The "right to try" legislation would permit terminally ill patients to take experimental drugs that have passed the first phase of the FDA process.
When Connecticut's legislative session ends at midnight Wednesday, hundreds of pending bills will fade away without a vote.
A proposal that would give terminally ill patients the right to try experimental drugs has been ready for a vote in the House of Representatives since April 21, and is unlikely to be taken up before Wednesday night's deadline.
House bill 6709 would permit a terminally ill patient to take experimental drugs that have passed the first phase of the FDA process. The so-called "right to try" movement is gaining momentum, and this year alone, some two dozen states are considering similar legislation.
"I can't imagine anything in my life, any problem having to address and being told there are no options," said Republican State Representative Noreen Kokoruda, one of the co-sponsors of the proposal. "This bill gives them that tool, gives them that option, and gives them, potentially, hope."
"I think my main opposition to 'right to try' laws is that it is false hope," said Arthur Caplan, director of the division of medical ethics at the NYU-Langone Medical Center. "You still have to go to the [drug] company, and the company makes the decision whether it wants to give you a medicine, or a drug, or a vaccine that's still in the process of being approved, and there is nothing about the law that makes them give it to you."
In fact, Caplan said pharmaceutical companies have a legitimate worry about distributing drugs in the FDA pipeline. For instance, if a terminally-ill patient dies while taking the drug, it could delay or even derail the FDA approval process.
Caplan said another issue is that the FDA already grants almost all terminally ill patients access to experimental drugs. "Right to try" advocates say the current FDA process is too cumbersome and time consuming, but Caplan isn't buying it.
"If the FDA is a roadblock, it's not much of one," said Caplan. "In fact, just three months ago the FDA sped up the process by refining their website, so that doctors can basically make requests for patients, and it shouldn't take more than an hour or two to complete the process."
Caplan suggested that for "right to try" to actually work, the bill should be open to more than just terminally ill patients, and should create a fund to help pay for the experimental drugs, as well as a travel stipend in case the drug can only be administered out of state.
This is the first year "right to try" legislation has come before the general assembly. If medical marijuana and other controversial bills are any indication, "right to try" could take several sessions before it gathers enough support, and becomes law.