The right to try

Senate passes legislation that would give millions of terminally ill Americans access to potentially lifesaving treatments

By Samantha Bambino

The Times

Holland resident Matt Bellina has a beautiful wife and three young children. Like any parent, he wants to see his children grow up, to witness all of their milestones in life. In 2014 at just 30 years old, it seemed like this future was snatched from him when he was diagnosed with ALS.

Saving lives: Holland resident Matt Bellina has worked tirelessly over the past three years to advocate for the Right to Try Bill, which would allow terminally ill Americans like himself to access potentially lifesaving treatments. PHOTO: Linda Mitchell / Newtown Athletic Club

Bellina could’ve easily given up and accepted the fate of the terminal illness. Instead, he worked for three years, and with the support of his community and state representatives, promoted the Right to Try Bill, which was recently passed in the U.S. Senate. Now proceeding to the U.S. House of Representatives, the legislation would allow millions of Americans access to potentially life-saving treatments.

Three years ago, Bellina became involved in a grassroots movement started by a woman in Wisconsin, who died of a terminal illness about two years ago. This was the fight to get the Right to Try Bill passed across the country. Thirty-three states have signed into law their own Right to Try legislation, not including Pennsylvania. Bellina wanted to change that.

In 2015, he joined the Newtown Athletic Club where he connected with its Have a Heart Foundation and owner Jim Worthington, who took up his cause with a relentless determination. With the support of his community behind him, Bellina wrote countless articles, made several videos and met with President Trump and Vice President Pence in Washington, D.C.

“We had a really good dialogue,” he said.

In February, Congressmen Andy Biggs and Brian Fitzpatrick, whom Bellina said was instrumental throughout the process, introduced the Right to Try Act of 2017, which would ensure terminally ill patients, together with their physicians and pharmaceutical manufacturers, are allowed to administer investigational treatments where no alternative exists.

Each year, more than 1 million Americans die from a terminal disease while thousands more are diagnosed. Though there are treatments available though the FDA that could potentially save their lives, most run out of time before they can qualify or before the FDA’s approval process is complete.

“The Right to Try Act opens the opportunity to trial-stage care and establishes the freedom for patients and their doctors to try therapies where the benefits far outweigh the risks,” Fitzpatrick said. “Americans — our constituents — should have every opportunity to fight for their life, or the life of their loved one. Whether it’s a father courageously battling ALS or a brave child living with Duchene Muscular Dystrophy, they deserve the right to try.”

While Right to Try doesn’t undo the FDA approval process, it provides a potential lifeline for those who cannot wait. Physicians must certify all other options are exhausted or not available, and all products must have completed FDA Phase I safety testing. The legislation also ensures patients, doctors and manufacturers do not assume any additional liability under this act.

On Thursday, Aug. 3, the Right to Try Bill, which carries the names of Bellina and other ALS patients Tricket Wendler, Jordan McLinn and Frank Mongiello, was passed in the U.S. Senate and now proceeds to the House of Representatives for consideration. Fitzpatrick and Biggs will continue to support the legislation and will try to foster its successful journey to the desk of the president.

“This initiative gives hope to millions of terminally ill Americans who would otherwise have no recourse available to them in their last days,” Biggs said. “Congress should never stand between a patient and hope of recovery, and with an administration that is eager to sign this policy into law, the House should immediately affirm the Senate’s action.”

According to Bellina, it should be about a month until the House reaches a decision, but he is confident he’ll see a similar outcome.

“We worked hard for a long time but I knew it would happen,” Bellina said of the Senate victory. “I’m proud to be a part of it.” ••

Samantha Bambino can be reached at