Every time Sara Kindsfater-Yerkes showered during the weeks of chemotherapy, she was sure her shoulder-length, blonde hair might come out in her fingers.

But the waves held their grip to her head. That's because Kindsfater-Yerkes used cold cap therapy, a painful and expensive process that lets a patient going through chemotherapy keep their hair. 

Kindsfater-Yerkes said she spent about $3,000 on the therapy, which included leasing the caps and the dry ice she needed to cool them down. Most people spend between $2,000 and $3,000 on the treatment, she said.

Her husband would help her change out the caps every 25 minutes. She started an hour before chemotherapy, kept her head cold through the treatment and four hours after. 

Though an uncomfortable hassle, Kindsfater-Yerkes said keeping her hair was essential to her treatment for ovarian cancer.

"If you look in the mirror and you’re like look at that sick, sad person, that’s how you’re going to feel," she said. "I want women to have a choice. When you’re diagnosed with cancer, all your choices are taken away from you."

Cold capping, which works by constricting vessels in the head and reducing blood flow to the scalp, restricts the flow of chemotherapy drugs to hair follicles. The treatment was recently approved by the Food and Drug Administration and now one Charleston doctor is pushing the state legislature to require insurance companies to cover the cost of cold capping for his cancer patients. 

Dr. David Ellison's oncology practice, which is affiliated with Roper St. Francis, began using a cold cap system in March 2016. It's higher-tech than the manual option Kindsfater-Yerkes used. 

It costs about $600 per treatment, Ellison said, and people receive four treatments. He pointed out even though it's expensive, oncologists regularly use much more costly cancer drugs.

Patients pay out-of-pocket if they opt to use the cold caps, but if insurance companies agreed to cover the treatment, more patients would likely take advantage of it. Practices like Ellison's would also stand to gain financially.

But Ellison said it has been disheartening to watch patients resign to losing their hair because they can't afford the cold cap treatment.

"To know that they have that technology and they can’t use it is very deflating," he said.

Ellison compared the cold cap treatment to breast reconstruction surgery for patients who have to have a mastectomy. That procedure costs much more, he said. A federal law passed in 1998 required insurance companies to cover reconstructive surgeries.

BlueCross BlueShield of South Carolina, the largest private insurance company in South Carolina, does not cover cold cap treatment because there isn't enough evidence, a spokeswoman said.

“Scalp cooling, as a means to prevent hair loss during chemotherapy, is not a covered benefit because the effectiveness of this process has not been established," Patti Embry-Tautenhan, spokeswoman for the insurer, said in a statement.

Ellison said research has shown 70 percent of people who used cold cap lost less than half of their hair. 

"It’s not perfect, but it’s good," he said. 

One of his patients, Kim Murphy, said she lost only about 10 percent of her hair during treatment for breast cancer in 2016. 

"Insurance companies need to realize this," she said. "It’s not simply cosmetic. I didn’t want to be seen as a sick woman."

She and her husband, Jay, have been speaking with lawmakers about introducing a bill in the forthcoming legislative session.

There are no complications, Ellison said, and he recommends it to any cancer patient who wants to keep their hair. The caps do inflict temporary discomfort. They can be painful to wear because they are so cold. 

State Reps. Chip Huggins and Patsy Knight each said they tried last legislative session to provide money to health plans to pay for coverage of cold cap therapy. The money wasn't there, but they both resolved to try again in the upcoming session.

"I'll do everything I possibly can to pursue it," Knight said. "It breaks your heart to know it's out there but the average-income person can't afford it."

Anne Sass, grants director at Roper St. Francis, shared her experience with cold cap therapy with The Post and Courier in 2014. Then, it wasn't FDA-approved.

Sass said she made the decision to try to keep her hair because her parents were having a hard time accepting that their daughter had cancer. When she saw her father for his 80th birthday, Sass said it was important to her for everything feel normal. She has had the same page-boy haircut since she was 6.

Sass has had to undergo a number of surgeries since 2014. But being able to keep her hair has let her feel confident staying at work and attending family events.

"It hasn’t been an easy road," she told The Post and Courier recently. "But I have my hair.”

Anne Sass reunion

Anne Sass (center) celebrates a reunion with college friends in September. Sass contracted breast cancer in 2014 and used cold cap therapy to keep her hair. 

Reach Mary Katherine Wildeman at 843-937-5594. Follow her on Twitter @mkwildeman.

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