Patients Push Back Against Hospitals' Mar-a-Lago Connections

“I've learned a lot about being a patient. The place where you receive oncology care really takes on significance in your life. You have a strangely deep relationship with it—it’s the source of some terrible experiences, but also your hope and refuge. Just walking through the front door, you feel frailer and more dependent.”

Alan Guttmacher is a physician with leukemia who watched his father and uncle die of the same disease. He gets his treatment at the Dana-Farber Cancer Institute in Boston. A towering glass monolith among less resplendent research buildings, it’s specifically designed to give patients a womb-like reassurance: Inside the doors, a “healing garden” fills 2,000 square feet and includes “a simple and non-toxic plant palette of bamboo, lily turf with frequent rotations of colorful flowers, individual planters with sterile soil mix and self-watering irrigation systems, and a separate glass-walled Conservatory for immune-suppressed patients who cannot enter the garden.”

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Perennially atop the lists of the world’s leading centers for cancer treatment, Dana-Farber sits a few hundred meters from the center of the Harvard Medical School campus. Doctors on staff have appointments as professors and fellows at the University. Guttmacher himself graduated from Harvard Medical School in 1981. He went on to become a genetics researcher and pediatrician, eventually rising to direct the U.S. National Institute of Child Health and Human Development.

But this week he’s grown cold toward Dana-Farber, and he is far from alone.

That’s because on February 18, the hospital will hold a lavish fundraising gala at the Trump Organization’s Mar-a-Lago, the resort that last month President Donald Trump called “the Winter White House.” The resort charges $150,000 to host the event, which promises “an elegant evening of dinner, excitement, and a special performance by ‘The Hit Man’ David Foster.” Though Trump has appointed his son as its official director, the president has not provided evidence of divestment. On Tuesday press secretary Sean Spicer said the President will spend his second straight weekend at Mar-a-Lago, where he is expected to be joined by Japanese Prime Minister Shinzo Abe.

Learning that Dana-Farber is continuing as a patron of the Trump Organization made Guttmacher feel instantly “less at home, less cared for.” He expects that he “will feel less of a refuge next time I need chemotherapy again.”

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That feeling is a failure in the type of comprehensive care that Dana-Farber—and ever more doctors and medical institutions—seek to provide. It represents a test of the ethics of the profession and a bellwether for the new challenges doctors and patients will face in coming years.

“The wonderful thing about being a physician is you get to care about other people's wellbeing. And if we really do, then we need to push back.”

Some are responding quickly and clearly. Last week six Harvard medical students learned of the gala and wrote to leaders at Dana-Farber to express similar concerns. The students believe hosting the event at the Trump property is tantamount to an endorsement of the President’s policies and statements, many of which, they say, pose threats to health and are explicitly counter to Dana-Farber’s stated core values of compassion and respect.

Indeed the cancer institute advertises itself as “recognized as a leader in diversity” and committed to “[designing] programs that promote public health, particularly among high-risk and underserved populations,” so the students see a particular conflict with Trumps’ temporary ban on refugees and green-card holders from seven countries. The president indicated last week that he will give priority to Christian immigrants, and as recently as December he called for “a total and complete shutdown of Muslims entering the United States until our country’s representatives can figure out what is going on.”

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“The executive order is a direct threat to the health and well-being of thousands of refugees worldwide,” the students wrote to Dana-Farber CEO Laurie Glimcher last week. “It has additionally jeopardized the ability of students, researchers, and clinicians from the barred countries who work legally in the United States to care for patients and advance medical knowledge.” Among them, just around the corner at Harvard’s Brigham and Women’s Hospital, researcher Samira Asgari was temporarily prevented from entering the country to begin post-doctoral work on tuberculosis.

Applications filed with Palm Beach say Dana-Farber expects to raise $1.25 million from the event. To the medical students, the end does not justify the means. “The advancement of the overall mission of the Dana-Farber Cancer Institute cannot come at the expense of the most vulnerable among us,” the students wrote. “At this time of unprecedented uncertainty in the United States, we call on DFCI, as an integral institution of the Harvard Community and a global leader in cancer care and research, to take a strong stand for the health and wellbeing of all patients, no matter their religion or nation of origin.”

Dana-Farber responded with a statement that took a much narrower view of its societal role: “As a cancer care and research organization, we seek to remain solely focused on our singular mission of hope and progress against this disease. … Contracts have been signed, and a large number of people have committed to attend. Cancelling the event outright would only deny much-needed resources for research and care.”

Short notice might be a more consoling argument if similar concerns hadn’t been raised in the past. “This was covered in the press as an issue in September,” said George Karandinos, a Harvard medical student among those leading the backlash. “Partially because this has been brought up before, we're less sympathetic to the argument that the fundraiser is so close.” In light of the fact that President Trump has “sent out a message of exclusion, discrimination, and hate,” Karandinos said, this response “felt very weak.”

