Proposal would give Illinois' terminally ill right to try unapproved drugs

Illinois residents with terminal illnesses might soon be able to use treatments and drugs not yet approved by the U.S. Food and Drug Administration.

State Sen. Michael Connelly, a Lisle Republican, introduced “right to try” legislation that was approved by the Senate, and similar legislation introduced by state Rep. Greg Harris, a Chicago Democrat, passed through the House.

The proposal would allow Illinois residents judged to have less than two years to live who have exhausted all other options to try unapproved drugs and treatments that might still be in testing stages.

Both Connelly and Harris applaud the bipartisan support of the initiative.

“It doesn't seem to matter if you're liberal, conservative, moderate, Republican or Democrat, they seem to be all signing this bill,” Connelly said.

The Illinois State Medical Society isn't fully on board with the proposal.

“ISMS supports the concept of providing additional therapeutic opportunities for terminally ill patients,” said Illinois State Medical Society President Scott Cooper. “We do have concerns with this legislation because little is actually known about the effects of these experimental drugs and the consequences of their use.”

But Connelly argues that even drugs that are approved by the FDA can have serious side effects like “bleeding from the ears, heart murmurs and death.”

“The side effects of not doing something we know is death,” Connelly said.

The proposed measure also includes that insurance companies may, but are not required to, provide coverage for patients using experimental drugs and treatments.

“If the insurance carriers wish to cover it they may, if they don't want to they don't have to,” Connelly said. “It's more permissive. If doctors and pharmaceutical companies and insurance carriers all agree, then let's get started and allow them access to the medication.”

Harris says nobody really knows how many Illinois residents this proposal would help. He says similar legislation was passed by 14 other states in the past year.

“It's a bill that this year seems to be sweeping the country. Maybe it was the ‘Dallas Buyers Club' movie or the ALS bucket challenge,” Connelly said. “I've been hearing stories about people not getting access to medication that may either reverse the effects of ALS or slow it down.”