Commonwealth Journal

Columns

May 17, 2014

Patients should have ‘right to try’

Somerset — For years many have argued the merits of euthanasia. There are people who believe terminally-ill patients should have the right to die on their own terms. It’s certainly a notion worth consideration. If you’ve ever seen a loved one be eaten away by a debilitating disease, with no cure or relief in sight, you might agree with the likes of the infamous Dr. Jack Kervorkian.

But recently a more optimistic group hurdled some legal obstacles in a piece of groundbreaking legislation that offers hope to seriously ill individuals.

The “right to try” law in Colorado allows terminally ill patients to obtain experimental drugs without getting federal approval. It's a proposal being advanced in several states by patient advocates who are frustrated by the years-long federal approval process for experimental drugs in the pipeline.

It would be a maddening process to watch a parent, spouse or child wither away, knowing there are drugs in the works that might battle their ailment.

But until Colorado Gov. John Hickenloope signed his state’s bill into law yesterday, no government entity had attempted to bridge the gap between a dying patient and a drug that is out of reach because it isn’t FDA-approved.

"There are experimental drugs out there that can and do save lives, and access needs to be expanded," Amy Auden of Lone Tree, Colorado told the Associated Press. Her husband, Nick Auden, died in November at the age of 41 after unsuccessfully lobbying two drug companies to use an experimental treatment outside of clinical trials. Auden had acknowledged there was no guarantee the drug would work.

Auden was willing to try anything to stay with his family a little longer.

It’s tragic he didn’t live to see legislation in his state passed. But now many people who are facing death have been given a fighting chance.

Supporters call it a ray of hope for dying patients trying to navigate the red tape of existing "compassionate use" guidelines for obtaining drugs outside clinical trials. The process requires federal approval.

"When you're terminal and there's a drug out there that might help you, it can seem that the obstacles to get that drug are insurmountable," said state Sen. Irene Aguilar, a physician who co-sponsored Colorado's bill.

Aguilar dubbed the measure the "Dallas Buyers Club" bill, after the movie about a determined AIDS patient who smuggled treatments from Mexico because they weren't cleared for use in the U.S.

Colorado's bill got a careful no-comment from state doctors' groups, hospitals and health insurers. The bill was amended to clarify that health care providers and insurers aren't liable if a patient who uses a drug outside clinical trials gets sick or dies.

While the law is a strong statement on behalf of dying patients, many believe state-level approaches that attempt to circumvent the federal system might not work.

"The FDA regulates drug development, and this doesn't do anything to change that," Dr. David Gorski, a surgical oncologist and editor of the blog Science Based Medicine, told the Associated Press.

Gorski said a drug company "wouldn't do anything to endanger a drug they're potentially spending hundreds of millions of dollars to bring to market" through elaborate FDA trials.

So again it comes down to money, as so many things do. But hopefully if a desperate, dying patient is willing to be a drug company’s guinea pig, they will at least have a shot at being given the opportunity.

It’s a good law — a compassionate law. Similar bills await governors' signatures in Louisiana and Missouri, and Arizona voters will decide in November whether to set up a similar program in that state.

Let’s hope Kentucky joins the ranks soon.

Jeff Neal is the Commonwealth Journal news editor.

Contact him at jneal@somerset-kentucky.com

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