Thursday, April 22, 2021
By Zoom Videoconference
M I N U T E S
Members Present: G. Harriman (Governmental Co-chair), D. Walters (Community Co-chair), P. Carr (Finance Officer), A. Abdul-Haqq, S. Altaf, F. Alvelo, M. Baney, D. Beiling, L. Best, A. Betancourt, R. Brown, R. Bruce, M. Caponi, E. Casey, R. Chestnut, B. Cockrell, M. Diaz, J. Edwards, B. Fields, R. Fortunato, T. Frasca, M. Gilborn, C. Graham, B. Gross, A. Lugg, J. Natt, G. Plummer, J. Reveil, M. Rifkin, A. Roque, L. Ruiz, J. Schoepp, F. Schubert, C. Simon, M. Thompson, T. Troia, R. Walker
Members Absent: M. Bacon, P. Canady, M. Domingo, J. Dudley, B. Fenton, MD, D. Martin, D. Powell, M. Singh, B. Zingman, MD
Staff Present: DOHMH: D. Klotz, T. Gardet, M. Feldman, PhD, V. Cortés, J. Colón-Berdecía, K. Mack, A. Azor, J. Carmona, J. Bell, E. Jimenez-Levi, G. Navoa; Public Health Solutions: A. Feduzi; Parliamentarian: J. Corbisiero
Agenda Item #1: Welcome/Moment of Silence/Introductions/Minutes
Mr. Harriman and Ms. Walters opened the meeting followed by introductions and a moment of silence led by Ms. Simon in honor of Terri Smith-Caronia, a long-time advocate for PWH who was remembered for her tireless work for the HIV community and beyond. The minutes of the March 25, 2021 meeting were approved with no corrections.
Mr. Colón-Berdecía announced that applications for membership on the Council and committees for terms beginning in September are due June 18th. Everyone is encouraged to spread the word to clients, co-workers and especially consumers. Mr. Colón-Berdecía is available to present to groups of consumers about the Council and Ryan White program.
Agenda Item #2: Recipient (Grantee) Update
Ms. Plummer reported that HRSA’s HIV/AIDS Bureau (HAB), allow greater flexibility during the COVID-19 pandemic, has waived penalties for going over the 5% cap on under-spending. The FY2022 RWHAP Part C Early Intervention Services Program notice of funding opportunity was released on April 2nd. The purpose of the program is to provide comprehensive primary health care and support services in an outpatient setting for low income, uninsured, and underserved people with HIV.
As the Council was notified by email, the EMA received the full notice of award from HRSA on March 30th. The total grant award for FY 2021 is $90,652,054, a reduction of $2,250,388, or 2.2% (not including the CARES Act/COVID relief money from 2020). The EMA also received the FY 2021 Ryan White Part A grant application review and score from HRSA. We received a score of 99 (out of 100) with no weaknesses cited.
On April 12th, Public Health Solutions (PHS), on behalf of NYC DOHMH BHIV released the concept paper “PlaySure Network 2.0: Provision of a Comprehensive Health Package of HIV-Related Services in Healthcare and Non-Healthcare Settings Using an Equity-Focused One-Stop Shop and Holistic Client-Centered Model”. In response to questions from Ms. Lawrence and Ms. Casey, it was reported that the Concept Paper currently does not include people with serious mental illness or substance use issues as priority populations. Feedback on this can be provided to PHS for possible inclusion in the final RFP.
Agenda Item #3: HIV (Prevention) Planning Group Update
Mr. Gardet gave an update from the NYC HIV Planning Group (HPG), which with its workgroups and committees is a planning body mandated by the CDC to advise DOHMH BHIV on the use of CDC funds for HIV prevention and inform the development/updating of the NYC/NYS Integrated HIV Prevention, Treatment and Care Plan. The HPG will soon hold its annual strategic planning meeting (ASPM), at which the HPG seeks to: organize and develop CDC mandated responsibilities; ensure equitable understanding of HIV prevention; conduct team building, leadership training, and professional and personal development; integrate new members; and enhance dialogue between community and government. Workgroups and committees will also develop annual work plans with goals, objectives, deliverables and timelines. The desired outcomes of the ASPM are: strategic work plans that guide annual work; enhanced team collaboration; enhanced coordination among workgroups/committees; stronger partnership with DOHMH; higher levels of participation and commitment; high levels of satisfaction with personal and professional development assessments and tools; and a strong evaluation feedback loop.
Mr. Harriman expressed the hope that the HPG and Council can coordinate more closely on issues that affect the system of care.