Indeed Dana-Farber, which brands itself as a pioneering, trailblazing institution, closed its public statement with the argument that “Other organizations find themselves in a similar position this year and have made a similar decision.” Those other organizations include the Cleveland Clinic, which also has a fundraising gala at Mar-a-Lago this month. In Cleveland, medicals students have been protesting as well. They have circulated a petition that has some 1500 signatures.

“I think the ethical obligations of these hospitals are being tested right now, when patients and employees are being threatened,” said Madhuri Nishtala, a medical student at Case Western Reserve University. “They're really not doing what I'd expect them to do, which is stand up for the populations that make them world-class institutions.”

“We're on the cusp of revolutions that could completely change the way cancer is treated, and I don't want it to stall now.”

After the tepid response from Dana-Farber, the Harvard students drafted a petition as well, and it circulated quickly. They collected 1,000 signatures in the first day, and 2,000 by the end of the second, mostly from medical professionals in the Harvard community. The names include those of the chief of hematology-oncology at Dana-Farber, as well as cancer patients and their families.

Among them is Alice Smythe, who was diagnosed with an aggressive ovarian cancer in November of 2015. She underwent surgery and a difficult chemotherapy regiment at Dana-Farber. “I'm doing well, as far as I can tell,” she told me last week, not quite a year out from her last chemotherapy. Her praise for Dana-Farber is effusive: “As crazy as it sounds, I felt like this cancer diagnosis was in some ways a good thing, because I had never in my life been on the receiving end of such care and concern and love.” She felt such a debt of gratitude to the institution and her doctor that while she was still in treatment, she gathered friends and family to do some fundraising. As “Team Madame Ovary,” they raised $15,000 to donate to the institute.

The word she uses to describe her feelings about the Mar-a-Lago event is betrayal.

“I'm very concerned about where cancer research is going to go under this administration,” Smythe told me. “I’m scared to death that there will be serious scaling back of funding. I feel like we're on the cusp of revolutions that could completely change the way cancer is treated, and I don't want it to stall now.”

The scientist Alan Guttmacher agrees with the severity of the threat. Though he has historically refrained from political discourse, Guttmacher was among the early signatories.“I was a federal bureaucrat under administrations that I thought did some really bad things,” said Guttmacher, who retired from the National Institutes of Health in 2015. “But in only its first few weeks, this administration has set whole new standards. Not just for ineptitude—that’s forgiven, to some degree—but a general lack of respect for science and facts, and immoral acts that are bad for health in all kinds of ways. That includes resurrecting the global gag rule (or Mexico City Policy) that means women will die from unsafe abortions. And nominating as head of HHS a man who has serious conflicts of interests and a history of protecting physicians' incomes over protecting patient's interests. And rolling back the Affordable Care Act.”

Repealing the Affordable Care Act particularly terrifies Karl Surkan, a breast-cancer survivor. Surkan is a bioethics scholar and an adjunct professor at M.I.T. He is a transgender man with a BRCA genetic mutation that disposes him to breast and ovarian cancer. “Dana-Farber saved my life, I'm sure of it,” said Surkan, who was diagnosed in 2013 based on an MRI—an expensive surveillance technique for patients who are at extremely high risk.  

Even though he is cancer-free at the moment, Surkan’s high-risk genetic status makes him essentially uninsurable if insurance companies are again allowed to charge exorbitant prices to people with “pre-existing conditions.”

“My health is completely being jeopardized by the Trump administration, particularly the ACA rollback,” he said. Surkan was “absolutely horrified” to learn of the Mar-a-Lago event. He lives in fear of trying to purchase health insurance as a person with a serious preexisting condition. As he put it, “I'm one phone call away from a terminal diagnosis at any time.”

Larry Rosenberg, who underwent lymphoma treatment at Dana-Farber, believes that silence has become unacceptable. “My top concern with Dana-Farber is the same as it is with any other person or institution that normalizes Trump’s presidency,” he said.  “When an institution like Dana-Farber says Trump is effectively within our normal set of civic, personal, corporate, and institutional standards, that allows him to move forward as if things are okay.”

But Rosenberg proposes a solution to the institute’s ostensible sunk-cost predicament: “In terms of the financial loss on the Mar-a-Lago event, one could imagine that continuing to hold the event there would lead to such a decrease in funds—either at this event or in future fundraising—that they might actually come out ahead by cancelling, despite the immediate costs. One could imagine that some of those people who bought $100,000 tickets would still support you.”

“If they were to suffer some financial consequences from cancelling this event, I would donate to help buffer those losses,” said Guttmacher. “And I suspect there are a number of people who would be willing to help them make that up.”

