The New York City Council is considering legislation that proponents say will help more New York residents understand their risk for sickle cell disease, an inherited blood disorder that has been historically overlooked.
The City Council is expected to vote Wednesday on the bill, which aims to educate healthcare professionals on sickle cell disease detection and management, as well as understand the medical discrimination sickle cell patients have experienced and how it affects care.
“There is no cure for sickle cell right now, but the diseases and symptoms can be managed with proper care and lifestyle,” Mercedes Narcisse, council member and bill sponsor, said at a stated meeting when the bill was introduced in March. “This program will inform New Yorkers of their healthcare options and increase awareness. I believe it would be critical [to encourage] all New Yorkers, especially the health field, to talk about sickle cell disease and get prevention care.”
The bill would require the New York City health department, in consultation with New York City Health + Hospitals, to develop a sickle cell education program for healthcare professionals working in the city alongside a free genetic screening program for at-risk patients who want to conceive and test for the sickle cell trait.
These programs will address how medical “discrimination has and continues to affect patients and [provider] medical decision-making,” according to the bill. In medical decision-making, providers use test results and other evaluations, alongside a patient’s preferences, to make a diagnosis or treatment plan.
In the US, about 100,000 patients live with sickle cell disease, and one in every 365 Black babies are born with the condition, according to the CDC. The disease causes misshapen red blood cells that look similar to a sickle, and can lead to severe pain and other complications, such as acute chest syndrome and strokes.
“It is a condition which lasts a lifetime,” said John Muthu, director of the Adult Sickle Cell Program at NYC Health + Hospitals/Kings County, in an interview with News 12. “It is very pertinent for these patients from the time they are born all through their lifetime to be closely monitored by one single hematologist, and that’s very important so that nothing is really missed in the proper follow-up.”
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However, accessing proper healthcare can be a challenge for sickle cell patients due to a lack of primary care providers who specialize in the disease, a 2019 study from researchers at George Washington University, the Children’s Hospital of Philadelphia, and other institutions found. These patients are more likely to visit emergency rooms for sickle cell disease concerns, according to the study. In 2014, approximately 250,000 emergency room visits and 90,000 hospitalizations in the country were sickle cell disease related, the study found.
But sickle cell patients visiting emergency rooms for pain management may face discrimination and doctors who are unfamiliar with the condition and are reluctant to prescribe pain medication, Stat reported.
The total lifetime costs for commercially insured sickle cell patients can add up to about $1.6 million for women and $1.7 million for men under the age of 65, according to a study published earlier this year from researchers at the University of Washington and other institutions.
New York City isn’t the only jurisdiction considering sickle cell disease legislation. A bill introduced in the New York State Senate earlier this year also aims to promote screening guidelines for the disease.
Hospitals only began screening for the sickle cell gene in 2006, suggesting that there may be large numbers of people who are unaware that they are carriers, according to the state bill. The lawmakers said that education and screening for underserved populations are “necessary to protect future generations of children in the United States.”