Agenda Item #4: FY 2021 Reprogramming Plan
Mr. Natt presented the FY 2021 Reprogramming Plan, approved by the Executive and PSRA Committees last week. A reprogramming plan is approved every spring to authorize the Grantee and Master Contractor to reallocate unspent funds (accruals) within the fiscal year to maximize spending. In most years, the first item on the plan is to enhance over-performing programs. This is not feasible this year, as the programs are still being paid through cost-based reimbursement due to COVID. Also, based on discussions during the recent spending scenario planning process, there was a consensus in PSRA that the priority for this year’s reprogramming be restoring the reduction made to ADAP to cover the cut to the award and new initiatives. Should additional funds be available and contracts revert to performance-based reimbursement later in the year, the plan allows for the usual authorization to move funds between service categories up to a maximum of 20% of the original service category allocation. ADAP is not subject to the 20% cap.
Reprogramming is money freed up in the course of the year (accruals) that must be spent by the end of the same fiscal year. There will be a larger than usual amount of carry-over (over $2M in unspent funds from FY 2020 that can be spent this year). Once that amount is known, the PSRA and Council will approve a carry-over plan that can include program enhancements. As these funds are one-time, they cannot be used for programs that require on-going funding. Also, while accruals and carry-over cannot be used to cover the cut to the award, as they become available later in the year, they effectively are used that way by reimbursing ADAP for the cut that program took to cover the reduction.
On behalf of the PSRA Committee, Mr. Natt moved to adopt the 2021 Reprogramming Plan as presented. The motion was adopted 34Y-0N.
Agenda Item #5: Bylaws Amendment: Electronic Participation at In-person Meetings
Mr. Fields presented a proposed Bylaws amendment concerning electronic participation at in-person meetings. Currently, the Bylaws allow members to participate electronically at face-to-face meetings, but they do not count toward a quorum and cannot vote. That rule was made several years ago out of concern that people might just phone into every meeting and not be fully engaged. Given the probable need for continued COVID precautions, the Rules & Membership Committee (RMC) expects that when face-to-face meetings resume, they will be a hybrid of in-person and remote. This will allow for physical distancing in the room and take into consideration that some people may need to continue avoiding exposure to groups of people. Also, RMC considered that there are people from far-flung parts of the EMA where transportation is a barrier to attending in-person meetings, particularly Tri-County and Staten Island. RMC believes that those barriers to participation should be removed. It was noted that since meetings went virtual, attendance at full Council meetings is up 50%. RMC will assess the quality of participation by members who remotely access meetings, and so the Bylaws state that the RMC will review how this is working in 2023 and recommend revisions as necessary. The text of the amendment is:
Article IV, Section 1(e) In-person participation at Planning Council and committee meetings is preferred, but the Council recognizes that a number of people may have barriers to engagement, such as health status, transportation and work related duties. In-personmeetings of the Council or its committees shall allow for participation by video or conference call or other electronic means that permit simultaneous visual and/or aural communication. Meetings may also be conducted solely by electronic means. All meetings must comply with open meetings laws. At all meetings with electronic participation, any ballot votes required under the rules or ordered by the Council or committee shall be conducted either by roll call vote or electronically (using an Internet service that supports electronic voting). All meetings shall be subject to rules adopted by the Council to govern meetings, which may include any reasonable limitations on, and requirements for, members’ participation.
(f) Members who are present electronically at an “in-person” meeting of the Council or its committees shall be considered present for the purpose of fulfilling meeting quorum or attendance requirements, may speak in debate, and may make motions or vote. This policy will be reviewed in September 2023.
Mr. Fields moved, on behalf of the Rules & Membership Committee, to adopt the Bylaws amendment as presented. The motion was adopted 34Y-0N.
Mr. Frasca thanked Mr. Fields and the RMC for their thoughtful solution.
Agenda Item #6: Youth and HIV
Ms. Walters introduced Dr. Feldman and Ms. Cortés, explaining that a number of discussions within the BHIV, DOHMH and within committees of the Planning Council have brought up the issue of how to better address the needs of Youth living with HIV. We know from surveillance data that youth have challenges engaging in care and viral load suppression. To highlight this issue, Dr. Feldman and Ms. Cortés will present their work with youth to help the Council consider how to better engage youth.
Ending the Epidemic for Young Adults Living with HIV: Leveraging Ryan White Part A Services to Improve Health Outcomes
Dr. Feldman explained that YAWH in NYC are at significant risk for poor health outcomes and onward HIV transmission. In 2017, YALWH (age 18-29 years) represented 40% of those newly diagnosed in NYC, and only 65% of YAWH (vs. 76% of PLWH >age 30) were virally suppressed. YAWH are predominantly Black, Latino, and/or sexual minorities,and often experience unstable housing, mental health and substance use issues associated with poor HIV health outcomes, including unsuppressed viral load. In 2017, only 13% of YAWH in NYC received RWPA services. To address the significant HIV care and treatment adherence gaps for YAWH, it is important to ensure medical and support services are tailored to their unique developmental and psychosocial needs.
