“It’s Time For All of Us to Start Thinking Differently About Sickle Cell,” Says UBA President Eric Dobson
TRENTON – Today, the New Jersey Senate unanimously approved legislation that appropriates $10.2 million for a three-year sickle cell disease (SCD) pilot program. The legislation, which was unanimously passed by the New Jersey Assembly in June, is now headed to Governor Murphy’s desk.
SCD is an inherited blood disorder that affects 100,000 patients in the U.S., the majority of whom are Black. It can cause intense pain, damage organs, and dramatically shorten life, yet patients have long faced discrimination in medical settings.
For more than 100 years since it was first characterized in medical literature, people living with SCD have been left with minimal treatment options, while facing the many pervasive effects of inequity across the health care system.
“From hospital costs and lost time, to issues of medical bias, sickle cell can have a substantial impact on quality of life. It’s time for all of us to start thinking differently about sickle cell and its underlying cause—as individuals and as a society,” said Rev. Eric Dobson, President of the United Black Agenda.
“Despite being one of the first genetic diseases to be identified, sickle cell has been stigmatized and marginalized, while research has been underfunded,” added Dobson. “New Jerseyans with sickle cell aren’t receiving consistent care in emergency departments for many reasons — including stigma, racial bias, overcrowding, and healthcare providers lacking familiarity with guidelines for treating the disease. This legislation is an important step toward improving the level of care and the quality of life for New Jerseyans with sickle cell disease and their families.”
Under the bill, the Department of Health, in consultation with the Department of Human Services, would establish a three-year SCD pilot program. The department will select federally qualified health centers for participation in the pilot program on a competitive basis, based on criteria to be established by the Commissioner of Health. First priority would be given to federally qualified health centers located in Jersey City, Newark, Paterson, Plainfield, Trenton, and Camden. Subject to the availability of funds, federally qualified health centers in other municipalities may also qualify to receive funding if they demonstrate a patient population in that geographic area that is in need of SCD care.
The purpose of the pilot program is to:
- link outpatient SCD care to SCD care in inpatient health care settings and other similar settings, which may include telehealth services;
- provide coordinated, comprehensive, team-based medical, behavioral health, mental health, social support, and other services under the supervision of health care professionals who have expertise in treating individuals with SCD;
- foster outreach to individuals and families dealing with SCD, as well as providers of medical, nursing, and social services who serve and treat people with SCD;
- promote SCD education and awareness;
- develop initiatives to build a statewide medical workforce of clinicians who are knowledgeable about the diagnosis and treatment of SCD; and
- establish practices for the collection of in-state data on SCD to monitor incidence, prevalence, demographics, morbidity, health care utilization, and costs.
