David Huntley was the picture of health. A San Diego State University professor and a triathlete, he never expected to face a disease that would stop him in his tracks in his 60s. But that’s what ALS does. It comes on fast and there’s no way to stop it.
We met David and his wife Linda earlier this year when they came to Sacramento to support a bill we had sponsored, AB-159 the California Right To Try Act.
Right To Try allows doctors to prescribe to terminally ill patients medicines being used safely in clinical trials. The goal of this legislation is to get promising new medications into the hands of people who have exhausted all their options and need one more chance to try to save or extend their life.
David was already wheel-chair bound and had to use a machine to talk, but his testimony was extremely powerful and helped lead to the passage of this bill in both the State Assembly and State Senate with overwhelming bipartisan support.
Sadly, David passed away just a few short weeks later. David’s tragic story has been repeated too many times in the United States. Medical researchers who develop promising new treatments typically spend a decade and $1 billion to maneuver through the FDA’s approval process. While a promising medicine is under review, only a tiny fraction of all patients who could benefit ever gain access through a clinical trial.
The FDA does have a process that allows patients to seek permission to access investigational medicines. But this “Compassionate Use” process requires a massive amount of paperwork and hundreds of hours to navigate. There are dozens of documented cases of people dying while waiting for approval.
But Americans shouldn’t have to ask the government for permission to try to save their own lives. They should be able to work with their doctors directly to decide what potential treatments they are willing to try.
Right To Try is an effort to help sick and dying Californians get access to the medications that could save them more quickly. Under the law, terminally ill patients would be able to work with their doctors and companies with promising new drugs that have already passed FDA safety tests to take those drugs without having to enroll in a clinical trial.
California wouldn’t be acting alone. Twenty-four other states have adopted Right To Try laws. In every state where the law has been considered it has been approved by wide margins by both Republicans and Democrats. This is a rare non-partisan issue in today’s fractured political climate.
But what could be partisan about giving a dying person the right to try to save his own life?
Right To Try is also having an impact on Washington. Earlier this year, in response to this national movement, the FDA announced plans to revise the paperwork that doctors must submit to request permission to treat a terminally ill patient with an investigational medicine. The FDA said its goal is reduce a doctor’s time to apply from 100 hours to 45 minutes.
That’s a great move in the right direction, but it’s not enough. Even though the forms in the first step of the process will be shorter, patients will still be required to submit an application asking the federal government for permission to try to save their own lives.
We need to remove barriers that prevent doctors from providing the care they are trained to give. And that’s exactly what Right To Try will do. People should have access to the medications that could save them with no exceptions and no permission slip required.
AB 159 is on Governor Brown’s desk, waiting for his signature. David Huntley didn’t live to see him sign it. But let’s hope every other terminally ill Californian has the chance to benefit from the new options this law will provide. If this law has the potential to save even one person’s life, we should let them try.