Congress still has a chance to do one more thing right this year.
The Lymphedema Treatment Act (LTA) will improve coverage for the treatment of lymphedema from any cause by amending the Medicare statute to allow for our compression supplies to be covered. Although this legislation relates specifically to a change in Medicare law, it would set a precedent for Medicaid and private insurers to follow.
It is a bi-partisan bill with more than 450 House and Senate co-sponsors (there are only 535 members), making it the most supported healthcare bill in Congress. The only reason it is not yet law is that Sen. Majority Leader Mitch McConnell (R-KY) has refused to bring it to the floor for a vote.
Lymphedema — swelling or edema — happens when the lymphatic system isn’t working properly. It is sometimes a side effect of breast cancer treatment and is considered secondary lymphedema.
Before being diagnosed with breast cancer, I took my lymphatic system for granted. If you’d asked me anything about lymph nodes, I might have nodded, thinking of when my throat is swollen to touch.
A 2009 study of Philadelphia-area breast cancer patients revealed a five-year cumulative incidence of lymphedema of 42% in a cohort of 631 women.
I developed lymphedema after two breast cancer surgeries in the summer of 2017. My first surgery did not capture all the cancer. My form of breast cancer, invasive lobular carcinoma, wears an invisibility cloak that defeats MRIs and mammograms. And I had hot spots in the other breast; logically, I opted for a bilateral mastectomy without reconstructive plastic surgery.
As an employee of King County elections at the time, my lymphedema treatments, which included custom compression supplies, were covered through Regence.
As noted in my appeal below to Senators Cantwell and Murray and Representative Larson, my lymphedema treatments – surgery, pumping equipment, physical therapy – are covered by Medicare. The exception: my compression garments. And without compression garments, all of those other treatments are marginal at best.
That’s penny wise, pound foolish behavior.
- Every six months, I need two new gloves (hand/forearm gauntlet) and two new sleeves. Retail cost for these is about $1K. (I think. Pricing for medical things is a crap shoot.)
- I also wear a nighttime garment that will need replacing soon. Several hundred more dollars.
If you’d like to support us, please contact your US Senators (especially if one is Republican) and your Representative.
To legislative staff (Sen. Cantwell, Sen. Murray and Rep. Larsen):
As your constituent and someone who cares deeply about this issue, I implore you to ask your boss to urge leadership to include the Lymphedema Treatment Act (H.R.1948 / S.518) in the year-end legislative package.
Ensuring that lymphedema patients have access to the doctor-prescribed medical compression supplies we need to effectively manage our condition at home, prevent complications, and stay out of the hospital has never been more important.
After being diagnosed with breast cancer (ILC) and undergoing a double mastectomy (no reconstruction), I developed lymphedema in my left arm and hand. I have a mechanical pump system that I use every night for an hour. I’ve had two surgeries to try to minimize my risk of infection. All of this is covered by insurance.
But these treatments still require that I wear a custom compression sleeve and glove, garments that have a six-month life span. I need two of each every six months. Medicare turns a blind eye.
This bipartisan bill has more than 450 House and Senate co-sponsors. It is the most supported healthcare bill in Congress, and I hope your office will do everything possible to ensure that it becomes law before the end of the 116th Congress.
Thank you, and please contact me with any questions.