“OK, now everybody clap,” Governor Gary Herbert said after signing a ceremonial copy of House Bill 94 Wednesday afternoon at the the State Capitol.
Representative Gage Froerer (R – Huntsville) was the bill’s sponsor. It releases doctors from potential liability if their patients opt for experimental treatments and eliminates much of the red tape that previously stood between patients and non-approved pharmaceuticals.
“This is really about the hope that these people should have as they try to save their lives,” Rep. Froerer told ABC4 News just before the signing.
Jonathan Johnson is the Chairman of Overstock.com and the head of Utah’s Right to Try Foundation. His late father once volunteered to test an experimental drug to treat his leukemia.
“He said ‘I don’t want to go through chemo again. I’m more than willing to try an experimental drug if it helps the drug companies and it might help me, it might not’,” Johnson recalled. “His doctor said ‘It’s too much work’. Well, the work wasn’t work for my father. It was the hundred hours of paperwork that the doctor had to do. The Right to Try law gets rid of that hundred hours of paperwork.”
7 year old Bertrand Might suffers from an extremely rare and deadly genetic disorder which only about 30 kids worldwide are known to have. His mother Cristina says that’s too few to conduct a clinical trial on a medication that could save him.
“So we’ve been watching our kids die and get worse when we know that there’s a treatment that could potentially save their lives or at least stop the damage from accumulating,” Mrs. Might said. “It’s been heartbreaking and with the passage of this bill we’re hoping that other families don’t have to lose a loved one when they know there’s a drug or a device sitting on a shelf somewhere that could save their lives.”
Cristina acknowledges that it may be too late to save her son, known to his family as “Buddy” but she wants to make sure that no other family needlessly endures what hers has been through.
“It’s more than just a right to hope and in some cases, that’s the only thing that they have,” Mrs. Might said. “It’s just the right thing to do to give these families the option.”
Utah becomes the 9th state in the country to enact “Right to Try” legislation.