Recap: Lymphedema Lobby Days 2016

Last week I attended the Lymphedema Lobby Days, where I joined more than seventy patient advocates from across the country for an amazing, inspiring, nerve-wracking, exhilarating, and most of all empowering couple of days in Washington, DC! Together, we met with over 214 Congressional offices to discuss the Lymphedema Treatment Act and delivered information packets to all the other offices who have yet to cosponsor. It was hectic, but in the very best way!

Before going to DC, I was nervous. Like, really really nervous. I had no idea what the meetings would be like, and I was scared I would somehow flub it. This was no small peanuts, after all: this was meeting with congressional offices about an important piece of legislation and asking for a commitment to cosponsor while also educating them about lymphedema and sharing our personal stories, all in the span of about fifteen minutes. This was like a high-stakes elevator pitch, and although I was determined to do my very best, my lil’ lymphie heart was in my throat just thinking about the weight of these meetings.

When I went to the orientation reception that Monday night, I sat with a woman from my state team who is a medical education advisor for BSN medical Inc, and I shared my anxieties with her.

“Oh, don’t worry,” she assured me. “You’re going to be talking about something you live every day—once you get in there, the words will come easy.”

And you know what? She was right.

When I sat down at our first meeting the following morning with the rest of my state team, the words just flowed. Passion overtook me, and the power of what this bill means and what it would achieve was more than enough motivation to get over any nerves and speak the truth of a person who lives lymphedema.

I live putting on my thigh-high compression garment every morning, and doing the hour-long pump treatments every night. I live the manual lymphatic drainage massages, and wearing the bulky nighttime compression garment to bed. I live the mental anguish over simple things like buying a pair of shoes, and the unbridled joy of finding a good pair of palazzo pants. I live the fear of being seen as undesirable because of my leg, and the triumph of knowing my worth is not defined by my swelling. I live through the frustrated tears and the happy ones, celebrate the good days and navigate through the bad.

Like so many millions of others worldwide, I live lymphedema, and so the words came easy after all.

Let’s face it: lymphedema and the importance of compression are things I can talk about to a total stranger on the bus (in fact, that’s definitely happened once or twice!), so talking about it with a staffer in Washington who has the power to help change the way millions of patients access care was almost a breeze once I got in there. Talking about the bill felt urgent but natural at the same time, if that makes sense, and the two days of meetings and office drop-ins went by astonishingly fast. We did so much walking and hustling between offices and buildings that even my left leg (my “good leg”) became swollen, and I had to turn a spare right-leg compression stocking inside-out to use as a makeshift left-leg stocking!

The whole experience was incredibly empowering, and I had a blast meeting lymphedema patients and advocates from across the country—some for the first time, and some I’ve “met” before through the online lymphedema community! Everyone was so nice and there was a lot of joy in simply being around people who understand what it’s like living the lymphie life. I feel extremely fortunate to be fighting the good fight of lymphedema advocacy alongside such awesome, tenacious, and strong people—especially the Lymphedema Advocacy Group, who work tirelessly to organize these Lobby Days and have really paved the way for legislative change.

It felt amazing to be a part of something so meaningful and important. I’m fortunate in that my insurance covers my compression garments, but that’s not the case for everyone: I get countless emails from frustrated readers who don’t have access to compression garments because their insurance doesn’t cover it. It drives me absolutely mad to think—to know—that the health of millions of patients are at risk because they are not receiving the necessary daily treatment they need due to limiting, outdated language in insurance coverage. It’s absurd. But hopefully, the events of last week will change that!

We, as a community of patients and advocates, will change that.

Click on photos to enlarge them:

Photo by Julie F. Hanson, for the Lymphedema Treatment Act.

Photo by Julie F. Hanson, for the Lymphedema Treatment Act.

Photo by Julie F. Hanson, for the Lymphedema Treatment Act.

Representing the Maryland State Team! Photo by Julie F. Hanson, for the Lymphedema Treatment Act.

Me before meeting with Maryland Senator Ben Cardin’s office with the Lymphedema Treatment Act Maryland State Team.

The Maryland State Team with staffer Zicky Ababiya of Representative Van Hollen’s office.

About the Lymphedema Treatment Act

The Lymphedema Treatment Act is a bill that will provide Medicare coverage of the doctor-prescribed compression supplies (like garments and bandages) that are so necessary for lymphedema treatment. Currently, Medicare doesn’t cover compression supplies because they don’t fit under any benefit category—a frustrating logistical loophole that creates a serious barrier to care for patients.

We all know how crucial compression is to lymphedema management, not to mention how long-term daily compression significantly cuts down on incidences of complications, progression of symptoms, and disabilities that so often result from untreated lymphedema. Access to compression garments leads to less incidences of infections and hospitalizations, which in turn cuts down on healthcare costs; in a 2011 study cited by The Lymphedema Treatment Act, patients that underwent compression therapy had hospital costs at 12 fold less per year than those without compression therapy.

Medicare often sets the standard for private insurers, so the passing of this bill would benefit more than just Medicare recipients in the long-term and help patients achieve a better quality of life. Compression therapy is to lymphedema as, say, an insulin shot is to a diabetic: absolutely necessary!

Current Status

As a result of Lobby Days, the Lymphedema Treatment Act now has 212 total Cosponsors in the House of Representatives and 16 total Cosponsors in the Senate. This is amazing—before Lobby Days, there were 202 in the House, and 14 in the Senate. These numbers will only rise as more responses from Congressional offices come in, and the more cosponsors there are, the better chance the bill has of getting to committee.

We still need some help reaching majority, though. Just like Bill in Schoolhouse Rock says: it’s a long, long journey to the Capitol City!

Here’s how you can help:

• Email your Representative and Senators using this template letter
• Call your Representatives and Senators to make your voice heard
• Contact your members of Congress via social media with these sample tweets and posts

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
-Margaret Mead