Ensuring Better Care and Health Outcomes for Individuals with Sickle Cell Disease
The Sickle Cell Treatment Act (SCTA) provides an important opportunity to advocate for implementing public policies that will lead to better care and health outcomes for individuals living with sickle cell disease (SCD). In 2003, Senators Jim Talent (R-MO) and Charles Schumer (D-NY) and Representatives Danny Davis (D-IL) and Richard Burr (R-NC) garnered bipartisan support for the SCTA, which was signed into law by President George W. Bush in 2004.
Approximately 90,000 to 100,000 individuals in the United States have SCD. The disease, an inherited disorder resulting in the production of abnormally shaped red blood cells, can produce complications including anemia, infection, pain, stroke and vision loss. SCD is much more common among Black and Hispanic Americans than among other demographic groups, occurring in 1 in 500 Black or African-American births and 1 in 36,000 Hispanic-American births, making treatment and education about SCD an important health equity issue.
While there is no cure for SCD, the past few decades have seen significant improvements to life expectancy for individuals living with SCD. Individuals can now live into their forties or fifties, if not longer, and have productive lives if they receive proper care. Health outcomes have improved, in part due to more effective use of treatment, monitoring, preventive care and supportive services. However, systemic tracking of care processes and outcomes does not occur, nor are there mechanisms to ensure adoption of treatment guidelines. Care for adults with SCD is particularly fragmented.
Opportunity for Advocacy The SCTA provides an important opportunity to work with federal and state policymakers to implement public policies that will ultimately lead to improved health outcomes for those living with SCD. For too long, the SCTA has been underfunded. With attention on state Medicaid programs as they find ways to serve populations more effectively and make the most of their budgets, now is a great time to urge states to explore the potential benefits of taking up these options. Specifically, the first two provisions—the new optional Medicaid SCD benefit and Medicaid administrative reimbursement for SCD education initiatives—require action by states to be adopted. To date, both are underutilized by state Medicaid programs. The third provision, establishing the Sickle Cell Disease Treatment Demonstration Program, has been implemented but could still benefit from sustained federal advocacy to ensure funding for the program is maintained and expanded over the coming years. Guidance on undertaking advocacy on these issues can be found in the policy brief on the SCTA produced by Community Catalyst with the SCDAA.
The SCTA includes three major provisions.
Provision 1: New Optional Medicaid SCD Benefit
The new Medicaid benefit created by the SCTA clarifies that states can cover preventative services related to SCD through Medicaid. Although states generally could have covered these services prior to the SCTA’s enactment, the importance of the SCTA in this regard is that it both made it absolutely clear these services can be covered by state Medicaid programs and gives states additional flexibility around the services.
Provision 2: Medicaid Reimbursement for Education and Other Services Related to Prevention and Treatment
The SCTA clarifies that if public education campaigns are specifically targeted around individuals who have SCD or carry the sickle cell trait, the non-medical campaign expenditures—including administrative expenses—can be reimbursed by the federal government under the 50 percent federal matching rate. Activities considered related to public education campaigns include services, such as genetic counseling, to find and educate individuals with SCD who are likely to be Medicaid eligible and education efforts targeted at these individuals related to prevention of SCD complications.
Provision 3: Creation of a National Coordinating Center: The Sickle Cell Disease Treatment Demonstration Program
The SCTA authorizes the Sickle Cell Disease Treatment Demonstration Program, which aims to increase access to SCD treatment, ensure consumers and providers are better educated about SCD, and improve SCD service coordination. To further these goals, the SCTA provides for the United States Department of Health and Human Services Health Resources and Services Administration (HRSA) to make grants to up to 40 entities each federal fiscal year (FFY) in which the program is conducted to aid in the development and creation of systems to improve SCD prevention and treatment.
In FFY 2010, HRSA also awarded a grant to National Initiative for Children’s Healthcare Quality (NICHQ), in conjunction with Boston Medical Center and the Sickle Cell Disease Association of America (SCDAA), to serve as the National Coordinating Center (NCC) for the program. The NCC collects, coordinates, monitors, and distributes data, best practices, and findings from the other program grantees. The NCC is also charged with the development of a model protocol for eligible entities and the development of educational materials on the prevention and treatment of SCD.
— Kate Lewandowski, Senior Policy Analyst