OMH-funded New York City Health + Hospitals program increased hydroxyurea prescribing and reduced emergency visits, presenters say

Radmal Felicia Collins, Deputy Assistant Secretary for Minority Health and Director of the HHS Office of Minority Health, opened a September webinar by outlining OMH’s 2020 demonstration grant to increase hydroxyurea prescribing for children with sickle cell disease and noting that OMH awarded $4,250,000 to New York City Health + Hospitals to test the approach.

New York City Health + Hospitals project director Jean Bernard Poulard said the system built an “integrated suite of tools and collaborative actions” — clinician education, an EPIC-based sickle cell registry and navigator, individualized pain action plans, community health-worker integration and a clinician incentive payment model — to raise hydroxyurea use and improve outcomes for children and adolescents with sickle cell disease.

"Hydroxyurea has made is an amazing disease modifying drug," Poulard said, listing benefits including fewer hospitalizations, fewer pain episodes and reduced stroke risk. He and other presenters said fewer than half of eligible patients nationally receive hydroxyurea, which the grant sought to address.

Kenneth Rivlin, MD, PhD, gave clinical context, describing sickle cell disease as an inherited blood disorder that causes widespread complications across organ systems and contributes to shortened life expectancy for people with SS disease. "Sickle cell disease is a microcosm of how issues of race, ethnicity, and identity come into conflict with issues of health care," Rivlin said, framing the intervention as addressing long-standing disparities.

Bruce Bernstein, who led development of the financial incentive program, said clinicians in three provider categories (primary care/pediatricians, pediatric hematologists, and emergency clinicians) were eligible for quarterly incentive payments after completing a one-hour education module. Payments combined quantity (number of patients treated) and quality measures (steps such as asking about hydroxyurea, providing patient education, initiating prescriptions when appropriate and connecting families to community health workers).

Lindsay Kogan, the evaluation lead, summarized outcome trends drawn from EHR and Medicaid prescription data. The program enrolled more than 90 providers across nine sites; post-intervention surveys showed substantial increases in provider knowledge and comfort with prescribing hydroxyurea (for example, the proportion who "strongly agree" on a key knowledge item rose from about 12% pre-intervention to roughly 40% post-intervention). Kogan said incentive-network clinicians saw a larger increase in hydroxyurea prescriptions (the presenters’ slides labeled incentive providers as the gold bars) and that prescription fills and adherence (measured as >80% days covered) also increased during the 2022–2023 incentive period.

"We were happy to report is you do see in a quite a lot of these metrics, you can see there is a dramatic increase," Kogan said, summarizing survey and prescribing data.

Kogan and other presenters said emergency-department visits fell among patients seen by incentive providers and that ED-related costs were lower for that group; inpatient outcomes were mixed and will need further analysis to account for differences in patient complexity. Marcy Stein Albert said the EPIC navigator and transition tools are now routinely used across pediatric hematology in the system and that as of the end of 2023 about 36% of patients ages 0–21 had individualized pain plans documented in EPIC.

Candice Alfonso described partnerships with community-based organizations that provided transportation and meal support during hospitalizations, and a collaboration with the New York Blood Center to support blood donation drives; presenters said H+H’s partnership yielded roughly 445 donations over three years, benefitting about 1,335 patients.

Speakers identified implementation challenges: the pandemic and hiring delays, uneven provider engagement (high among pediatric hematologists, lower in ED settings), complexity in designing a multi-site quarterly payment model and bureaucratic steps required for a city-owned health system to issue incentive payments. Bernstein urged continuing work with state Medicaid offices and CMS on sustainability and reimbursement for community health workers and other ancillary personnel.

Presenters said the program’s next steps include sharing the EPIC tools and the educational module more broadly (they reported they would present the tools to Epic National and to community-based organizations), continuing to analyze inpatient outcomes and pursuing funding and payment pathways to support community health workers and adult sickle cell programs across boroughs.

"It takes a village — in this case it took the whole state," Poulard said, thanking OMH, state Medicaid partners and community organizations for their roles in the demonstration project.

The webinar concluded with a short Q&A; presenters said slides and a recording would be posted and shared with registrants.