Last month, California legislators began debating Senate Bill 128, legislation that would allow doctors to prescribe life-ending drugs to terminally ill patients. In Sacramento-speak, this legislation has “legs” and many expect it could become law this year.
The bill cleared its first hurdle in the Senate Health Committee on March 25 with all Democrats in favor, all Republicans opposed and one abstention: Sacramento Democrat Richard Pan, the committee’s lone physician.
The committee hearing was emotional and moving, but there was something missing. This shouldn’t be an argument merely over whether to ban or permit assisted suicide. Medical innovation, and the obstacles that prevent patients from receiving the benefits of new therapies, should also be part of the conversation.
The authors of SB128 say they were inspired by the tragic case of Brittany Maynard, a Bay Area woman with inoperable brain cancer who chose last year to legally end her life in Oregon rather than suffer any longer in California. She was 29.
Yet innovation is creating new, potentially life-saving opportunities for patients with deadly diseases – and more quickly than ever. Trouble is, many patients are unaware of these cutting-edge treatments, and the absurdly long drug-approval process makes it difficult to access new therapies early on.
What we call “new” cancer treatments are often 8 to 10 years old by the time they reach patients. Why isn’t this a matter of days or months? FDA regulations may have been appropriate for their time, but they’re ill-equipped to address today’s speedy scientific advances.
In 1991, it cost millions to decode individual genomes. Today, it often costs less than $1,000, and can significantly help direct patients to the best treatment for their specific cancer. This could provide critical information in a matter of months to doctors when patients can still benefit.
Instead of putting patients in randomized clinical trials designed before color televisions were widely available, why not let doctors prescribe the newest medicines in real-world settings? Combining “big data” and now-inexpensive computing to analyze treatments could cut drug evaluation times by years. The benefit to patients would be revolutionary.
For patients with brain tumors, several new treatments have passed their first trial phase, with data showing life expectancy has doubled and some patients surviving nearly a decade. But these drugs, and others, will take another decade to reach the market.
Did Brittany Maynard and her family know this? Even if so, they would still have had to fight various review boards and agencies before being granted the right to try to stay alive. This is immoral.
In response, a “right to try” revolt is on the books in Arizona, Arkansas, Colorado, Louisiana, Michigan, Missouri, South Dakota and Wyoming. A similar law is progressing in California.
The timing is no coincidence and these two movements need not be in conflict. When it comes to promising medical innovations, patients need a right to try every bit as much as a right to die.
Originally published in the Orange County Register.