Imagine going to the doctor for a routine checkup, only to find out the crushing news that you have terminal cancer. After exhausting all available treatment options, and months of trying a host of different medications without success, your doctor learns about a new drug under development that's showing promise for people with the same type of terminal illness. It's being used safely in other countries, and even winning research awards, but it isn't yet fully approved in the U.S. In an effort to access this potentially life-saving treatment option, you apply to participate in the clinical trial, but you're denied because you are "too sick."
This is the sad plight of thousands of Americans each year, fighting to survive in the face of a fatal diagnosis. It is estimated that more than one million Americans die from terminal illnesses each year, and of those who attempt to gain entry into clinical trials, fewer than three percent are accepted. So, what about the other 97 percent?
The Food and Drug Administration does have a program in place for accessing investigational drugs, called "compassionate use." However, given the incredibly time-consuming and complicated application process, only about 1,000 people make it through each year. The application form alone is estimated to take 100 hours for a doctor to complete. It shouldn't take 100 hours and miles of bureaucratic red tape to show compassion to the people who need it most. Despite the FDA's announcement in February 2015 of plans to shorten the application, the form has yet to be made available. And the application is only the first step in an often multimonth approval process, as paperwork must then make its way through the FDA and to a separate Institutional Review Board.
Meanwhile, patients and families who can't afford to wait are forced to watch the slow wheels of bureaucracy turn, some patients dying while their application is still being considered. There is hope, though, and something we can do to help Alaskans in this paralyzing situation.
In April 2015, I introduced a bill that would allow terminally ill patients who have exhausted all available treatments, and do not qualify for clinical trials, to gain faster access to safe, but experimental drugs that could potentially save their lives. This January, Rep. Scott Kawasaki and Rep. Harriet Drummond joined me in co-sponsoring a companion bill in the House, HB 215. By providing certain immunities to prescribing physicians, manufacturers and distributors acting in good faith, Senate Bill 113 would allow terminal patients, in consultation with their doctors, the freedom to try new treatments as they fight to survive, without the burden of waiting for full federal approval.
In just more than a year, 24 states have signed "Right to Try" into law with overwhelming bipartisan support, and 22 other states have legislation pending. It's clear this is not a political issue, but a deeply human one that goes beyond state and party lines.
No one should face a death sentence because of a bureaucratic process. In providing terminally ill patients the ability to access safe but experimental drugs in consultation with a doctor they trust, this bill offers new hope when all FDA-approved options have been exhausted.
It's time to allow people the freedom to make their own health care decisions when their lives hang in the balance. Terminally ill Alaskans deserve the right to try.
Sen. Bill Wielechowski, a Democrat, represents East Anchorage and JBER. He was first elected in 2006.
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