By Katie Morell
“My life was hijacked,” remembers Carla Thomas of when she was diagnosed and treated for endometrial cancer in 2016. She tells the story of going in for six chemotherapy treatments and experiencing constant nausea, trembling and unrelenting fear of the unknown. Through it all, though, she was able to keep a semblance of normalcy for one reason.
“Even on my worst days, I’d look in the mirror, smile and tell myself, ‘Girl, you still have your hair,’” she says.
Upon receiving her diagnosis, Thomas looked into a treatment called scalp cooling—a therapy that involves patients wearing a cap (think a very thick swim cap with temperature sensors) during chemo to decrease the temperature of the scalp to such a degree that blood flow to hair follicle cells and the rate of cellular metabolism is reduced, thereby preventing hair loss.
This therapy, while widely used in Europe for decades, has only recently become known in the U.S. In December 2015, the FDA cleared the use of cold cap therapy for some cancers, and expanded it to include all solid tumor cancers this summer.
Access to this technology stateside is largely thanks to the people behind HairToStay, a San Francisco-based nonprofit that helped spark the FDA trial for which UCSF breast cancer specialist Dr. Hope Rugo was principal investigator. In 2016, San Francisco resident Bethany Hornthal and breast cancer survivor Patsy Graham co-founded HairToStay to help subsidize scalp-cooling therapy for low-income cancer patients. Thomas applied for funding and received enough to help her through all six of her treatments.
The prices for this therapy—which feel like an ice cream brain freeze—can be steep, and it must be used during every chemo appointment to prevent hair loss. Manual caps, which need to be switched out frequently while undergoing chemo, can cost $300 to $500 per treatment. Therapies using automated systems, which have been cleared by the FDA—manual caps have yet to be—can run a patient between $400 and $600 per treatment. This therapy is hardly ever covered by insurance.
“The idea that someone might be sitting in an infusion center getting their treatment with a cap on their head, while the person next to them can’t afford it and is bald is very upsetting to me,” says Hornthal, HairToStay’s executive director. “We’ve been able to help more than 500 people so far by subsidizing up to $1,200 of their individual treatment costs for scalp cooling, and we’re looking to help many more.”
HairToStay is in a constant state of fundraising to help as many cancer patients as possible, and local salon owners are pitching in to help. When Christine Donahue, owner of Revery Salon on East Blithedale in Mill Valley, heard about the charity, she decided to create a “salon-a-thon,” where stylists came in on a Monday (the salon’s off-day) to give pro bono haircuts and take donations.
“It was hugely successful—we raised $5,000 for HairToStay,” she says. “We are doing another one on October 2 for Breast Cancer Awareness Month. As someone who works in the salon industry, I can’t tell you how many times I’ve had clients come in asking for what we call a ‘chemo cut.’ It is heartbreaking.”
Other salons have joined the cause, including diPietro Todd, which has donated 1 percent of its product sales to HairToStay since the charity’s early days. At press time, Hornthal was in talks with salons nationwide and hoped to involve more than 250 of them in October salon-a-thons.
According to Thomas, the importance of keeping one’s hair during chemo cannot be understated.
“I didn’t want to look like a cancer patient,” she says. “Whenever I see cancer patients with wraps or scarves on their heads, I always want to go over and give them a hug. It makes me so sad. And I didn’t want to discuss my illness with anyone. When people know, they ask questions. I wanted to carry on throughout my days living with dignity.
Thanks to HairToStay—which paid for 75 percent of my treatments—I’ve been able to do just that. I couldn’t be more grateful.”
HairToStay is holding a fundraiser at Charles Chocolates on October 15. Chillin’ With Charles will feature chocolate, pastries, coffee, shopping and an auction. More info at hairtostay.org.