Lymphedema patients try to convince Congress to change a law to make treatment affordable

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KNOXVILLE, Tenn. — Wednesday, March 6, is World Lymphedema Day.

Millions of people have it, some are born with it, and others develop it after cancer treatment or an injury.

An advocacy group here in East Tennessee is trying to make treatment more accessible for patients.

“I had breast cancer and I had radiation and right after that I got Lymphedema even though I supposedly was at low risk,” Becky Sharp said.

Lymphedema affects Becky Sharp’s right arm, her torso, and her right foot. Fluid buildup causes chronic swelling in a damaged lymphatic system. Some people may have it in both their arms and both legs and experience a limited range of motion, disfigurement, and skin infections. It can be deadly.

“Some go into sepsis. We’ve had friends who’ve died from complications of Lymphedema and the garments may have helped alleviate that,” she said.

Special garments alleviate the swelling.

Amy White is a Physical Therapist at BenchMark Physical Therapy and also a Certified Lymphedema Therapist, one of about 2,000 in the country.

She recommends a four-part treatment protocol:

Special exercises

Manual lymphatic drainage

Skin care

Compression garments

“Research studies have shown that all four components need to be done to successfully manage the Lymphedema so if only one or two are completed the outcomes are not going to be what you want them to be,” she said.

The garments aren’t just tight compression bandages. They feature what she describes as gradient

compression.

“For example, someone who is wearing a compression arm sleeve, we want the compression to be highest at the hand and then it lessons as it goes up to the top. That will promote the fluid from going to the lower area up to the higher area,” she said.

The compression garments are critical for treatment but they are also expensive. Becky Sharp is trying to persuade Congress to help.

“We’re in our sixth Congress. It’s called the Lymphedema Treatment Act.  All it is we want Medicare to have a code to pay for the garments. People will see Amy or others and get their arms down but then cannot afford the garments. You need two at a time about every six months. So if Medicare will do it then the insurances will follow,” she said.

“Amy White said, “I believe it would have a huge impact. More patients would have access to better coverage and health care for Lymphedema treatment and I think more patients would be willing to seek out that treatment.”

It’s a treatment that changes lives, and may even save them.

A support group for Lymphedema patients and caregivers meets the second Tuesday of the month. Join them at the Bearden Library at 5:30.

 

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