Aflac general counsel: Georgia lawmakers took a crucial step forward on sickle cell disease – but there’s more work to be done

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 t