Fighting for better insurance coverage for lymphedema sufferers

PHILADELPHIA (WPVI) -- Slowly but surely, there are successes in "beating the odds against breast cancer."

However, there are still big challenges.

2 local women are front & center in a campaign, taking on insurance coverage for a common complication.

Brenda Mitchell and Pat Halpin-Murphy have a lot in common -

Both worked in Pennsylvania state government, both survived breast cancer - and both have lymphedema.

Brenda's symptoms manifested after treatment.

"It stays swollen," says Brenda, as she points toward her left hand.

Pat's symptoms came 20 years later.

"1 in 5 women who have breast cancer develop lymphedema," says Pat, who founded the Pennsylvania Breast Cancer Coalition.

Lymphedema refers to arm, hand, or chest swelling, from fluid buildup in the lymphatic system.

It occurs after lymph nodes are removed during surgery, or damaged by radiation or some medicines.

"The lymphedema side of it changed my life," notes Brenda.

She adds, "It doesn't heal. It doesn't go away."

A permanent fix, in the form of lymph node transplants, is still in its infancy.

So compression garments and machines are key to control swelling.

But they're expensive - many insurers pay small reimbursements for them.

Independence Blue Cross, the Philadelphia area's largest insurer, detailed its coverage:

"Complete decongestive therapy (CDT) is considered medically necessary and, therefore, is covered when all of the following medical necessity criteria are met:

The individual has a diagnosis of lymphedema.

The individual is symptomatic (e.g., numbness, tightness, stiffness, heaviness, and limb swelling) for lymphedema with functional limitation (e.g., difficulty dressing, decreased walking endurance, difficulty swallowing, difficulty speaking, compromised airway).

The individual or caregiver is able to comprehend, comply, and continue the treatment regimen independently in the home setting.

The services will be performed by an eligible healthcare provider who has received specialized training in this form of treatment.

NOTE: The repetitive performance of CDT services to prevent regression or the point at which the individual is unlikely to attain further functional ability from additional therapy are considered maintenance. Maintenance therapy is not covered because it is a benefit contract exclusion. Therefore, it is not eligible for reimbursement consideration."

Medicare won't pay at all.

"Zero for the day sleeve, zero for the night sleeve, zero for the machine," says Pat.

"My day sleeve was about a hundred and 40 dollars," she notes.

"My night sleeve was more than that," she adds.

Many need hand gauntlets, too.

And 2 sets, so one can be washed, while the other is being worn.

"The machine I use was about 5-thousand dollars," says Pat.

Luckily, Pat can use a borrowed machine, and Brenda got her garments during a clinical trial.

Through the Pennsylvania Breast Cancer Coalition, they're pushing Congress to pass the Lymphedema Treatment Act to improve coverage.

They say lymphedema is a health risk, because it can lead to infections.

It's also emotionally damaging.

"It all affects your self-worth, your feeling of value.," notes Brenda.

The Lymphedema Treatment Act has strong bipartisan support in both the house & senate, but it's still in committee, so the coalition is urging women to call their representatives.

And on Sunday morning, join the American Cancer Society's fight against breast cancer at the Making Strides Against Breast Cancer walk will be held at Citizens Bank Park.

Registration is at 8:30.