With her Hair-Raising 80s Dance Party, Athi Myint-U aimed to raise money to help cancer patients at Massachusetts General Hospital access “scalp cooling.” Scalp cooling is a treatment that helps patients keep their hair during chemotherapy.
“I remember looking at myself in the bathroom mirror and thinking no one is going to know that I just went through three months of chemo.”
Held on May 18, 2019, it was not a typical community fundraiser. No one was golfing, running or biking to raise money. There were no cocktail dresses nor bow ties. Instead, headbands, scrunchies and neon fanny packs filled The Onyx Room in Lowell, Massachusetts. Popular 1980s hits by Madonna, The Cure and The B-52s brought stonewashed jeans, high tops and leg warmers to the dance floor. People of all ages stepped back in time and contributed more than $10,000 to help Mass General cancer patients.
Hair was the central theme of the evening. Athi and her guests brought the 80s back in style with highlights, big bangs, high pony tails and perms. Hair matters to Athi, a breast cancer survivor who had access to scalp cooling when she underwent chemotherapy in 2018. Keeping her hair had a huge impact on her recovery.
Athi remembers the day of her last chemotherapy session at the Mass General Cancer Center. She felt confident she would easily slip back into her life pre-diagnosis, without anyone knowing she had been sick.
“I remember looking at myself in the bathroom mirror and thinking no one is going to know that I just went through three months of chemo,” she says, “and that’s exactly the way I wanted it to be.”
On Her Own Terms
[Scalp cooling] plays a significant role in preventing hair follicle damage and subsequent hair loss.
Many cancer patients consider hair loss to be one of the most traumatic aspects of chemotherapy. Some forego treatment because of the threat. By preventing hair loss, scalp cooling has shown to help patients maintain a sense of normalcy, privacy and control.
“Scalp cooling was so important for me because I was able to share and talk about my cancer experience on my own terms,” Athi says. “I didn’t feel like I had to talk about it to others when I didn’t really want to, or have questions asked of me when I wasn’t ready to answer.”
Scalp Cooling Expansion
Scalp cooling is a safe, well established procedure. It is accomplished by one of two approaches — either a manual gel cap or an automated system. The manual approach involves the patient wearing a gel cap cooled to -25 to -30 degrees Fahrenheit. It is usually fitted one hour before chemotherapy, stays on during the infusion itself, and for an additional three to four hours afterwards. The technique plays a significant role in preventing hair follicle damage and subsequent hair loss.
Athi’s experience involved freezing caps in dry ice and manually replacing them as they warmed up. During the process, her husband, Greg, replaced her cap every 25 minutes, for 5 hours straight, once a week for 12 weeks.
Shortly after Athi’s treatment ended, Mass General began offering an automated system. It consists of a small refrigeration unit that stores coolant chilled to 17 to 25 degrees Fahrenheit. The coolant circulates through the caps.
“Since we started the program with machines, we’ve treated more than 100 patients at Mass General in Boston, Waltham and Danvers,” says Steven Isakoff, MD, PhD, Athi’s oncologist and co-founder and director of the Mass General Scalp Cooling program. “We’ve expanded the program from just breast cancer to include ovarian cancer, gynecologic cancers, lung cancer and we’re moving to other cancers. So, this has really become an important effort throughout the Cancer Center.”
A Question of Access
“It was really important to me and to the nurses that scalp cooling was not something that would just be available to patients who could afford it.”
Currently, not many insurance companies cover the cost of scalp cooling, which can run as high as $2200. Dr. Isakoff established an equity program with support from generous donors to help provide scalp cooling to more patients. “It was really important to me and to the nurses that scalp cooling was not something that would just be available to patients who could afford it,” he says.
This was Athi’s motivation when she decided to hold her fundraiser. Athi has dedicated more than two decades of her life to the mission of a local nonprofit. She has always cared about less fortunate communities. Athi hopes insurance companies begin covering the costs soon. In the meantime, she plans to continue with awareness building and advocacy efforts. “But,” she adds, “there’s no point in building awareness and stronger interest on the part of patients, when at the end of the day, they can’t afford to pursue it because it’s not covered by their insurance.”
To learn more about how you can support the Mass General Cancer Center, please contact us.
For additional information about how you can hold a fundraiser for Mass General, please visit our BeCause website.