The COVID-19 pandemic shed light on the many inequalities and barriers in our health care system. One illness that has long suffered from the impact of this basic unfairness is Sickle Cell Disease (SCD). SCD is an inherited blood disorder affecting approximately 100,000 Americans, almost all of whom are African Americans. Yet, compared to other serious diseases that impact roughly equal but primarily white population sizes, SCD has suffered from inadequate attention and resources from the medical community.
Normal, healthy blood cells are round-shaped, giving them the ability to carry oxygen through small blood vessels. For people born with SCD, their red blood cells are sticky, hard, and shaped abnormally. The cell disease can clog blood vessels and reduce oxygen flow, causing severe pain and infections, and can lead to death.
There is no cure for SCD. Stem cell and bone marrow transplants are the most effective forms of treatment, but there is a high level of risk involved. Around 1 in 1900 babies born in the U.S. are affected by SCD each year. Among African American babies, 1 in 400 have SCD, while 1 in 13 have SCD trait, which occurs when a child has inherited a sickle gene from one parent and a normal gene from the other parent. SCD trait is not as severe as SCD itself, but it can cause serious health problems in certain circumstances. No other medical condition has ever been so strongly associated with one race or the concept of race in general.
Sickle Cell Awareness month was celebrated in September, and so now is a good time to highlight a new bill I filed for the first time this session with Rep. Jon Santiago, An Act relative to sickle cell disease. It is an honor to collaborate with Representative Santiago, the only medical doctor in either the House or the Senate, and a person of color. We drafted this legislation working closely with my constituent in Cambridge, Dr. Sharl Azar, the Co-Director of the Comprehensive Sickle Cell Disease Treatment Center at MGH, a leading center in the world for addressing SCD. The bill creates a special legislative commission to address the issue of SCD in the Commonwealth. The commission’s goal will be to assess the racial health disparities related to SCD; its impact on communities; and determine what resources are needed to address it, ultimately submitting a report to the Legislature for next steps. The commission also will be responsible for overseeing three grant programs with the following goals: to support healthcare institutions in acquiring resources to ensure equitable care across the Commonwealth; to fund research and development of new treatments and technologies to treat SCD; and to invest in the impacted community by providing education, training, housing and access to programs for individuals and families most impacted by SCD.
I often note that my work is done in close collaboration with the many accomplished people in our community. That is particularly true in this case because it all started with a meeting with Dr. Azar, and I want to thank him for his tremendous work in helping us advance this idea.
Here are two resources where you can learn more information about SCD and what steps are being taken to improve treatment and other initiatives:
NIH’s Sickle Cell Disease site: https://www.nhlbi.nih.gov/health-topics/sickle-cell-disease
The Sickle Cell Disease Association’s site: https://www.sicklecelldisease.org/