According to the report, 17+% of newly diagnosed PLWH delay ART. The key findings of the report are: almost all PLWH take ART and are in medical care and providers are recommending ART to fewer PLWHA. 

The project also discussed recruitment approach to engage consumers in the MMP.   Lisa spoke about the importance of consumer-based involvement and feedback to the project. She expressed her concerns over use of consumer surveys/consumer medical information and privacy/confidentiality.  Lisa expressed concern over use of medical information and repercussions to consumer public benefits.  The project is developing a Leaders of Color boot camp training. Darryl encouraged members to apply for the training and stated his support to members in completing the application.  Christina Rodriguez-Hart wanted to know if CDC has a Certificate of Confidentiality in place.  She also wanted to address the issue of data collection and annual reporting.  A lot of the data that is collected annually is not reported in annual reports. 


  • The Needs Assessment Committee is working on developing recommendations for the disability community.  There will be a town hall on improving access for PLWH with disabilities on June 20th
  • The Integration of Care Committee met with Short Term Housing providers to discuss possible changes to the service model to better meet the needs of those accessing this service. 
  • The Oral Health Sub-Committee of the Needs Assessment Committee has been meeting regularly, continuing to consult with national oral health care experts in order to identify the fiscal and clinical barriers to establishing expanded Oral Health services in NYC. 
  • The Mental Health Sub-Committee of the Needs Assessment Committee is meeting to discuss the needs of the Seriously Mentally Ill living with HIV/AIDS. 
  • The Priority Setting/Resource Allocation Committee (PSRA) reviewed the service category rankings for the FY 2020 application spending plan.  Minor changes to the rankings were made (e.g., Food & Nutrition (FNS) was ranked higher than last year and is now tied with ADAP as the highest ranked category).  PSRA began the process of determining allocation requests for the FY 2020 application.  A targeted increase was approved for FNS.  There was some discussion about the link between rank and allocation.  Ranking scores show the relative importance of services without regard to allocation.  Ranking scores only affect allocation when there is a proportionate increase or decrease across service categories, with higher ranked categories receiving a greater increase or smaller decrease than lower ranked ones. 
  • At the Tri County Steering Committee, the FY 2020 application spending plan was approved.As the portfolio is mostly new and there is no data on spending, the Committee voted to do a 5% proportionate increase (the maximum allowed by HRSA) across the portfolio.  The Living Together Psycho-Social Group meetings are now being held at Hudson Valley Community Services. 
  • TGNB Sub-Committee spoke about Ryan White funding for the underserved and the use of secret shopping to examine service underutilization. The Committee also addressed the issue of proper pronoun usage and sensitivity to the TGNB population.  
  • Consumer Quality Improvement Subcommittee has received feedback from Angela as well as sub-committee input on articles and research that address domains. The next step is receiving input from CHAIN and use this input for the sub-committee’s final document submission on recommendations in the hopes that this input is included in the Master Directive.


David Martin addressed U=U and the availability of treatment adherence data.  There is an inconsistency between the U=U message and data on consumer treatment adherence.  This may lead to a false sense of security to consumers.  A consumer may have an undetectable viral load at time of blood work, but this does not constitute adherence over a period of time. Some consumers’ labs may indicate that a person’s HIV is undetectable, but this does not mean that s/he is always undetectable as some consumers take intentional and not intentional “drug holidays”.

Secret Shoppers is on the deck for next year in order to go into a number of agencies and use benchmarks to examine client service satisfaction.  

Randall Bruce spoke about SAGE and housing applications for LGBT friendly apartments available in Brooklyn. The application is due May 29, 2019 and can only be completed online. Randall will send the information to Darryl and he will email the information to Committee members. 

Rob Walker spoke about reaching out to Well/Cornell University and/or Rockefeller University Clinical Drug Trials to address once a month treatment options for consumers who have treatment adherence issues. He suggested we invite representatives from Cornell or Rockefeller to speak to the Committee about the pros and cons of this important issue.

There being no new business, the meeting was adjourned at 3:30PM.