Memorial Sloan Kettering, you’ve betrayed my trust

I trusted Memorial Sloan Kettering Cancer Center and believed in it. For more than 30 years, my family and I have literally put our lives in its hands. But it has betrayed my trust and that of many other patients and their families.

Over the course of three decades, my mother, sister, and I have been treated in the hospital’s operating rooms, clinics, and infusion centers. Each of us received top-notch care from the center’s oncologists and surgeons, and I feel without equivocation that I owe my 34 years of cancer survivorship to those doctors. In many ways, Memorial Sloan Kettering has been like family.

I said as much this past June when I had the honor to be the keynote speaker at the 45th annual celebration of volunteers. As one of those volunteers, I’ve always been ready, willing, and able to give my time, and I was speaking from the heart when I declared to the gathering: “You are all members of the MSK family,” the oft-used shorthand for the center.

My sister and brother joined the center’s volunteer corps not long after my treatment for testicular cancer in 1984. Julie distributed books and magazines while Jay helped in pediatrics. More than a decade later, I became one of the patient-to-patient “blue coats” — cancer survivors who meet and speak with patients who have diagnoses similar to their own. That role and those interactions with new patients have been among the greatest blessings of my life. And it’s one of the reasons I’m now a mentor in the hospital’s Visible Ink program, which pairs professional writers with patients who are seeking ways to express themselves.

That history and attachment is why I felt such heartbreak when the New York Times and ProPublica reported that the center’s chief medical officer, Dr. José Baselga, had failed to disclose millions of dollars’ worth of payments from pharmaceutical and other health care companies. It angered me to read that he omitted his “financial ties from dozens of research articles.”

While there is no evidence that Baselga recommended ineffective treatments to his patients, the appearance of influence is troubling. It highlights ineffective oversight, with the potential to cast a shadow on the center’s other excellent doctors. No wonder some physicians say they’re interested in calling for a vote of no confidence in MSK’s top leadership.

When the news first broke, I eagerly read the email sent by the center’s CEO and president, Dr. Craig Thompson, and its chief operating officer, Kathryn Martin, in which they acknowledged that “the matter of disclosure” is serious business. They assured everyone that the hospital has “robust programs in place,” but seemed to hedge when they described the reporting guidelines as both “complex” and “nebulous.”

With all due respect, I think an institution that can so ably tackle the complexities of cancer ought to be able to master disclosure requirements.

Here’s why these conflicts matter: Patients like me, my mother and sister, and thousands more have literally put our lives on the line when we trust that a treatment protocol is the very best available. A seed of doubt now exists: Could those recommendations be colored by a physician’s extra-curricular financial entanglements?

When my mother was diagnosed with lung cancer, I researched her surgeon and his attending physician. The surgeon’s online disclosure revealed he had received a research grant from Bristol-Myers Squibb; his associate acknowledged “relevant financial relationships” with eight drug makers. Those disclosures helped us evaluate whether Mom’s doctors had personal financial incentives in their treatment recommendations. We were comfortable that they did not, but we could not have known to ask our questions without access to their truthful disclosures.

My sense of betrayal only deepened when ProPublica and the New York Times reported on an artificial intelligence startup called Paige.AI, which was granted exclusive access to the center’s archive of 25 million slides of patients’ tissues. The company was founded by three hospital insiders: a member of its executive board, the chairman of its pathology department, and the head of one of its research laboratories. In addition, three other board members invested in Paige.AI, and the center itself is a part owner of the new company.

Are the slides of my cancer among them? My mom’s? My sister’s? I’m uneasy wondering whether they are being commercialized without our consent, or even without our being notified. The hospital claims that the data are anonymous, but anonymous data these days has a habit of somehow becoming identifiable. Data are the currency with the greatest value in research today.

If that weren’t enough, when startup company Y-mAbs Therapeutics, funded in part by Memorial Sloan Kettering, went public a little more than a week ago, Dr. Gregory Raskin, a vice president who oversees the hospital’s ventures with for-profit companies and serves as a Y-mAbs board member, looked set to personally profit from the deal to the tune of nearly $1.4 million.

As a patient whose life was saved by rapid developments in chemotherapy in the late 1970s and 1980s, I applaud innovative approaches to new cancer drugs. But I worry about ethical boundaries being crossed with financial relationships that look like double-dealing.

Memorial Sloan Kettering has long touted in ad campaigns that it provides “the best cancer care anywhere.” My family agrees. But every news article about what is rightfully being described as a crisis at the center deepens our sense of betrayal.

I hope that the center’s rebuke of Raskin translates into greater oversight when it comes to physician disclosure and transparency and stronger rules about MSK staff profiting from their board directorships. But leadership starts at the top. On Tuesday, CEO Thompson did the right thing — for the wrong reason — when he resigned from the board of the drug maker Merck & Company and that of another public company, Charles River Labs. Instead of acknowledging the inherent conflict of interest of serving on those two outside boards, he attempted a kumbaya explanation, saying: “I’ve heard from a number of you that you’d like me to be even more present at MSK.” (In 2017, Thompson received $300,000 in compensation from Merck in addition to being paid $6.7 million for his day job in 2016, according to the New York Times and ProPublica).

MSK’s catching up is not finished. According to the Times and ProPublica, Thompson’s resignation doesn’t affect his eight colleagues who sit on the boards of outside companies. And while Thompson has convened a task force to assess the situation and make recommendations, he hasn’t given this group a deadline. Get on the express train, or get off.

MSK’s board chairman Douglas A. Warner III was right about one thing when he acknowledged the widespread anger being directed at the hospital. “The question you’re asking quite properly is: Where the hell was management and the board in all this …?”

Amen.

I am pained because of my family’s long attachment and devotion to MSK and the great gifts — cures and life-extending treatments — that were given to us by the amazing staff. With patients making life-and-death treatment decisions in real time, a commitment to full transparency and appropriate safeguards about profiteering would be one less thing for us to worry about. After all, we too want Memorial Sloan Kettering to remain “the best cancer care anywhere.”

Steven Petrow is a columnist for USA Today, a contributing writer to the Washington Post, a past president of the National Lesbian & Gay Journalists Association, and author of several books.