Even before he was infected with HIV in 1985, Stewart Landers had become a warrior for AIDS patients at a time when the medical establishment was confounded by the mysterious disease.
The Harvard-educated lawyer has since gone on to become a key adviser to a multitude of Massachusetts leaders, tenaciously battling some of the state’s most pressing public health challenges, from AIDS and LGBTQ+ services, to obesity and other chronic diseases — but always out of the limelight.
Now, 38 years after his HIV diagnosis, Landers has again been stricken with a disease that is little known, even in the medical establishment. But this time, he is taking his plight public.
The 66-year-old health consultant has Merkel cell carcinoma, a rare skin cancer that is becoming more common in the US and is about five times more lethal than the better-known skin cancer, melanoma.
Landers is hoping that publicly documenting his illness, from the discovery of an innocuous quarter-inch pink spot, smaller than a pinky fingernail, on his right cheek in the summer of 2020, to a late-stage cancer, may help others recognize and act quickly against the aggressive disease.
“I was freaked out,” Landers confessed, as he recently recounted how he learned in early 2021 that his pinkish spot was Merkel and that it had already spread to his lymph nodes. His dermatologist initially removed the tiny patch months earlier, but did not check for cancer until the spot reappeared in the fall of 2020.
“As I discussed the diagnosis with various medical providers, most of them had never heard about” Merkel, said Landers, an associate editor of the American Journal of Public Health and a member of the state’s Public Health Council.
Hall of Fame quarterback Terry Bradshaw’s public disclosure last year that he was treated for the cancer may be the first time many had heard of Merkel cell carcinoma.
Yet a common virus, called Merkel cell polyomavirus, is thought to be involved in about 80 percent of cases of the cancer.
“If we took a cotton swab of your forehead right now, we would probably find it on your skin ... and yet we know of no problem whatsoever from the virus, except that one in 3,000 people over their lifetime will get this cancer from the virus,” said Dr. Paul Nghiem, a Merkel specialist and clinical director of skin oncology at the Fred Hutchinson Cancer Center in Seattle.
The remaining 20 percent of cases are caused by long-term sun exposure. Scientists can distinguish the tumors induced by sunlight from those fueled by the virus by scrutinizing DNA mutations in the tumor cells.
About 3,200 new cases of Merkel are diagnosed each year in the US, and the biggest risk factor is older age, Nghiem said. Most patients are over 65.
Another big risk factor is a weak immune system, which affects patients such as Landers with HIV, or those who have had an organ transplant. Patients with an autoimmune disease requiring medication that suppresses their immune system, and people with chronic lymphocytic leukemia are also at higher risk.
And yet, another puzzling part of the disease: more than 90 percent of all people who develop Merkel have no known immune deficiency.
This is not Landers’s first brush with cancer. His father, who was also light-skinned, died at 55 of multiple myeloma, a bone marrow cancer. And Landers himself had several common basal cell carcinomas removed over the years, as well as an early stage melanoma, and a Burkitt lymphoma tumor on his vocal cords.
But it was his Merkel diagnosis, and discovering that few people had ever heard of this type of cancer, that prompted him to send a candid e-mail about his experience to a small circle of friends and colleagues, including Boston’s health commissioner, Dr. Bisola Ojikutu, an infectious disease physician who calls Landers an early mentor.
“I wanted to look up Merkel cell after that and do my own research,” Ojikutu said. “It was extremely eye-opening and helpful.”
Landers helped shepherd Ojikutu through the HIV landscape, the people, politics, and programs, early in her career when she first worked at JSI, a global public health consulting organization in Boston. Ojikutu was an HIV senior clinical adviser on both domestic and international projects.
They stayed in touch. And when then-Mayor Kim Janey offered her the job of Boston public health commissioner in 2021, she sought Landers’s advice once again. “He was one of the first people I reached out to to get a sense about whether he thought I would be a good commissioner,” she said.
Landers, whose undergraduate degree was in city planning, had envisioned becoming an environmental lawyer. But the AIDS epidemic, which was burgeoning as he graduated law school in 1982, seemed more urgent. He repurposed a core tenet of city planning at that time — “nothing about us without us” — and introduced the concept to HIV/AIDS planning and services.
He started at Fenway Health, fresh out of law school, coordinating staff, then moved to what would become the Boston Public Health Commission and took a position helping to evaluate the cost of treating HIV.
From there came a new role at the state health department in 1988 in the HIV/AIDS bureau, evaluating and then leading a behavioral health program for people newly diagnosed with HIV.
By 1991, he was director of policy and planning in the state’s HIV/AIDS bureau.
Former Massachusetts public health commissioner John Auerbach, who has known Landers since they first worked together at the state health department in the late 1980s, said Landers’s pioneering HIV/AIDS work translates well to his nascent mission promoting Merkel awareness.
“Before HIV, it was this elitist approach to the research, where a small number of researchers would have a restrictive set of rules about enrolling people [in clinical trials] and who could get in and who couldn’t, and it was not always clear,” Auerbach said.
“Stewart did incredible work to develop a movement that would say there needs to be consumer-oriented clinical trials, where people have ready access to what’s happening across the country as well as in their own communities,” he said.
Since 1994, Landers has continued to work on HIV/AIDS on the federal, state, and local level at JSI in Boston.
But the past two years have been challenging.
He has been through surgery and radiation, which has held the Merkel progression at bay, with no evidence of the cancer in a May 2021 scan. But then, one year later, another scan revealed tumors growing on his liver. He was prescribed Pembrolizumab (known as Keytruda) for his stage 4 disease and that appeared to work. But by the end of last November, the tumors were back.
That’s when Landers hoped to enroll in a clinical trial testing two different drugs, but he said his HIV status disqualified him.
“When I asked whether the drugs that are being studied in this clinical trial might be available on a compassionate use basis. I was told “no, there is no existing program for compassionate use,” Landers said. “As an old HIV activist, I had to ask ‘Well, can we start one?’”
It’s that attitude that Dr. Ann Silk, Landers’s physician and the co-director of the Merkel Cell Carcinoma Center of Excellence at Dana-Farber Cancer Institute, finds remarkable.
“Being in a room with Stewart, I feel like I am talking to an ally,” Silk said. “He is ... interested in where the field is and what we are doing, not only achieving the best outcome for himself, he is also interested in what the field is doing for Merkel cell carcinoma and how he can contribute.”
Landers now envisions bringing his decades-long experience in HIV/AIDS organizing to his public awareness campaign for Merkel. At Fenway Health, 38 years ago, he oversaw the organization’s first fund-raiser to help with patient treatment. Perhaps a similar approach might help with Merkel?
“There needs to be more money raised to support research,” he said. “There could be a lot more done with more money; it would move things more quickly.”
And it would give Merkel patients more treatment options.
Landers recently started on two drugs, known as immunomodulators, that strive to stimulate his body’s immune system to fight the cancer. Recommended by Silk, the drugs are expensive: roughly $28,000 for one that will need to be taken 26 times in a year, and $64,000 for the other, given four times.
It’s unclear whether his insurance company will cover them. For now, he is paying for it himself.
His most recent blood test and body scan suggest the medications are working. The test showed a dramatic reduction in the amount of tumor cells detected, while the scan indicated two of the tumors on his liver disappeared, but one large one remains. His doctors are considering radiation to address that tumor.
He has been at this hopeful-but-cautious juncture before.
“The word reprieve now just seems right,” Landers said. “I am learning to not get too high or too low. We just need to be able to find things that help.”
Kay Lazar can be reached at email@example.com Follow her on Twitter @GlobeKayLazar.