New York State Must Address the Crisis That is Sickle Cell Disease
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By Assemblymember Nathalia Fernandez
As a state, we must come together to address the crisis that is sickle cell disease. There are 10,000 members of our communities that have been left to struggle through this condition with little attention and care, and it is time for us to correct this injustice.
Sickle cell is devastating to patients and their families. It causes chronic and unpredictable pain episodes, high rates of stroke and kidney disease and a wealth of other health complications like vision problems and anemia. Worst of all, it dramatically shortens the life expectancy of a patient. The median age of death for those with sickle cell is just 43 years, according to the Centers for Disease Control and Prevention’s National Vital Statistics System.
Presently, treatments for sickle cell disease are extremely limited but a cure is on the horizon. New medical breakthroughs in stem cell transplantation and gene therapies could be curative for adults with sickle cell, which is the most exciting news this community has seen since the first sickle cell drug hit the market in 2018.
However, we have a lot of work to do before these treatments become available to patients. We need to address the barriers to care access these patients face, or we risk new therapies remaining out of reach for thousands.
At the center of the problem is the racial bias baked into our healthcare system that impacts health outcomes for people of color. Sickle cell disease was labeled as a “Black disease” when it was first discovered in the United States in the early 20th century because on both a national level and a local level, it disproportionately impacts Black and Brown communities.
Nationally, sickle cell impacts one in every 365 African American births, one in every 16,300 Hispanic Americans, and only one in every 80,000 Caucasian births. In New York State, those numbers are one in 230, one in 2,320, and one in 41,647, respectively.
For decades, leaders across the country have pushed sickle cell to the back burner. It receives significantly less research funding and pharmaceutical investment than other orphan diseases like cystic fibrosis, a similarly life-threatening genetic disease, but with the majority of white patients. Cystic fibrosis is much rarer but gets almost four times the National Institutes of Health (NIH) funding and a whopping 400 times the support from the private sector.
The lack of funding and attention for sickle cell means there are few available care options and patients are constantly misunderstood by physicians who lack the knowledge to treat them.
The nearly 50 percent of sickle cell patients on Medicaid face even more challenges. States decide what drugs are covered by their Medicaid programs, and there are significant disparities and discrepancies in the quality of care across the country.
New York’s leaders must coordinate with federal agencies to ensure that any existing and new therapies for sickle cell are affordable and covered by our state Medicaid program.
Assemblymember Nathalia Fernandez (D-Bronx) represents the 80th Assembly District.
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