Elijah Stacy was only six years old when he was diagnosed with a fatal and incurable disease. At age 11, he lost the ability to walk. Today, he’s 23 and is fighting for his life—and for all of those who are desperate for a cure. Elijah suffers from Duchenne muscular dystrophy, a rare genetic, progressive muscle-wasting disease for which there is no cure. Patients lose their ability to walk around ages nine to 12, and they become completely dependent on a power-wheelchair. Then they noticeably lose function of their arms in their teens and eventually lose their life in their mid-twenties as the muscles responsible for breathing are affected, as well as the heart muscle.
But Elijah didn’t let that stop him.
Watch Elijah tell his story in the video below or here.
“I thought about how I could be dead in the next 10 years,” Elijah said. “You know, that’s crazy to think about. I took that as a challenge. So right after then I started figuring out, well, you know, what can I do to make a difference about this? What can I do to change the course of this disease?”
At 15, he founded a nonprofit organization called Destroy Duchenne. He went on to become a bestselling author, public speaker, Hollywood writer and producer, biotech consultant to five companies, investor, and a recognized leader in fighting Duchenne.
“We should use our suffering to help people overcome their suffering,” Elijah explained. “Don’t let your suffering go unused, but use your suffering to help people overcome theirs. I wanted to make a big difference within this, within this disease.”
Tragically, Elijah knows all too well the brutality and pain this disease causes for others, as well. His younger brother, who is 17, has Duchenne, as did his other younger brother, who passed away from it at age 14. Duchenne affects not just the person with the disease, but everyone around them, as it steals the person away from those that love them.
That’s one reason why Elijah is advocating for the Right to Try for Individualized Treatments (Right to Try 2.0). This landmark state-level reform—already enacted in six states—creates a pathway for Americans to access innovative, individualized treatments that have not yet received approval from the Food and Drug Administration (FDA). It empowers patients with rare diseases to get the care they need, without begging the federal government for permission first.
“I support anything that gives people medical freedom. I support anything that allows us to accelerate,” Elijah said. “I’m glad to see that we have a Right to Try 2.0, which allows even more medical freedom, which I think is great.”
Find out more about the Right to Try here.
For Elijah, the need for the law is as clear as can be. There’s a potential genetic treatment for his condition that is sitting on the shelf, all because of government bureaucracy.“When I was diagnosed, there were zero FDA-approved treatments available for me. Today, there’s more treatments coming online, becoming FDA approved, but even for me as an individual, OK, there’s not really any treatments that I can take as of right now. A lot of these treatments are actually unique to people and their mutations, especially with Duchenne muscular dystrophy.
“If the patient wants it, if the company’s willing to give it, and most importantly, in my opinion, the physician agrees with it, it’s something that makes sense,” Elijah said. “And really the only reason I can’t do it is because of the current law that’s very frustrating. Somebody that doesn’t even know me has written in a law which is stopping me from being able to take a drug today, that could potentially totally change the course of my life.”
Learn more about Elijah’s story here, find out about the Right to Try for Individualized Treatments here, and register for our Right to Try webinar featuring Elijah here.
Mike Brownfield is the Vice President of Communications and Strategy for the Goldwater Institute.
