Haytham Kaafarani, MD, MPH, FACS, a trauma and critical care surgeon in the Department of Surgery and leader of several health care quality and safety initiatives at Mass General, has been appointed the chief patient safety officer of The Joint Commission.
It was early 2015 and Dianne Austin was searching for a natural-hair wig—often referred to as Afro kinky/curly style. All the major cancer center boutiques in Boston carried only straight-haired wigs, so Austin resorted to calling local beauty supply stores that would accept her wig prescription. They too only offered straight-haired wigs.
Austin, director of Diversity, Inclusion and Engagement in Mass General Human Resources, had just been diagnosed with breast cancer. Although oncologists caught the cancer early, she would still need to undergo a lumpectomy, chemotherapy and radiation. Two weeks after starting chemotherapy, Austin would lose her hair.
“When I called around, one place said I could use their bathroom to try on wigs, another said I could use their supply closet,” Austin says. “You just want to focus on getting better, but you also want to look as much like yourself as possible and find some semblance of normalcy. It’s a scary thing be subjected to that. I should be able to go in and get the wig that I want and get the support of wig care and styling that typically is part of the hair prosthesis for medical purposes prescription. I knew if this is my experience, this is the experience of many other people.”
Austin says facing this roadblock while simultaneously coping with the rigorous cancer treatment left her shocked, frustrated and angry.
“Why aren’t these wigs available?” Austin says. “I couldn’t believe it. I can’t use my health insurance because nobody has the wigs that I need. I began to think, ‘How many other people are unable to use their health insurance for something that is such a huge part of their cancer treatment?’”
Despite her frustration, Austin viewed her situation as an opportunity to make a change.
“I saw it as a health care disparity because hospitals are not providing a product for all their patient populations,” says Austin. “I knew I had to do something.”
Austin created Coils to Locs, a medical wig resource for women of color who have lost their hair due to medical reasons and are searching for Afro kinky/curly wigs. In early 2016, she took a business accelerator program at TLE Consulting and Fairmount Innovation Lab in Dorchester, and over the four years, Austin learned about wig manufacturing, distribution and marketing. In late October 2019, Coils to Locs celebrated its pilot launch, providing wigs to Massachusetts General Hospital, Dana-Farber Cancer Institute and Beth Israel Deaconess Medical Center. The organization currently offers five core styles with plans for more options to be unveiled soon.
“What’s crucial about this is that it’s a business model that centers around a vulnerable population that’s even more vulnerable than our typical cancer population,” says Jonathan Jackson, PhD, research scientist in the Mass General Neurology Department. Austin met him at Mass General’s Black Men and Women Cancer Support Group, which Jackson was running at the time of Austin’s treatment. “It’s emphasizing survival and wellness and the idea that you can thrive while you receive treatment for cancer. Those notions of self-empowerment and achieving wellness are crucial for not only mental well-being but treatment efficacy. There is reluctance to undergo treatment because patients can lose their hair. Dianne’s business elegantly solves that issue.”
Today, Austin is cancer-free and eventually plans to expand Coils to Locs on a national level. First, however, she wants to strengthen the local program.
“To see we’ve come this far, I have to pinch myself,” says Austin. “A switch just flipped inside of me to make a difference in this space. Even though we’re just starting out, it feels good. We need to service all patient populations.”
Austin also created the Women of Color with Cancer Health, Wellness and Beauty Group in 2017, which aims to provide health and wellness support for cancer patients and a comfortable environment for patients to have an open dialogue about their journey. Workshops are held at the Kroc Center in Dorchester.
“Having cancer is one of the scariest things ever,” Austin says. “When my oncologist told me I was going to lose my hair, I thought that was even worse than the cancer! People said to me ‘Oh, hair grows back. You should be grateful to be alive.’ I think everyone has the right to grieve whatever that loss is for them, so I wanted to create a safe space where people could have those conversations and get access to health, wellness and beauty information.”
There are about seven workshops per year on topics such as mindfulness, nutrition, before, during and post-cancer diagnosis, makeup, meditation, and even chair massages.
“Dianne has really given us a way forward into building tools for empowerment, resilience, wellness for women of color anywhere and we definitely want to expand that beyond cancer,” Jackson says. “She’s paving the way.”
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