Opinion: I was shocked to learn there was a way to save my hair during chemo

In December, I joined the 1 in 8 women in the United States diagnosed with breast cancer. Found on a routine mammogram, my tumor was small, and by all measures I had the best prognosis possible. The initial treatment protocol called for a lumpectomy, followed by radiation, which seemed doable if not desirable. But when one of my lymph nodes tested positive for cancer as well, chemotherapy was recommended. My chances of a full recovery were still excellent, but that’s when I fell apart.

Maggie Mulqueen - Maggie Mulqueen

With most chemotherapy comes hair loss, and with hair loss can come the loss of one’s agency: Until chemotherapy, I was in charge of who would know about my diagnosis. As a practicing psychologist, I didn’t want my condition to be apparent to my patients. The focus of therapy should always be on the patient, not the provider. I knew I would choose to tell some of them, but as a rule I don’t disclose personal information to patients unless directly asked or it is relevant to the treatment.

Society sends the message that caring about one’s hair is superficial, but once I learned there was a way to keep from going bald, I had an easier time accepting the recommendation for chemotherapy. Now that I’m on the other side of the treatment, I want to advocate for others to have this same opportunity — and for the health insurance industry to stop dismissing patients for whom retaining their hair is important.

It was a relief and a surprise when I discovered scalp cooling (which has two forms, scalp cooling systems and cold caps). My health care team offered me the Paxman system. I was fitted for two caps — an inner one that attached to a machine that circulated icy-cold fluid through the first cap and a second one that sat snugly on top.

The theory is that by reducing the temperature of your scalp, the hair follicles will not absorb the chemotherapy as readily and thus not be killed off completely. In general, a patient needs to wear the cooling system for 30 to 50 minutes before treatment, during treatment (in my case for two hours) and from 20 minutes up to five hours after treatment for best results. Initially it felt like a brain freeze, and though my body eventually acclimated, it was very uncomfortable. But the hope of maintaining at least 50% of my hair (as two-thirds of patients undergoing this treatment generally do) was motivation enough for me to endure the pain.

However, these benefits are denied to many cancer patients because cold caps are generally not covered by insurance in the US, and many hospitals are not equipped to provide this service. Another initial obstacle was the fear that cold capping allowed errant cancer cells to survive, but more recent research on the newer versions of cold caps have only found that to be rare.

I was stunned that neither I nor many of my colleagues in medical fields other than oncology had ever heard about cold capping. It was also shocking to discover that insurance companies often consider hair loss from chemotherapy a cosmetic issue. Original Medicare, for instance, doesn’t cover wigs even, because they are deemed not medically necessary. Some insurance companies do at least partially cover the cost of wigs, but this took years.

The stance that hair loss is a cosmetic issue is akin to blaming the victim; it implies that it’s the patient’s problem if there is a concern about going bald. However, concern about losing one’s hair from chemotherapy has deep psychological implications for one’s mental health. A dramatic change in one’s appearance can be a challenge to one’s identity. Furthermore, in the case of chemotherapy, the change is rightfully associated with announcing to the world that you are sick.

Overlooking a major factor in the mental well-being of cancer patients is not only counterproductive to their health but also cruel. A full head of hair can work wonders for one’s self-esteem at such a trying time.

As a colleague of mine who was also using scalp cooling wrote to me, “On days when the fog of chemo and my fatigued body seems a shadow of the healthy me that used to be, I take a little solace in knowing that I still have some hair. I hold it tenderly in my hands both literally and figuratively and am so grateful that I have something to hold on to.”

In contrast, a patient of mine who had breast cancer three years ago and was not offered scalp cooling wept at the sight of my full head of hair throughout my chemotherapy. She had struggled with her hair loss, feeling she had been reduced to being only a cancer patient.

Seeing what might have been possible reopened deep wounds. She recalled the feeling of needles pricking her scalp as her hair began to fall out, the skin irritation of wearing a wig and the effort she made not to look at herself in the mirror. She had to wait months for her hair to grow back, prolonging her sense of herself as a patient. In contrast, I looked virtually the same at the beginning and end of my treatment.

Measured against the total costs of breast cancer care, the cost of scalp cooling is minuscule and not necessarily more expensive than a wig. In my case, scalp cooling cost $1,200 over the course of my four chemo treatments. (My patient paid $5,000 for her wig.) Yet without insurance coverage, this option is only available to those with financial means. There are ways to apply for financial aid, and I was encouraged by my cap manufacturer to donate my caps after treatment, but these are hardly sufficient.

Insurance companies need to invest in the mental health of patients on par with their physical needs. It is also preferable, in my opinion, to prescribing medication to manage the understandable depression associated with such a dramatic change in one’s appearance. When patients receive adequate support for their emotional as well as physical ailments, their outcomes are better.

The lack of insurance coverage is surely part of the reason why scalp cooling, despite being available for more than two decades, is not widely known or available in the United States.

Some Americans actually found out about scalp cooling because of a popular British Peloton instructor, Leanne Hainsby, who revealed that she had used scalp cooling to continue to work publicly throughout her treatment without disclosing her diagnosis. Scalp cooling is much more readily available in the UK, where it’s covered by the National Health Service. But doesn’t every patient, regardless of geography, deserve the opportunity to have this choice?

Thankfully there has been some movement on the issue in the United States. Medicare recently started reimbursing chemotherapy centers for scalp cooling. Undoubtedly this change will increase its availability at hospitals in the US since hospitals’ costs for acquiring and operating this equipment will be alleviated. But insurance policies often still put the burden on patients to pay for the caps themselves without reimbursing them for it.

A devastating consequence of chemotherapy, hair loss is avoidable, and yet the means of preventing it are largely unknown or unavailable in America. I am so grateful that my medical team offered me the option of scalp cooling because I wouldn’t have known to ask.

I am so fortunate that I had the means to afford it. But I am also angry that this option is not more widely used. It is high time the public demanded that cancer patients receive cost-effective, compassionate care and coverage for mitigating the side effects of cancer therapies rather than shaming them for being concerned about their appearance.

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