Universal Coverage and Sickle Cell Disease
Last updated: September 2021
Sickle cell disease is the world’s most common heritable blood disorder and arguably one of the most racially polarizing diseases that exist today. Unfortunately, sickle cell disease is also one of the most misunderstood diseases and consequently experiences an exorbitant amount of inequity and injustice. Dr. Martin Luther King, Jr. is famously quoted for saying that “of all the forms of inequality, injustice in health care is the most shocking and inhumane.” Sickle cell patients face this inhumanity frequently, which complicates their access to care.1,2
The United States of America is the only nation in the developed world that does not provide universal health care coverage to its residents, which is to blame for poorly ranking health outcomes of Americans as a whole. Sickle cell patients are already at a disadvantage because many live at or below the federal poverty level and cannot afford health care, which forces the overutilization of emergency departments in hospitals. In addition, many people who have sickle cell disease are too poor to afford enough health coverage. 3
Accessing healthcare through work
Because of the chronic nature of their disease, they cannot hold a job long enough to gain adequate employer-based health insurance. Even if someone with sickle cell is “lucky” to stay well consistent enough to hold a job and acquire health coverage, many insurers would take the insurance premium before the Affordable Care Act was passed. Still, they would not cover their bills due to preexisting condition clauses.
Discrepancy in adult and pediatric care
To add to the several social challenges, adult sickle cell patients experience a lower quality of health care, sadly because the current generations living are the first to live well into adulthood. Providers and researchers in pediatric hematology and oncology have perfected the standard of care for children and inadvertently neglected to perfect adult care.
Pediatric patients are more likely to be covered by children’s Medicaid, which alleviates the accessibility issues that adult patients face. When patients transition to adult care, they enter what many call “the valley of the shadow of death.” The young adult transitional years are the deadliest, and the lack of access to affordable health insurance shares some blame. Sadly, many patients are uninsured, especially since many states did not participate in Medicaid expansion.
After the Affordable Care Act, countless patients cannot afford the premiums available in the marketplace. I would argue that Medicaid and Medicare should dually cover all sickle cell patients up to a certain economic ceiling and irrespective of age. This has already been implemented for those with end-stage renal disease. In addition, the patient must have worked the required amount of time for social security, already receive social security, or be the dependent or spouse of someone who meets the aforementioned qualifications. The issue for sickle cell patients is that many of them have not been able to work long enough to meet the time requirements to be eligible for social security.4
Inequity in care
Status as a sickle cell patient contributes to 25% longer wait times in the Emergency Department as compared to a general patient population; on average, a sickle cell patient has to wait four hours before they receive their first analgesic dose. In addition, the annual health care cost for an adult with sickle cell disease is greater than $30,000, most of which is attributed to emergency department overutilization and rehospitalization. Universal coverage would allow sickle cell patients to choose a medical home and be managed by a primary care provider. In our gatekeeper system, the primary care provider could refer them to a competent hematologist/oncologist who would treat their sickle cell and alleviate their usage of the emergency department. 5
The debate about universal coverage seldomly asks the moral question: “is health care a human right?” Yet, many with sickle cell disease do not have access to care and are among the estimated twenty-two thousand people who die every year from treatable diseases due to lack of health insurance. Universal coverage has been proven to ameliorate the health of a nation, and there’s no doubt that it would improve the health of those with sickle cell disease.2
Are you interested in connecting with other sickle cell warriors?