- Associated Press - Friday, January 30, 2015

SPRINGFIELD, Ill. (AP) - Two Illinois lawmakers want terminally ill patients to have access to experimental and unapproved treatments.

The “Right to Try” legislation, filed Wednesday in the Senate, would allow people with terminal illnesses to contact manufacturers about new treatments if they’ve exhausted all others approved by the U.S. Food and Drug Administration. Patients would still need a doctor’s approval to seek such drugs, treatments or devices, but the measure would open the door for options that otherwise aren’t available.

Republican State Sen. Michael Connelly of Lisle and state Rep. Greg Harris, a Chicago Democrat, spoke about their effort Friday morning in Chicago.

If approved, Illinois would join six other states - including Arizona, Colorado, Louisiana, Michigan and Missouri - that have similar laws for the terminally ill.

Harris said clinical trials are an option for patients wanting experimental treatments, but that’s not a viable option for everyone.

“When you’re doing technical clinical trials, often the criteria for enrolling in the clinical trials are very narrow,” he said.

It can be years before drugs leave the clinical-trial phase and get approval by the FDA.

Connelly said the 2014 movie “Dallas Buyers Club,” based on an AIDS patient who created a business to bring experimental drugs from other countries into the U.S., and the summer’s ALS ice-bucket challenge videos brought attention the issue of being more lenient on drug restrictions.

Patients with ALS, a neurodegenerative disease, want access to experimental drugs, because so many drugs fail to leave the testing phase due to patent issues and other problems, said Joumana Baroody, director of care services for the ALS Association Greater Chicago Chapter.

“They look for any hope,” Baroody said. “This is progressive illness with no cure.”

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The bill is SB29.

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