On Monday, February 10, 2025, Rich DeAugustinis, Vice Chair of TMA’s Board of Directors, testified to the Georgia Senate Committee on Health and Human Services in support of the Georgia Hope for Patients Act (S.B. 72). This proposed legislation, sponsored by Georgia Senator Matt Brass, will allow patients who have severely debilitating or life-threatening illnesses to receive treatment with experimental therapies they would not otherwise have access to.
This legislation is notable in that it goes beyond “right to try” laws, which already exist in Georgia and other states. “Right to try” applies to treatments that have gone through part of the FDA clinical trials process to see if they are safe but have not received FDA approval.
This bill expands that access to treatments that have not gone through the approval process at all. Many of these treatments are for rare conditions, and the clinical trials process is too costly and time consuming to make it worthwhile for a drug company to pursue. Rather than allowing these therapies to sit on the shelf going unused, this bill will allow them to be used to treat appropriate patients, even though they are not FDA approved.
Patients who seek these treatments are typically those who have tried all other approved therapies without success. Safeguards are in place to protect patients and ensure ethical and medically appropriate procedures are followed.
“I was honored to testify in support of the ‘Hope for Georgia Patients’ bill in the Georgia legislature, which if it becomes law will give patients with rare diseases in Georgia access to more life-saving treatment options,” Rich says. “I strongly support this bill in Georgia and hope to see other states pursue similar legislation in the future.”
During his testimony, Rich told lawmakers his father’s story of living with inclusion body myositis. Augie DeAugustinis, who also served on TMA’s Board of Directors, was diagnosed with IBM 17 years ago.
In 2014, Augie participated in a phase 1 clinical trial of a gene therapy, a study that was supported by TMA Research Grant funding. That treatment was successful for Augie, rebuilding muscle tissue in his legs and allowing him to walk for several more years. Unfortunately, researchers were unable to attract enough funding to complete the larger clinical trials necessary to gain FDA approval. Without the treatment, Augie’s condition has deteriorated to the point where he now manages life in a wheelchair full time and relies on others to help him with daily living activities.
“Had this legislation been law at that time, it would have cleared a path for my dad to continue utilizing this effective treatment,” Rich says. “It likely would have delayed the further breakdown of his muscles, and extended quality of life for him.”
When this important bill becomes law, it will create greater access to life-saving and impactful therapies for Georgia citizens fighting rare diseases. TMA is excited to share that the bill advanced out of committee to the full Georgia Senate.