HARRISBURG, Sept. 21 – State Reps. Stephen Kinsey and Pennsylvania Legislative Black Caucus Chair Donna Bullock, both D-Phila., have introduced a resolution to promote greater access and research for sickle cell disease.
Sickle cell disease is an inherited blood disorder that predominately affects African Americans. The disease produces abnormal red blood cell shapes (i.e. crescent or “sickle”) that cause red blood cells to become hard, sticky, and die at an earlier rate than normal red blood cells. This can lead to serious complications among individuals, such as anemia, infections, strokes and more.
There have been new therapies to address sickle cell that have greatly improved in recent years, but Kinsey said he wants it to be more accessible to low-income individuals.
“We need to ensure that folks with sickle cell have access to address their medical needs, and it starts with having them covered by Medicaid and Medicare programs,” Kinsey said. “This disease has affected many Black folks for far too long, and we must make sure that they do not face any barriers when it comes to addressing this disease.”
This resolution would call on federal policymakers to ensure that individuals have access to all medications and forms of treatment, as well as ensure that any new therapies are covered by Medicare and Medicaid programs.
Additionally, this resolution would designate the state Department of Health to conduct a comprehensive and coordinated data collection effort to better understand and quantify the score and impact of sickle cell disease on patients, communities, states and across the nation.
“Pennsylvania Legislative Black Caucus is committed to raising awareness about sickle cell disease and working with patients and advocates to eliminate barriers to research and treatment,” Bullock said. “While there are new advancements in treatment, if patients can’t afford these treatments, what is the point? Included in this resolution is comprehensive data collection that will help everyone understand the true, every day impact this terrible disease has on patients living with it.”
