By Cassie Cope The Charlotte Observer
WWR Article Summary (tl;dr) Many may not have heard of the "DigniCap Scalp Cooling System" because of the high cost, which insurance doesn't normally cover.
The doctor warned breast cancer patient Joelle Smith that her hair would fall out on Day 14 of chemotherapy treatment in 2002.
The prediction came true two weeks later when her hair started coming out in chunks while she washed it in the shower, so her husband helped her shave her head.
"I just felt like I stood out as a cancer patient," Smith said. "I didn't want that to be what people saw me as."
Smith went into remission, but was diagnosed with stage 4 four breast cancer in 2012. After trying a few other types of treatments, she learned this summer that she would have to go through chemotherapy once more.
But this time, she kept her hair thanks to a device new to Charlotte.
Many may not have heard of the DigniCap Scalp Cooling System because of the high cost, which insurance doesn't normally cover. The system also isn't common, with only two in North Carolina. The long treatment process can also be uncomfortable.
Oncology Specialists of Charlotte obtained one of the devices in March. Another is at Wake Forest Baptist Health Comprehensive Cancer Center in Winston-Salem. In July, the U.S. Food and Drug Administration expanded its use to treat all patients receiving chemotherapy for solid tumor cancers. Previously, it was just for breast cancer patients.
Smith, 51, was told about the treatment option when she learned she would have to go through chemotherapy once more, daunting news.
Just the word "chemo" reminded her of feeling sick and tired, and losing her hair.
Back in 2002, Smith was bald for about six months and during that time, she wore lots of hats and bought a wig she never used.
"I couldn't wait for it to grow back," she said.
Smith decided to use the DigniCap system, factoring in an out-of-pocket cost of $400 a treatment, not covered by insurance. In total, Smith said she paid $3,200 for 8 times using the treatment, but she finished chemotherapy keeping her hair.
"It's been worth it," she said.
Dignitana, which makes DigniCap devices, hopes to add more locations in North Carolina, said spokeswoman Melissa Bourestom.
"While scalp cooling does not yet have universal insurance coverage, we are working with third-party payers to change that and also work with patients directly to assist them in filing for reimbursement where available based on their insurance plan and coverage," she said.
To those who can't afford the system or similar devices, a national nonprofit, HairToStay, offers need-based grants to help patients pay some of the cost.
The maximum subsidy is usually about $1,000, according to the organization. Patients whose income is 300 percent of the federal poverty level, or $36,180 for an individual or $73,800 for a family of four, would qualify.
HairToStay offers subsidies for other cold cap treatments, including kits that can be shipped to patients: Arctic Cold Caps, Chemo Cold Caps, Penguin Cold Caps and Wishcaps.
Patients sometimes use online fundraisers to raise money for the treatments.
Charlotte also has services for women who lose their hair during chemotherapy, including Carolina Breast Friends, which offers services at 1607 E. Morehead St. at the Pink House.
"We provide wigs and scarves free to women with breast cancer," said Pamela Young of Carolina Breast Friends. "Many women come in with a friend or family member, and we make the experience as positive and fun as we can in our try-on room."
The organization also holds a monthly "Be Beautiful, Be You" workshop with a fashion consultant that teaches wig, scarf and make-up styling and celebrates the intrinsic beauty of each woman, she said.
For patients who choose scalp cooling treatment, not everyone will keep all of their hair. In an FDA clinical trial of 101 women who used the DigniCap system, about two-thirds lost less than half of their hair.
For Smith, using the system meant a long process that she described as uncomfortable.
First, she soaked her hair with water, then parted her hair down the middle and put on a papery blue bonnet to hold moisture against her head. Next, she put on the tight-fitting silicone cooling cap, followed by an insulating neoprene cap, like the material used in wetsuits. Then Velcro straps held everything in place close to the scalp.
The caps are really tight and once on, she said she would stay cold for four hours.
"Liquid coolant circulates throughout the silicone cap, delivering consistent and controlled cooling to all areas of the scalp," according to Dignitana.
The scalp is cooled to just above freezing, "reducing delivery of chemotherapy to the scalp," according to Dignitana.
Even during July and August she would struggle to warm up.
"I would get in my car that is probably 100 degrees (Fahrenheit) in the middle of summer, and I would drive all the way home for about 20 minutes with the windows up and the air turned off," Smith said. "Just baking, and it would feel so good to me."
Besides helping patients keep some hair, the DigniCap system also allows hair to grow back faster, said Dr. Dipika Misra, who works at Oncology Specialists of Charlotte.
"It does help that they are not faced with their cancer diagnosis everyday when they look in the mirror," she said. Keeping her hair made going through chemotherapy a lot easier, Smith said.
Recent scans have shown no sign of cancer, Smith said, but she is continuing with another chemotherapy drug that doesn't result in hair loss, to keep treating microscopic cancer cells that are likely still around.
Her thick blond hair is cut to just below her ears, a longer style than what she had been wearing before the treatments.
That was a precaution in case she needed to cover thinning or spottiness.
During the time she was receiving treatments, she had to be careful with heat products, and could not wash her hair as often or dye it.
"I was worried about my gray roots for sure," she said.
But those soon will be gone, she has a hair color appointment scheduled in December.