A law on paper doesn't help you without your doctor's voice
I fought my insurance company for eighteen months over $1,800
When my oncologist told me I’d need chemotherapy, she suggested scalp cooling to preserve my hair but let me know that it’s usually out of pocket. So I called my insurance company to find out if it was covered. They told me it was part of my chemotherapy benefit.
When I submitted the claim, it was rejected. First, because of the location and procedure codes. Then, because it wasn’t explicitly listed as covered (it wasn’t listed as excluded either), in my durable medical equipment benefit. The wig would be covered. Then they made the claims process so deliberately confusing that most people would have given up. Countless hours of research, negotiation, and on-hold music — over a treatment that was FDA-cleared, oncologist-recommended, and already approved by the same company I was fighting.
I was also lucky in a way that had nothing to do with the fight: my oncologist told me scalp cooling existed.
That conversation happened because I had a doctor who thought to have it. That is not a standard of care. That is an individual choice made by an individual physician, replicated inconsistently across the country, with consequences that are anything but abstract.
What the data says about that conversation
A 2022 national survey of oncology providers published in JCO Oncology Practice found that while 62% of providers supported scalp cooling therapy always or most of the time, only 26% reported actually initiating those discussions with patients consistently. The leading reason for not bringing it up was financial — 58% cited concern about cost, followed by efficacy concerns (31%), staffing or facility limitations (24%), and safety (15%).
More than half of the oncologists who weren’t having this conversation weren’t having it because they assumed it was out of reach financially. A decision made on the patient’s behalf, before the patient was in the room.
I want to thank Paxman for making this episode possible. When I was going through chemo at UCSF in 2023, I used their scalp cooling system. It worked. I kept my hair when I thought I’d lose it, which mattered more than I expected it would.
It’s the same technology that’s helped tens of thousands of cancer patients worldwide over the past 25 years.
This episode was recorded at the 2026 UCSF RiseUp for Breast Cancer Prevention & Women’s Health. Because of Paxman’s sponsorship, we can share research and insights from the UCSF RiseUp conference with you. If you’re facing chemo and want to explore scalp cooling, visit coldcap.com
Research on patient-oncologist communication consistently documents gaps between what patients want to discuss and what actually gets covered. In one survey of breast cancer and melanoma patients, 63% wanted to talk about the effects of cancer on other aspects of their life — only 35% actually did. Scalp cooling sits directly in that territory: it’s about side-effect mitigation, with identity, dignity, and daily life during treatment rolled into it. It’s also, in some cases, about whether a patient shows up for treatment at all.
Evidence suggests that up to 8–10% of women may consider refusing chemotherapy or opting for a less effective regimen specifically to avoid hair loss. That number has appeared in academic literature and state legislative analyses for years. It keeps surfacing because the underlying problem hasn’t been solved.
The legislative wins, and what they don’t cover
