Right to Try Foundation aims to help terminally ill patients pay for experimental drugs

SALT LAKE CITY — Terminally ill patients who want to try experimental drugs but cannot afford them could receive financial assistance through a foundation formed by Overstock.com chairman of the board Jonathan Johnson.

The launch of the Right to Try Foundation was announced early Wednesday morning. The announcement comes as Utah lawmakers are considering HB94, legislation that would allow terminally ill Utahns to try drugs and medical devices that have not received full Food and Drug Administration approval.

Earlier this week, the House Health and Human Services Committee gave unanimous approval to the bill, sponsored by Rep. Gage Froerer, R-Huntsville. The measure would allow patients who have exhausted traditional treatments to sidestep the FDA’s approval process. The bill is now before the House.

During lengthy committee debate on the bill, the issue of “who pays” was a point of contention, whether that would be insurance companies, pharmaceutical companies, taxpayers or patients themselves.

“We must remove the barrier to drug access. That is what HB94 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,” Johnson said.

The Right to Try Foundation would provide financial help to households with incomes of $75,000 or less, who meet the access criteria of the legislation.

The foundation will be overseen by 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 County councilman and vice president at Mountain West Small Business Finance.

Johnson said his father underwent chemotherapy for leukemia and was told he was cancer free, but it returned six months later. He then wanted to try experimental drugs to treat leukemia, but his physician told him that the FDA’s compassionate use application would take up to 100 hours to complete, and “it may or may not be granted.”

Johnson said his father wanted to try experimental treatment even if it didn’t arrest his leukemia because there could be some societal knowledge gained from the course of treatment. He opted not to endure chemotherapy a second time, Johnson said.

“He let the leukemia play out and he eventually passed away,” he said.

HB94 could have helped his father, Johnson said. It also could help people who have exhausted other treatments and want to try a drug that has Phase I FDA approval in an attempt to save their lives.

“I think what’s important to remember is we’re dealing with terminal patients who have little or no hope. There are often drugs that have passed Phase I FDA but aren’t through four or five stages, and they can’t get access to them,” Johnson said.

The private Right to Try Foundation will allow people who qualify and can’t afford experimental drugs an opportunity to attempt another means to save their lives.

“I think there are a lot of ways to solve problems that don’t involve the government,” he said.

Johnson said he became interested in “Right to Try” laws after a friend sent him a news article about the passage of Colorado’s law last year.

“I said, ‘We’ve got to work on this.’ It passed in five states last year, and I think Utah is one of five or six looking at it,” he said.

“To me, it’s democracy in action. If the states are laboratories of democracy and other states pass good laws, we should copy them,” Johnson said.

The private foundation will allow people who qualify and can’t afford experimental drugs an opportunity to attempt another means to save their lives.

“I think there are a lot of ways to solve problems that don’t involve the government,” Johnson said.

The FDA has taken notice of the passage of “Right to Try” laws in other states and consideration of such laws in others, he said.

A recent commentary in the Wall Street Journal noted a recent announcement by the FDA that it would “simplify and accelerate” the application process for “unapproved investigational drugs” that have passed Phase I safety trials.

“By Utah doing what it is doing, people in other states are getting the benefit as the FDA loosens its grip,” Johnson said.

Email: marjorie@deseretnews.com