Jump to Main Content

Press Releases

ASH President Applauds Introduction of Legislation to Establish Sickle Cell Disease Medicaid Demonstration Program

New bill introduced today to improve access to comprehensive outpatient care for individuals living with sickle cell disease

(WASHINGTON, Dec. 10, 2021) — Yesterday, Representatives Danny Davis (D-IL-7) and Michael Burgess, MD (R-TX-26) introduced a bill (H.R. 6216, Sickle Cell Disease Comprehensive Care Act) to improve access to comprehensive, high-quality outpatient care for individuals living with sickle cell disease (SCD) who are enrolled in Medicaid.

SCD is the most common inherited red blood cell disorder in the United States, affecting an estimated 100,000 people. According to the Centers for Disease Control and Prevention (CDC), SCD affects one out of every 365 Black or African American births and one out of every 16,300 Hispanic American births. Individuals with SCD suffer from acute pain episodes and chronic pain and may be affected by an array of other organ complications, which can cause disability or even death.

A Centers for Medicare and Medicaid Services (CMS) report found that approximately 50% of individuals living with SCD in the United States are covered by Medicaid. Currently, many individuals living with SCD face barriers to appropriate, quality care such as a shortage of specialized providers, a lack of coordination among health care providers, and challenges relating to health insurance cost and coverage.

In recognition of these barriers to care, the new bill directs CMS to create a Medicaid demonstration program to improve access to comprehensive, high-quality outpatient care for individuals living with SCD, including clinical, mental health, and support services. The bill seeks to bolster access to primary and preventive services in participating states by providing reimbursement for care coordinators, community health workers, and other non-traditional service providers, with the goal of developing individual patient-centered care plans.

In selecting states for participation in the demonstration program, priority will be given to those states that also participate in the CDC SCD Data Collection program or precursor programs, as well as states with a high prevalence of individuals living with SCD. If passed, the legislation would establish full federal reimbursement for services and care coordination provided under the demonstration program.

For several years, the American Society of Hematology (ASH) has worked with members of Congress to educate them about the issue of lack of quality care for individuals living with SCD, as well as to advocate for Medicaid payment models such as the one introduced in the new bill. ASH has also engaged with a number of other SCD partner groups about the bill, and in September 2021 led a group of 40 SCD stakeholder groups in sending a letter to Representatives Davis and Burgess and Senators Cory Booker (D-NJ) and Tim Scott (R-SC) to encourage them to introduce it.

In response to the introduction of the legislation, ASH President Martin S. Tallman, MD, of Memorial Sloan Kettering Cancer Center issued the following statement:

“We applaud Representatives Davis and Burgess for acknowledging and addressing the problem of lack of comprehensive care for individuals living with SCD. ASH will continue to work with SCD champions in the Senate and we are hopeful that a companion bill will soon be introduced. We encourage other members of Congress to join them in this important legislation.

As hematologists, we know that individuals living with SCD lack access to comprehensive care to manage their condition to avoid serious complications. Unfortunately, this means that these individuals – who are already burdened by a devastating disease – do not receive care that is holistic and tailored to their unique needs.

ASH has long recognized and worked to address the urgent need for change in the state of care for individuals with SCD through the multi-faceted Sickle Cell Disease Initiative. This issue has taken on even greater urgency for the Society in recent years; when the pandemic emerged and data showed the disproportionate effects of COVID-19 on the African American community, we redoubled our efforts to improve care for individuals with SCD.

We are pleased to see that our ongoing advocacy efforts have helped bring this issue to the forefront for policymakers, and we commend our Congressional champions for working in a bicameral and bipartisan manner to better the lives of people with SCD.

The introduction of the new bill, which would provide an organized approach to primary and preventive care for individuals with SCD, is a crucial first step toward improving outcomes for the SCD community. We look forward to continuing to work closely with Representatives Davis and Burgess and other members of Congress to ensure that all people living with sickle cell disease get the care they need.”

ASH Sickle Cell Disease Initiative

The American Society of Hematology (ASH) (www.hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For more than 60 years, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology. ASH publishes Blood (www.bloodjournal.org), the most cited peer-reviewed publication in the field, and Blood Advances (www.bloodadvances.org), an online, peer-reviewed open-access journal.

Leah Enser, American Society of Hematology
[email protected], 202-552-4927