Eight years ago, President Donald Trump signed the Right to Try legislation to give people with terminal illnesses a chance at life. Now his Food and Drug Administration has undermined those principles by stealing the chance for my son to live past his early 20s. 

I’m a mother of three living in El Paso, Texas. My 14-year-old son, Ryu, lives with Duchenne muscular dystrophy – a disease that killed two of my brothers. I said goodbye to my youngest brother, Antonio, as Ryu, who was diagnosed as a newborn, was sitting at my feet. 

Duchenne looms ominously over childhood and swoops down in early adulthood to make good on its threats. 

After spending much of my life in clinics and hospitals, I’ve seen people bravely face a difficult future. I also know that hope lives when elected officials, regulators and researchers prioritize the principles of Right to Try. Kids with Duchenne muscular dystrophy and their families deserve the chance to decide their own future. 

People understand that living with and around rare diseases is medically challenging. But it’s also financially devastating. When Ryu’s pharmacy first told me one of his medications would cost $30,000, I almost dropped my phone. Insurance brought our portion down to about $2,000 a month – which was still more than our mortgage. We were fortunate enough to find a nonprofit that could help us cover that cost. 

But I often think about the families who don’t have the time or resources to navigate that maze while caring for a child with a degenerative disease, because the expenses don’t stop with medication.

Duchenne drained us financially and emotionally

Duchenne gradually weakens the muscles that allow someone to breathe. Ryu now relies on a BiPAP (bilevel positive airway pressure) machine at night to support his lungs – equipment that comes on top of the $30,000 power chair he has needed since the age of 12 and other medical needs he depends on.

We are drained financially and emotionally. The hope of a cure from cutting-edge research fueled us when we had nothing left to give. But now the FDA is limiting access to the results of that new and emerging research – which is why I’m speaking out.

Families like ours deserve to be heard. We don’t have time to wait for bureaucrats to make decisions for us.

Duchenne families feel as though they are being asked to sacrifice resources in the name of research while being denied access to research results. This is not right, neither morally nor practically.

We know Duchenne is terminal. It's a devastating truth we live with every day. Muscle loss is irreversible, and delaying treatment only accelerates the decline. Every month matters. We do not have time to wait.

The Trump administration once championed agency and choice. Where is that spirit now? The FDA should be guided by the principle that patients have a say over what happens to their own bodies. Somewhere along the way, that clarity has been lost.

Trump has already said that families deserve a voice in life-and-death medical decisions. Duchenne families are simply asking that this principle be carried through in practice. We are not asking for shortcuts.

We are asking for the same agency that was once championed as a fundamental right of terminal patients.

FDA should be source of hope

While Elevidys – the only gene therapy treatment on the market for Duchenne – doesn’t technically qualify for Right to Try opportunities because it is not an “unapproved investigational drug," the law is still important as an underlying philosophy.

That's what makes it exciting and important – it’s not just a formal government program. For families like ours, the Right to Try is our only source of hope.

Ever since regulators pushed Sarepta Therapeutics to halt shipments of its gene therapy for Duchenne in July due to so-called safety concerns, families like mine have watched the FDA ignore our voices.

But at the Feb. 26 Special Senate Committee on Aging hearing, senators on both sides of the aisle made it clear that they want the FDA to prioritize treating terminal illnesses for children. They know it’s a human, not a partisan or red tape, matter. I hope they will provide the political pressure necessary to give Ryu the chance at life that my brothers never got. 

Every day with our son is a risk; each night we put him to bed, he may not wake up. A simple cold could be deadly, because his body has a hard time creating the coughing that the rest of us take for granted.

My family would have taken any “risk” to give my two brothers a better, longer life. I ask that the president and other elected officials don't let the FDA take that hope away from my son, our family and so many other families across the nation. 

Angelina Olivera is a Texas resident who has lost two brothers, Angelo and Antonio, to Duchenne muscular dystrophy and is now the full-time caretaker for her teenage son, Ryu with DMD.

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