YAWH ≤24 years old who received RWPA care coordination in NYC were significantly less likely than their older counterparts to achieve durable viral suppression (DVS). A relatively low percentage of YAWH living in NYC access RWPA services. There is also evidence that YAWH who do receive RWPA services may benefit less than their older counterparts. The BHIV Research and Evaluation Unit (REU) undertook a project to identify locally-defined strategies to improve RWPA-funded support services’ accessibility to and the responsiveness to YAWH, enhance and tailor RWPA services to better respond to the needs of YALWH; and promote their engagement in RWPA services. The project was guided by Implementation Science, which is defined as the scientific study of methods to promote the systematic uptake of research findings and other evidence-based practices into routine practice and improve the quality and effectiveness of health services. The project formed and convened provider and youth community advisory boards (CABs) specifically for this project. The CABs met three times to get input on issues related to providing/receiving medical and support services.
The themes that came out of the youth CAB were: being treated like a person and not a “number”; challenges accessing MH services (gap between request and initiation of services, having to wait a long time to get a new appointment, not seeing a consistent provider, not wanting to use telehealth); and fears about transitioning from pediatric to adult services. There was some convergence between the themes that came up at the provider and youth CAB meetings such as transitioning from pediatric to adult care. Providers also discussed concerns that YALWH lack basic life and HIV self-management skills.
Using eShare and the HIV surveillance registry, the project sought to understand the characteristics, needs, and service utilization patterns of YAWH who received RWPA services in NYC and to examine the characteristics associated with VLS among YAWH who received RWPA services in NYC. YAWH receiving RWPA services were predominately male and Latinx/Black, well over half were unstably housed, and almost one third reported recent depression/anxiety symptoms. There are disparities in psychosocial issues by gender, with a higher percentage of transgender YAWH recently incarcerated, and a higher percentage of females homeless/unstably housed. The project also identified the proportions of YAWH who: (1) had a need for support services (defined as housing instability, food insufficiency, drug use, and/or sub-optimal HIV outcomes: and (2) received services to address that need; and (3) experienced an improvement relative to the precipitating need after receiving these services.
Although a high % of YALWH were unstably housed/homeless, a relatively low percentage of youth who received a housing service. It should be noted that there are housing services funded through other sources (HOPWA, HASA) that the youth may have received, so these data are only part of a larger picture of support services use among YALWH. A very low percentage of youth became food sufficient, as this is a very difficult problem to resolve as it involves having a stable income. Eleven percent of YAWH used substances, but only a third of those received harm reduction services. Despite the relatively high percentage of youth who had clinically significant mental health symptoms, RWPA mental health service use was low. Almost half of youth had sub-optimal HIV outcomes (not being in medical care/not being on ART/having an unsuppressed VL), and of these almost half received case management services to support improving health outcomes. It is encouraging to see that of these, a fairly high percentage had improvements in terms of HIV outcomes. Sixty-eight percent of YAWH in the sample achieved durable VLS at least once, and achieving that was significantly more likely among YAWH who were employed, stably housed, and had more than a high school education. Durable VLS was less likely among YAWH who had histories of incarceration and/or drug use.
The project also conducted key informant interviews with 10 YAWH and 10 providers who work with this population to better understand the extent to which support services respond to the needs of YAWH. Takeaways from the YAWH interviews were: 1) Housing and mental health services (and life skills) are the most needed services; 2) Engaging and retaining YAWH in care can be difficult because of transience; 3) YAWH prefer agencies that have more flexibility in terms of appointment times and take initiative in helping them in make/reschedule appointments (shorter appointments and “rushed” services, can leave youth feeling less valued); 4) YAWH value agencies where they can immediately begin having all of their needs met onsite and receive help them navigate referrals to outside agencies, when needed. Takeaways from the provider interviews were: 1) YAWH most value agencies where staff (at all levels) are welcoming, empathetic, and non-judgmental (i.e., do not stigmatize them for behaviors such as not using condoms); these relationships are key for retention; 2) Most YAWH hear about agencies through word-of-mouth and are more likely to engage with agencies that are peer-recommended; 3) Many YALWH form communities and stay connected through Facebook networks/groups. There is potential for reaching youth and conducting services through social media, video chat, etc.
The findings should prompt discussion about what support service YAWH need most, where are the biggest challenges in terms of linking and retaining YAWH in these services, what would improved services for YAWH look like, and what kinds of strategies could be used to address the challenges to engaging and retaining YAWH in support services. Some strategies that could be the focus of a future project are: 1) Marketing MH services to YAWH; 2) How to get more YAWH into MCM; 3) How life skills could fit into a program such as Health Education & Risk Reduction (e.g., a Positive Life Workshop for young adults); and 4) Customer service (how do you convince providers to be more patient, etc. when they feel burnt-out, underpaid, etc.).
