Belvedere resident and HairToStay co-founder Bethany Hornthal (center) laughs with Carol Bagattini of Belvedere (left) and Carla Thomas, a HairToStay subsidy recipient, during a fundraiser at Bagattini’s home. HairToStay helps low-income cancer patients afford scalp-cooling, which may help prevent hair loss during chemotherapy.
Belvedere’s Bethany Hornthal first learned about chemotherapy patients using scalp-cooling caps to prevent hair loss in 2010 while she was working as a marketing and development consultant in the medical field.
Laura Esserman, the director of the University of California at San Francisco’s Carol Franc Buck Breast Care Center, told Hornthal about a patient who “did not want to lose her beautiful blonde hair during chemotherapy” and had asked her doctor whether scalp-cooling, which was predominantly used in Europe at the time, would be possible at UCSF, Hornthal recalls.
After researching scalp-cooling caps, Hornthal realized they would need to be cleared by the U.S. Food and Drug Administration before medical facilities such as UCSF could make them available to patients. Hornthal contacted Ingrid Tauber, a psychologist and president of the Tauber Foundation, who agreed to fund clinical trials. Hornthal stayed involved over the next five years as studies were conducted at UCSF and medical centers at the University of California at Los Angeles, Wake Forest University, Cornell University and Mount Sinai Beth Israel hospital in New York City.
In December 2015, Dignicap, an automatic scalp-cooling cap from Swedish developer Dignitana, became the first such device to earn FDA clearance. But Hornthal, 60, didn’t stop there. In 2016 she co-founded the nonprofit HairToStay with Patsy Graham, a Texas breast-cancer survivor. Graham had used a European cooling-cap to retain her curly hair while undergoing her second chemotherapy infusion in 2010 and had since started the nonprofit Cold Caps Assistance Projects to subsidize scalp cooling for cancer patients who could not afford the treatments.
HairToStay continues and expands the work started by Graham, offering base grants to subsidize the cost of scalp-cooling, which averages about $500 per month and is not covered by most insurance policies, while also increasing awareness about the treatment.
The nonprofit has awarded more than 600 subsidies to patients nationwide since its inception, ensuring hair loss is one less hurdle those cancer patients must over-come, Hornthal says.
“There is an assumption that if you have cancer, your head is bald,” she says. “Yet, if you look in the mirror and see someone you recognize with hair, you might keep your identity intact. Most people prefer to go through cancer treatment in privacy.”
Two types of scalp-cooling treatments
The scientific theory behind scalp-cooling is that the scalp blood vessels constrict when chilled to about 30 degrees, according to the American Cancer Society. Hypothermia decreases the activity of the hair follicles, making them less receptive to chemo, which targets rapidly dividing cells. Because scalp-cooling could reduce the ability of chemo to reach the hair follicles, it could prevent or reduce hair loss.
There are two types of cooling devices: manual and automatic. The manual caps, which are self-administered by the patient, are frozen gel caps that need to be switched out every half hour or so during treatment to maintain the proper temperature. For this system, a freezer and then refrigeration is required, or a cooler that is specifically designed for the cap.
The technology has been used abroad for almost two decades but historically has had very limited use in the U.S. Up until December 2015, manual cold caps were the only type of scalp cooling available to patients. These types of cold caps have not yet been cleared by the FDA. The automatic scalp-cooling device, which is used in medical facilities, consists of a two-piece computer-controlled cap system. A cooled liquid is circulated through the cap worn by the patient during chemo. A second neoprene cap covers the cooling cap to hold it in place and keep the cold from escaping.
According to the American Cancer Society, some studies of the newer, computer-controlled cooling-cap systems have shown benefits for patients. Recent studies involving women receiving chemo for early-stage breast cancer found that at least half of the women using one of the new automated cooling-cap devices lost less than half of their hair. According to the society, the success of scalp cooling may be related to a variety of factors, including the type and dosage of chemo drugs used.
