I am almost dying of a fatal illness. The bureaucrat should not decide how doctors will treat me

At age 6, I was diagnosed with a fatal illness. At 11, I lost the ability to walk. Today I am 23 years old and am fighting for my life.

Tragically, the federal government is in the way.

I'm not alone. Tens of millions of Americans suffer from rare diseases. And while we believe we have entered the “golden age” of personalized medicine coordinated around the DNA of patients, regulatory obstacles often wait years for us to access treatments that are useful. You will be forced to do so. We need to break through this logjam so patients have access to cutting-edge treatments today.

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My illness is Duchenne muscular dystrophy (DMD). This is a rare and genetic disorder that wastes muscle. Patients walk from age 9 to 12 and lose the ability to completely rely on power wheel chairs. They then lose their lives in their mid-20s as the teenagers' arms significantly loses function and ultimately the muscles that cause breathing affect the myocardium.

I have tried not to let this illness define me or stop me. At the age of 15, he founded a nonprofit organization called Destrow Duchenne. I went on to recognize the bestselling author, public speaker, Hollywood writer, producer, biotech consultants from five companies, investors, and DMD's leading opinion leader (KOL).

But I still know the cruelty and pain that this disease causes. My 17-year-old brother also has a DMD. So did my younger brother, who died of illness at the age of 14. Duchenne affects not only the sick, but everyone around them.

Luckily, I am optimistic about innovation in the healthcare sector. As someone who works in the biotechnology industry, I know that there are countless advances in the work we are trying to change the way we deal with illnesses. The rise in AI could make progress even faster and cheaper, and drugs could become even safer from the start.

Time is the key in rare genetic diseases. It is almost always better to intervene before, as it is easier to maintain existing functions and overcome some of the effects of the disease. For example, younger patients with Duchenne tend to gain muscle.

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It also tends to have less fibrosis (scar tissue) and fat infiltration. This further reduces mobility as two biological effects of disease develop over time. Tragically, some patients are at the end of their lives. There you can make sure that the day is alive or dying.

On average, clinical trials for new treatments take around 10 years to complete. By then, the patient's illness may have progressed beyond the point of meaningful treatment. Laws like “right to attempt individual treatment.” This is an innovative reform currently in law in six states, and the doctor and patient's hands are required to make these important decisions about when to try new drugs in clinical trials customized based on genetics. We are putting our strength in.

Now I'm willing to try a new treatment, the manufacturer of treatments can be willing to allow me to try it, and the doctor will be willing to administer it – but Uncle Sam I'm not happy about it, so I will stop receiving my lifesaving treatment.

Elijah Stacy (right) looks over at his brother Kai. Both are fighting Duchenne muscular dystrophy. (Goldwater Research Institute)

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This is completely backwards. After all, doctors know patients better than distant bureaucrats who don't even know that they exist. Why should I ask the federal government for permission to save my life?

The reality for me is that I die before I reach middle age. The average life expectancy for a Duchenne person is 25. But it doesn't have to be that way.