This op-ed article was originally published by NJ Spotlight News, and written by Mafudia Suaray, on November 29, 2022. Source Link at bottom of post.
Systemic racial biases and health care flaws keep patients from receiving care.
As a young child in Sierra Leone, I remember being awakened by the wailing of my aunt as she begged my cousin and me to place a packed suitcase on her chest and sit on top of it. I would later learn that she was in the throes of a sickle cell pain crisis and was desperate for some reprieve from her agony — even if it meant inducing a different form of pain to distract from her unbearable suffering.
Sickle cell disease is a global, national and local-level health problem that impacts millions around the world, including 100,000 people in the U.S. and 6,000 New Jerseyans. Thousands more carry the sickle cell trait, meaning they risk passing on the gene to their future children. Sickle cell is a genetic disorder that causes a person’s red blood cells to have an abnormal sickle shape that do not function normally and die much faster than normal red blood cells. It causes recurrent debilitating pain, damage to vital organs and decreases life expectancy by up to 30 years below the average American.
I became a doctor in part because I wanted to help people with sickle cell disease like my aunt. If not a cure, then surely modern medicine could offer better management techniques. But in my medical training, I was taught well how to describe and diagnose the disease, and little on how to treat or help manage its symptoms. When I started clinical practice and met my first adult patients with sickle cell disease, I quickly realized that there was a lot missing from my education on the disease and its sufferers. It is a disease that has been largely ignored in the medical community and at all levels of government.
Sickle cell disease patients have been put on the back burner since the disease’s discovery over a century ago, which means that drugs and therapies are extremely limited and hard to access. The overwhelming majority of patients in the U.S. are African American, some are Hispanic and very few are white, which subjects them to the systemic racial biases in our health care system. Roughly 1 in 365 African Americans is born with sickle cell and 1 in 13 are carriers of the sickle cell trait.
This neglect is most obvious in comparison to other rare diseases. Sickle cell disease has received substantially less research funding, data collection and pharmaceutical investment than diseases like ALS or cystic fibrosis. Cystic fibrosis 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.
Not Enough Doctors or Treatment
Lack of attention and research funding creates a domino effect that impacts all aspects of health care for sickle cell patients. There are only a handful of available drugs to treat the disease and very few doctors trained, willing and able to confidently care for these patients. Patients are subjected to longer wait times in the emergency room while in excruciating pain, a huge shortage of specialist doctors and providers who doubt their pain.
The gap in national attention for sickle cell also means that many state Medicaid programs, including in New Jersey, are not taking measures to adequately meet the needs of sickle cell patients. Medicaid coverage of drugs can vary by state and not all states are regularly reviewing and updating their covered treatment options. This has made life even harder for the more than 40% of Americans with sickle cell who rely on Medicaid for coverage as their only health insurance option. Most do not live long enough to age into the Medicare system while others often struggle to hold a full-time job and access private insurance because of the debilitating symptoms of their disease.
Recently there have been pharmaceutical breakthroughs with cell and gene therapy that offer a potentially curative treatment that could completely change the lives of patients with sickle cell disease. These promising new developments could produce a cure in just a few years, giving patients an end to their suffering. However, before these new therapies hit the market, New Jersey and federal policymakers, as well as the medical community, have serious work to do to ensure better access and care.
First and foremost, we need to invest adequate attention and resources in sickle cell research and equitable treatment accessibility. We also must reevaluate our Medicaid approach: We need to cover proper drugs and therapies for all patients, continuously update and examine our treatment plans and keep up-to-date data records on sickle cell.
At the same time, we should convene an advisory task force of state and federal lawmakers, sickle cell patients, caregivers, physicians, pharmaceutical industry leaders and community advocates to help break down these barriers to health care access. The sickle cell community deserves a seat at the table in the decisions that will impact their futures. And finally, for those of us in the medical community, we need to continue to change the narrative of sickle cell disease care in our practices and institutions.
Sickle cell patients have spent far too long suffering in silence and neglect. With a coordinated federal and state approach, let’s finally ensure sickle cell patients can access the comprehensive care they need and deserve.
Mafudia Suaray, MD MPH FAAFP, is an associate professor in the Department of Family Medicine and Community Health at Rutgers Robert Wood Johnson Medical School.
