Two new treatments have emerged for sickle cell disease. One curative treatment is a bone marrow transplant, and the second treatment is a gene-based therapy undergoing clinical trials. While this is much-welcomed news for patients battling the disease, the medical profession still needs to address sickle cell disease’s socioeconomic and racial health care inequities.
Sickle cell disease is a genetic disease that alters and lowers red blood cell count. Less mentioned is that of the 100,000 Americans who have sickle cell disease, 90 percent of them are Black, and the disease increases the risk of homelessness by creating financial instability and limiting job opportunities.
Over 50 percent of homeless families are Black. Child poverty has increased across the United States since the start of the pandemic. Black and Latino children have been hit especially hard – a double-edged sword considering that children with sickle cell disease begin to experience unstable housing arrangements during childhood while trying to manage their illness. They often depend on financial guidance and support from their families.
Having spent much of their youth inside a hospital with challenging family and social situations, most people who grew up with sickle cell disease didn’t have access to social resources and dynamics that adolescents need as they transition to independent adults. Lacking a well-socialized adolescent experience makes financial planning and career planning especially difficult.
Even when employed, keeping a job can be difficult for those with sickle cell disease. The disease can cause silent strokes that impair cognition, making it more difficult for someone with the disease to learn, memorize, and quickly process information — skills that are critical for gaining and maintaining employment. Furthermore, cognitive impairments make it harder to achieve progress in education which opens the door to long-term and financially stable job opportunities. These issues make it more difficult to navigate higher education, which is already plagued by racial disparities and structural inequalities.
Once young people with sickle cell disease become adults, specialized physicians and comprehensive sickle cell centers are in very short supply. In 2008, there were only ten federally funded sickle cell centers, none of which remain open today. The currently existing comprehensive centers for sickle cell disease depend on institutional support and low reimbursement for clinical services, but access to the few existing treatment centers remains limited for patients in need of high-level care. Additionally, patients with sickle cell are more likely to have Medicaid coverage, which is associated with decreased access to high-quality care and more emergency department use.
Medicaid expansion could help improve racial disparities for people with sickle cell disease, but a considerable number of patients with the disease reside in Southern states where Medicaid was not expanded under the Affordable Care Act. While 66 percent of hospital stays for sickle cell disease were paid by Medicaid, doctors in the United States are less likely to accept Medicaid and 34 percent of enrollees are Black.
Across America, sickle cell disease costs $1.5 billion in lost productivity every year, equally $15,000 in lost wages per person annually, a financial burden too heavy to bear for patients already at a greater risk of financial instability and homelessness – and the current covid economy offers a harrowing reminder of how race and homelessness intersect with unemployment, a leading cause of homelessness. When people have to battle sickle cell disease – a disease that already causes premature death – alongside homelessness, their mortality risk increases up to 4 times higher than populations with stable housing.
To address racial and socioeconomic disparities related to sickle cell disease, a better organized medical system is needed to support research that improves treatment options and assists patients with financial stability — and palliative care will be key to achieving this outcome.
Palliative care providers shift the sickle cell management processes from a short-term acute care model to a chronic care model that provides continuous, long-term care and various outpatient needs, addressing care goals early in the sickle cell disease process that prevents financial barriers and homelessness to help people with sickle cell disease live a higher quality of life.
Additionally, palliative care providers are uniquely skilled to serve patients with sickle cell disease, both while hospitalized and out of hospital care. Patients with sickle cell disease can look to palliative care providers for help finding resources and job assistance to get out of the throes of homelessness.
Through palliative care, patients with sickle cell disease can be assisted across their entire life span to effectively manage pain, cognitive issues, depression and anxiety. Once these symptoms are better managed, people with sickle cell disease can focus on other aspects of life that create long-term job commitment and a deeper sense of financial well-being.
Ramandeep Kaur is a palliative medicine physician.
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