Some common side effects of using the caps include headaches, neck and shoulder discomfort, chills and scalp pain. “It can be cold to wear the caps,” Hornthal says. “Some patients say it is like brain-freeze after eating ice cream. They might wear warm clothes and a blanket, take a Tylenol pill beforehand and drink hot tea for comfort while using the caps.” After clearing the Dignicap scalp-cooling system in 2015, the FDA cleared the automated Paxman scalp-cooling system in 2017.
Approximately 125 in-patient and out-patient medical centers have installed automated scalp-cooling machines.
HairToStay focuses on patients in need
To make scalp-cooling treatments more affordable, HairToStay provides a subsidy to low-income chemo patients using either of the two automated systems or manual caps from four suppliers. Scalp-cooling treatments takes place during chemotherapy, which typically lasts 12 to 16 weeks depending on the particular chemo regimen.
To qualify for a subsidy of up to $1,000, most patients must be at or below three times the federal poverty level. According to 2018 federal poverty levels, that’s an annual income at or below $36,420 for a one-person household or an annual income at or below $75,300 for a household of four.
Patients who are being treated at UCSF or residing or receiving treatment in Texas, Atlanta or certain areas of Northern California, Hawaii or Nevada are eligible for special donor-targeted funds. Base grants of up to $1,500 are available to those patients whose household income is at or below 400 percent of the 2018 federal poverty level, a threshold of $48,560 for a household of one and $100,400 for household of four. Hornthal says some residents of Marin County might have lower eligibility criteria and receive a higher subsidy amount due to funds provided by the Safeway Foundation, private donors and the Mount Zion Health Fund.
Outreach helps raise awareness
Hornthal, who has two grown children with husband Jim, an entrepreneur who teaches innovation at the University of California at Berkeley’s Haas School of Business, commutes between her homes in Belvedere and San Francisco’s Marina District while volunteering her time to manage, market and raise funds as the president of HairToStay.
The organization raised $575,000 in 2017, 85 percent of which was spent directly on patients, Hornthal says. A majority of the funding was generated by private foundations. Community outreach has helped the non-profit garner individual donations as well.
One of the ways Hornthal spreads awareness of the organization is by enlisting others to hold house parties to share information on the treatment.
Riva Berelson, a longtime friend of Hornthal’s, held one of those parties last winter at her Tiburon home. She says she has a good friend who used the caps while undergoing chemotherapy and did not appear to lose her hair.
“The opportunity to use the cold caps goes beyond vanity. It allows an individual to maintain self-respect and privacy,” Berelson says. “Financing these caps helps individuals go on with their lives without distraction.” Hornthal has also partnered with hair salons to help raise money and awareness for the cause.
During Breast Cancer Awareness Month last October, 50 hair salons across the country, including three in Marin County, set aside a day to donate their proceeds to HairToStay.
Heather Fultz, co-owner of Revery Salon in Mill Valley, says Revery participated in the salon-a-thon in October as well as in a previous one held in May. She says she and her business partner, Christine Donahue, support the mission of HairToStay.
“People identify with their hair,” Fultz says. She added she’s seen photos of clients who have used the cold-cap system and have had satisfactory results.
“It looks like they have much of their hair still,” Fultz adds.
Hornthal believes finances should not prevent anyone who wants to try the cooling-caps from doing so. She says she’s received several testimonials from those who have received subsidies to help them afford the cooling caps.
One of those testimonials is from Kristen Haynes, a San Francisco resident who shared her story at a house party. Hornthal provided Haynes’ comments.
“I look in the mirror, and I don’t see cancer. I still see me, and I don’t look sick. I own my privacy. I don’t have to disclose my health status to everyone,” Haynes shared at the event. “I get to go to work, the grocery store, my daughter’s school and have a romantic life while being treated just like everyone else.” Haynes expressed her gratitude for HairToStay.
“The grant I received allowed me to make the absolute best out of a situation that is far from ideal.”
Article by Michelle Aschwald. Featured in Generosity, The Ark Newspaper.