Soapbox

Give the dying a fleeting chance

Mike DeBartoli, at his Tracy home with his weekly pop-up pill organizer, is advocating for a bill to allow terminally ill Californians to use drugs without full FDA approval.
Mike DeBartoli, at his Tracy home with his weekly pop-up pill organizer, is advocating for a bill to allow terminally ill Californians to use drugs without full FDA approval. mcrisostomo@sacbee.com

As a firefighter, I spent my career saving lives. Now I need Gov. Jerry Brown to give me a chance to save my own.

I woke up one morning with some cramping in my hands. Doctors soon confirmed what no one should ever hear: I had ALS, a fatal disease with no cure and limited treatment options.

As my disease has progressed I’ve lost total use of my left hand and have very limited use of my right. Daily tasks such as dressing, cooking, eating and writing are very difficult. Though I have experienced and talented neurologists who I see every three months, they can only measure my constant, predictable decline.

There is no treatment that cures ALS, but there are a few in clinical trials that have shown promise in slowing its progression. With overwhelming bipartisan support, the Legislature passed Assembly Bill 159 to allow doctors treating the terminally ill to prescribe treatments that are being safely used in clinical trials but have not been fully approved by the FDA. This “Right to Try” law is already in place in 24 other states, and is now on the governor’s desk.

For terminally ill patients who have exhausted all approved options, this law provides hope when we need it most. The vast majority of people diagnosed with a terminal illness cannot qualify for clinical trials. We’re generally too sick, our disease too advanced. Imagine the anguish of knowing that there is a promising drug out there, but to be too sick to be given access to it.

Some people have said this law is unnecessary because the Food and Drug Administration allows very sick people to apply to try new drugs in clinical trials. That is certainly helpful to the 1,000 Americans each year who make it through the application process. But for the millions of others who don’t have the time or resources, this law will get promising medications into their hands now, not months from now.

A Pasadena-based company called Genervon is developing a treatment for ALS that is so promising that the FDA has said it should be considered for fast-track approval, but that means at least three more years. The average life span for someone with ALS is three years.

As I have become active in the ALS community, it has become abundantly clear to me that no one believes there’s a miracle cure out there. But we do believe there’s a chance that some of the promising drugs and therapies currently being tested could give us a little more time – a little more time to walk on the beach with the people we love, to watch our children grow up and to cross a few more things off our bucket lists.

Right to Try gives us the hope of time.

Mike DeBartoli is a former Sacramento firefighter.

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