Who Is Misleading Whom About Precision Medicine?

Theral Timpson

This month the New York Times put out an opinion article that was a reprint from Kaiser Health News written by Liz Szabo positing big doubts about the project of precision medicine. For the Times, it came with the title, “Are We Being Misled About Precision Medicine?” Unfortunately this piece does exactly what it warns against. It misleads.

Putting the headline in question form, rather than declaratory, reveals an insecure thesis. Why not just say it?

And let me ask a couple more questions. If not precision medicine, then what? And, misled by whom?

The subtitle runs: “Doctors and hospitals love to talk about the cancer patients they’ve saved, and reporters love to write about them. But deaths still vastly outnumber the rare successes.”

So that’s who’s misleading us: doctors, hospitals, and reporters. On the surface, I can see an incentive for those three groups of people to mislead us. They all want a paycheck. This may or may not be cynical, but it's possible. But that’s not where this editor and reporter go with the piece. Let’s stick with the subtitle, and ask what are we being misled about? Deaths and successes. I assume success here means success at staying alive. It turns out that deaths still outnumber successes at staying alive.

Is this news?

Are doctors, hospitals, and reporters irresponsible for telling us otherwise?

I’ve been reporting on precision medicine for seven years, interviewing doctors and scientists and many others who work in the healthcare system (providers, payers, policy makers, analysts, etc) and also other reporters, and I’ve never talked to someone who told me that we had cured death.

(To be honest, I have interviewed a few out of Silicon Valley who claim that we will “solve” disease and live much longer in the future.)

Ms. Szabo quotes the well known precision oncology pessimist in the field, Dr. Vinay Prasad, an associate professor at Oregon Health and Science University. Prasad is one researcher, and he is just concerned with oncology. Precision medicine is penetrating many fields (check out our latest show with a nephrologist and hear him talk about how single cell genomics has completely changed his field though it’s early days for clinical applications) including cardiology and rare disease. But cancer is certainly the big one. I have to say, Prasad has received tons of press. He is constantly quoted in article after article everywhere I go. I quote his studies regularly on the program as a check against hype and irrational exuberance.

“Targeted therapies tend to be least successful in patients who have exhausted all standard treatments,” says the article.

That’s because the patients have exhausted all standard treatments.

Let’s talk about how you define precision medicine. Prasad is looking at those with advanced forms of cancer who have already tried frontline and second line therapies and run out of options. But I consider many of those frontline therapies part of precision medicine. When a woman is tested for the BRCA gene, this is precision medicine already. Yet today, we think of it as routine care. When a woman with breast cancer tests estrogen receptor positive and receives Tamoxifen, this is already precision medicine. It’s the right drug for the right patient based on the genotype of her cancer. When you widen the definition, the numbers look a lot different.

For some, the term precision medicine has achieved this extremely narrow definition, this kind of rarified light, this great last hope for very very complicated late stage cancer patients, this . . . almost religion.

My favorite book on the topic this year is by Ramesh Hariharan, the CTO of Strand Life Sciences, a bioinformatics company doing genome interpretation. In the book, Ramesh details nine cases he worked on first-hand at the company analyzing patient genomes. In some cases, the patients die. (In all cases, patients will die.) In some cases, the company is able to help extend patients' lives. In the first case, his own, he finds out the genetic cause of his color blindness. In one case, two young children die early from a rare disease, but the team is able to help the parent understand why and then test the third pregnancy and determine that the baby is safe. Two of the other cases deal with cancer, one a childhood cancer. It’s not just about death and promises from a doctor all the time. It’s also about discoveries along the way and what we learn that helps the next group of patients.

Ramesh selected nine stories that would show how far genomic science has come. These are absolutely fascinating stories. The twists and turns. Just when you think Ramesh and his team have come to a dead end--and they do too--something comes to light, something gives, they find a study, they have an idea, they meet someone. The book reads like a thriller. Now . . . should Ramesh have chosen some stories where he and his team were completely baffled right away, didn’t even know where to begin, and they turned the case away? Those would have been very short stories indeed.

Humans need stories. And they need success stories. It’s how we live.

I remember when the price of sequencing a whole human genome was coming down, say to $100,000, and there were these wealthy individuals with cancer who could afford it (not the cancer, but sequencing), and who were having their genomes sequenced as a last hopeful effort. By today’s standards it sounds almost like stem cell treatment in Mexico. I had one such individual on the program. He was a well known science fiction author, Jay Lake. He had lung cancer, and he and his father (a former U.S. ambassador) were navigating the healthcare system pretty much on their own before we had much of the genomic medicine infrastructure that Ms. Szabo is able to write about today. I spoke to Jay and his dad just before Jay died. Jay’s dad talked about the difficulty managing the bureaucracy of the health system on their own. Jay shared his attitude in the face of his impending death. What I’ll never forget is that he called health a “privilege.”

It’s the underlying thinking that disturbs me about Ms. Szabo’s piece. It sounds so entitled. It sounds as though the entire public were at some point promised that we would all be cured of cancer by doctors, hospitals and reporters. It feeds a public mindset--or misleads--that health is owed us.

Did this happen? Is it happening now? Did I miss something?

I’m sure the Ms. DiCanto in Ms. Szabo’s article wouldn’t have done any different than pursued every option if she had the same circumstances again. There are so many more options today than we had even twenty years ago. Some cancers, such as breast cancer, are becoming a chronic illness. Go talk to Bonnie Addario, a lung cancer patient who began the Bonnie Addario Lung Cancer Foundation and made a new career out of fighting her cancer and sharing her journey of learning about the EGFR mutation with other lung cancer patients. We’ve come to joke on Mendelspod about how many patients have picked up the equivalent of a PhD in science with their own journeys in precision medicine.

Science is hard. Health is easy until it’s not. Then it’s hard. Healthcare is always hard. We should certainly talk and write and tell and publish about how hard it is. In my experience, that's not a problem in life. That's seems to come naturally. Walk into any bar on any given day. Sit in any waiting room in any hospital, Ms. Szabo if you want to hear how hard it is and how many things are not working. The New York Times doesn't have enough raw paper to print how hard it is. It's always our gains that we celebrate and mark on the calendar. Just because people die is not a reason to publish the journal, "Why Precision Medicine Doesn’t Work."

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