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Commentary Health Care

Maya Rockeymoore Cummings: The suffering of sickle cell disease

Image by David Carillet/stock.adobe.com.

By Maya Rockeymoore Cummings

The writer is the founder, president and CEO of Global Policy Solutions and a distinguished presidential research fellow at Johns Hopkins University Bloomberg School of Public Health. 

Early in my life, I saw first-hand the terrible impact sickle cell disease had on my loved ones. This disease causes chronic, severe pain and lowers life expectancy by up to three decades. Those with it also very often suffer from vision problems, a high risk of stroke, kidney disease, frequent infections, and anemia.

Today there are too few treatments for sickle cell, but new gene therapies in clinical trials offer the promise of a cure someday soon. However, they will not end suffering unless policies are put in place to ensure patients can access these therapies as soon as they are available.

My family’s history of sickle cell has affected me and my loved ones deeply. My great aunt and uncle on my father’s side both had the sickle cell trait and my uncle’s kids had sickle cell disease. One of my cousins, who was only in her 30s, collapsed and died while being discharged from the hospital following a pain crisis. Although my great aunt only had the trait for sickle cell, she too suffered from pain crises throughout my childhood.

Pain flare-ups like my great aunt and my great uncle’s children endured often prevent those with sickle cell disease from working, participating in their communities, or attending school. This unpredictability and the threat of long-term hospitalization makes it especially difficult to maintain a job.

Many patients with sickle cell disease end up relying on the emergency room for treatment, but too few doctors fully understand the condition and patients often feel their pain and symptoms are not taken seriously. Health care providers commonly perceive sickle cell patients as “drug-seekers” and make them wait longer to see a doctor or get pain medication in the emergency department, according to the CDC Foundation. Sickle cell patients experiencing a pain crisis should not face skepticism and fear when they go to an ER; they should be treated compassionately by well trained personnel.

Over the last century since sickle cell disease was discovered, there has been too little attention, research funding, or pharmaceutical investment in finding treatments or medicines. As a result, there are only a few drug treatments available, and there simply are not a sufficient number of health care professionals trained to care for sickle cell patients.

Sickle cell disproportionately affects African Americans and Hispanic Americans nationally, and Maryland has a higher rate of sickle cell than the national average. Across the U.S., 1 of every 365 African-American babies is born with the disease, while in Maryland it is a higher rate, 1 of every 265. Nationally, 1 out of every 13 African-American babies carry the sickle cell trait.

Many have heard Black parents describe “the talk” about how to behave when interacting with the police. For families like mine with sickle cell in their genes, we also have another kind of “talk.” In this version, however, parents tell children that before we decide to have a serious romantic relationship, let alone get married or have children, they must find out our partner’s own family medical history related to sickle cell.

Having seen the disease first-hand, I fully understood my parents’ warning and this responsibility. But just imagine having to make a choice not to have children with someone you love, or leave the relationship entirely, because of the fear that this painful disease could affect your children and cut their life short.

Thankfully, there are new sickle cell treatments on the horizon and in clinical trials which hold the promise of a cure for adults. These new gene-based treatments could change the lives of those with sickle cell and their families.

Once these new treatments become available, there remains the major hurdle of sickle cell patients accessing them. Nearly half of sickle cell patients rely on Medicaid. This presents a challenge for their access to these new treatments because individual state programs determine what Medicaid will cover, so the treatment options vary depending on where a patient lives. It makes it harder if not impossible for those with sickle cell to access these new treatments as soon as they become available.

Unless it is fixed soon, this inability to access curative treatment will only compound the systemic inequities and barriers to care that so many sickle cell patients face. It is time for Maryland leaders to step up and help sickle cell disease patients suffering in our state. We need more awareness, more education, and policy changes to ensure patients with sickle cell are able to access these new breakthrough treatments as soon as they are available.