Lack of coverage for LE therapy

kira66715

Found this article about a Canadian woman:

http://www.brantfordexpositor.ca/ArticleDisplay.aspx?e=3369296Helping lymphedema sufferers
By EXPOSITOR STAFF
Updated 4 days ago
Soon after her treatment for breast cancer, Pat Perkins began to notice persistent swelling in her left arm.

In June of 2004, the Brantford woman had a lumpectomy followed by chemotherapy and radiation. By October, the swelling began and she was diagnosed with lymphedema.

The condition is an accumulation of lymphatic fluids that occurs when there is removal of, or disruption or damage to lymph nodes or vessels, usually following surgery or radiation treatment for cancer.

"I had never heard of it," said Perkins. "I wasn't really warned about it prior to my surgery."

Trauma caused by an accident, injury or a burn can also cause secondary lymphedema like that suffered by Perkins.

Some people are born with a faulty lymphatic system. It may be present at birth, develop when puberty begins or in adulthood. That condition is known as primary lymphedema.

A 2009 study by the Canadian Lymphedema Framework found a lack of standardized care for patients in Canada, no provincial health coverage, a lack of resources for assessment, and a need to teach lymphedema prevention and self-management.

Tissues with lymphedema are at risk of infection.

Beverley Speechley, a registered massage therapist who runs a practice from her Erie Avenue home, said that while there is no cure for lymphedema, there is relief available. Pamela Monarch, another registered massage therapist in the city, also provides treatment.

"A lot of what I do is take away people's fears," said Speechley.

Treatment includes not only massage therapy, but also compression therapy involving the use of elastic bandages, sleeves, gauntlets or tights to control swelling.

"(With lymphedema) it's hard to move the limb," said Speechley. "There is pain because of the stretched skin. The muscles need to work harder to lift."

During massage, the soft tissues of the body are lightly rubbed, tapped and stroked. It is a very light touch, almost like brushing.

"It's very gentle movement of the fluid from an impaired area to one that isn't," said Speechley.

She also educates her clients about how to best manage lymphedema using exercises that promote lymphatic flow and about skin care to prevent infection.

Perkins said her arm can be painful, particularly in the summer when it's hot and humid. Doctors have told her she carries about a litre of fluid in her arm. She needs to wear clothing that will accommodate the swelling.

She wears a compressive sleeve and glove during the day and, at night, a special sleeve that channels the fluid up her arm.

Perkins said none of cost of the sleeves is covered by OHIP, nor are the massage treatments. She is able to have some of the costs picked up by her insurance, but says others are not. She said the massage treatments provide effective temporary relief but she is has the treatments less frequently than she'd like because of the cost.

"This is a medical condition and it should be covered."

BoobsinaBox

That last line says it all, doesn't it, Kira?  Why does this have to be so hard?

Dawn 

kira66715

Dawn, it makes no sense, does it? It's a medical condition, yet it's not covered by insurance. why?

It's not like we're asking for cosmetic surgery here....

Kira

jinky

I agree....I am in Nova Scotia and my sleeve and glove cost $600 this year.....provincial insurance does not cover lymphedema....I did go  to the physcial therapist at the hospital who showed me how to do MLA and who showed me how to wrap. Knowing how to wrap is the most important thing to know as this way you can control swelling.. Also wanted to say my hand and arm which had cellulitis in July is good. My hand is 90% better ( my fingers were bent under) with me doing exercises myself. I learnt the most from this website and Binney helped me sooooo much. BC Hugs jinky

kira66715

Jinky, so glad your hand is better, but the lack of coverage is appalling.

The Vodder School is based in Canada. I think I'll send this article to the head of it and ask him how his therapists get paid.

And I met Anna Towers MD, head of the Canadian ALF--she's a family doctor who became the head lymphologist: wonder what her take is on this.

Kira