SACRAMENTO -- Photographs and mementos from 28 years of fighting fires cover the walls of Mike Debartoli’s home in Tracy. Memories, from a career cut short.
“I can talk, I can think, I can swallow, and I can breathe and hear,” said Mike. “That’s about it.”
Five years ago, the former Sacramento Fire captain was diagnosed with ALS. It’s a rare disease that causes patients to lose control of their muscles. For Mike, every breath is a struggle. The muscles supporting his lungs are getting weaker every day. It’s hard to lift his arms. He can’t walk. He must rely on his wife, Gina, for almost everything.
“I couldn’t tie my shoes,” Mike explained. “I couldn’t put on my clothes.”
ALS is deadly and there is no cure. But Mike hasn’t given up hope just yet.
His hope hangs on a new California law that went into effect in January. Known as “Right to Try,” the law allows terminally ill patients, with the support of two doctors, to use experimental medication. Thirty-five states across the country have passed similar legislation. Under California’s law, patients can use drugs that have passed only “Phase One” of testing. That phase only tests drugs for safety, not effectiveness. It can take more than a decade for a new drug to be approved by the FDA.
“For anyone with a fatal disease, there’s a clock ticking. Time is the most valuable resource” said Mike.
Using the new law, he wants to try an experimental drug made by Genentech. The Bay Area-based biotech company is testing it as a possible ALS treatment. Mike says he’s reached out to the company to see if he can use the medication, but he hasn’t been approved yet. We reached out to Genentech for comment. They told us the company “does have a policy on access to our investigational medicines in certain circumstances,” and that they “review each request on a case-by-case basis, and have criteria to guide these decisions.”
“If we could just get one person through, that’s a start” Mike told FOX40.
Right to Try has been legal in the Golden State for more than five months, but it’s not clear if anyone has benefited yet. The law doesn’t force drug companies to give out experimental medication to dying patients. Supporters say, drug manufacturers may fear their drug will be blocked by the FDA if a Right to Try patient dies during treatment.
But the man behind the law, Assembly Majority leader Ian Calderon (D-Whittier), says companies should take a chance, regardless of the potential backlash.
“Have a little compassion and understanding,” Calderon said. "If somebody is coming to you to try something, I get that there are risks. But also, at the same time, this is someone’s life.”
Critics, including the California Nurses Association, are against Right to Try, arguing it turns dying patients into guinea pigs, and that it has removed important safety standards from new drugs.
“We’re guinea pigs already,” Mike said. “That’s how they use people with diseases. Phase two, phase three studies -- we have to have guinea pigs to start off.”
Mike knows his time is running out, and he may never get the experimental drugs he wants. But he hopes his journey will save lives.
“I hope that some of the work I’m doing now will help somebody in the future,” said Mike.