Needs Assessment Committee Meeting May 14th, 2026

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David Klotz
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Meeting of the Needs Assessment Committee

Co-Chairs: Emma Kaywin, Rasheed Ford

May 14, 2026 2:00 – 16:11 PM

In-person: Cicatelli Associates, 505 8th Avenue, 20th Floor, Lavender Room

Virtual: Zoom Video Conference

(https://health-nyc.zoomgov.com/j/16087736946?omn=1609488893)

Members Present: Emma Kaywin (Co-Chair), Rasheed Ford (Co-Chair), Billy Fields, John Schoepp, Marcy Sedlacek, Jennifer Irwin, Fay Barrett, Arthur Fitting, Freddy Molano, Reginald T. Brown,

Staff Present: NYC DOHMH: David Klotz (Governmental Co-chair), Doienne Saab, Laura Moya Adames, Abraham Omeyoma, Adriana Eppinger-Meiering, Sara Kramer, Cristina Rodriguez-Hart,

Other Planning Council Members Present: David Martin (Community Co-chair), Cesar Nunez, Steve Hemraj, Asia Betancourt

Guests: Dr. Dima Dandachi – University of Missouri, Dr. Kelly O’Brien – University of Toronto, Gabriel San Emeterio – Long COVID Justice, Sameera Ahmed – Michigan Department of Health and Human Services, Voula – Long COVID Justice, Alina Tello-Cordon, Benedict Tan, Blanka Bölcsvölgyi, Denise Lopez-Majano, Elaina Gauthier-Mamaril, Ellen Matzer, Forest McDonald, Sameera Ahmed, Terri Wilder, William Brent Sawyer, Joe Bovino, Trinidad, Gillian, Judy, Kaitlin, Lizzie, Roseanna, Cristy, CC. 

Agenda Item #1: Welcome/Roll Call/Moment of Silence/Announcements

Co-chair Rasheed F. opened the meeting and welcomed attendees both in person and online.

Staff member Laura M. conducted roll call, acknowledging several first‑time attendees, including individuals from Long COVID Justice, academic researchers, and community advocates. New attendees shared their email addresses in the Zoom chat for follow‑up materials. Co-chair Emma K. reviewed housekeeping notes for in‑person participants, including the availability of doodling supplies and note sheets for the panel discussion.

A moment of silence was led by Asia B., honoring “those still living, and those who have gone beyond,” with acknowledgment of community members lost in the past year.

During announcements, staff member Abraham O. encouraged members to participate in community activities and outreach, including the AIDS Walk New York and Pride‑related events.

Agenda Item #2: Meeting Minutes

The April minutes were displayed for review. No revisions were suggested. Minutes were approved as presented.

Agenda Item #3: Topic Presentations – The Intersection of HIV and Long COVID

Rasheed F. helped contextualize the meeting’s topic by noting that emerging research shows that PWH may face heightened vulnerability, overlapping symptoms, and barriers to diagnosis and care related to Long COVID. Understanding this intersection will help the Committee better assess the needs of Ryan White Part A clients and guide future planning efforts.

The Underrecognized Burden and Diagnostic Gap – Navigating the Intersection of HIV and Long COVID

Presenter: Dr. Dima Dandachi, MD, MPH, FIDSA, FACP – University of Missouri

Dr. Dandachi provided an overview of Long COVID and why it remains difficult to define and diagnose, noting conflicting definitions, the absence of a biomarker, and the wide range of mechanisms and symptoms involved. Dr. Dandachi highlighted the 2024 NASEM definition as the most inclusive: “Long COVID (LC) is an infection-associated chronic condition (IACC) that occurs after SARS CoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.” 

Dr. Dandachi emphasized that Long COVID is significantly underdiagnosed and that PWH may be especially vulnerable due to overlapping symptoms—such as fatigue and cognitive dysfunction—that are often dismissed or attributed to HIV, aging, or anxiety. She reviewed common symptom clusters (fatigue and post‑exertional malaise (PEM), neurocognitive issues, cardiopulmonary symptoms, dysautonomia, and sleep disturbance).

