Right to Try Foundation to Provide Financial Assistance to Patients Seeking, but Unable to Afford, Experimental Drug Treatment Under Utah’s Proposed Right to Try Legislation

SALT LAKE CITY--()--Last year, Andrea Sloan lost a seven-year battle with cancer. Had Utah’s Right to Try legislation (HB 94) been in place, it could have given her access to experimental drugs that might have prolonged her life. In addition, the Right to Try Foundation, a non-profit organization announced today, could have provided financial assistance were she not able to afford the treatment.

“This Right to Try legislation overcomes an inefficient process of delays and denials.”

If passed, HB 94 will provide terminally ill patients the right to work with their doctors and pharmaceutical or medical device companies to gain access to potentially life-saving therapies that have passed Phase 1 of the Food and Drug Administration’s trials. HB 94 is being heard in the 2015 Utah Legislative Session and received a unanimous favorable recommendation from the House Health and Human Services Committee on February 9, 2015.

House sponsor Representative Gage Froerer (R-Huntsville) said, “This Right to Try legislation overcomes an inefficient process of delays and denials.” He refers to Andrea’s case. Andrea sought expanded access to an experimental medication under the FDA’s compassionate use program. Despite gathering 300,000 petition signatures, an appearance before Congress and a year-long battle with a drug company, her efforts to access the experimental medication were ultimately unsuccessful. Andrea died on New Year’s Day 2014.

“We must remove the barrier to drug access. That is what HB 94 does. However, that alone is not enough if we do not address financial inequities that may prevent some from having the same treatment opportunities as others,” said Jonathan Johnson, founder of the Right to Try Foundation and the chief supporter of HB 94.

The newly formed Right to Try Foundation will be accessible to Utah patients with a household income of $75,000 or less who meet the access criteria of the legislation. The Right to Try Foundation will be governed by prominent business and health care leaders including Gary Crocker, president of Crocker Ventures and chairman of Merrimack Pharmaceuticals; Trish Schumann, chief marketing officer for Arches Health Plan; and Randy Horiuchi, former Salt Lake City councilman and vice president at Mountain West Small Business Finance.

“We will begin raising private funds immediately and although we don’t necessarily expect pharmaceutical companies to participate, we hope they would see the benefit of being involved. We also hope that other states will look to HB 94 and the Right to Try Foundation as an example of something they should try to replicate in their own state,” Johnson said.

Both HB 94 and the Right to Try Foundation break new ground in compassionate drug use by giving patients the ability to control their end of life treatment by giving expanded access to experimental medications. “If drugs are available to heal or prolong life and patients are willing to take the risk, shouldn’t we bridge the gap with legislation that rewards their courage with opportunity?” asked Johnson.

“One can only imagine the frustration of knowing potentially life-saving drugs are available, but either bureaucratic red tape or inability to pay keeps them out of reach,” said Froerer. “The Right to Try legislation and the creation of the Right to Try Foundation are definitive actions on behalf of those who have the most to lose.”

Contacts

Right to Try Foundation
Alex Iorg, 801-400-8160
iorg.alex@gmail.com