Imagine you suffer from a rare disease that subjects you to horrific chronic pain, high rates of stroke and infection, vision problems, and a life expectancy cut short by two to three decades. On top of these devastating physical effects, you also face significant barriers to quality care.
Unfortunately, this is the reality for far too many of the 100,000 Americans diagnosed with sickle cell disease (SCD), including over 4,000 people living here in New Jersey.
In fact, New Jersey is in the top 10 states in the nation with the highest prevalence of SCD. These patients are primarily in the African American community. One in 13 African Americans carry the sickle cell trait and 1 in 365 are born with the disease—more than any other ethnic group in the U.S.
For the 100 years since sickle cell discovery, treatment options for patients have been extremely limited. There are only a handful of FDA-approved treatments available and no known cure.
Sickle cell receives substantially less research funding, data collection, and pharmaceutical investment than diseases like ALS or cystic fibrosis. Cystic fibrosis, which affects primarily white patients, has a population less than half the size of sickle cell, yet it gets nearly 400 times the private sector support and more than three times the federal funding.
Sickle cell patients deserve just as much care and attention as anyone else battling a chronic disease like ALS or cystic fibrosis.
There is also a severe shortage of physicians adequately trained to treat these patients, so many face prejudice at the hospital. Some physicians even doubt the severity of their pain or don’t believe they even need pain medication.
The CDC Foundation reports that, on average, sickle cell patients experience longer wait times to see a doctor or get medication when visiting the emergency department, even though they have the highest rate of returning to the hospital within a month of being discharged.
In an effort to better support residents who are living with SCD and position New Jersey to participate in scientific advances and new therapies for patients, I proudly sponsor legislation A4052 that would establish a sickle cell center pilot program housed at federally-qualified healthcare centers (FQHCs) in Trenton, Newark, Plainfield, Camden, Jersey City, and Paterson.
This sickle cell center pilot program would create a robust and well-sourced regional system of specialty care units at which patients would have access to comprehensive and coordinated team-based medical, behavioral health, mental health, social support, and monitoring services.
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.
Significant progress has been made in recent years with the approval of disease-modifying therapies as well as the development of a promising pipeline of treatments, including one-time cell and gene therapies that could potentially cure SCD and free patients from their suffering. Now is the time to double down on our efforts to eliminate barriers to care.
Many of these new therapies are in the final stages of clinical trials and will be hitting the market in just a few years. We need to do our work now to ensure that every patient can access these new treatments on day one of their FDA approval.
Considering more than 40% of Americans with sickle cell rely on Medicaid for treatment coverage, we should start by reevaluating our state’s Medicaid approach to SCD to ensure adequate coverage.
Most states are falling short of adequately treating sickle cell through Medicaid, whether they’re not updating treatment plans enough, not collecting data, or not making financial investments in treatment.
Updating and examining our coverage Medicaid policies before these ground-breaking therapies are available will ensure New Jersey is leading the nation in removing barriers to care for SCD patients and finally giving them the attention they deserve.
Assemblywoman Verlina Reynolds-Jackson represents the 15th Legislative District and serves as the Assembly Majority Constituent Outreach Chair.
This op-ed was originally published by NJ.com on December 18, 2022: https://www.nj.com/opinion/2022/12/lets-change-how-we-treat-sickle-cell-disease-in-new-jersey-opinion.html.