Coping With Chemotherapy-Related Hair Loss for People of Color
Strategies to reduce chemo-related hair loss have lagged behind for people of color. Scientists — and hairdressers — are trying to change that.
Losing hair due to chemotherapy — also known as chemically induced alopecia (CIA) — is one of the most dreaded side effects of cancer treatment. But it can be particularly devastating for women of color, for whom hair represents culture and an expression of identity.
The most widely acknowledged way to prevent cancer-related hair loss is called scalp cooling, a technology approved by the U.S. Food and Drug Administration (FDA) in 2015 that can prevent anywhere from 10 to 100 percent of hair loss caused by treatment.
The catch? The technology was mainly tested on those with Caucasian hair. And, as it turns out, it doesn’t work so well on those with kinky, dense, or coiled tresses.
Now, a groundbreaking clinical trial underway at Montefiore Einstein Cancer Center (MECC) in the Bronx, New York, aims to adapt scalp cooling for people of color.
Why Does Chemotherapy Cause Hair Loss to Happen?
Alopecia is a medical term generally applied to an autoimmune attack that the body mounts against its own hair, which can lead to total baldness. Chemically induced alopecia describes the hair loss caused by chemotherapy.
Although individual anti-cancer drugs differ in their impact, many of the most widely prescribed ones are devastating to hair.
Taxanes, used in many breast cancers, are among the most notorious hair destroyers. But other drugs, including such agents as cyclophosphamide, ifosfamide, busulfan, and thiotepa, are common offenders.
The hair loss occurs because chemotherapy drugs are designed to kill off cells that are actively dividing and replicating — something cancer cells do at a rapid pace. But hair cells also do this, and these drugs tend to decimate them, too, resulting in hair loss.
Many people begin losing locks within one to three weeks of their first chemotherapy infusion, and continue balding throughout the treatment.
Until scalp cooling came along, most people just had to go with it, relying on wigs, scarves, and hats, or embracing the bald look.
What Is Scalp Cooling?
Scalp cooling is a relatively recent technology that bathes the scalp in frigid temperatures delivered through a snug-fitting hat resembling a swim cap. The device is worn from roughly 30 minutes before each chemotherapy infusion to about 90 minutes after the treatment.
The technology is “based on the knowledge that cold blood vessels constrict, allowing less blood flow to the scalp and reducing the amount of chemotherapy drugs that reach the hair follicle cells,” says oncodermatologist Beth N. McLellan, MD, chief of the department of dermatology at Montefiore, and the clinician leading the clinical trial for the Albert Einstein College of Medicine.
The less the drug reaches the scalp, the more hair can, at least theoretically, be preserved.
“Scalp cooling is not 100 percent effective, but it prevents hair loss in up to 80 percent in cancer patients, depending on the chemotherapy regimen in many cases,” Dr. McLellan says.
A report published in August 2019 in Frontiers in Oncology found the technique not only partially safeguards hair for up to 80 percent of those undergoing chemotherapy, but it also promotes significantly better hair regrowth in the 12 weeks following infusions.
Two providers won FDA approval to deliver the scalp cooling: DigniCap and Paxman. Both use tight-fitting headwear that is either cooled with dry ice or embedded with pipes that continuously circulate cold fluid or gel.
Dry ice–cooled caps require frequent recooling, while the embedded caps maintain steady temperatures.
Neither method is foolproof, with success varying according to the kind of chemotherapy, the individual’s genetics, and the ability to adequately chill the scalp surface.
Cooling Caps: Why Don’t They Work Well for Black Americans?
One thing is definite, however: Black Americans benefit less from cooling caps than white Americans, and that’s in part because initial clinical trials, upon which approval was based, did not include people with different styles of hair.
To achieve its preventive power, a cooling cap must chill the entire scalp, something tough to accomplish with bulky, coiled, or dense locks, and while using caps not built to accommodate voluminous hair.
“Thick or curly hair can create a barrier between the scalp and the cap, with air pockets that stop the temperature from getting to the skin,” says McLellan.
Too much air and too little skin contact allows the frigid air to warm, making it ineffective.
“Scalp cooling had been studied and used in people of European ancestry for decades, but most studies didn’t include the race of the subject, so guidance was limited to what applied to a predominantly white population,” says McLellan.
