Georgia sickle cell law puts Medicaid coverage under annual review
A new Georgia law requires yearly Medicaid reviews for sickle cell care, a model Aflac counsel Audrey Boone Tillman says other states should consider.
By Hana Yoshida · Markets Reporter
3 min read
Georgia has enacted a law requiring annual reviews of Medicaid coverage for sickle cell disease treatments and services, a change aimed at keeping state benefits aligned with new medical options. Audrey Boone Tillman, Aflac Inc.’s senior executive vice president and general counsel, said the measure should be a template for other states as patients face a painful inherited disease with limited public attention.
The Sickle Cell Disease Protection Act passed the Georgia Legislature in April with broad bipartisan support and was signed by Gov. Brian Kemp in May, according to Tillman. The law directs the Georgia Department of Community Health to review Medicaid-covered sickle cell medications, treatments and services each year and assess whether more coverage is needed.
Louisiana, Virginia and Tennessee have enacted similar laws, Tillman said. She argued that state Medicaid programs have a key role because federal action has not ensured consistent access to newer treatments across the country.
Federal law and state coverage
The National Institutes of Health describes sickle cell disease as a group of inherited disorders in which a gene mutation causes red blood cells to become misshapen, often taking a crescent or sickle form. Those cells can obstruct blood flow, which can lead to severe pain, disruption and potentially fatal complications, according to NIH.
Tillman noted that the disease affects nearly 100,000 Americans but is still classified as an orphan disease, a category for conditions affecting fewer than 200,000 people. She said that classification contributes to sickle cell disease receiving less attention than many other conditions.
Congress passed the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention and Treatment Act in 2018. Tillman said the law authorizes Department of Health and Human Services funding for research, education, screening and treatment, but does not require nationwide access to care or compel state Medicaid programs to add coverage for new treatments.
In her view, that leaves state lawmakers, health systems, researchers and companies with work to do. She said treatments now exist that can help people living with the disease, but coverage and delivery systems must allow patients to use them.
Aflac’s role in Georgia
Tillman, who has worked at Aflac since 1996 and became general counsel in 2014, pointed to her company’s ties to the issue in Georgia. She said Aflac sponsors the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, which she described as having the nation’s largest pediatric sickle cell disease program.
Tillman said sickle cell disease is also personal for her as a Georgia native and as the spouse of a physician who treats patients with the condition. She recalled seeing classmates experience painful episodes that led to hospitalization when she was a child.
June 19 is World Sickle Cell Day, which Tillman used to call for wider action beyond Georgia’s law. She urged expanded screening for newborns and potential carriers, more public education, broader bone marrow donor registration and stronger public-private partnerships involving government agencies, health organizations, universities and companies.
Tillman compared the need for action on sickle cell disease with past public health campaigns against polio, smallpox and the pandemic. She said medical advances can improve lives before a final cure is found, but access will determine how much those advances help patients.
This story draws on original reporting from Fortune.