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2020 Lymphedema Lobby Days Recap:
163 Congressional Meetings in Support of the Lymphedema Treatment Act!
On March 2, 2020, nearly 80 advocates from 30 states took part in our 2020 Lymphedema Lobby Days on Capitol Hill in Washington, DC.
Participants met with 93 Senate offices, 70 House offices, and dropped off information and constituent letters to about 2 dozen more offices. An impressive day’s work!
Photos from many of these meetings can be seen here, and photos from the opening night reception and orientation can be seen here.
Since 80% of the meetings were with offices already cosponsoring, our main ask was that the Lymphedema Treatment Act be included in the next healthcare package that becomes law.
And that message was well received! It was not only the advocates expressing that this bill needs to pass. Congressional staff and members of Congress frequently remarked, “this bill has got to pass this year, it’s a no-brainer and has so much support!”
While we still have hurdles, it’s great to have this kind of momentum on our side now!
Please continue to contact your members of Congress by phone and email. Updates on the bill’s progress and additional ways in which you can support it’s passage are sent via our weekly newsletter. To subscribe link HERE.
If you plan to be in the DC area at any time and would like information about meeting with a congressional office about the Lymphedema Treatment Act please contact us.
What participants have said about their experience at Lymphedema Lobby Days…
Thank you for such a GREAT event! I learned so much about Lymphedema, even though I thought I was already pretty educated. This group is extremely organized, thoughtful and professional. THANK YOU again for coordinating this and I will 100% attend again!
~ Lisa
I am extremely proud to have been a part of this amazing event. For a long time, I felt alone, ashamed, and embarrassed of this disease because of the look of it. As a young person, not being able to wear certain clothing, shoes, boots or skirts affected me tremendously. I just hid, covered up or didn’t participate in a lot of things due to my leg. As I have gotten older, I have learned to become more accepting and more comfortable about my condition. I am still not all the way there, but I will educate and explain it to people (if they ask me in a respectful manner). Attending Lobby Days has given me a renewed perspective on the disease. Meeting other people, who deal with the same thing or who have family members who deal with Lymphedema was really tremendous. I was always a motivated person but, this has definitely given me so much more purpose.
~ Kimberly
They were two of the most significant, moving, powerful, and fulfilling days I have spent in my sixty-nine years. Don’t miss the next opportunity to join this extraordinary group working together for a wonderful goal.
~ Candace
It was one of the best experiences in my professional life!
~ Cindy
It was wonderful meeting everyone and learning their stories, and was both informational and inspiring. It was an experience that Sarah especially will never forget. She says that she is sorry that she has
lymphedema, but if she has to have it she wants to help others.
~ Beth, on behalf of herself and her young daughter Sarah
Attending Lymphedema Lobby Days is one of the most rewarding things I have done. It was awesome to see so many people from all over come together to make a difference. Experiencing the judicial process was an eye-opener as well. I am so glad I came.
~ Tonya
I was very nervous about participating in this event, but when I sat down to discuss the need for this bill, my passion overcame my self-consciousness. The other members of my team mentored me, and I was reassured and even exhilarated to find my voice in this arena. Feeling as strongly as I do about this situation, I felt that it was my duty to join in the effort to effect change, and realized that our opportunities to do this are one of our great rights as Americans. I appreciate the opportunity to speak to our legislators and will be ready and willing to do so again.
~ Adrien
It gets me a little teary eyed to think that we were able to make such a difference! Having lymphedema sucks, but I’m glad to have met such wonderful people through this adventure!
~ Jennifer
The Lymphedema Treatment Act is the best “medicine” for this patient. I am a newbie lymphie. I scoured the Internet for info, treatment, affirmation or maybe just hope, and found the Lymphedema Treatment Act site. I thought maybe I could venture to DC. I wanted my “guts” back to travel again by myself. It was the right decision. I was humbled and encouraged by the people I met and the work we accomplished.
~ Mary Jo
It was a life-changing experience to advocate for lymphedema and the Lymphedema Treatment Act. I feel so blessed that I was able to attend Lymphedema Lobby Days in Washington DC. I met so many wonderful patients and advocates and together we can make a difference. Thank you everyone for standing up and being heard.
~ Cindy
I will value and cherish this experience for the rest of my life. I signed up to accompany and support my sister, a breast cancer survivor with lymphedema, but during the trip realized that I knew someone else that was impacted with undiagnosed lymphedema and lipedema, to the extent that she lost her life days after her fiftieth birthday. Being able to witness and participate in the making of a law was a once in a lifetime experience!
~ Monica
I was ecstatic meeting so many different people with lymphedema. I felt like a kid in a candy store! I especially admire the young children who attended, they are true heroes.
~ Julia
It has been an immense pleasure for me to walk the halls of Congress – I have learned so much from the experience and I loved sharing our stories with those who can make a difference in our lives.
~ Corinne
I am so blessed to have such wonderful friends that I have made on this trip. In memory of my sweet husband Thomas, who passed away at age 43 from a cellulitis infection because he could not get coverage for his lymphedema treatment, I have devoted my life to this, and we are going to see this bill passed!
~ Jennifer
Lobby Days allowed me to be part of something very special — citizens petitioning government for positive change. The activists I met were driven by the common goal of making compression garments available to lymphedema patients. As we met with our representatives and knocked on doors, I was encouraged by the positive reception we received. All were willing to listen and I believe most want to do the right thing. But we have to organize and we have to ask!
~ Laura
Awesome – so great to be part of lymphedema history!
~ Jenny
If you plan to be in the DC area at any time and would like information about meeting with a congressional office about the Lymphedema Treatment Act please contact us.
