Metro

‘Cool caps’ help chemo patients keep hair — for a high price

Steve Jaynes helped his wife position the cap.
Pat Greenhouse/Globe Staff
Steve Jaynes helped his wife position the cap.

A new therapy is limiting chemotherapy-induced hair loss, an emotionally devastating side effect of cancer treatment. But the cost — and the refusal of some insurers to pay — could put the therapy out of reach for less-affluent patients.

Blue Cross Blue Shield of Massachusetts and the state’s Medicaid system are among the insurers that don’t cover the therapy, called scalp cooling, with Blue Cross saying it hasn’t been shown to be widely effective. But breast cancer doctors at Dana-Farber Cancer Institute and Massachusetts General Hospital said good evidence exists that cold caps prevent hair loss for patients on certain chemotherapy regimens.

The two Boston hospitals recently rented scalp-cooling machines, which pump cold air through a hose into a cap fitted snugly on a patient’s head, from Paxman, a British manufacturer with roots in beer-cooling systems. Patients pay Paxman for a custom-made cap and each treatment session, with a limit of $2,200 in out-of -pocket costs.

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Dana-Farber, Mass. General, and two other hospitals that provide the therapy — Emerson in Concord and Newton-Wellesley — said financial aid is available to patients who can’t cover the cost.

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“I can’t envision a situation where we don’t find the resources,’’ said Dr. Steven Isakoff, a breast cancer specialist at Mass. General. Preserving “one’s hair should not be limited to those who can afford it.’’

But these hospitals treat many middle-income and well-off patients, and cold cap machines are not widely available at other Massachusetts hospitals, or nationally, because they are so new and because insurers are balking at providing coverage.

“You are talking about cooling caps that cost $2,000 out of pocket; it’s just not realistic or our priority right now,’’ said Dr. Naomi Ko, a breast oncologist at Boston Medical Center, which cares for many low-income patients in its large cancer program.

BMC executives said that discretionary hospital funds are earmarked for food, transportation, and medications, making cold caps feel like an out-of-reach luxury.

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At Dana-Farber, which brought in the machines in November, more than 30 women have enrolled. The therapy was originally tested on — and is mostly used for — breast cancer patients, but doctors say it may eventually expand to include patients with other types of cancer. “Are you cool capping?’’ has become a popular question in online breast cancer forums.

Judy Jaynes, a 34-year-old mother of three, was diagnosed with breast cancer after Thanksgiving. Friends raised money to help her family with expenses, allowing her to pay for cold cap therapy. She worried that if she lost her hair, it would upset her 7-year-old son. And she didn’t want the disease to subsume her identity.

“If I’m out at Target, I don’t want people to say, ‘There goes a cancer patient,’ ’’ Jaynes said.

Before starting her third chemotherapy infusion at Dana-Farber recently, Jaynes went into a restroom to pull on the blue silicone cap and gray cap cover. Then the machine cooled her scalp to as low as 64 degrees Fahrenheit, narrowing blood vessels to limit the amount of cancer-killing drugs that reach hair follicles.

Jaynes, who lives in Wilmington, said the treatment makes her head uncomfortably cold at first and means she spends longer at the hospital — women have to wear the cap 30 minutes prior to and 90 minutes after chemotherapy. But it’s been worth it, she said. She has lost just 30 percent to 40 percent of her long thick brown hair even though she’s on two chemotherapy drugs that almost always result in complete baldness.

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“For certain types of chemotherapy, this is a game-changer,’’ said Dr. Eric Winer, chief of women’s cancers at Dana-Farber, who pushed for the therapy.

Earlier-generation cold caps that work with dry ice can be effective and less expensive, but are cumbersome, doctors said. With this option, which some cancer patients still use, patients often wheel coolers of ice into the hospital on their own and bring a relative or friend to refresh the ice in their cap every 20 minutes or so.

Some insurers have questioned the effectiveness of cold caps, even though recent studies have shown positive results. In a 2017 article in the Journal of the American Medical Association, researchers said that 50 percent of women who used the cooling machines kept at least half their hair, compared to zero patients who did not use them. The study was small, though — 182 patients with stage 1 or 2 breast cancer. Paxman paid for the study. (Dignitana, a Swedish company that also makes scalp cooling machines, funded a study that got similar results last year.)

And many women experienced chills, dizziness, headaches, nausea, tingling, and itching. But only four women dropped out of the study because the cap was too cold.

Blue Cross Blue Shield of Massachusetts, the state’s largest private insurer, said it considers the caps experimental because the results are inconsistent and depend on the patient’s chemotherapy regimen, number of cycles, and length of time the patient can tolerate the cap. For example, cold caps do not seem to work for patients who get the breast cancer chemotherapy drug Adriamycin.

Tufts Health Plan and the state Medicaid program, which covers about 1.85 million people, do not cover the therapy, while Harvard Pilgrim Health Care said it is under review. Isakoff, of Mass. General, said he has written appeals that have resulted in UnitedHealthcare and Aetna paying for the treatment for some patients.

Paxman charges patients $500 for the cap and between $100 and $200 per chemotherapy treatment, up to a total of $2,200. After that, treatments are free.

“It is beyond me why insurers wouldn’t pay for this when they are willing to pay for a wig,’’ Isakoff said.

Lorna Deplitch, who received the therapy starting in November at Newton-Wellesley Hospital, said she experienced a severe “brain freeze’’ like eating ice cream too fast, but that the sensation lasted for only 10 minutes. Warm blankets helped. As did deep breathing.

“You have to keep yourself calm,’’ said Deplitch, 62. “I remember thinking I am going to rip this thing off my head. Then I remembered I paid for it.’’

Deplitch had low expectations and was surprised that she kept almost all of her fine blond hair.

Both Jaynes’s and Deplitch’s insurers paid for wigs they have not ended up needing.

Winer, of Dana-Farber, believes more insurers eventually will cover cold cap therapy because demand will rise. If that happens, more lower-income women could have access to it.

Dr. Joseph Betancourt, director of the Disparities Solutions Center at Mass. General, said cold caps are part of a common phenomenon — a lag, usually two to three years, before new medical technology reaches lower-income communities. In part, that’s because manufacturers negotiate with private insurers for coverage before they approach the state Medicaid programs that insure the poor.

That is certainly true at Paxman. But Richard Paxman, managing director, said the company is working to make cold caps accessible to lower-income patients. Both Paxman and Dignitana — as well as makers of the dry ice systems — work with a nonprofit foundation in San Francisco called HairToStay. It provides partial subsidies, mostly to patients who earn up to 300 percent of the federal poverty level.

Meanwhile, breast cancer patients are helping one another. Deplitch donated her cap back to the hospital for another patient to use.

Liz Kowalczyk can be reached at kowalczyk@globe.com.