Why Does Hair Matter?
For some people, the prospect of balding figures mightily in selecting a cancer treatment option. A article published in June 2021 in Skin Appendage Disorders revealed that roughly 14 percent of women say they’d consider refusing chemotherapy, which is known to lead to hair loss.
That hesitation, McLellan fears, threatens to impact a population already enduring relatively poorer cancer outcomes due to disparities in cancer care.
“When women opt of the regimens that might be most effective for their cancers, it exacerbates already existing disparities,” she says.
Overall cancer deaths have dropped in the United States, but Black Americans still face later diagnoses and relatively worse prognoses than white Americans. The relative lack of adequate insurance coverage for prevention and side effect control also tends to disproportionately impact vulnerable populations.
The Clinical Trial
The Montefiore trial is exploring how to ensure the cooling devices can be adjusted to deliver the proper temperature reductions to the scalp for individuals with other hair types. For people with bulky, curly, or coarse hair, that can be achieved, researchers believe, by either reducing hair volume, increasing cold conductivity, increasing skin-to-cold contact, or combining all those factors.
Local hairdressers experienced in serving a Black and Latina clientele were enlisted to help find better ways to braid hair, apply moisture, and adapt specially designed conditioners to essentially flatten and control the hair, enhancing the cooling.
“We work conditioners and water through the hair, and loosely braid or twist it into sections to ensure the hair has less overall volume,” says McLellan.
The Other Options
The “iffy” nature of hair-cooling lured most women of color away from prevention and towards prostheses — wigs and hairpieces. But many of the available products are tailored to white people, leaving Black Americans without high-quality, natural-looking choices.
Cancer survivor Esther Peters, 38, of Marlboro, Maryland, found her hair loss imperiled her financial survival as well as her sense of dignity.
“My doctor gave me a prescription for hair prosthesis, and of course, my insurance would not pay, so I did a Google search and found nothing that I, as a Black girl, felt reflected ‘me,’” she says. That, despite the fact that Black consumers are among the leading purchasers of replacement hair, as reported by Shoppe Black.
Wigs and hairpieces can be prohibitively expensive, especially without insurance help. And preventing hair loss itself, through scalp cooling, can rule it out for many cancer patients.
BreastCancer.org estimates that scalp cooling costs between $2000 and $2500 for a full chemotherapy course, excluding fees assessed by medical institutions. Monthly cap rental alone goes for $380 to $450 per chemotherapy session, plus shipping cost.
Meanwhile, insurance coverage is spotty. Medicare can sometimes defray up to $1,850.50 of the total bill, per a press release from Paxman, but that leaves those under 66 out in the cold.
So, some cancer patients rely on the American Cancer Society, which offers affordable hairpieces; CancerCare, which can often find free wigs for people with cancer; and the nonprofits HairToStay and the Rapunzel Project to help handle bills. Others simply give up.
“To use the cooling cap would have meant going to another location at difficult times while I was also still working and struggling to manage my treatments,” Peters shrugs “and ultimately none of the caps fit my head anyway.”
Solving that problem — and finding an ideal way to prepare the coarsest, kinkiest hair for preservation — has yielded some practical strategies to help women of color to reap ideal benefits from scalp cooling.
Scalp Cooling Patient Advice
The team at the U.K.-based scalp cooling company Paxman, participating in the Montefiore clinical trial, has posted video tips on YouTube for women with the thickest, bulkiest locks — dubbed type 3 and type 4 hair.
“The preparation enables hair to lie flat against the head, eliminate air pockets, and achieve optimal temperature conductivity without making highly porous hair bulk up even further from the added moisture,” says Claire Paxman, brand ambassador and global director of training for Paxman.
Her advice to women of color facing a chemotherapy infusion:
- Section the hair into at least four — and ideally eight or more — areas to expose as much scalp as possible.
- Fully coat each portion of hair in a thick, emollient-based conditioner.
- Spritz both the conditioned hair and scalp with water, or begin with water and end with copious amounts of heavy conditioner, while keeping the scalp completely wet.
- Twist hair segments into loose braids that can be easily undone later.
- Place a fabric headband around the head just below the hairline and under the ears, to improve fit and comfort.
Meanwhile, stay tuned for new study results.