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The Patients and Families Behind Right to Try

May 31, 2018

By Jennifer Tiedemann
May 31, 2018

When President Donald Trump signed the federal Right to Try Act yesterday afternoon, it was the culmination of years of hard work from countless people, including patient advocates, lawmakers, and activists. But the battle for the Right to Try has been an especially personal one for these patients and their families. Several of these terminally ill patients and their loved ones, who have been on the front lines of the Right to Try fight on both the federal and state levels, were on stage with the President at yesterday’s signing ceremony, looking over his shoulder as he signed the landmark legislation into law.

At its core, Right to Try—the right of terminally ill patients to try investigational medications that have not yet been fully approved by the FDA—is about the individuals who want the ability to try to save their own lives. With that in mind, here are a few of the stories of those who joined the President on stage yesterday. For many like them, yesterday’s signing will potentially open up new avenues to treat their conditions and give them greater hope in the face of terminal diagnoses.

Jordan and Laura McLinn

Jordan McLinn gets a hug from President Donald Trump at yesterday’s Right to Try Act signing ceremony.

Perhaps the most widely covered moment of yesterday’s ceremony was a young boy getting a hug and kiss on the forehead from President Trump following the bill signing. That young boy is 9-year-old Indiana boy Jordan McLinn—and he and his mom, Laura, have been among the most tireless advocates for Right to Try.

Jordan has fatal Duchenne muscular dystrophy, but he dreams of growing up to be a firefighter. He has devoted his young life to helping give patients like him the right to try experimental treatments to improve and extend their lives. Back in 2015, CBS This Morning called Jordan “the face of Indiana’s Right to Try bill”—he stood beside then-Indiana Governor Mike Pence when that state’s Right to Try legislation was signed into law. Just this morning, the show ran an update about Jordan and Laura—Laura said that “to see [Right to Try] just finally come to the finish line was just a huge, huge accomplishment.”

Read more about the McLinns’ story here and here.

Frank and Eric Mongiello

A few months after first experiencing some weakness in his right arm while doing yardwork, Pennsylvania father of six Frank Mongiello received a devastating diagnosis: He had amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s Disease. Today, confined to a wheelchair, Frank works alongside his family—including his son Eric, who joined him on stage yesterday—to raise awareness for ALS and for the need for Right to Try. “For me, failure is not an option,” Frank told PEOPLE last year. “I look at it this way: I did not choose this path, but it’s the path that I am on. So I will fight like hell to greet tomorrow’s dawn.”

Read more about the Mongiellos’ story here.

Mike and Nicole Cimbura

Colorado man Mike Cimbura was also diagnosed with ALS in 2015, and as it has been for the Mongiellos, the Cimburas’ fight for the Right to Try has also been a family affair. Mike’s children, Ellie and Aiden, recounted their father’s struggle in an op-ed for the Denver Post in late 2016: “Once very athletic, he can no longer dress himself, brush his teeth, breathe without the use of a machine, speak without the help of a communication device, shower on his own, eat a meal, walk, give us hugs or high-fives, or tell us he’s proud of us or that he loves us in his own voice.” Ellie and Aiden urged the federal government to take up the cause of Right to Try, explaining that “there are promising new treatments in clinical trials in the U.S. and drugs being safely used around the world, and our dad needs access to them now. We can’t wait any longer.” Mike and his wife, Nicole, were able to stand behind the President to watch the federal Right to Try bill be signed firsthand.

Read more about the Cimburas’ story here.

Tim and Torryn Wendler

For the Wendler family, yesterday’s bill signing was emotional and bittersweet. Following her ALS diagnosis, Trickett Wendler—one of the federal bill’s namesakes—was a major Right to Try supporter. Senator Ron Johnson, who represents the family’s home state of Wisconsin, first met with the Wendlers in 2014; Johnson said recently that when he told Trickett about Right to Try at their first meeting, “tears streamed down her face.” After Trickett passed away in 2015, her husband, Tim, and her children took up the mantle for Right to Try, meeting with lawmakers to draw attention to the need to increase access to investigational treatments. Tim and the Tricketts’ daughter Torryn joined the President on stage for yesterday’s signing, but they knew they weren’t alone. “I know Trickett’s watching,” Tim said. “Obviously she’s incredibly proud—of being able to have an impact on people’s lives, on families’ lives, on terminal patients that have a little more hope now because of what she inspired four years ago.”

Read more about the Wendlers’ story here. 

Diego and Paulina Morris

Diego Morris tells his story in a recent Goldwater Institute video.

When 10-year-old Diego Morris woke up with leg and back pain one morning in 2012, he and his family weren’t initially very concerned, thinking it was related to Diego being a dual-sport athlete. But a doctor’s diagnosis changed his life: Diego had osteosarcoma, a rare bone cancer. The drug that could save Diego—mifamurtide—was not available in the United States, but it was approved for use in England. The Morris family made the difficult decision to relocate for a year from Phoenix to London so Diego could get his needed treatment. It was a “nervewracking” move, Diego explained in a recent Goldwater Institute video, and giving patients the Right to Try in the United States is something he became passionate about because it wasn’t an option that he and his family had—and moving to another country to get treatment isn’t something most families can do. Now a teenager, Diego is cancer-free today, and the legislation Diego called a “no-brainer” is now the law: Diego and his mother, Paulina, were on stage yesterday to watch it get signed.

Read more about the Morrises’ story here.

Matt and Caitlin Bellina

Matt Bellina testifies before Congress about the Right to Try.

U.S. Navy veteran Matt Bellina was diagnosed with ALS. He got his definitive diagnosis in 2014, but at that point, he had been showing symptoms of the disease for about eight years. That timing meant his illness had progressed too far for one FDA-approved ALS drug and not far enough for the other. But that was not an acceptable answer for Matt and his family: He wants to watch his three young sons grow up. Last year, Matt finally had one drug company (out of the almost 20 he approached) grant his “compassionate use” request to take an investigational drug, but he believes that patients like him shouldn’t have to jump through hoops to try to improve their conditions. That’s why Right to Try is so important to him: “If I’m not going to make it anyway, why shouldn’t I get to try [experimental drugs]?” Matt and his wife, Caitlin, have noticed some improvements in his condition since he started on the new drug; he can get out of a chair unassisted and he can whistle again, for example. And yesterday, Matt and Caitlin were able to celebrate Right to Try becoming the law of the land by watching the signing ceremony on stage.

Read more about the Bellinas’ story here.

Jennifer Tiedemann is the communications manager at the Goldwater Institute.



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