Few public policy issues are as personal to Americans as health care policy. To many, it is literally an issue of life or death. That’s why pending legislation addressing Sickle Cell Disease is so vital to millions of Americans who have a friend, colleague, or loved one living with Sickle Cell Disease.

Sickle Cell Disease (SCD) is an inherited blood disorder that primarily impacts Black Americans, followed by Latino Americans and to a lesser extent, white Americans. Today, we are urging Congress to take long overdue action to transform the future for the 100,000 Americans living with this debilitating disease. This is not a matter of science or technology – it is only a matter of national “will.”

Congress designated September as National Sickle Cell Awareness Month to focus attention on the need for research and treatment of this rare genetic blood disorder afflicting 1 in 365 Black newborns.[1] For years, Congress and the administration have failed to adequately address SCD. More than twice as many Americans suffer from SCD than cystic fibrosis,[2] and about five times as many suffer from SCD as those with hemophilia.[3] Research suggests that more than tens of thousands of Americans have Sickle Cell Disease, though there are reasons to think the number is actually much higher. Yet the government’s investment in SCD lags far behind these and other diseases.

SCD causes a host of serious health problems, ranging from acute episodes of pain to lung problems and stroke.[4] Today, the average life expectancy for people with the most severe form of SCD is 30 years shorter than those without SCD.[5]

While outcomes for individuals with SCD are worse than their peers, the available evidence demonstrates that poor outcomes are very often not the result of the disease but attributable to challenges in our health care system exacerbated by anemic federal policy. Some federal policies are outdated and need to be modernized, others need to be better resourced, and in some cases, the federal government lacks needed policies for Medicaid and public health. As a result, individuals’ access to care varies significantly based on the state in which they live.

Soberingly, the failure of policy imagination can be seen in the gaps in outcomes for patients served by federal and state programs. According to the federal government,[6] eight in 10 adults and children with SCD on Medicaid do not receive a daily pill that can reduce pain, prevent hospitalizations and save lives. Some seven in 10 children do not receive the standard annual recommended screening to identify their risk of stroke.   

Such challenges are sadly exacerbated further by the reality of the discrimination and indifference that exists in our health care system[7]. Despite progress on this issue, this reality has for far too long contributed to historic inequities in research, funding and the attention of the policy community.

Clearly, substandard access to care is unacceptable. Federal policies should evolve so individuals and their communities are stronger. What does it take to change the status quo? We need Congress and the administration to pick up the playbook of policies outlined by the National Academies of Sciences, Engineering and Medicine (NASEM) in their landmark 2020 report on SCD. The report outlines dozens of concrete policies that policymakers can adopt to immediately and concretely improve access to care and treatment for SCD patients. Congress has three opportunities right now to address SCD.

The bipartisan Sickle Cell Care Expansion Act (H.R.7177/ S.4425) authorizes a scholarship and loan repayment program to incentivize physicians to enter the field of sickle cell research and treatment. The bill would also award grants ensuring that health and community-based organizations can increase education, literacy and community services that improve the care and treatments that patients receive.

The bipartisan Sickle Cell Disease Comprehensive Care Act (H.R. 6216/S. 3389) creates a demonstration program in up to 10 states to provide comprehensive care to Americans with SCD who are low-income or disabled and receive health coverage through a state Medicaid program.

Last month, the Sickle Cell Disease Treatment Centers Act of 2022 was introduced to establish and fund a nationwide system of treatment centers and provider and patient training and education resources. The bill will create more than 120 treatment centers and more than 100 community-based organizations to support patients. The bill will also provide for the collection and distribution of data and best practices.

Passing these bills would be a strong start to addressing SCD. But there is so much more that needs to be done.

We are working together with other members of the SCD community to hold Congress and the administration accountable to implement commonsense policies to improve access, research and treatment for individuals with SCD. Working with policymakers, we can eventually reach a day where SCD receives the attention it needs — not only in September — but every day across this nation.

The biggest obstacle individuals with SCD face may not be their disease, but rather inaction by our elected leaders. These patient warriors have waited long enough for the help they need and deserve.

Brett Giroir, M.D., is a pediatrician, a former Assistant Secretary of Health at the U.S. Department of Health and Human Services, and a former Acting Commissioner of the Food and Drug Administration. Regina Hartfield is President and CEO of the Sickle Cell Disease Association of America. Giroir and Hartfield are members of the Sickle Cell Disease Partnership, a public policy and advocacy alliance.

[1] https://www.sicklecellpartnership.org/about-sickle-cell-disease/
[2]40,000 https://www.cff.org/intro-cf/about-cystic-fibrosis#:~:text=According%20to%20the%20Cystic%20Fibrosis,with%20CF%20across%2094%20countries).
[3] 20,000 https://www.hemophiliafed.org/home/understanding-bleeding-disorders/what-is-hemophilia/hemophilia-a/#:~:text=Four%20hundred%20thousand%20people%20worldwide,it%20in%20the%20United%20States.
[4] https://www.sicklecellpartnership.org/about-sickle-cell-disease/
[5] https://www.cdcfoundation.org/sites/default/files/files/SickleCellDisease-HealthDisparities-FactSheet021618.pdf
[6] https://www.medicaid.gov/medicaid/quality-of-care/downloads/sickle-cell-disease-infographic.pdf
[7] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6186193/

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