Texas Mom to FDA: If Right to Try Means Anything, It Should Mean Something for Duchenne Families

El Paso mom Angeline Olivera says FDA restrictions on Elevidys betray the spirit of Right to Try for Duchenne families. #Texas

Mar 26, 2026

A Texas mother is asking a question a lot of families dealing with rare diseases have probably asked in private for years: what exactly is the point of a Right to Try law if the bureaucracy can still slam the door when the clock is running out?

That question is coming from Angeline Olivera of El Paso, whose 14-year-old son Ryu lives with Duchenne muscular dystrophy, or DMD. According to Olivera's USA Today essay, she has already watched two of her brothers die from the same disease. Now she is watching the federal government tell families like hers to trust the process while precious time keeps slipping away.

And that is the part the paperwork people never seem to understand. Families living with Duchenne do not experience delay as an abstract policy choice. They experience it in muscle loss, weakened breathing, lost mobility, hospital visits, and birthdays that come with less certainty than they should.

What the FDA did with Elevidys

Elevidys is a gene therapy from Sarepta Therapeutics for Duchenne muscular dystrophy. The FDA said in a July 18, 2025 news release that it requested Sarepta suspend distribution of Elevidys and placed multiple gene therapy trials on hold after three deaths potentially related to products using the same AAVrh74 platform technology.

The agency said acute liver failure was a serious safety concern and argued patients could be exposed to an unreasonable and significant risk of illness or injury. FDA Commissioner Marty Makary said the agency believes in access to drugs for unmet medical needs, but would act when serious safety signals emerge.

That is the official explanation. The human reality is uglier.

According to Olivera and a Townhall report that cited the same underlying dispute, the halt hit non-ambulatory Duchenne patients especially hard, including boys in wheelchairs like Ryu. In other words, some of the kids with the least time to spare got told to wait longer.

Because of course the people who know the disease best are rarely the ones making the final call.

What Duchenne families are actually facing

Duchenne is not some manageable inconvenience. It is a brutal, progressive disease that weakens muscles over time and usually cuts lives short. Olivera wrote that her son now relies on nighttime breathing support and has needed a power chair since age 12. She also described the financial wreckage that comes with this kind of diagnosis.

Here is part of what that looks like for families like hers:

Wheelchairs that can cost around $30,000
Medications that can run thousands per month even after insurance
Constant specialist care and home equipment
The emotional strain of knowing delay almost always means decline

There is a reason President Trump signed the Right to Try Act in 2018. The core idea was simple and deeply American: when families are facing a life-threatening condition, Washington should not pretend it owns every decision. Government has a role in guarding safety. It is not supposed to act like a priesthood that decides which families are allowed to hope.

Safety matters. So does reality.

None of this means risks are fake. They are not. The FDA points to deaths and liver failure concerns, and those facts matter. But so does another fact: Duchenne itself is a death sentence measured in years, not decades.

Townhall reported that more than 1,200 individuals had received Elevidys in trials or treatment settings, while the deaths connected to liver failure involved older, more advanced patients and a related trial. That does not magically erase the danger. It does raise the question every parent in this situation is asking: who gets to weigh the danger of treatment against the certainty of decline without it?

The people in Washington seem to think the answer is Washington.

That is not what Right to Try was supposed to mean.

The Senate hearing said the quiet part out loud

At a February 26 Senate Special Committee on Aging hearing, witnesses described an FDA that families and rare disease advocates see as opaque, slow, and maddeningly inconsistent.

According to Townhall's summary of the hearing:

95 percent of known rare diseases still lack effective FDA-approved treatments
At the current pace, developing treatments for half of all known rare diseases could take roughly 161 years
Parents and researchers testified that patients with short life expectancy do not have the luxury of endless additional trials

A 161-year pace for families watching their children deteriorate in real time. Brilliant system. No notes.

The encouraging part is that this is not a left-right issue in the usual sense. Even senators from both parties reportedly expressed concern that terminally ill children and adults are being trapped in a bureaucratic maze. That matters. It means the pressure on the agency can grow if lawmakers decide this issue deserves more than sympathetic hearing-room speeches.

This is where the Trump administration can make the promise real

The better way to frame this story is not that President Trump was wrong to champion Right to Try. It is that the promise still needs bureaucrats to stop acting like they outrank families.

Olivera's criticism lands because it appeals to a principle conservatives already believe: parents and patients should have more say, not less, when government has no real way to stop the disease itself. If the administration wants to restore confidence here, it should push for a path that protects informed consent while allowing terminal patients and their families to choose treatment when the alternative is obvious decline.

That could mean faster review, clearer compassionate access rules, better patient waivers, or congressional reforms such as a stronger Right to Try 2.0. What it should not mean is this: a family in Texas gets told to keep donating time, money, and hope to a medical system that still reserves the right to say no when the therapy finally shows up.

The bottom line

This story is about more than one family, but one family tells it well enough. A mother who buried two brothers to Duchenne is now fighting for her son while the federal machine explains why caution must continue. Nobody serious is asking regulators to ignore risk. They are asking them to remember what urgency looks like when the patient is a child and the disease does not wait.

If Right to Try is going to mean anything in America, it has to mean something for families like the Oliveras. Otherwise it is just another beautiful slogan pinned to a locked door.

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