Chemotherapy Side Effect Management for Patients of Color – Why Equity Matters in Cancer Care

Conversation led by Maimah Karmo with Dr Beth McLellan, Oyetewa Oyerinde, Isa Pupo Wiss and Maricia Cole, on equitable side effect management for patients of color undergoing chemotherapy. April 2022.

Diversity and equity are high on the healthcare agenda, and while it is positive that these areas are finally being addressed, we know that the solutions are rarely easy or simple. When it comes to side effect management in cancer care, having appropriate individualized care is incredibly important as so many chemotherapy side effects are centered around skin toxicities and hair loss. The questions being asked when it comes to side effect management include – are patients of color receiving the same standard of care as Caucasian patients? What can be done to ensure that all patients are provided with tailored supportive care through their cancer treatment?

"Always offer, it is up to patient to figure out whether or not they can afford something, and not up to us to assume whether they can afford something"

Oyetewa Oyerinde
  • Equitable side effect management options, including scalp cooling, should be a viable choice for patients of color undergoing chemotherapy
  • The lack of clinical research that focuses on patients of color is problematic, particularly as there are doubts around the efficacy of scalp cooling for patients with type 3 & 4 hair, despite positive anecdotal patient experiences
  • A lack of appropriate hair care support and guidance from clinicians stems from a lack of education, placing an unnecessary burden onto patients as a result
  • Bias around financial situation means that patients of color are not being offered scalp cooling 

Diversity and equity are high on the healthcare agenda, and while it is positive that these areas are finally being addressed, we know that the solutions are rarely easy or simple. When it comes to side effect management in cancer care, having appropriate individualized care is incredibly important as so many chemotherapy side effects are centered around skin toxicities and hair loss. The questions being asked when it comes to side effect management include – are patients of color receiving the same standard of care as Caucasian patients? What can be done to ensure that all patients are provided with tailored supportive care through their cancer treatment? 

‘Certain patients are getting less care, less research, so they are going to need more care, more research, more communication, to bring it to that equal playing field’ – Oyetewa Oyerinde 

There is no doubt that in the field of scalp cooling, as with almost all medical research, there is just not enough data from trials that include, let alone objectively focus on, people of color. As a result, there is a significant lack of proven information, guidance and support – which becomes a self-fulfilling prophecy when it comes to successful practice and access. It is also important to acknowledge the trauma that centers around historical medical research, resulting in a lack of trust from black communities; so it is argued that offering places on trials is not enough. Recruitment will require a clinician-patient rapport, acknowledgment of experience, and education about improving health care through data.

Hair is a fundamental part of black experience and culture, and yet the false assumption often made is that because black women often wear wigs, weaves, extensions, and braids, that chemotherapy-induced hair loss is less problematic than it is for Caucasian women. This neglects that hair and the rituals around it, play at the center of self-care, community, social connections, and relationships for patients of color – therefore those who face CIA can in fact experience greater levels of isolation. Just because wigs offer a level of privacy, does not render them a sufficient antidote to a loss of sense of self.

‘Our hair is complicated and we need to have more treatment and trials and options to have better hair outcomes during and after cancer’ – Maimah Karmo 

Types 3 and 4 hair also requires specific care guidance, and many patients have reported that this has not been provided by their clinical teams. In these cases, this lack of understanding on the realities of hair care for black women results in patients not getting the appropriate support. This is important as hair care plays a pivotal role in the scalp cooling process. Ensuring the patient has the right information can make a real impact on the condition of the hair they retain, and can, at some level, impact the efficacy of the treatment. If this level of education is viewed as a burden on the clinician, this shifts the responsibility onto patients of color – unlike their Caucasian counterparts.

It is of course recognized that the financial implications of the lack of insurance coverage has an effect on patients of color, as it affects all patients, but it should not be used as a reason not to offer scalp cooling. The decision as to whether a treatment is affordable or not is that of the patient, not of the physician. It is imperative that patients of color are offered a choice. 

Looking to the future, scalp cooling should be a viable choice for patients of color, but this can only happen if the following is carried out: 

  • More research focused on patients of color is embarked upon, which will, in turn, improve the likelihood of insurance coverage
  • Appropriate supportive materials are made available for patients of color, which will be important to both patients and clinicians
  • An increase in the diversity of clinicians

The overall focus on improving quality of life and overall outcomes for patients is paramount for the oncology sector, but this must be conducted equitably in order to truly achieve both. 

Tigerlily Foundation Clinical Trial Program

Scalp Cooling for Chemotherapy-Induced Alopecia in Patients of Color: A Clinical and Mechanistic Study

Dilawari A, et al. Does Scalp Cooling Have the Same Efficacy in Black Patients Receiving Chemotherapy for Breast Cancer? Oncologist. 2021 Apr;26(4):292-e548.

Araoye EF, Stearns V, Aguh C. Considerations for the Use of Scalp Cooling Devices in Black Patients. J Clin Oncol. 2020 Oct 20;38(30):3575-3576.