Lymphedema advocates push for broader coverage

WASHINGTON - Lymphedema advocates took to Capitol Hill last week to gain support for legislation that would address a gap in treatment coverage for the chronic and often debilitating condition.

With a presidential election looming in the fall, the Lymphedema Advocacy Group, which held its 2016 Lymphedema Lobby Days April 19-20, wants to take advantage of the time it has now, before lawmakers get too distracted.

“There's momentum behind this,” said Judy Woodward, chairwoman of awareness for LAG. “We need to make sure that momentum builds and we keep the voices coming. The next two months are a critical window.”

In all, 71 participants from 21 states and the District of Columbia had 214 scheduled meetings with members of Congress. LAG is an all-volunteer organization made up of patients, caregivers, healthcare professional, and HME providers and manufacturers.

The Lymphedema Treatment Act would require Medicare to pay for compression garments, bandages and supplies to reduce lymphedema-related swelling and prevent its recurrence. Currently, Medicare pays for pneumatic compression pumps, as well as therapy provided by a PT/OT.

That's a little short sighted, say advocates.

“Even if a patient is granted a pump, they have to use compression between pump sessions with that compression being the garments that you can actually wear 23 hours a day,” said Heather Ferguson, founder and executive director of LAG. “Otherwise, all that fluid re-accumulates.”

The legislation, introduced in the Senate in December 2015 and in the House of Representatives in March 2015, has 16 and 202 co-sponsors, respectively.

As is often the case, despite widespread support on the Hill, there is occasional pushback about cost, says Bruce Carroll, director, health policy & reimbursement strategy for BSN, which manufactures products for wound care and related vascular diseases.

“It's a logical step that (lawmakers) understand that covering these garments would prevent things like hospitalizations or amputation,” he said. “They understand once you present it to them. The upfront cost is relatively low.”

If Medicare will pay for coverage, it's a good bet that private insurers will follow suit, say advocates.

“I do think that HME providers are seeing a lot of patients that don't have coverage for compression and so either they have to scrape together nickels and dimes to pay for the garments or they don't use them and then they rely solely on the pump, which is effective but only for a short amount of time,” said Christa Miehe, president of Essentially Women, a member services organization owned by The VGM Group. “There are a lot of people who would be better served health-wise and there are people that don't have $300, $400 or $500 to pay out of pocket.”