According to the National Institute of Health, sickle cell disease (SCD) — also called sickle cell anemia — is a group of inherited disorders that cause red blood cells to be misshaped, typically crescent or “sickle”-shaped due to a gene mutation. When that happens, the cells can block blood flow to the rest of the body, causing an often painful, disruptive, and potentially fatal condition.
Despite affecting nearly 100,000 Americans, SCD is classified as an orphan disease, defined as a condition that strikes fewer than 200,000 people. As a result, it often receives less attention, but behind every diagnosis is a family navigating the harsh realities of a terrible disease. That needs to change.
In Georgia, my home state, lawmakers recently did just that. In April, they passed the Sickle Cell Disease Protection Act with strong bipartisan support, and Governor Brian Kemp signed it into law in May. This legislation requires the Georgia Department of Community Health to conduct annual reviews of Medicaid-covered sickle cell medications, treatments, and services to assess whether additional coverage is needed. Louisiana, Virginia, and Tennessee have enacted similar laws.
The federal government has also acted. The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention and Treatment Act of 2018, authorizes Department of Health and Human Services funding for research, education, screening, and treatment. But the federal law does not guarantee nationwide access, and it does not require state Medicaid programs to update their coverage to include new treatments. Georgia, Louisiana, Virginia, and Tennessee have shown what’s possible. Now, state leaders across the country should follow their lead.
Effective new treatments for SCD exist right now. As you read this, innovation is opening doors for people living with the disease. Now lawmakers, health systems, researchers, and private-sector leaders need to ensure patients can walk through those doors and turn medical breakthroughs into greater real-world outcomes.
My employer is one of Georgia’s largest publicly traded companies. As a leader in the cancer insurance space, we sponsor the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, which, in addition to the amazing work they do for childhood cancer, proudly boasts the nation’s largest pediatric SCD program. I consider this work to be a professional priority.
That said, I realize that not everyone is familiar with or has experienced SCD personally or as a witness to the disease. But as a Georgia native, I grew up in a community where SCD was something everyone knew about. Married to a physician who often treats SCD patients, to me, this is deeply personal. I know firsthand the toll SCD takes on families. I remember, more than once as a child, the traumatic experience of watching classmates suffer painful episodes that sent them to the hospital.
That’s why I’m proud of the bipartisan step our state lawmakers took. June 19 is World Sickle Cell Day, a fitting moment to set a national example in ensuring Medicaid coverage for SCD keeps pace with medical innovation. But the work isn’t over. There is much more that can be done to alleviate the impact this disease, typically diagnosed in babies, has on our most vulnerable people.
Across the U.S., we need to expand access to screening programs for newborns and potential carriers. We need more public education about sickle cell disease, including information on the difference people can make by registering to donate bone marrow, something my company has also prioritized through annual bone marrow registration opportunities with the NMDP. We must strengthen the public-private partnerships that help federal, state, and local agencies, healthcare organizations, universities and private companies close persistent gaps in research, treatment, and funding. SCD may be considered an orphan condition, but we can’t forget about the 100,000 Americans and millions of children and adults around the globe living with this disease.
Almost 90 years ago, the fight against polio inspired schoolchildren to send handfuls of coins to the White House – and the March of Dimes helped defeat polio. In 1967, the World Health Organization resolved to eradicate smallpox – and with the help of thousands of volunteers, it succeeded within a decade. More recently, society mobilized against a crippling pandemic.
The scientists who discovered these treatments and cures weren’t alone: the public – and public sectors – backed them up. Today, we have the medical advancements to improve the lives of the 100,000 Americans with SCD and those who may come after them before a final cure is found. What we need now is the same commitment to ensuring access. Let this be the generation that puts the suffering of SCD in the history books where it belongs.
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