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Terminally Ill Patients and Their Loved Ones Push for Greater Access to Experimental Drugs

ALS Association Wisconsin Chapter
In a video for the ALS Association, Waukesha resident Trickett Wendler shared her struggle with the fatal disease

When all other treatments have failed for people who are terminally ill, some hope to try experimental drugs. However, federal law limits access to such treatments, in most cases, unless patients have been accepted into a clinical trial. One of Wisconsin's U.S. senators is trying to gut that restriction.

Sen. Ron Johnson wants terminally ill patients to be able to use experimental drugs when no other alternatives remain.

His proposal would apply to people with conditions such as ALS, which took the life of Waukesha resident TrickettWendler in March of 2015. During her two-year battle, Wendler documented its devastation in a series of TV interviews on Channel 6.

"There aren't survivors from ALS. It is a disease that causes your brain to stop communicating to your nerves. Your nerves don't talk to your muscles anymore. And eventually you're not able to move and talk...breathing usually becomes the biggest problem," TrickettWendler said.

Trickett Wendler was survived by three children and her husband, Tim. 

Tim traveled to Washington, D.C. to lend his support Tuesday to Sen. Johnson as the Republican announced his Right to Try bill. Tim Wendler told us he favors allowing people to take experimental drugs, even if they're not participating in a clinical trial. He says the standard treatment his wife received was inadequate.

"Trickett was diagnosed three years ago, and she was prescribed the same drug that her father was prescribed 25 years ago...I mean, it's disappointing, there's literally been no progress," he says. Tim Wendler says a Right to Try law would come too late to help his wife. However, he says it could be vital to their children.

"We've got three kids -- 12, 10 and eight. And 20 years from now, God forbid, if my kids or other kids are diagnosed with ALS, it cannot be the same drug prescribed. We should be doing everything that we can to loosen up those regulations, to allow people to have the choice, the right to try," he says.

"When you're looking for something that might prolong life, or -- who knows -- even cure, it's so understandable that people are willing to try anything," Dr. Art Derse says. He directs the Medical College of Wisconsin's Center for Bioethics and Medical Humanities.

Derse says about half the nation's states have approved laws paving the way for greater use of experimental treatments. But he says the laws are moot if the FDA regulates the drugs or procedures. That's where Sen. Johnson's proposed law comes into play.

"If you have a federal law that removes the FDA authority to regulate the use of (experimental treatments) in these situations, now you have ready-made statutes, where in your state you give certain immunities for the physicians who are going to do this, and certain laws that give some immunity to the drug manufacturers," Derse says.

Derse says not everyone thinks it's a good idea to allow more access to experimental treatments. For instance, the Wisconsin Medical Society opposes Sen. Johnson's legislation.

Chief medical officer Dr. Donn Dexter says the organization considers it unsafe to use drugs that haven't gone through the FDA's rigorous approval process.

"While everybody understands the anguish of a terminal diagnosis, just because a person is desperate doesn’t mean that they don't deserve protection," Dexter says.

Dexter says another concern is that the experimental treatments could give false hope to patients and their families. And he adds, if the drugs don't work, they could reduce the precious time that a terminally ill person has left to live.

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