Dr. Dandachi also summarized known risk factors, including severe acute infection, lack of vaccination, chronic conditions, female sex, older age, and social determinants of health. Participants engaged actively in the chat with questions about PEM, misdiagnosis, and geographic variation, and several shared personal experiences navigating Long COVID care.

HIV and Long COVID — Episodic Disability and Rehabilitation

Presenter: Dr. Kelly O’Brien, PhD, PT – University of Toronto

Dr. O’Brien presented research on the episodic nature of disability in Long COVID and its implications for rehabilitation. She reviewed major definitions from WHO and NASEM and shared data showing the substantial long‑term impact of Long COVID on functioning and employment. She described Long COVID as a multi‑systemic condition affecting cardiovascular, pulmonary, neurological, immune, and vascular systems, with symptoms such as fatigue, cognitive impairment, dysautonomia, and ME/CFS‑like features.

A key focus of the presentation was post‑exertional malaise/symptom exacerbation (PEM/PESE), which she emphasized is not due to deconditioning but instead related to impaired mitochondrial function, and can worsen with exercise. Dr. O’Brien introduced the Episodic Disability Framework, outlining dimensions such as physical, cognitive, mental‑emotional, day‑to‑day activities, social inclusion, and uncertainty, and explained how intrinsic and extrinsic factors influence disability experiences. She noted that the framework was originally developed through her research with PWH, and that many of the same dimensions and patterns of episodic disability are now being observed in Long COVID, reflecting important overlaps between the two conditions.

Dr. O’Brien concluded with principles for safe rehabilitation—screening for dysautonomia, cardiac impairment, and PEM, emphasizing pacing as a core management strategy, and that exercise is not universally safe for Long COVID. Participants shared additional resources and expressed interest in continuing the discussion in a future session.

HIV Complexities — Disability, Justice, and Living Through Ongoing Pandemics

Presenter: Gabriel San Emeterio, LMSW – Long COVID Justice

Gabriel introduced the disability justice (DJ) framework as a lens for understanding the experiences of PWH and Long COVID. They explained that DJ, created by disabled queer and trans people of color, centers autonomy, interdependence, and collective access while recognizing how ableism intersects with racism, capitalism, and other systems of oppression.

Gabriel described disability as dynamic and often invisible, noting that nearly half of adults with diagnosed HIV report at least one disability, with higher rates among people living in poverty or homelessness. They connected these patterns to Long COVID, which may disproportionately affect PWH and exacerbate existing health challenges, stigma, and cognitive or physical limitations. He also highlighted practical tools—including the Long COVID Essentials Toolkit and symptom‑tracking resources—to support individuals living with fluctuating symptoms. The chat reflected strong engagement, with participants sharing links and expressing how the presentation resonated with their lived experiences.

Shared Resources:

Throughout the meeting, attendees shared several resources in the chat to support further learning and exploration of this topic. The following is a compiled list of those links, organized by theme:

Long COVID Definitions, Research, and Clinical Guidance

Long COVID Care, Support, and Education

Symptom Tracking & Self‑Management Tools

Disability Justice & Community Care

Additional Research Shared – IgG / endothelial & mitochondrial damage studies

Next Steps for the Needs Assessment Committee:

Multiple participants expressed strong interest in continuing this discussion, and the Committee agreed to invite the guest speakers back for a dedicated Q&A session at an upcoming meeting. The NAC will also begin developing a report summarizing key considerations around the intersection of HIV and Long COVID for Ryan White Part A service providers, with a draft to be reviewed at the next Committee meeting.

Agenda Item #4: Public Comment

Community members emphasized the need for improved infection‑control practices, including masking, ventilation, and air purification. At the beginning of the meeting, one participant noted in the chat that they were leaving the Zoom room because individuals in the in‑person room were unmasked. Attendees shared personal experiences navigating HIV and Long COVID care, including barriers to diagnosis and insurance coverage.

Adjournment

Rasheed F. and Emma K. thanked presenters and attendees for their participation and called the meeting to a close at 4:11pm, inviting everyone to the next NAC meeting on June 11th, 2026, from 2:00 to 4:00PM.

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