Editorial: 'Right to Try' experimental drugs offers both hope and risk
Imagine being terminally ill. Imagine hearing about a medication that might help you live longer, but you can't have it since the FDA hasn't approved it.
By approving the “Right To Try” bill this week, the Illinois legislature and Gov. Rauner will put fewer terminally ill people in that agonizing situation, or in the position of spending vast sums of money to go to a foreign country to get treatment.
Right To Try legislation is sweeping through state houses — Illinois is the 23rd state to give terminally ill patients access to drugs classed as experimental (the 14th since March). These drugs are not FDA approved for general use, but ones that have cleared the first phase of a clinical trial.
With that big a test group, it won't take long, we expect, for some kind of verdict on how good an idea Right To Try actually is.
Because the jury is definitely out and should the evidence show the law is creating more problems for sick people than it is solving, we would expect the legislature to be as quick about reversing course, or at least revising the law, as it was to pass Right To Try in the first place.
We certainly favor giving patients, in concert with their doctors, a voice in their own futures. Many patients are frustrated with the length of time it takes the FDA to approve drugs for general use.
State Sen. Michael Connelly, a Lisle Republican and co-sponsor of the bill, says Right To Try permits doctors to work with their terminally ill patients, potentially matching them with a pharmaceutical company with experimental drugs or procedures.
“A pharmaceutical company has the ability to say no, or they may say, ‘Yeah, get them involved,'” Connelly said. “Ultimately it allows you into the clinical trial process.”
Both the AIDS Foundation of Chicago and the greater Chicago chapter of the ALS Association supported Right To Try in Illinois.
The Illinois State Medical Society did not, arguing that while it supports greater opportunities for terminally ill patients, too little is known about the effects of experimental drugs.
So which is right? Maybe both.
But as much as patients deserve the right to make their own choices; they also reserve the right not to be scammed or unnecessarily harmed.
There is a litany of potential problems. The first phase of a clinical trial assesses only the toxicity of a drug, not its safety or effectiveness. The patient requesting the drug must consult with a physician — but any physician will do, raising the specter of unethical practitioners setting up shop as paperwork pushers.
Drug manufacturers may or may not charge patients; insurance may or may not cover the costs.
Maybe the worst potential drawback is how terminally ill patients run the risk of bad side effects from unapproved drugs, bad enough that it may hasten their death or destroy what quality of life they have left.
These are the issues that vulnerable individuals and families will face as they debate whether to try to access unapproved drugs.
If patients are well served, Right To Try could be a blessing. If not, it needs to be addressed.
Above all, the Illinois legislature has a responsibility to stay on top of this issue.