I offered that suggestion to the CEOs of Dana-Farber and Cleveland Clinic, both of whom declined to speak with me about the concerns of their patients and faculty. Like Dana-Farber, Cleveland Clinic issued a brief, vague public statement that some patients took as worse than saying nothing. It reads: “Recent immigration action taken by the White House has caused a great deal of uncertainty and has impacted some of our employees who are traveling overseas. We deeply care about all of our employees and are fully committed to the safe return of those who have been affected by this action.”

“Standing up to him means making sacrifices and taking risks. That's exactly the point.”

Cleveland Clinic CEO Toby Cosgrove was a renowned thoracic surgeon before taking charge of the nonprofit hospital system, a role in which he now makes a salary of $4.8 million. He also serves as an advisor to Trump. It’s possible that, not unlike Elon Musk, Cosgrove believes he can be more influential as a whisper in the President’s ear than as a voice of public disagreement.

In the mean time, Cosgrove is choosing publicly to ignore the specific concerns and pleas of his patients, students, and faculty. The leadership at Dana-Farber is doing the same.

All of this highlights the current challenges to the traditional role of doctors. Medicine is a profession that has long preferred to keep its work within hospital walls. Last week I gave a lecture to medical students and asked how many used Twitter, and only about a quarter raised their hands. I know something like 90 percent of Americans aren’t on it, but it surprised me that medical students weren’t more engaged—or at least curious—about a platform that can help disseminate scientific knowledge, promote social determinants of health, and connect doctors with both the public and other medical professionals. I mentioned that later (on Twitter), and medical students got back to me saying that some who are on Twitter can’t talk openly there or admit to using it at all, so they engage anonymously “because of the hierarchy.”

Doctors and scientists sometimes feel pressure to behave like automatons—smiling and laughing only at banal small talk, and expressing compassion and empathy when the situation demands, but in all other moments dispassionate and removed. Opinions can be seen as professionally disqualifying. In a hyper-competitive environment for medical students in residents, many feel they can’t afford to deviate from the reserved physician stereotype.

But it may no longer be viable to stay silent when patients and colleagues are so concerned that rights and public health are seriously threatened. Inaction can be seen as an abdication of duty to do no harm. “The wonderful thing about being a physician is you get to care about other people's wellbeing,” said Guttmacher. “And if we really do, then we need to push back. That means more than just taking care of the patient who's sitting in front of you. It means taking stands on larger issues.”

The American Medical Association has begun speaking up—after a contentious endorsement of Tom Price, the organization broke ranks and issued a letter this week in support of a bill that would protect more than 750,000 undocumented young people who have Deferred Action for Childhood Arrivals (DACA) status from being deported, as Trump has threatened to do. Among these ranks are 65 medical students and many other patients and colleagues.

At Harvard Medical School, the students seem secure in this sort of activism. One of the students who wrote the letter to Dana-Farber was Colleen Farrell. “My generation of doctors thinks about things beyond just the doctor-patient relationship. We have to think about how we care for communities and larger social issues, and how they play out in our patients’ bodies.”

Though she also recognizes her privileged position. Farrell plans to go into primary care, a field in which there is a surplus of jobs. A residency director or hospital CEO who doesn’t want an advocate in the ranks might be less likely to hire her, but she will have other options. The same may not be true for students at less prestigious schools who are attempting to enter extremely competitive specialties.

“The power structures in medicine seem impossible to question,” she said. “But Trump keeps going after people. Now he's going after refugees and people from other countries, and we don't stand up to him because we don't want to lose what we have—but standing up to him means making sacrifices and taking risks. That's exactly the point.”

“The structure of medicine is unquestionably hierarchical,” said classmate George Karandinos. “But a lot of students feel a responsibility to speak out on issues that impact our patients, we realize that what shapes health often transcends the direct clinical interaction in a hospital or doctor's office. It's our job to respond to that. And the people who don't, I think it's because they don't feel empowered to intervene, not because they're not sympathetic.”

Because Dana-Farber has opted to proceed with the Mar-a-Lago gala—has not committed to distancing itself from the Trump Organization in the future—the Harvard students, doctors, and patients are elevating the stakes. This coming Saturday, they plan to rally on the quad of Harvard Medical School, in the shadow of the cancer institute. In the spirit of evidence-based effective protest, their request is clear and concrete: “We call on the Dana-Farber to relocate its fundraiser away from President Trump’s Mar-a-Lago this year and in all subsequent years.”

The precedents being set for health-care professionals are of greater consequence. In this time of radically shifting norms, how physicians and their institutions choose to exercise their influence could be more consequential than most of the prescriptions written or procedures performed. While institutions struggle to define moral positions, medical students seem most clearly oriented. Still making the transition into the profession—half way between the lay public and the entrenched physician—they see the profession as an idyll, playing a unique cultural role to protect human health in any way necessary. They really believe it can.

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This article was originally published on The Atlantic.