Before he was diagnosed with ALS in 2015, Frank Mongiello had a successful career, a loving family, and good health. Three years later, Mongiello is unable to move his limbs or talk, communicating with the assistance of an eye-tracking machine. But thanks to a new law that gives people like him the ability to seek out life-saving solutions, there is still reason for him and others to keep going.
“I feel like I have too much to do here before I leave. Where there is breath, there is hope,” Mongiello said through the machine.
Mongiello and his family have championed federal “right-to-try” legislation, which allows terminally ill patients the ability to pursue experimental treatment that has not received approval from the Food and Drug Administration. Mongiello has taken 30 trips to Washington and testified before Congress in support of the legislation, which critics have argued does not benefit patients. President Donald Trump signed the legislation into law in late May with the Mongiellos at his side.
“Our right to try for hope empowered us to keep going,” said Marilyn Mongiello, Frank’s wife.
Although the new law gives people like the Mongiellos the right to experimental treatment, it does not pay for it. Frank’s medicine costs $300,000.
“I don’t think the journey is over in terms of how patients go to the companies to get the drugs. All this has to be worked out,” Marilyn Mongiello said.
Sen. Ron Johnson (R-Wis.), who has championed the legislation for years, is careful to note that he does not see “right to try” as a panacea.
“It just restores a little bit of hope, a little bit of freedom, to patients and their families that are facing a terminal illness where there’s no other treatment options, they don’t qualify for any kind of clinical trial,” Johnson said.
The legislation, Johnson added, puts the power back into the hands of patients, families, and doctors to decide whether they want to try an experimental drug that is already going through the FDA approval process.
“It will save lives,” Johnson said. “I mean, it’s already been proven to save lives.”
Discussing the high cost of treatment for people like the Mongiellos, Johnson acknowledged that “the economics of medicine are difficult.”
“That’s a real issue, but right-to-try [legislation] … doesn’t allow manufacturers to make money. They can charge the cost, but they don’t have any profit motive in doing this,” Johnson said. “This is really just compassionate use.”
This story originally appeared as a Freedom to Flourish segment, sponsored by Koch Industries, on Hill.TV’s Rising with Krystal & Buck.