Andrea Custis

What if I told you about a disease that was discovered over a century ago, but still does not garner enough public funding or recognition from the medical community? Now, what if I told you that this genetic disease causes frequent episodes of intense and excruciating pain, oftentimes damaging organs and bones, in young children — sometimes so much that they cannot go to school or live a normal life?

Would you have known I was speaking about sickle cell disease? If not, you are not alone. Research on sickle cell disease (SCD) is underfunded. This is due, in part, to structural racism within our health care systems. Recently, though, the National Black Caucus of State Legislators (NBCSL) has tried to rectify this history and has adopted a resolution asking federal and state lawmakers to address this disparity and to make sickle cell treatment and access a priority.

Sickle cell disease, a rare blood disorder that can cause strokes, chronic pain and vital organ damage, affects over 100,000 Americans and 200,000 babies, most of whom are African American. According to the Centers for Disease Control and Prevention, SCD occurs among about 1 out of every 365 Black or African-American births.

In Philadelphia, there are about 3,000 individuals with sickle cell disease. In Philadelphia, we are lucky to have the Comprehensive Sickle Cell Center at the Children’s Hospital of Philadelphia, one of the largest sickle cell treatment centers for children in the U.S. However, not all children have access to such outstanding facilities.

There may be no genetic diseases whose health care and outcomes are more affected by our society’s racism than sickle cell disease. The NBCSL’s resolution addressed systemic barriers to treatment that African-American patients face. Although SCD was first described more than 100 years ago, only four medications are approved for SCD, while 15 are approved for cystic fibrosis. Cystic fibrosis is a similar inherited disease to SCD that causes extreme pain, but it receives more federal and foundation funding. This is despite SCD being three times more prevalent than cystic fibrosis. This funding disparity has a direct impact on the daily life of so many individuals who suffer from SCD.

Another glaring example of the racist barriers that SCD patients face is the stigma of “drug-seeking” when they try to access mediation in a hospital. This is unacceptable and leads many individuals not to trust medical institutions, therefore continuing to suffer alone. Is it a coincidence that a disease that disproportionately affects Black communities has less available treatment medications and stigma? Cystic fibrosis patients have significantly more prescription medications available to them and yet they are not stigmatized as “drug seekers.”

The NBCSL’s resolution will increase understanding around the lack of disease investment for sickle cell patients, including issues of health insurance coverage such as gaps in our Medicaid system. The recommended plan of action in the resolution urges federal and state Medicaid programs to conduct annual reviews to determine if covered medications and treatments are meeting the needs of the sickle cell community. Currently, more than 40% of sickle cell disease patients are covered by Medicaid but have reduced access to treatments due to inconsistencies in state-level coverage.

This policy would put patients first and ensure that they have equitable access to treatment while reducing the barriers that disproportionately affect the majority-Black sickle cell population. While much awareness is being raised around other rare diseases, and rightfully so, we cannot afford to leave those in our communities who are suffering from this disease behind. Federal and state leaders have the ability to implement policy changes that will help so many people suffering from this disease. I applaud and support the NBCSL taking the first step with this resolution to invest in public health in our communities.

Andrea Custis, is the President and CEO of the Urban League of Philadelphia.