May 17, 2018
Stories Behind Right To Try
Post by Freedom Partners
House Majority Leader Kevin McCarthy announced this morning that the House of Representatives will vote on the Senate’s right-to-try bill in the upcoming days. With President Donald Trump eager to sign this legislation into law, good news for terminally-ill Americans and their families appear to be on the horizon.
Federal right-to-try legislation will help to bolster reforms that have passed in now 40 states, extending potentially life-saving treatments and medication to those who need it most.
Thanks in large measure to the leadership and hard work of Speaker Ryan, Majority Leader McCarthy, Majority Whip Scalise, Chairman Walden, and Senator Johnson, hope may soon be restored to tens of thousands terminally-ill patients.
U.S. Navy veteran, husband, and father of two, Matt Bellina is battling ALS, a fatal disease that is slowly taking away his ability to move and even speak. Diagnosed with this terminal illness at just 30 years old, there is no way to cure his disease, however, many investigational drugs show promise.
In attempts to access these promising medications, Bellina has run into the FDA’s painfully slow approval process. The need for right-to-try is obvious to him and his family, and Matt has become a strong advocate for this legislation on behalf of himself and patients just like him. In fact, Bellina was one of the few watching hopefully from the gallery at the President’s State of the Union address this year when President Donald Trump urged Congress to act on this issue.
Passage of this legislation is a beacon of hope for the Bellinas as two drug companies have offered to treat him if right-to-try is signed into law. Bellina calls Congress to seize this opportunity as “a vote against this is essentially a vote to kill me. It is a vote to make my wife a widow and leave my boys fatherless” he says.
In 2012, ten-year-old Diego Morris woke up with pain in his left leg and back. However, doctors learned that this pain was much worse than his parents imagined as he was diagnosed with osteosarcoma, a rare form of bone cancer. “My world turned upside down. I couldn’t believe my little boy had cancer” said his mother Paulina.
The Morris’s got even more discouraging news when they learned that they would be unable to access the medication Diego needed in the United States. This same drug, however, had been approved in England. Wasting no time, the family moved abroad to continue the fight to save Diego’s life.
Fortunately, the drug saved his young Diego’s life. While the Morris’s where able to go to great lengths such as moving overseas to receive this desperately needed medicine, few other families will have the opportunity to do the same. By passing Right to Try, Congress can extend this same hope to all American terminal patients and their families.
Shortly after graduating college, Mikaela Knapp married her high school sweetheart, Keith and had her whole life in front of her. A short two years later, she was diagnosed with a rare form of kidney cancer and was at an advanced stage. Because she was already at Stage IV, she was not eligible for any clinical options and had already run out of FDA-approved options.
Desperate for hope, the couple hadn’t given up the fight yet, and petitioned three drug companies with promising treatments for access under the FDA’s “compassionate use program.” While intended to allow terminal patients to access promising treatments, many companies are reluctant to participate as there is little protection from lawsuits.
Unfortunately, access to treatment never materialized for Mikaela and she passed away in 2014. But Right to Try legislation can offer hope to patients in Mikaela’s position as it would remove some of the hurdles that keep drug companies from providing experimental treatments to terminally ill.
These stories are of just a few of the countless lives in which Right to Try can or could have made a difference. With passage just in reach, Congress should take this historic opportunity to offer hope to numerous patients now and in the future.