A deadly cancer you probably haven’t heard of is on the rise. Now, a pioneering HIV activist hopes to change that.

The 66-year-old health consultant has Merkel cell carcinoma, a rare skin cancer that is becoming increasingly common in the United States and is about five times more deadly than skin cancer the better known, melanoma.

Landers hopes to publicly document her illness, from finding a harmless quarter-inch pink spot, smaller than a tiny fingernail, on her right cheek in the summer of 2020, to advanced-stage cancer, can help others recognize and act. quickly against 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 had already spread to his lymph nodes. Her dermatologist first removed the tiny patch months earlier, but didn’t check for cancer until the spot reappeared in the fall of 2020.

This is a “classic” looking Merkel cell carcinoma – a bright pink, red and purple smooth papule – in an unidentified patient. Manisha Thakuria, MD, Co-Director, Merkel Cell Carcinoma Center of Excellence/Dana-Farber, Brigham & Women’s Cancer Center

“While I was discussing the diagnosis with various medical providers, most of them had never heard of it,” Merkel said Landers, associate editor of the American Journal of Public Health and board member state public health.

Hall of Fame quarterback Terry Bradshaw’s public revelation last year that he had been treated for cancer was perhaps the first time many had heard of Merkel cell carcinoma.

However, a common virus, called Merkel cell polyomavirus, is thought to be involved in around 80% of cancer cases.

“If we took a cotton swab from your forehead right now, we’d probably find it on your skin…and yet we don’t know of any problems with the virus, except that one in 3,000 people in their lifetime will get this cancer. of the virus,” said Dr. Paul Nghiem, Merkel specialist and clinical director of cutaneous oncology at Fred Hutchinson Cancer Center in Seattle.

The remaining 20% ​​of cases are caused by prolonged exposure to the sun. Scientists can distinguish sunlight-induced tumors from those fueled by the virus by examining DNA mutations in tumor cells.

About 3,200 new cases of Merkel are diagnosed each year in the United States, and the main risk factor is advanced age, Nghiem said. Most patients are over 65 years old.

Another important risk factor is a weakened immune system, which affects patients such as HIV-positive Landers or those who have had an organ transplant. Patients with an autoimmune disease requiring drugs that suppress their immune system and people with chronic lymphocytic leukemia are also at higher risk.

And yet another puzzling aspect of the disease: more than 90% of all people who develop Merkel have no known immune deficiency.

This isn’t Landers’ first brush with cancer. Her father, who was also fair-skinned, died at age 55 of multiple myeloma, a cancer of the bone marrow. And Landers himself has had several common basal cell carcinomas removed over the years, as well as an early-stage melanoma and a Burkitt’s lymphoma tumor on his vocal cords.

Stewart Landers practices yoga at home. A certified instructor, Landers says yoga, which he has been practicing since he was 17, has helped him stay healthy. Jessica Rinaldi/Globe Staff

But it was his Merkel diagnosis and the discovery that few people had heard of this type of cancer that prompted him to send a candid email about his experience to a small circle of friends and colleagues, including Boston Health Commissioner Dr. Bisola Ojikutu, an infectious disease physician who calls Landers an early mentor.

“I wanted to search for Merkel’s cell after that and do my own research,” Ojikutu said. “It was extremely revealing and helpful.”

Landers helped Ojikutu navigate the landscape of HIV, people, politics and programs, early in her career when she first worked at JSI, a global public health consulting organization in Boston. Ojikutu was a senior clinical advisor on HIV for national and international projects.

They stayed in touch. And when then-mayor Kim Janey offered her the job of Boston’s public health commissioner in 2021, she again asked Landers for advice. “He was one of the first people I reached out to ask if he thought I would be a good commissioner,” she said.

Landers, whose undergraduate degree was in urban planning, had considered becoming an environmental lawyer. But the AIDS epidemic, which was burgeoning when he graduated from law school in 1982, seemed more urgent. He reoriented a fundamental tenet of town planning at the time – ‘nothing about us without us’ – and brought the concept into HIV/AIDS planning and services.

He started at Fenway Health, fresh out of law school, coordinating staff, then joined what would become the Boston Public Health Commission and took a job helping estimate the cost of HIV treatment.

Out of this came a new role at the state health department in 1988 in the office of HIV/AIDS, evaluating and then directing a behavioral health program for people newly diagnosed with HIV.

In 1991, he was director of policy and planning in the state HIV/AIDS office.

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 the work of Landers’ pioneering on HIV/AIDS translated well to his burgeoning mission to promote awareness of Merkel.

“Before HIV, it was this elite approach to research, where a small number of researchers had a set of restrictive rules about recruiting people (into clinical trials) and who could come in and who couldn’t, and that was not always so clear,” Auerbach said.

“Stewart has done an incredible job of building a movement that says there needs to be consumer-driven clinical trials, where people have easy access to what’s happening across the country as well as in their own communities.” , did he declare.

Since 1994, Landers has continued to work on HIV/AIDS at the federal, state, and local level at JSI in Boston.

But the last two years have been difficult.

He underwent surgery and radiation, which kept Merkel’s progression at bay, with no evidence of cancer in a May 2021 scan. But then, a year later, another scan revealed tumors growing on his liver. He was prescribed Pembrolizumab (known as Keytruda) for his stage 4 disease and it seemed to work. But at the end of last November, the tumors were back.

It was then that Landers hoped to enroll in a clinical trial testing two different drugs, but he said his HIV status disqualified him.

“When I asked if 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. compassionate,” Landers said. “As a former HIV activist, I had to ask, ‘Well, can we start one?’”

It’s this attitude that Dr. Ann Silk, a Landers physician and co-director of the Merkel Cell Carcinoma Center of Excellence at the Dana-Farber Cancer Institute, finds remarkable.

“Being in a room with Stewart feels like I’m talking to an ally,” Silk said. “He’s…interested in where the field is at and what we’re doing, not only to get the best outcome for himself, he’s also interested in what the field is doing for Merkel cell carcinoma and how he can contribute.”

Landers now plans to bring his decades of experience organizing HIV/AIDS to his public awareness campaign for Merkel. At Fenway Health, 38 years ago, he oversaw the organization’s first fundraiser to help treat patients. Maybe a similar approach could help with Merkel?

Landers (right) posed for a portrait with her husband of 22 years, Jack Boyce. Jessica Rinaldi/Globe Staff

“More money is needed to support research,” he said. “We could do a lot more with more money; it would make things move faster.

And it would give Merkel’s patients more treatment options.

Landers recently started taking two drugs, known as immunomodulators, which work to boost her body’s immune system to fight cancer. Recommended by Silk, the drugs are expensive: around $28,000 for one that will need to be taken 26 times a year, and $64,000 for the other, which is administered four times.

It is not known if his insurance company will cover them. For now, he pays for himself.

Her most recent blood test and body scan suggest the drugs are working. The test showed a dramatic reduction in the amount of tumor cells detected, while the scan indicated that two of the tumors in his liver had disappeared, but one large one remained. His doctors are considering radiotherapy to treat this tumour.

He has already been hopeful but cautious at this point.

“The word reprieve now seems right,” Landers said. “I’m learning not to go too high or too low. We just have to be able to find things that help.

Kay Lazar can be reached at kay.lazar@globe.com Follow her on Twitter @GlobeKayLazar.

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