Sometimes even popular bills just don’t move in Congress.

Consider the legislation to get Medicare coverage for a condition called lymphedema, which causes fluid retention and swollen tissues when the lymphatic system is damaged or blocked. It’s a common side effect for cancer patients — especially breast cancer survivors — whose lymph nodes are harmed or removed.

An estimated 1.5 million to 3 million Medicare beneficiaries suffer from the disease, according to Illinois Democrat Jan Schakowsky, who sponsored a House bill last year. For many, treatment requires special compression garments that can cost from $80 to $1,000 and that need replacement every six months. Without adequate treatment, the disease can cause infections and potential disability. The treatments are covered by the Veterans Affairs Department, TRICARE, many commercial insurers and, as part of their Medicaid programs, 44 states and the District of Columbia. But not by Medicare.

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The Congressional Budget Office has not officially weighed in on the potential cost of Schakowsky’s bill, but many of its provisions were included in House-approved drug-pricing legislation that roughly estimated Medicare coverage would total less than $1 billion over 10 years.

The absence of coverage “is one more challenge on top of the monumental battle of fighting cancer,” Schakowsky said.

Six consecutive Congresses have attempted to get Medicare coverage for the treatment, bolstered by advantages that usually help push a bill through: huge co-sponsorship numbers (374 are behind Schakowsky’s bill), a celebrity advocate (actress Kathy Bates), low cost (in Washington terms) and sponsors who sit on key committees. Yet the legislation continues to stall.

Washington Democrat Maria Cantwell attempted to get her Senate companion bill with 70 co-sponsors added to an end-of-year health care package late last year but Congress did not take it up.

Former Rep. Dave Reichert, a seven-term Republican from Washington who left office in early 2019, worked for several years to push through legislation that would authorize Medicare coverage for the treatments, with increasing levels of support each time.

In Congress, despite significant support among members, the leadership felt that expanding the definitions for one disease would create a precedent for others, Reichert said.

“It boiled down to money and the worry that we would be opening a Pandora’s box for other disease changes,” Reichert said.

Not alone

Schakowsky’s bill isn’t the only health issue bill that hasn’t moved on its own. Another popular House measure would waive Medicare coinsurance requirements for colorectal cancer screening tests. After getting no traction despite 338 co-sponsors, it was also tucked into the House-passed drug-pricing measure.

Other proposals have hit similar walls. In the last Congress a measure to provide Medicare coverage and payment for certain pharmacist services in medically underserved communities had 296 House co-sponsors and didn’t budge. In both the current and previous Congress, efforts to establish grants, fellowship programs and training for palliative and hospice care have received support from well over a majority of House members, along with somewhat popular companion legislation in the Senate. But it died in the last Congress and has yet to move in this one since passing the House in October.

There were even some discussions of adding the lymphedema provisions to health care portions of last year’s end-of-year spending and tax package but that never came to fruition.

The House-passed bill specified that starting in 2022, Medicare would pay 80 percent of the cost of lymphedema compression treatments including garments, bandaging systems and other supplies prescribed by a physician would be added to the list of durable medical equipment covered by Medicare.

The language also would require HHS to evaluate Medicare coverage of lymphedema compression treatment items and determine whether other types of supplies for treatment should be covered as well. The evaluation must be submitted to Congress by Jan. 1, 2024.

Heather Ferguson, founder and executive director of the Lymphedema Advocacy Group, said she’s optimistic about success.

“We recognize and understand the challenges, but also feel like there is a strong chance Congress will want to get such a broadly supported bipartisan bill across the finish line this year,” she said.

While the legislation only would alter Medicare law, it could put pressure on Medicaid and more private insurers, which generally follow Medicare’s lead when it comes to coverage decisions.

Ferguson became familiar with the condition in 2006, when one of her two twin boys, Dylan, was born with primary lymphedema. It’s unclear whether it was the result of genetic or other causes.

Her advocacy took flight when she discovered the lack of insurance coverage for compression treatments. “I set my mind that I didn’t want to be constantly battling my insurance company. I wanted to fix the problem,” she said.

In 2009, she got legislation through her home state of North Carolina that would require all policies issued in the state to provide comprehensive coverage for the treatment. She started LAG in 2010 as a voluntary effort to raise awareness to get increased coverage at the state and federal levels.

For a small issue, the group has spent a relatively significant amount of money. It’s paid lobbyists for help for several years — roughly $465,000 since 2015, with $170,000 of that coming in 2019.

Health and Human Services Secretary Alex Azar’s position on coverage echoes that of his two predecessors — that he lacks the authority to include the supplies in the benefit category because they fall outside the current definitions for durable medical equipment. The catch is that they fall between requirements that equipment is either needed for just a few days, or, like a wheelchair, will last a few years.

Finding a path

While Schakowsky is a strong believer in taking action through individual legislation, the many single-disease issue bills that have wide support make including them in larger proposals like drug pricing simply the most practical route for the best chances.

It is likely the language the House approved will be tweaked further. Lobbyists and legislative staffers have been working with various congressional committees, federal agencies and CBO to fine-tune its costs.

Lobbyists are working to convince senators, especially those on the chamber’s Finance Committee, to put the lymphedema language in any health care package they take up. Cantwell, the Senate companion bill sponsor and a committee member, is continuing to push for the language to be added to drug-pricing legislation the panel approved last July.

But the options for incorporating these kinds of measures in broader bills are limited, said Rodney Whitlock, vice president at McDermott + Consulting and a lobbyist for Ferguson’s group.

“I don’t think you are seeing Congress comfortable with saying this one body-part or disease issue we are ready to make a move on individually,” he said.