‘Right to try’ advocates rally for access to experimental treatments

Rep. Matt Salmon, R-Mesa, said his “right to try” bill would give terminally ill patients access to promising experimental drugs before they win final FDA approval. (Photo by Sophia Kunthara/Cronkite News)

Flags were planted on the West Lawn of the Capitol to represent the number of lives lost to ALS – Lou Gehrig’s disease – which has multiple treatments in clinical trials. (Photo by Sophia Kunthara/Cronkite News)

Sen. Ted Cruz, R-Texas, said there is no reason why treatments approved for use in other countries should not be available to patients in the United States. too. (Photo by Sophia Kunthara/Cronkite News)

WASHINGTON – When Paul Rushin’s mother was diagnosed with breast cancer in 2013, she underwent 18 weeks of chemotherapy before being told she was cancer-free. But in 2015, the cancer was back and had spread to her left hip, inoperable and leaving the Anthem woman facing chemotherapy for the rest of her life.

“Being on chemo for the rest of your life, that’s no way to live, either,” said Rushin, who was in Washington Thursday to rally with others for “right to try” legislation, which would allow terminally ill patients to access treatments before they get final approval from the Food and Drug Administration.

Rep. Matt Salmon, R-Mesa, recounted meeting a patient with ALS – amyotrophic lateral sclerosis, or Lou Gehrig’s disease – who noted that several states have “right to die” laws that let terminally ill patients commit physician-assisted suicide, but few have right-to-try laws for patients to try and save their life.

“They have a right to try, a right to life, a right to at least self-defense,” said Salmon, sponsor of a right-to-try bill in the House.

Salmon’s bill would allow terminally ill patients to try treatments that have successfully gone through the first phase of a clinical investigation, but haven’t been approved by the FDA. Advocates say FDA approval can take years, even for drugs that have already been approved in other countries.

Salmon said he was pushing for the law in honor of his friend, late Arizona state Rep. Laura Knaperek, who advocated for a successful right to try ballot initiative the state in 2014. Knaperek died of of ovarian cancer in March.

“While she isn’t here on this Earth anymore, her spirit goes on and this fight goes on,” Salmon said. “And as far as I’m concerned, there is no greater responsibility of anybody in Congress than to defend a person’s right to life.”

-Cronkite News video by Keshia Butts

Salmon joined Rushin and scores of other advocates, many with terminal illnesses, to rally Thursday on the West Lawn of the Capitol. Sen. Ted Cruz, R-Texas, who signed on to a Senate version of the bill, emphasized that that the change would expedite access pharmaceuticals approved in other major countries.

“There’s no reason on earth why people should be able to get life-saving treatment in Europe or Asia but not here in America,” Cruz said.

Salmon introduced his bill nearly a year ago, but it has yet to get a hearing in the House. A companion bill in the Senate was introduced last month by Sen. Ron Johnson, R-Wisconsin, and has 24 co-sponsors, including Arizona Republican Sens. Jeff Flake and John McCain.

Rushin said the bills offer “a lot more opportunity” for people in otherwise hopeless situations.

For Rushin, who was first introduced to the Right To Try movement while working with an ALS patient to improve his strength and mobility, the legislation would provide hope and options for his mother.

“To watch her decline these past couple of years, it’s been heartbreaking,” he said.

Starlee Coleman, a spokeswoman for the Goldwater Institute, which developed the concept of right to try about three years ago, said the safety risk of a terminally ill patient is the same risk that anyone participating in a clinical trial would have.

“If it’s safe enough to give to people in a clinical trial, it’s safe enough for a dying person to try.”