Life-Saving drug Faces discontinuation, Leaving Georgia Man and Others in Limbo
Atlanta, GA – A rare genetic disease is threatening to rob a Georgia man of his independence, and a looming decision by the drug’s manufacturer could sever his lifeline. Walker Wildman,33,relies on elamipretide,a medication that slows the progression of primary mitochondrial myopathy – a debilitating condition that weakens muscles,impacting everything from breathing to basic movement. Now, the future of his treatment, and that of others with the same diagnosis, hangs in the balance as the drug’s maker, Catalent, plans to discontinue production.
Wildman is one of approximately 300 people in the United States living with primary mitochondrial myopathy who depend on elamipretide,a drug approved by the Food and Drug Administration in 2023. The potential loss of access to this medication isn’t just a medical setback; it represents a devastating blow to the hard-won stability these patients have achieved, and a stark illustration of the challenges facing those with rare diseases. The discontinuation is slated for the end of May, leaving patients and advocates scrambling for solutions while facing the prospect of rapidly declining health.
Wildman,of Cumming,Georgia,began experiencing symptoms as a teenager. What initially presented as clumsiness gradually escalated into important muscle weakness, eventually requiring him to use a wheelchair for mobility. “I was losing ground, just getting weaker and weaker,” he told the Atlanta Journal-Constitution. Before elamipretide, “every day felt like a loss.”
The drug, administered via daily injection, doesn’t cure the disease, but it demonstrably slows its progression. Wildman credits elamipretide with halting his decline and even allowing him to regain some strength. “It’s given me my life back,” he said. “I can do more things,I’m not as tired,and I feel like I have a future.”
Catalent cited commercial reasons for the decision, stating that the market for elamipretide is too small to justify continued production. this rationale is a common hurdle for treatments targeting rare diseases, where the cost of research and advancement often outweighs potential profits.
“It’s incredibly frustrating,” said Sara Bonkowski, co-founder of the Mitochondrial Myopathy Support Group. “These companies are allowed to just pull the plug on life-saving medications because it’s not financially viable. It’s a broken system.”
Patients and advocacy groups are now urgently seeking alternative manufacturers or exploring options for compassionate use programs. The FDA is also being pressured to intervene. for Wildman, and others like him, the coming weeks are critical. The loss of elamipretide woudl mean a return to a relentless decline, a future defined by increasing disability and a diminished quality of life.
Thomas Lake is a senior reporter for The Atlanta Journal-Constitution. His work has been published in The Washington Post, The Wall Street Journal, Sports Illustrated and The Guardian. He’s a co-founder of The Lake Family band. Please email thomas.lake@ajc.com if you’d like to share a story idea.
