This article was originally published by Stand Together Trust.
It is almost unimaginable to learn that a loved one is facing a terminal illness. That anguish would be multiplied if that loved one was your own child. Every parent knows that you would do almost anything in your power to access treatment and work closely with your child's medical providers to find a solution that could stall or cure the child's illness.
The Riley family knows both this anguish, as well as the race against time to get their baby daughter critical care. The Rileys raised hundreds of thousands of dollars in a few short weeks in order move their family to Italy for six months during the Covid-19 pandemic so that their daughter could receive an individualized treatment not yet approved in the United States by the FDA. Because of this treatment, the disease has not progressed and the Rileys' daughter is developing like a normal young child. Not expected to live through childhood, little Keira is now thriving and just started Pre-K.
Thankful that they had the opportunity to save their daughter's life, the Rileys are now advocating for laws that give other terminally ill patients the right to try individualized treatments here at home. They believe that no patient should be forced to travel the world to access medically promising treatments.
"The right to try to save one's own life is one of the most precious rights of all," said Victor Riches, President and CEO of the Goldwater Institute in a press release for Goldwater Institute's Right to Try 2.0 campaign.
Removing bureaucratic barriers to promising treatments
The Goldwater Institute, with funding from Stand Together Trust (STT), has already had success in giving Americans the right to try to save their own lives. The first Right to Try law — crafted by Goldwater Institute -- allowed patients with terminal illness to try treatments that passed initial safety testing but were not yet FDA approved. Initially implemented in Colorado, Goldwater led a movement for it to be adopted in 40 other states, and eventually, signed into federal law in 2018.
Now, again with funding from STT, the Goldwater Institute is setting out on a campaign to inform policy makers, media, and the general public on the value and necessity of expanding Right to Try laws to include individualized treatments.
The expansion of the Right to Try law is necessary to both keep pace with medical innovations that can treat illness based on an individual's unique genetic makeup and open a treatment pathway for the patients who can benefit from these promising treatments but simply can't wait for the years or even decades-long FDA process.
The safety process Goldwater Institute proposes for these treatments works in tandem with federal laboratory and research standards, as well as ensuring federal and state patient protections.
"America doesn't have to wait for the FDA to reform itself in order to put patients first," Riches said. "States can and should act now to protect all Americans' fundamental right to try to save their own life."
As the Rileys can attest, these individualized treatments can be highly effective, and when you're facing terminal illness, trying something to save your life is better than trying nothing.
Thankfully, many politicians agree. In April 2022, Arizona Governor Doug Ducey signed the Goldwater Institute's Right to Try for Individualized Treatments (Right to Try 2.0) into law—making "Arizona the first state in the nation to enact this legislation, which opens the door to cutting-edge treatments that are otherwise blocked [by the FDA]."
Now, the effort is ongoing to reach more states and more Americans with legislation that had bipartisan support in Arizona.More importantly, Right to Try 2.0 gives everyone the right to try to seek individualized treatments to save one's life when faced with terminal illness.
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The Goldwater Institute is supported by Stand Together Trust, which provides funding and strategic capabilities to innovators, scholars, and social entrepreneurs to develop new and better ways to tackle America’s biggest problems.
Learn more about Stand Together’s health care efforts and explore ways you can partner with us.
