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An Arizona family is pushing for a proposed “Right to Try 2.0” law from the Goldwater Institute after they were forced to raise thousands of dollars and temporarily move to Italy to receive medical treatment for their 2-year-old daughter who has a rare genetic disease.
Life for the Riley family changed in March 2020 when Olivia, their 1-year-old daughter, was diagnosed with Metachromatic Leukodystrophy (MLD), a highly progressive and rare genetic brain disease that impacts an individuals’ ability to walk or talk. Three months later, Keira, Olivia’s younger sister, received the same diagnosis as a newborn.
“When we first got Olivia and Keira’s diagnosis, honestly, we didn’t know there was an option,” Kendra Riley, Olivia and Keira’s mother, told Fox News Digital.
Assistance was available for Keira, but that treatment was more than 6,000 miles away in Italy, requiring the family to raise money in an effort to make the trip to receive the life-saving gene therapy treatment — a treatment that lacked approval from the U.S. Food and Drug Administration.
“We had to raise hundreds of thousands of dollars in a month’s time, plus get the girl’s passports and visa’s during a pandemic, no less, which is a whole other story,” Riley said. “We looked into Right to Try when we first were exploring options, but unfortunately it didn’t cover what our situation needed, especially because we had so little time on our hands. It was a literal race against time to get Keira this treatment she needed before symptoms started occurring.”
Kendra said Olivia’s disease progressed rapidly, and within 90 days of symptom onset, she lost the ability to walk or talk. Because she was already experiencing symptoms, Olivia was not eligible for the same treatment as Keira.
Thanks to the treatment, Keira’s mother said she is “doing things that we never got to see Livvy do.”
“She’s running. She’s climbing. She’s having full conversations with us,” Riley said. “She’s enrolled in preschool for the fall. These are really great, everyday things for normal parents, but for us, they’re huge, huge milestones that we didn’t get to see with Livvy. So it’s really, really heartwarming to see that happen for Keira. And it’s all because of this treatment.”
“It’s odd to say we’re lucky that everything came together as it did, and we made it to Italy, but I mean, of course, I feel like as an American citizen, or literally any human, should have the option of getting access to the one treatment in the world that could save their life,” Riley added.
“What we’ve been through to save our daughter’s life is not something I want another family to have to go through,” Riley said. “To think of a child at 8 months old could potentially die by 6, but there’s an option, one option in the entire globe that could save their life,” she said. “I want other families to have that ability to have that one option and not have to raise hundreds of thousands of dollars and move across the globe to get it.”
Following the Riley family’s journey, they are now urging lawmakers in Arizona to pass the Goldwater Institute’s Right to Try for Individualized Treatments reform. The initiative builds off the original Right to Try law, which was signed into law in May 2018 by former President Trump and, according to the FDA, is a “way for patients who have been diagnosed with life-threatening diseases or conditions who have tried all approved treatment options and who are unable to participate in a clinical trial to access certain unapproved treatments.”
Goldwater Executive Vice President Christina Sandefur said, it “is unconscionable that an American patient has to travel to another country, to Europe, in order to be able to get access to a treatment that could save their lives.”
With bipartisan support, the reform effort has passed the Arizona Senate and the House Health and Human Services Committee. It will soon make its way to the House floor for a vote.
“Now it’s time for Right to Try 2.0, which will give hope to a new generation of families — families for whom the original, traditional treatments just won’t work, families who are out of options and need the best, most cutting-edge medicines out there,” Sandefur said. “That’s why we need Right to Try 2.0.”
There are Right to Try laws in place already in more than 40 states in America, according to RightToTry.org.