HairToStay focuses on getting patients with cancer access to cooling caps so that they reduce their chance of losing their hair.
Kristin Haynes remembers her first thought after her breast cancer diagnosis: The open-endedness of it all is so alarming.
“How is my life going to be impacted? How is my daughter’s life going to be impacted? Is this going to be something that takes my life the next go-around?” Haynes recalls wondering.
That was in August 2016. Now, nearly six months after her diagnosis, Haynes recently completed her chemotherapy treatment and will undergo surgery. Still, she feels she is in a strange place as she spends most of her days fatigued and trying to keep up with her 8-year-old.
One part of her life that didn’t feel so strange was her ability to keep her hair during her treatment with chemotherapy. Haynes was able to do so because of scalp cooling and the financial assistance that she received from HairToStay, a nonprofit organization that offers need-based grants to offset the expense of scalp cooling systems for chemotherapy patients being treated in the United States.
“This idea of having some control over something in this process, such as my hair, I think helped me feel like I had a little more control over my life in general,” she says in an interview with CURE. “That helped me stay hopeful and healthy. It helped me to not perceive myself as sick or unable to do things I had been doing my entire life.”
Shortly before her chemotherapy began, Haynes was doing research online on how to keep her hair and stumbled upon HairToStay. After going through its application process, she received partial reimbursement from the organization for the cooling caps that she was renting from Penguin Cold Caps.
Women from all over the country, like Haynes, are getting help from HairToStay, which officially launched in April 2016. It has approved nearly 300 applications and has raised about a half a million dollars to date.
Cooling caps have been established and used successfully in other countries, but are fairly new to the U.S., with only one current FDA-cleared device, the DigniCap scalp cooling system. The caps work by narrowing the blood vessels beneath the skin of the scalp, reducing the amount of chemotherapy medicine that reaches the hair follicles.
The price of the cooling caps varies depending on the manufacturer, the number of chemotherapy sessions and the number of months that the caps need to be used. But the average cost is $1,500 to $3,000 per patient and is not covered by insurance.
Knowing the price, Patsy Graham, a breast cancer survivor who used cooling caps during her own treatment, and Bethany Hornthal co-founded HairToStay. Both women volunteer their time to fundraise for donations that offset the costs for patients who have been diagnosed with a solid tumor, are in chemotherapy and have a household income that is up to three times the federal poverty level.
“There’s a number of our recipients who say that, ‘Without funding from HairToStay, I wouldn’t have been able to do scalp cooling, period,’ those are the people we want to make sure we take care of,” says Hornthal.
HairToStay works with five suppliers: Dignicap scalp cooling system, Chemo Cold Caps, Penguin Cold Caps, Arctic Cold Caps and Wishcaps.
Recent studies published in the Journal of the American Medical Association show promising results with the use of scalp cooling. In the SCALP randomized clinical trial, the authors concluded that women with stage 1 to 2 breast cancer receiving chemotherapy with a taxane, anthracycline or both, who underwent scalp cooling, were more likely to have less than 50 percent hair loss after the fourth chemotherapy cycle compared with those who didn’t receive scalp cooling.
However, there are some challenges in using cooling caps. Women have reported cold-induced headaches, neck and shoulder discomfort and chills during the cooling-down period.
Manuel cooling caps require the help of another person. These caps are kept in a special freezer before they are worn; however, during the chemotherapy infusion session, they thaw out and need to be replaced with a new cap about every 30 minutes.
Hornthal notes that finding an oncologist who is aware and patient-oriented is important to the process of using cooling caps. “It takes a little more effort on their part to have a patient using this device, because the oncologist needs to explain the scalp cooling option and patients may have additional questions at times throughout the process. It also takes more time in the infusion center,” she says.
But many women are willing to take on these challenges over the alternative — losing some or all of their hair. Haynes had two main reasons for giving cooling caps a try.
“At first, I had the awareness that there was so much of this one part of my life that was going to be public information, for anyone to access, as I am walking around living my life,” she says. “I didn’t love not having some say over who knew what about my health status. Also, I have a child. Things were changing for us, and I wanted to keep them as normal as possible.”
For more information on how to donate or apply for funding assistance from HairToStay, visit hairtostay.org/ or call 800-270-1897.