Del Mar resident Amy Caterina is using her voice to raise awareness about lymphatic disease and to fight for better treatment for all.
Caterina, who has lymphedema, has traveled to Washington, D.C. to lobby California representatives with the Lymphatic Education and Research Network (LEARN) and received World Lymphedema Day proclamations from both San Diego City Councilmember Barbara Bry and Assemblyman Todd Gloria.
“There’s a big push to raise awareness of the disease,” said Caterina, who is working on the behalf of fellow patients to ask for improved treatment and the need for more medical research.
Lymphedema is a chronic lymphatic disease that results in disfiguring swelling in one or more parts of the body. The disease can be hereditary or it can occur after a surgical procedure, infection or radiation. Many develop the disease after treatment for cancer, including 30 percent of breast cancer survivors. Veterans have also gotten the disease from physical trauma, infections and burn pit exposure.
Caterina had cancer 10 years ago and the unfortunate side effect of her cure was developing lymphedema following surgery to remove her lymph nodes.
“It saved my life and minimized it at the same time,” Caterina said. “It’s complicated because you don’t want to appear to be ungrateful for being cured of cancer but it’s misery… It’s extremely painful and uncomfortable. A lot of us are very disabled and don’t leave home, others try to hide it.”
As the blockage of the lymphatic vessels leads to fluid retention and extreme swelling in her leg, Caterina wears a compression garment.
She is sometimes unable to bend her knee and can’t turn her leg certain ways, “My leg gets very heavy and I find I have a lot of clumsiness, I trip,” she said. “The worst part is you have to keep moving because if you’re stagnant it gets worse, however, it can make the swelling worse to exercise.”
Too much swelling can lead to other issues and Caterina has been hospitalized with cellulitis a handful of times.
There is no cure, no drug treatment and it is often misunderstood. Caterina said medical providers are unprepared to treat lymphedema patients as education is lacking and only 15 to 30 minutes is spent on the study of the lymphatic system in medical school. There are no specialists treating lymphedema in San Diego and the standard of care for most patients remains the use of compression garments.
“We’re trying to change that. There needs to be better treatment. We have to solve the problem to get better treatment and a cure and we can’t do that unless money is allocated and more research is done,” Caterina said.Currently, Medicare and many other policies do not cover the main treatments for lymphedema, the compression supplies that typically last about six months and can be expensive.
Caterina got involved by advocating for the Lymphedema Treatment Act, a bill that aims to improve insurance coverage for compression supplies. The legislation relates specifically to a change in the Medicare law but it would set a precedent for Medicaid and private insurers to follow. The senate bill was introduced in February and the house bill was introduced in March.
For LEARN’s 2019 Lobby Days, Caterina was in Washington, D.C. with LEARN’s national spokesperson actress Kathy Bates, who also has lymphedema.
On April 9, Bates gave testimony to the House Labor, Health and Human Services Appropriations Subcommittee, making a case to increase National Institutes of Health funding and to expand its lymphatic disease research. As her testimony began, Bates took off her jacket to reveal both of her arms in black compression sleeves.
A survivor of ovarian cancer and breast cancer, Bates developed lymphedema following a double mastectomy and surgery to remove 19 lymph nodes. Bates said she experienced symptoms within a week of her surgery, including chronic swelling in her arms, pain and loss of mobility.
“I am profoundly grateful to the doctors for curing me of the cancer, but the cost of that cure means that I will live with an incurable disease for the rest of my life,” Bates said.
Her daily care regimen, like most with lymphedema, is the use of compression garments. With LEARN she is working to expand access to the treatment through the Lymphedema Treatment Act and to get more resources allocated for a better treatment option.
“When I was diagnosed I was appalled to learn that over 10 million Americans suffer from these diseases, that’s more people than those living with MS, Muscular dystrophy, ALS, Parkinson’s and AIDS combined,” Bates said. “This disease is so misunderstood and so misdiagnosed that many of us suffer silently for years without the benefit of knowing what afflicts us while the disease progresses.”
At the close of her testimony, Bates made mention of one of LEARN’s most passionate advocates, a 10-year-old named Emma Detlefsen who was born with lymphedema in both legs. Bates repeated Emma’s inspirational message from the beginning of a fundraising 5K in New York: “If I can do something hard for me, like walk back and forth across the Brooklyn Bridge, maybe a smart scientist can do something hard for them and find a cure for this in my lifetime.”
As lymphedema can be debilitating, it can be a challenge for patients to be involved and particularly, to travel, however, Caterina will return to Washington, D.C. on May 7 to lobby for the Lymphedema Treatment Act with the Lymphedema Advocacy Group.
“I look at it this way: I can travel, I can do this and there may be a time when I can’t,” she said.
May’s mission is to get 290 representatives to co-sponsor the legislation and move it forward. Caterina is one of just two people responsible for reaching out to all of California’s representatives. It is quite the undertaking but her strategy is to connect with local representatives at their local state offices as well as visit district offices in Washington, D.C.—she was pleased to announce that last week, Congressman Mike Levin agreed to be a co-sponsor.
The process has admittedly not always been easy—on her last trip she had 23 meetings in two days and did not meet with one elected official. More than ever, she is paying attention to how the government is run and is fully engaged in making it work for her.
“I think there’s hope and we can increase awareness in general and in our communities and make it happen,” Caterina said. “We are lucky that we are allowed the opportunity to talk to our representatives to make sure they get the message. If we see a problem, we can try to fix it, we can act. I think that’s very encouraging.”
Caterina is currently raising funds for the Lymphedema Treatment Act for the Lymphedema Advocacy Group. It's a $50,000 match for the month of April at crowdrise.com/o/en/campaign/lymphedema-treatment-amy. She is also raising funds for a LEARN 5K in Santa Monica on June 23 at grouprev.com/CALymphWalk2019-amy-caterina