Opinion: Sickle Cell Disease fight needs passage of federal bills

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 the disease.

Urging your representatives in Congress now to support the Sickle Cell Care Expansion Act, the bipartisan Sickle Cell Disease Comprehensive Care Act and the Sickle Cell Disease Treatment Centers Act of 2022 will align smart policies and investments by providing substantially more health care to those afflicted with this 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.

There is a serious need for research and treatment of this rare genetic blood disorder afflicting 1 in 365 Black newborns. For years, Congress and presidential administrations have failed to adequately address SCD. Research suggests that more than 5,000 Californians 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 other diseases.

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 Some federal policies are outdated and need to be modernized, others need to be better resourced, and in some cases, the federal government lacks needed policies for Medicaid and public health.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.

Such challenges are sadly exacerbated further by the reality of the discrimination and indifference that exists in our health care system. Despite progress, 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. We need Congress and the administration to pick up the playbook of policies outlined by the National Academies of Sciences, Engineering and Medicine in their landmark 2020 report on SCD. The report outlines dozens of concrete policies that policymakers can adopt to immediately improve access to care and treatment for SCD patients.

Passing the three acts pending in Congress would be a strong start to addressing SCD. But there is so much more that needs to be done. Working with policymakers, we can eventually reach a day where SCD receives the attention it needs.

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.

Dr. Brett Giroir is a pediatrician and former assistant secretary of health at the U.S. Department of Health and Human Services. Regina Hartfield is president and CEO of the Sickle Cell Disease Association of America.