Our Story: Two Paths Converge
Manual cold caps have been in very limited use in the US for the past ten years, however, it wasn’t until December 8, 2015 that a scalp cooling device was actually granted Clearance from the United States Food and Drug Administration (FDA).
The HairToStay story began in February of 2010, when breast cancer surgeon and researcher Laura Esserman, MD, MBA and Director of the Carol Franc Buck Breast Care Center at UC San Francisco wrote down the words “scalp cooling” on the back of a napkin at a Ferry Building restaurant in San Francisco and handed it to Bethany Hornthal. Dr. Esserman’s interest was spurred by a patient at the Breast Care Center who was about to undergo chemotherapy. The patient had heard about a scalp cooling device in Europe that women were using to save their hair during chemotherapy. She asked her doctor, Hope Rugo, MD, if UCSF could make the device available. Intrigued, Dr. Rugo discussed the request with Dr. Esserman.
If a scalp cooling device was going to be operated by a medical facility like UCSF it would have to be cleared by the FDA. Dr. Esserman assured Bethany that if she could find funding for a clinical trial, that UCSF would become the inaugural site for the research that could lead to FDA Clearance.
After receiving a breast cancer diagnosis in 2010, Patsy underwent her first chemotherapy regimen and proceeded to lose almost all of her long dark curly hair. However, by the time she was ready for her second infusion, she had heard about “Cold Caps” that could help protect her hair and enable it to grow back during her remaining chemo treatments. She ordered the caps and by the time she had completed her chemotherapy, her hair was already growing back. Understanding how it felt to be a bald woman and what it meant to be able to regain her hair during chemotherapy was all Patsy needed to inspire her to want to help provide this option to other cancer patients.
So she set up a non-profit called Cold Caps Assistance Projects (CCAPS) and began by subsidizing patients in Texas. In early 2014 CCAPS went national and many more patients requested subsidies.
But what started out as a stream of applications, turned into a flood once FDA Clearance came through. Patsy was having a hard time keeping up with the operational and financial demands when the phone rang in early 2016. What she assumed was another subsidy request coming in was actually Bethany, calling Patsy to find out what her vision was for CCAPS.
HairToStay is Born:
After a few weeks of back and forth calls, Bethany and Patsy decided to join forces. They launched HairToStay in April 2016, with a goal of building a national subsidy program that could be supported by partnerships with both philanthropic and commercial organizations. To date, HairToStay has raised over $1M and has awarded subsidies to over 600 patients nationally. Awareness and demand are growing exponentially.
To date, HairToStay has raised over $1M and has awarded subsidies to over 600 patients nationally. Awareness and demand are growing exponentially. HairToStay has struck a responsive chord with patients and also with the haircare industry. Patsy had a milestone (70th) birthday in 2017, and has decided to focus strictly on being our liaison for patients looking for just a little more personalized support, a role she performs with experience and empathy. So that’s our story so far. And with ongoing support from our generous donors and sponsors, we will continue to provide access to this very important treatment option and ensure that HairToStay is HereToStay – as long as we are needed. Thank You!
Bethany approached Dr. Ingrid Tauber, a psychologist, and president of the Laszlo Tauber Foundation, with a proposal, code-named HairToStay. Dr. Tauber, understanding all too well how emotionally devastating hair loss can be to patients, generously agreed to fund the necessary research. Bethany stayed involved in the project for the remaining 5 years, working with UCSF, Dignitana (the Swedish developer of the Dignicap scalp cooling system) and Dr. Tauber. On December 8th, 2015, the FDA granted the Clearance, and the team from UCSF and Dignitana toasted the wonderful victory they had achieved for patients across the United States.
Receiving FDA Clearance was the initial goal, and might have been the end of the story. But reality intervened as it became increasingly apparent that scalp cooling would likely not be covered by most insurance carriers for many years, thereby dramatically reducing the number of patients who could afford the treatment. Bethany was determined to find a way to subsidize scalp cooling for patients with financial need.