Per the federal Rare Diseases Act of 2002, a rare disease is defined as one affecting fewer than 200,000 individuals in the U.S, or about 1 in 1,500 people. There are roughly 7,000 known rare diseases affecting 25-30 million Americans, more than half of which are children. Many are genetic, and are very difficult to diagnose and treat effectively. 30 percent of children diagnosed with a rare disease will die before their fifth birthday.
It is likewise difficult to secure funding for research on many of these diseases, as there are few doctors who specialize in them and few companies that can afford to search for treatments.
Enter HB 918, legislation passed this year to establish a Georgia Rare Disease Advisory Council (RDAC) that will advise the General Assembly and other state agencies and departments on the needs of Georgians living with one of these rare diseases. Put into effect on July 1st, Lt. Gov. Geoff Duncan on Wednesday named the first five members of the 16-member council, with the others set to be named by Gov. Brian Kemp and Speaker David Ralston.
Georgia becomes the 22nd state to create an an RDAC, an effort that was pushed for by the National Organization for Rare Disorders (NORD) and its Georgia chapter during the 2022 legislative session. The group praised state Rep. Mike Cheokas, R-Americus, for sponsoring the legislation and helping see it through to the governor’s desk.
“This newly established RDAC will provide a platform for the rare community to have a stronger voice in the state of Georgia. These advocate-built councils are a great display of community engagement and partnership between families and the government. NORD would like to express our appreciation to Representative Mike Cheokas for being a champion for Georgia’s rare disease community by sponsoring this important legislation and ensuring it got over the finish line,” said Heidi Ross, Vice President of Policy and Regulatory Affairs for NORD.
Duncan’s appointees include an executive from a biopharmaceutical company, another from an insurance agency, and two who specialize in representing patients. He said it was important to have viewpoints and expertise from different angles as the council is established and begins its work.
“Having a comprehensive understanding of how various rare diseases affect Georgians and how our state can better prepare to treat patients with rare diseases are foundational components to the success of our healthcare system,” said Duncan Wednesday. “I was proud to support the creation of this critical council and know that each member will bring an important point of view to the table as we collectively work for the betterment of rare disease patients in Georgia.”
