SPRINGFIELD, Ill. — Some doctors worry that an effort to grant terminally ill people more access to unproven drugs might offer them false hope or even be harmful, but advocates for a "right to try" say patients should have more opportunities for treatments that could extend their lives.
Legislation with bipartisan support that was approved by Illinois House and Senate committees would create a Right to Try Act, letting patients seek treatments with their doctor's consultation that have passed only the first phase of U.S. Food and Drug Administration testing. Backers expect the legislation to come for a final vote soon after lawmakers return to session Tuesday.
The conservative libertarian think tank behind the effort in Illinois has already successfully lobbied for similar acts in more than a dozen states, most Republican-leaning. Indiana's Republican Gov. Mike Pence signed that state's Right to Try Act in March.
"People should have the freedom to do everything they can do save their lives," said Kurt Altman, national policy adviser and general counsel for the Arizona-based Goldwater Institute. He has testified to Illinois lawmakers on the Right to Try effort.
Doctors and their professional organizations say the issue is more complex. They say there are practical and ethical problems with opening the door to drugs that haven't gone through rigorous U.S. testing for safety and effectiveness.
"I think it's far more likely that we'll do more harm than good," said Dr. Christopher Daugherty of the University of Chicago's MacLean Center for Clinical Medical Ethics. He acknowledged that the choice ultimately should come down to the patients and their doctors.
Illinois' proposed Right to Try Act defines what it means to be a "terminal" patient and outlines the requirements before someone can get access to a treatment. It specifies that the drugs have to make it through the first phase of testing and remain in the next two stages to be used.
Thirteen states in the past two years have passed Right to Try acts. Lawmakers in about 20 others are considering similar measures.
Rep. Greg Harris, a Chicago Democrat, is the chief sponsor of the measure in the Illinois House. Sen. Michael Connelly, a Republican from suburban Wheaton, is the main sponsor of the Senate version.
Full FDA drug approval can take years, experts say. Bringing a drug from lab to the shelves can cost a pharmaceutical maker up to $1 billion. And there's no guarantee a potential new treatment will even make it all the way through the testing process
An extremely small number of people can be selected for clinical trials, which is one way to gain early access to drugs, experts said. Some drugs are available in other countries with less-stringent testing. But laws prevent them from being used in this country.
William McDade, president of the Illinois State Medical Society, said in a statement that the organization of doctors and other medical professionals has concerns "because little is actually known about the effects of these experimental drugs and the consequences of their use."
Daugherty, a professor of medicine at University of Chicago and chair of the Biological Sciences Division Institutional Review Board, said that using unproven drugs is "probably only an appropriate decision for some patients."
Most drugs "die on the vine" during the testing process, Daugherty said. A drug could show early promise but have problems during later testing. Daugherty said he has doubts pharmaceutical companies would be willing to risk releasing a drug early.
Other pathways for access, such as for emergency or compassionate use, already exist for drugs still in the testing phases, Daugherty said.
While asking doctors to take a risk on prescribing unproven drugs would be problematic, Daugherty said he believes it is a reasonable argument that patients "should be able to decide how much risk they want to take with the life they have left."
The bills are HB1335 and SB29.