ASH and Federal Officials Hold Town Hall on Sickle Cell Disease

This past September, the Centers for Medicare and Medicaid Services (CMS) and the American Society of Hematology (ASH) cohosted a town hall (youtu.be/t2LkQUgysVk) on potential measures, interventions, and approaches to improve the quality of care for patients with sickle cell disease (SCD) through federal programs and policies.

The September 4 meeting was a direct result of ASH’s ongoing advocacy work with CMS focused on improving access to high-quality SCD care and discussions with the agency about ASH’s quality measure addressing pain in the emergency department. The town hall provided a unique opportunity for ASH to advise CMS on key actionable solutions in this area of policy.

In 2023, the U.S. Department of Health and Human Services (HHS) set forward an SCD Action Plan (cms.gov/files/document/sickle-cell-disease-action-plan.pdf) to improve health outcomes and reduce health disparities for individuals with SCD. One crucial component is improving the quality of care.

Standing, from left to right, are Titilope Fasipe, MD, PhD, codirector of Texas Children’s Sickle Cell and Thalassemia Program and assistant professor of pediatrics in the Division of Hematology/Oncology at the Baylor College of Medicine; Debi Sarkar, MPH, deputy director of HRSA’s Division of Services for Children with Special Health Needs; Robert Liem, MD, head of the Division of Hematology, Oncology, Neuro-Oncology, and Stem Cell Transplantation at the Lurie Children’s Hospital of Chicago and professor of pediatrics at Northwestern University’s Feinberg School of Medicine; Deirdra Stockmann, PhD, MUP, director of the CMS Center for Medicaid and CHIP Services’ Division of Quality and Health Outcomes; Lynn Sha, MPP, counselor to the secretary of HHS; and Capt. David Wong, MD, senior advisor for sickle cell disease to the HHS Office of the Assistant Secretary. Seated, from left to right, are Dora Hughes, MD, MPH, chief medical officer and director of the CMS Center for Clinical Standards and Quality (CCSQ), and Ron Kline, MD, chief medical officer in CCSQ’s Quality Measurement and Value-based Incentives Group.

During the meeting, representatives from two offices within CMS (the Center for Medicaid and CHIP Services and the Center for Clinical Standards and Quality), as well as officials from the Health Resources Services and Administration (HRSA) and the HHS Office of the Assistant Secretary for Health, shared highlights from several programs and updates on initiatives dedicated to supporting individuals with SCD. While all these agencies have demonstrated their commitment to providing quality care for individuals with SCD, they also call for continued engagement to close persistent gaps in care.

Among those representing ASH were Robert Liem, MD, Chair of the ASH Sickle Cell Disease Guideline Coordination Panel and member of the ASH Committee on Quality, and Titilope Fasipe, MD, PhD, chair of ASH’s technical expert panel developing SCD clinical quality measures, member of the ASH Committee on Practice, and chair of the ASH Research Collaborative’s SCD National Community Advisory Board. Drs. Liem and Fasipe presented background on the Society’s Sickle Cell Disease Initiative, and the multipronged approach to improving care.

One of the highlights of ASH’s SCD Initiative is the recently developed electronic clinical quality measure (eCQM) addressing timely pain management for SCD. The eCQM measures the median time (in minutes) from emergency department arrival to initial administration of pain medication for all patients, regardless of age, with a principal encounter diagnosis of SCD with vaso-occlusive pain events. This measure is under consideration for inclusion in both CMS’ Hospital Outpatient Quality Reporting Program and the agency’s Rural Emergency Hospital Quality Reporting Program. CMS is expected to publish a list of the measures under consideration by December 1, 2024, after which ASH will promote the opportunity to provide comments. ASH and CMS highlighted the promise of this measure, which addresses the current limitations of federal quality improvement programs for rare conditions.

Mariah J. Scott, MS, MPH, a patient advocate and a doctoral student with a focus in quality measurement at Rutgers University-Camden, shared insight on the importance of patient-reported outcomes for individuals with SCD. One challenge to understanding SCD outcomes is that the condition manifests differently from person to person. However, improved quality of life remains the most common patient goal. Patient-reported outcomes are unique in that they provide direct insight into how individuals manage the disease and its symptoms while going about their day-today lives.

Other quality improvement opportunities proposed and discussed at the meeting included interventions related to transcranial Doppler screenings, preventive dental care and eye exams, medication therapy (e.g., care coordination involving the prescription of hydroxyurea and penicillin), support from community health workers, metrics for service use (e.g., seven-day emergency department return rates), and the transition from pediatric to adult care.