Upcoming IHRSA Board Chair, Jim Worthington, Instrumental in Passage of the Right to Try Bill
Posted: May 23, 2018 in Independents, Other News
Jim Worthington and Senator Ron Johnson
NEWTOWN, PA – On May 22, 2018, the Right to Try Bill was passed by the House of Representatives in Washington, DC. This bill was first passed in the Senate (S 204) in August 2017. It finally passed the House and will now proceed to the President’s desk for signature, which he has indicated he will sign.
Jim Worthington has put all his resources and connections behind supporting this bill because of his connection to Matt Bellina, who suffers from ALS, a terminal illness giving him 2 – 5 years to live. Jim first met Matt in 2015 when he joined the Newtown Athletic Club, and they began raising money for Matt’s Mission to support Augie’s Quest and ALS TDI research.
Realizing that although raising money for research was crucially important, Mr. Worthington felt there may be more to do and asked Matt what else could be done to improve his situation. Matt mentioned the Right to Try bill which at that time was not even officially introduced in the halls of Congress. It was at that moment that Jim decided to work to pass the legislation, and with almost naïve enthusiasm dove into the endeavor never realizing that bills like this take many years to pass into law, if ever.
Together with Matt Bellina, Mr. Worthington has been a leading national advocate for this legislation. The Right to Try Act, which bears Matt Bellina’s name, would allow terminally ill patients in America to access experimental treatments which have passed FDA Phase 1 trials, but are not yet fully approved. This law gives any terminally ill individual hope and the control over their own life without interference from the government. Nonetheless, there are checks and balances built into this bill to protect patients, physicians and pharmaceutical companies providing the drugs.
After almost 3 years of advocacy under the umbrella of Mr. Worthington’s Have a Heart Foundation the bill is finally poised to land on the president’s desk. “This is perhaps the most profound and life changing endeavor of my lifetime thus far and is the culmination of much blood, sweat and tears on the part of a small group of patients, their families and a handful of dedicated advocates. I am humbled to be counted among those who were instrumental in making this happen,” explained Worthington.
The Right To Try Bill was first introduced by Senator Ron Johnson of Wisconsin and co-sponsored by Senator Mike Donnelly of Indiana. The House version of the bill was introduced and co-sponsored by Representative Andy Biggs of Arizona and Representative Brian Fitzpatrick of Pennsylvania. Over the many months of lobbying and advocacy, Mr. Worthington traveled to Washington DC many times to meet with legislators personally and to support Matt Bellina as he testified in several Congressional hearings on the matter.
Once the bill is signed into law, terminally ill patients across the nation will be able to request direct access to experimental drugs that meet the guidelines of the law by passing Phase 1 FDA trials, receiving recommendation by their physician and securing availability from the pharmaceutical company.
In the case of Matt Bellina, his hope is to now be able to receive a drug, formerly only available in Israel, which has demonstrated a reduction of the progression of ALS in other patients. Under the new Right to Try Law this drug could be administered to him in the United States.
This is a great day in our nation for the rights of our terminally ill citizens.