A summary of the discussion follows:
- The numbers of those 18-29 are still relatively small, and so it would be difficult to further break them down into smaller, more discrete age categories.
- The culture of providers and stigma greatly impact how youth are engaged. One major issue is for people who were in the pediatric and adolescent care system, where they would have had a scaffold of services to support them. Graduation to adult care, which involves more self-management, can be challenging.
- The above is also true to young people who move to the City, leave their parents’ insurance, and must navigate health care independently. This is even more daunting for people with challenges around housing or immigration status.
- Having young people in leadership and other positions where they can speak directly to other youth can be empowering.
- Having non-traditional hours is needed to make services more accessible to young people.
- Programs need to address pregnancy issues, in order to prevent perinatal infections.
Youth Explore Sexual Consent: A Youth Participatory Action Research (YPAR) Project
Ms. Cortes, Assistant Director of Community Engagement for NYC Teens Connection (NYCTC) at DOHMH, presented an overview of a youth participatory action research project where youth leadership teams informed the design of a public awareness and social media campaign on sexual consent communication. NYCTC focuses on assessing and respondingto existing social norms in communities in order to promote sexual and reproductive health equityamong all youth, with a focus on marginalized youth. There are community advisory groups of both adult stakeholders and youth leaders in each of NYCTC’s communities of focus who were expected to develop a public awareness campaign in partnership on a sexual health topic these groups felt needed more attention and education in our communities. The topic chosen was sexual consent communication.
The program strives aims for collaboration and shared leadership, moving participants up a ladder to meaningful involvement with youth-initiated, shared decisions with adults. Community Action Teams (CATs) and Youth Leadership Teams (YLTs) realized that to inform the design of the awareness campaign, they needed to learn more about how youth 13-19 years of age in NYCTC’s priority communities navigatesexual consent communication effectively. In 2018 they embarked on a YPAR Project in partnership with the CATs and three youth leadership teams to learn how young people in NYC navigate sexual consent. In a YPAR project, youth are involved in all parts of the research including developing the research question, study designs, survey tools as well as data collection. Youth involvement in all phases of the campaign was also something that was requested by our adult community partners to strengthen this work. From January through May of 2018, YLT youth received training on what YPAR is, how it is similar or different from traditional research, research ethics, and how to moderate focus groups. The focus groups were held over 6 weeks, hosted by 11 CAT partners in each borough, including gender-specific and non-specific groups. 113 NYC youth were reached with the focus groups. This was followed by a youth friendly data analysis approach involving the YLTs.
Themes developed during the analysis revolved around: verbal communication; traditional gender roles create double standards (including around rape); relationship dynamics; drug and alcohol use; celebrities and the media as role models; and technology. In March 2019, the project began working with our youth on taking what was learned from our YPAR focus group data analysis to inform the creation of a social awareness campaign for NYC teens on consent communication that centered the importance of asking for consent before acting on sexual feelings. Three ideas were selected for campaign videos, and youth wrote, reviewed, and updated various drafts of scripts and storyboards. Youth participated in all the aspects of filming and video production.
Through this project, the program learned that: 1) Having youth as partners helps center the voices of members from the population of focus allowing products to resonate with and be received by prioritized communities; 2) Participatory projects add tremendous value, including buy-in and support, often a result of time invested in trust building, visioning and negotiation with community; and 3) This work took longer than it had to because the Agency doesn’t do this often and the systems to go through the communications process and approvals process are not set up for this kind of work. Traditional agency protocols would benefit from adaptations to approval processes to support future community participatory projects. The campaign videos have collectively earned over 109K views since the launch. Next steps are: 1) Developing a Consent Toolkit; 2) Publication of the YPAR manuscript; 3) Continued Dissemination of the Campaign; and 4) Planning for Post COVID-19 Outreach Efforts.
Considerations for Engaging Youth include: 1) Invest in effectively developing youth-adult partnerships; 2) Find creative ways to involve them in different aspects of your program; 3) Create opportunities for youth to share decision making; 4) Hire young people and/or provide monetary incentives; and 5) Meet youth where they’re at.
A summary of the discussion follows:
- Incentives in the research phase included gift cards.
- The initial grant funding required that the program be targeted to areas with highest rates of unintended teen pregnancy. The program wants to expand to other areas of the City.
- The program does unofficial mentoring, such as writing recommendations letters for jobs and school, as well as other one-on-one interaction. They would like to create an alumni program to keep graduates involved.
There being no further business the meeting was adjourned.