Letter to Senate and House Leadership in Support of the Sickle Cell Disease Comprehensive Care Act

November 17th, 2022

The Honorable Charles Schumer
Majority Leader
United States Senate
Washington, DC 20510

The Honorable Nancy Pelosi
Speaker of the House
U.S. House of Representatives
Washington, DC 20515

The Honorable Mitch McConnell
Republican Leader
United States Senate
Washington, DC 20510

The Honorable Kevin McCarthy
Republican Leader
U.S. House of Representatives
Washington, DC 20515

Dear Majority Leader Schumer, Minority Leader McConnell, Speaker Pelosi; and Minority Leader McCarthy:

The undersigned organizations, all committed to improving outcomes for individuals with sickle cell disease (SCD), seek your leadership in including in any end-of-year legislative package the Sickle Cell Disease Comprehensive Care Act (S. 3389/ H.R. 6216) introduced by Senators Cory Booker and Tim Scott and Representatives Danny Davis and Michael Burgess. Our organizations strongly support the bill and believe it outlines important steps toward addressing the needs of the SCD community by authorizing the Centers for Medicare and Medicaid Services (CMS) to develop a demonstration program for Medicaid beneficiaries to improve access to comprehensive outpatient care for individuals with SCD.

We remain deeply concerned that those living with SCD have been impacted disproportionately by COVID-19 and continue to lack access to quality, state-of-the-art outpatient and preventive care for their disease. SCD is an inherited blood disorder that affects an estimated 100,000 Americans, primarily African Americans and Hispanics. SCD complications include severe pain, stroke, acute chest syndrome (a condition that lowers the level of oxygen in the blood), organ damage, and in some cases premature death.

Sadly, many individuals living with SCD, especially young adults, are not able to access the care of specialists or primary care physicians that understand the disease and have the resources to effectively treat those affected. Preventive care starts with the development of a treatment plan and can include transfusions, lab tests, radiographic studies, and vaccines, which are critically needed to prevent infection or strokes, and to manage severe pain, in addition to needed treatment for COVID-related illness. We worry that there are many individuals with SCD at home living in severe pain and worsening heart, lung, and renal disease.

An organized approach to primary and preventive care for individuals with SCD is desperately needed to improve the health and quality of life for this population. The Medicaid demonstration program proposed in the bill would provide the essential focus needed on specialized and primary care in appropriate outpatient settings. With the recent publication of clinical practice guidelines in SCD and approvals of new treatments for SCD and more in the pipeline, there is no better time than now to improve the SCD community’s access to state-of-the-art care.

The 117th Congress is the time to initiate this program. We need your leadership to move the legislation forward and improve care for people with SCD. Our organizations stand ready to support you and thank you again for your efforts to improve the lives of individuals with this debilitating disease.

Agios Pharmaceuticals
American Academy of Neurology
American College of Emergency Physicians
American College of Obstetricians and Gynecologists
American Psychological Association Services, Inc.
American Public Health Association
American Red Cross
American Society for Clinical Pathology
American Society for Reproductive Medicine
American Society for Transplantation and Cellular Therapy
American Society of Hematology
American Society of Pediatric Hematology/Oncology
American Thrombosis and Hemostasis Network
America’s Blood Centers
Association of Maternal & Child Health Programs
Association of Pediatric Hematology/Oncology Nurses
Association of Public Health Laboratories
Axis Advocacy
Beam Therapeutics
bluebird bio
Cayenne Wellness Center
Cerus Corporation
CSL Behring
Foundation for Women & Girls with Blood Disorders
Functional Fluidics
Graphite Bio
International Alliance for Pediatric Stroke
International Association of Sickle Cell Nurses and Professional Associates
Lifespan Comprehensive Sickle Cell Center
Martin Center Sickle Cell Initiative
Medunik USA
National Black Nurses Association
National Institute for Children’s Health Quality
National Marrow Donor Program/ Be The Match
National Medical Association
Novartis Pharmaceutical Corporation, USA
Pediatric Hematology Sickle Cell Program at University of Illinois at Chicago
Pediatric Hospital Sickle Cell Disease Collaborative
Sick Cells
Sickle Cell 101
Sickle Cell Adult Provider Network
Sickle Cell Association of Texas Marc Thomas Foundation
Sickle Cell Consortium
Sickle Cell Disease Association of America, Inc.
Sickle Cell Disease Association of America, Michigan Chapter
Sickle Cell Disease Association of Texas, Marc Thomas Foundation
Sickle Cell Transplant Advocacy & Research Alliance
South Carolina Children’s Hospital Collaborative

cc. Chairmen Wyden and Pallone, Ranking Members Crapo and McMorris Rodgers, Senators Booker and Scott and Representatives Davis and Burgess

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