October 27, 2014

NICHQ Releases Congressional Report on the Sickle Cell Disease Treatment Demonstration Program Findings; Overview Webinar Dec. 4

Recommends Congress Address the Needs of Sickle Cell Population Through Broadly Implemented Health Policies and Changes to Public Health Programs

Sickle Cell Disease Treatment Demonstration Program Congressional ReportNICHQ released a congressional report today on the outcomes from the federally supported Sickle Cell Disease Treatment Demonstration Program (SCDTDP). The report details recommendations for improving care and outcomes for individuals affected by sickle cell disease across three different levels of action: (1) clinical delivery and public health programs, (2) design or re-design of the SCDTDP and (3) broad health policy. A 60-minute webinar Dec. 4 at 3 p.m. ET will provide an overview of the results and recommendations stemming from the SCDTDP.

From September 2010 to 2014, NICHQ served as the National Coordinating Center for the SCDTDP, which is administered by the Maternal and Child Health Bureau of the Health Resources and Services Administration. As the National Coordinating Center, NICHQ sought to improve the quality of care that individuals with sickle cell disease received at nine SCDTDP demonstration sites within the United States.

“These programs showed what can be achieved when patients and families, providers, community-based organizations and public health and government agencies work together to measure and improve care for people with sickle cell disease,” says NICHQ CEO Charlie Homer, MD, MPH. “We call on clinical programs across the country to adopt the practices tested and refined by these teams, and on Congress to not only reauthorize of the Sickle Cell Treatment Act but to enable all people with sickle cell disease in the U.S. to benefit from them.”

Some of the key recommendations of the congressional report include:

  • Address deficiencies in emergency department care by establishing pain protocols, providing and making widely available pain management plans and using more easily administered medications.
  • Implement systems to increase rates of appropriate screening and preventative interventions.
  • Ensure all facilities providing care for individuals with sickle cell disease incorporate the six core elements of transition from pediatric to adult care where appropriate.
  • Assess current practice patterns for screening of immigrants for sickle cell disease.
  • Implement data systems that enable management of the entire sickle cell disease population served through a clinical health care delivery system or in a geographic area.
  • Address healthcare needs of this population through broadly implemented health policies, such as:
    • Implementing new payment models that reward prevention and care management.
    • Adjusting Medicaid payment policies and enhancing reimbursement rates for necessary services.
    • Adopting recently developed performance measures for sickle cell disease into insurance programs.
    • Designing specific workforce training programs for healthcare professionals interested in caring for individuals with sickle cell disease.

NICHQ is hosting a 60-minute webinar on Dec. 4 at 3 p.m. ET to discuss the findings and recommendations of the report. Register here. A full copy of the congressional report is available in the sickle cell section of NICHQ’s website (http://sicklecell.nichq.org).