Amityville, NY, United States (KaiserHealth) – Facing incurable breast cancer at age 55, MaryAnne DiCanto put her faith in “precision medicine” – in which doctors try to match patients with drugs that target the genetic mutations in their tumors. She underwent repeated biopsies to identify therapies that might help.
“She believed in it wholeheartedly,” said her husband, Scott Primiano of Amityville, N.Y., a flood-insurance broker. “You live on hope for so long, it’s hard to let go.”
Around this point in the average news story, readers would learn how DiCanto – mother to a blended family of five – took a chance on an experimental drug that no one expected to work.
She would be the scrappy protagonist whose determination to “keep fighting” enabled her to beat the odds – allowing us to celebrate the triumph of modern science and worry a bit less about our own mortality.
But there’s a serious problem with talking about precision medicine for cancer this way.
It misleads the public.
In spite of DiCanto’s high hopes, none of it helped. DiCanto died last year at age 59.
Doctors and hospitals love to talk about the patients they’ve saved with precision medicine, and reporters love to write about them. But the people who die – patients like DiCanto, who succumb to advanced cancer despite the advanced testing – still vastly outnumber the rare successes.
“There are very few instances in which we can look at a genomic test and pick a drug off the shelf and say, ‘That will work,'” said Dr. Nikhil Wagle, a cancer specialist at Boston’s Dana-Farber Cancer Institute who helped develop precision-medicine tests. “That’s our goal in the long run, but in 2018 we’re not there yet.”
Reflecting on his family’s experience with “precision” treatment, Primiano said, “You think it’s going to be more precise, like a laser versus a shotgun. But it’s still a shotgun.”
There has been real progress, of course.
Paying for tests and treatment poses its own hurdles. Insurers often tell patients that next-generation sequencing is unproven. Even when insurers agree to cover the testing, they won’t necessarily cover nonstandard or experimental treatments that sequencing companies recommend.
Primiano, a insurance broker, said his family was able to handle the costs: $500,000 out-of-pocket on his wife’s cancer care over 13 years. But managing his wife’s cancer “was a full-time job – doing the research, finding the clinical trials, dealing with the insurance companies, managing the money.”
He worries about people with fewer resources, especially patients tempted to drain their savings account to pay for a treatment with little to no chance of working.
The very words “precision medicine” suggest a high rate of success, Primiano said. While its successes should be celebrated, its failures must be acknowledged and tallied, reminding us how much is left to learn. When patients and their families have so much on the line, they deserve to understand what they’re paying for.
“Let’s not pretend this is something it isn’t,” Primiano said. “I’m not saying we shouldn’t try it. I just don’t want people to have false hope.”
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