Drawing on her years of experience in the medical field, Councilmember Mercedes Narcisse has put forth a bill that would report on the city’s rate of sickle cell disease and trait among students, which now awaits the mayor’s signature.
Sickle cell is a genetic blood disease that disrupts how red blood cells deliver oxygen throughout the body, and disproportionately affects people of African descent. It can lead to stroke, eye problems, infections, and chronic pain.
“As a former triage ER nurse, I know that you first must gather information prior to treating an issue,” Narcisse said in a statement. “The passage of this bill represents a significant step forward in ensuring that our schools are equipped to support every student’s health needs effectively. By mandating comprehensive reports on the prevalence of sickle cell disease, we can use this information to make informed decisions that can lead to better health outcomes for our students.”
The bill, Introduction 341-A, would require the Department of Education (DOE) to provide an annual report to the City Council on the total number of students diagnosed with sickle cell disease or sickle cell trait. Such reporting is particularly significant for DOE schools, as nearly 65% of DOE students are Black or Brown, and sickle cell disease and trait is most prevalent in people of African ancestry, said the City Council.
Narcisse previously sponsored an important bill also centered around rooting out sickle cell disease last year. Introduction 968-B requires the Department of Health and Mental Hygiene (DOHMH) to create culturally sensitive guidance for the city’s medical professionals and the public about the sickle cell trait and disease, often found through genetic screening and pain management of the condition.
Supporting efforts to find a cure for the disease has also increased in priority at the White House.
Back in January, President Joe Biden announced an initiative to increase access to sickle cell disease treatments and experimental gene therapies through the Cell and Gene Therapy (CGT) Access Model, which is a financing model meant to help people on Medicaid. Gene therapies could be life-saving for sickle cell patients but are often a costly form of treatment that most patients can’t access because of their insurance. According to the U.S. Department of Health and Human Services (HHS), at least half of the people living with sickle cell are enrolled in Medicaid and their hospitalizations “cost the health system almost $3 billion” annually. The CGT is designed to reduce long-term health spending on state budgets and standardize access for patients in need.
There is still no universal cure for sickle cell, but this May marked the first positive development for gene therapy treatments. Kendric Cromer, a 12-year-old Black boy from Washington D.C., was the first person to undergo the gene therapy known as Lyfgenia. His insurance agreed to cover the $3.1 million procedure.
Ariama C. Long is a Report for America corps member and writes about politics for the Amsterdam News. Your donation to match our RFA grant helps keep her writing stories like this one; please consider making a tax-deductible gift of any amount today by visiting https://bit.ly/amnews1.