Delaware Voice: Colin Bonini

There’s been a lot of discussion over the past few years about the economic disparity between the top 1 percent of income earners and the other 99 percent. But there’s a different 1 percent that I’ve been fighting for, and this week Delaware’s U.S. senators will get the chance to help them, too.

I’m talking about the 1 percent of Americans with terminal illnesses who can’t be helped by medications already on the market, can’t qualify for a clinical trial and can’t get help through a special program at the FDA.

Sens. Carper and Coons this week will be asked to approve a bill that would speed access to promising new treatments for dying people who need them now.

S. 2912, the Trickett Wendler Right to Try Act, would clear the way for drug and device manufacturers to provide investigational therapies to terminal patients if a patient and his or her doctor think it might help.

This law is designed to support the implementation of state-passed Right to Try laws like the one that I have introduced, along with bipartisan co-sponsors, the past two legislative sessions.

Right to Try gives terminally ill patients who have exhausted all their options a new way to access potentially life-saving drugs that are being safely used in clinical trials, but are still under review.

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Fewer than 3 percent of all cancer patients are able to enroll in clinical trials, and for other diseases like ALS, it’s even lower. And for rare diseases like deadly Duchenne muscular dystrophy, it’s lower still. Only a very few lucky patients are able to access promising treatments before they are widely available. And only the very wealthy can afford to travel to other countries to be treated with drugs before they are available in the United States.

There’s another avenue for early access to treatments for patients facing life-threatening illnesses. The FDA has a program called “compassionate use” that allows sick people to file an application with the government to ask permission to use a drug that is still under review. This application process is complicated and time-consuming for patients, doctors and drug companies. In all, only about 1,200 people are being helped every year through the FDA program. By contrast, in France, a country with a population one-fifth the size of America’s, 12,000 people are helped each year through their government’s similar program.

The FDA often boasts that it approves 99 percent of the compassionate use requests it receives. But what about the other 1 percent?

What about the 1 percent of patients who have exhausted all their options, who cannot enroll in a clinical trial, and whose application for early access to a drug is denied by the FDA.

If those people still have fight left in them, we shouldn’t tell them to go home and die. We should give them another option for early access to promising treatments.

That’s where Right to Try comes in. Right to Try opens a third avenue for patients facing life-threatening illnesses to access safe treatments before they are available to everyone. There are many protections for patients and doctors built into this law so that no one who is fighting for his or her life is taken advantage of by someone looking to make a quick buck. We’ve made sure that patients will be informed of the risk that could come with taking a drug where all possible side effects are not yet known. And we’ve made sure that doctors who help people won’t be hauled into court on frivolous claims.

Right to Try laws have been adopted in 31 states, blue, red and in between. We learned last week that more than 75 terminal cancer patients have been treated with a promising treatment in Texas. The doctor said that most of the people he has treated have been given only three to six months to live; but now, a year later, they are still with us.

If you or one of your loved ones was facing a terminal illness and you’d run out of options, you’d want to know you did everything you could. Right to Try gives people one more chance. What could be the harm in that?

State Sen. Colin Bonini has introduced the Delaware Right to Try Act.