Measure to Help Residents with Sickle Cell Disease Find the Specialized Care They Need Closer to Home
To provide direct support to residents who are living with Sickle Cell disease, legislation introduced by Assemblywoman Verlina Reynolds-Jackson would establish a three-year Sickle Cell pilot program in Jersey City, Newark, Paterson, Plainfield, Trenton, and Camden.
“There have been medical advances in healthcare for people with Sickle Cell Disease. However, many patients continue to have difficulty accessing care and providers who specialize in SCD,” Assemblywoman Reynolds-Jackson (D-Mercer, Hunterdon). “In fact, individuals with SCD are most likely to have less access to care than those with genetic disorders such as hemophilia and cystic fibrosis.
“The Sickle Cell center pilot program will create a robust and well-sourced regional system of specialty care units linked through our urban centers. It will also position New Jersey to participate in scientific advances and new therapies for patients.”
Under the bill, the Department of Health (DOH) in consultation with the Department of Human Services is to select six federally qualified health centers to participate in the pilot program and to support the establishment of Sickle Cell treatment centers located in each of the six municipalities. The purpose is to link outpatient care to inpatient Sickle Cell care, foster outreach, promote Sickle Cell education, and develop a way to monitor Sickle Cell care in the State.
The CDC estimates that Sickle Cell Disease affects approximately 100,000 Americans. In addition, it occurs among about 1 out of every 365 Black or African-American births; among about 1 out of every 16,300 Hispanic-American births, and about 1 in 13 Black or African-American babies is born with Sickle Cell Trait (SCT). The average life expectancy for a patient with Sickle Cell Anemia remains 20 to 30 years lower than the average American.
“As a veteran practitioner of and specialist in public-health policy, it is especially clear to me that we must take extraordinary measures to address this exigent and neglected public-health crisis by operating organized systems of care for people with sickle-cell disease at trusted, community-oriented healthcare centers located in their neighborhoods — and there are perhaps no better venues in which to undertake this initiative than FQHCs. I applaud Assemblywoman Reynolds-Jackson for her leadership in this space and for her advocacy on behalf of people with sickle-cell disease and residents of urban communities,” said Barbara George Johnson, MPH, J.D., Vice President of External Affairs and Urban Policy and Executive Director, John S. Watson Institute for Urban Policy & Research at Kean University.
“As someone with Sickle Cell Anemia who has lived my entire life in New Jersey, I can attest firsthand that Sickle Cell patients face many barriers when accessing care, and are unfortunately no strangers to discrimination in treatment when medical professionals don’t take our pain and symptoms seriously,” said Brandon McKoy, Trenton Resident and Policy Expert. “Other states in the country have made strides to remove barriers to treatment for Sickle Cell, and this bill will help New Jersey do the same. Ensuring that medical centers better provide care for Sickle Cell patients so that we can lead healthier, pain-free lives is incredibly important, and I thank Assemblywoman Reynolds-Jackson for her leadership on this issue.”
According to the CDC, in someone who has SCD, the red blood cells look like a C-shaped farm tool called a “sickle” and can cause complications, including blood clots and anemia.
The bill will be referred to an Assembly committee for consideration.