Bethany Hornthal
Co-Founder and Executive Director, HairToStay
In December of 2015, the Food and Drug Administration (FDA) granted clearance for the use of a technology designed to mitigate chemotherapy-induced hair loss. The only problem was that at least a third of patients who might want to use it would not be able to afford it.
My own journey with scalp cooling began with researching the results of scalp cooling in Europe, finding the funding for an FDA Trial with University of California San Francisco (UCSF), and ultimately co-founding HairToStay, the first national non-profit dedicated to making scalp cooling accessible to low-income cancer patients. To date, HairToStay has awarded over 2,200 subsidies to patients in all 50 states in the United States.
Cooling down the scalp during chemotherapy causes the blood vessels in the hair follicle to tighten up and constrict and thereby restricts the amount of chemo that will be able to enter the follicle and cause the damage that leads to hair loss.
Scalp cooling is a game changer. It gives a patient a sense of control during what feels like an otherwise overwhelming journey, as well as the ability to maintain their privacy and a sense of normalcy. When they look in the mirror, they can see themselves, not somebody who reflects the stereotype of a cancer patient, which can lead to an essential sense of well-being.
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In fact, scalp cooling may also save some patient’s lives, as one study has shown that 8 percent of female patients will turn down chemo specifically due to fear of hair loss.
Oncologists report that a number of their patients with metastatic Stage 4 breast cancer would typically decline any further chemo in an attempt to extend their lives because they didn’t want to potentially have to live out the remainder of their lives with a bald head or wearing a head covering. But since scalp cooling has become a more mainstream treatment, at medical centers such as UCSF and 400-500 other medical centers across the country, some of these patients are willing to go ahead with further chemo since the issue of baldness is less likely to be part of the impact of that decision.
The hard part is that scalp cooling treatments are not cheap. Most patients will be looking at fees that range anywhere from $1,200 to $3,200, depending upon the number of treatments they need, the equipment they are using, and the facility at which they receive their treatment. To date, insurance has played a minor role in covering these fees, with only a small number of private insurers willing to provide coverage and no Medicaid or Medicare coverage for scalp cooling. However, beginning in 2021, scalp cooling will be granted a CPT code, an insurance procedure code, which means that more insurance carriers may elect to begin to provide some coverage. Unfortunately, this will still leave a vast number of patients on Medicare, Medicaid, or with minimal or no insurance coverage hard pressed to take advantage of the option of scalp cooling.