Attending the National Breast Cancer Coalition Summit in DC

Last weekend I attended the National Breast Cancer Coalition (NBCC) conference in Washington, DC, where I joined with other breast cancer advocates to learn about the amazing work this organization is doing to end breast cancer.

When I was diagnosed in 2010, I immediately started googling “cure for breast cancer.” The first link that came up was NBCC. I’d never heard of them prior to my diagnosis and what struck me most was their laser focus on finding a cure for breast cancer. We all know that there are hundreds of breast cancer organizations out there, but most of them focus on treatment, generating awareness of the disease, or offering support to women who have been diagnosed with the disease.

Those are all worthy initiatives and I believe there is a place for each of these efforts, but very few organizations put the bulk of their efforts into finding a cure for breast cancer. In 2010, when I was first diagnosed, NBCC set a deadline to know how to end breast cancer by January 1, 2020. That was what intrigued me about this organization.

For the next 9 years after my diagnosis, I was focused on getting healthy, raising my kids, working full time, checking off my bucket list of travel experiences, and making enough money to put my two kids through college. I followed NBCC and it’s work but never felt I had the time or the ability to become actively involved with their work until recently.

Now, with my kids almost done with college (both are in their final year and I’m eminently proud of the two of them!) I’ve been exploring where I want to focus my life. I left the weekend conference determined to find my niche within NBCC as I’m convinced that if anyone can find a cure for this disease, it is this organization.

The conference provided an update on the strides that NBCC has made in their mission, with a focus on two key areas: Immunology and Finding a Vaccine for breast cancer. The science was very complex, but the research scientists who presented updates on several key studies were very skilled at making the data accessible for a layman like myself, and I left the sessions feeling more optimistic about their ability to end this disease than I’ve felt since my diagnosis.

As I sat through the sessions, I was struggling with how I could contribute. I’m not an expert in research or science and I’ve never been actively involved in public policy. But on Monday afternoon, Fran Visco, the President of NBCC and a truly visionary leader, presented the Lobby Day briefing for our day on the Hill that Tuesday. I was incredibly impressed with the level of focus and clarity that was provided. As I sat through that session, and then the next where I met with my fellow New Jersey delegates (who are amazing and brilliant and committed to ending breast cancer), I began to believe that I could truly contribute to this team.

Tuesday morning was a bright sunny day for our visit to the Hill. I’ve never lobbied before and was a bit nervous about how it would go, although very intrigued and excited to learn how it worked. Joy Simha, our amazing New Jersey NBCC coalition leader, had scheduled an astounding thirteen meetings for the day and we were busy running between the three House buildings and then over to the Senate, from 8:30 a.m. straight through until 5:00 p.m., meeting with every single one of the New Jersey House of Representative’s and Senator’s offices. I was impressed with the level of support we received from each office we visited, and can only attribute it to the respect and support that NBCC has diligently generated on the Hill over the past 20 years.

Our three requests were:

1. Asking our representatives to continue to support the Department of Defense Breast Cancer Research Program for 2020. As a result of NBCC’s grassroots advocacy, the DOD $150 million BCRP budget was created in 1992 to “eradicate breast cancer by funding innovative, high-impact research through a partnership of scientists and consumers.” Folks, $150 million dollars is a lot of money that can make a huge impact on finding a cure for breast cancer. I’m all in.

2. Asking them to support and sign the Metastatic Breast Cancer Access to Care Act: A bill which will waive the 24 month waiting period for Medicare eligibility and the 5 month waiting period for Social Security Disability insurance benefits for individuals with Metastatic Breast Cancer. When a woman (or man) is diagnosed with metastatic breast cancer, they will most likely receive very toxic medical treatments that can be very debilitating and many will not be able to continue to work, so it’s very important that they are able to access disability and Medicare without any lag time.

3. Guaranteed access to quality care for all. The Coalition opposes and will work to defeat any and all efforts to repeal the ACA or replace it with something less expansive.

Now, the day was filled with important meetings, but I am a person committed to finding the humor in everything I do, so I kept noticing really funny parallels between our day and the TV show ‘Veep’ as we ran from office to office, scurrying like mice through these very long connecting tunnels between Rayburn, Canonn and Longworth.

I even saw minor celeb Alyssa Milano as we were leaving the Longworth cafeteria where we scarfed down some rather pedestrian sandwiches among the hundreds of other lobbyists and staff. The cafeteria reminded me of every corporate cafeteria I’ve ever been in, only a little bigger, and to be honest the food wasn’t really that great.

Anyway, there were lots of things going on on the Hill that day, and Alyssa Milano, who I follow on Twitter, was there for the Equal Rights bill that was being passed and when I saw her in the cafeteria, I smiled and gave her the thumbs up, and she smiled back and waved. Cool. I didn’t take a photo as I find it so annoying that people interrupt celebrities for selfies, but I swear I saw her.

As the day ended and I got in my car for the five hour drive home from DC back to Jersey, I was honestly surprised that I wasn’t even tired. I had been so invigorated by the days events that I had a ton of energy which was fortunate, since of course, I hit tons of DC traffic and didn’t get home until well past 10:00 p.m. and had been up since 6:00 a.m.

I left the summit hopeful for a cure, for the first time since I’ve been diagnosed in 2010. I have a daughter. I have 2 sisters. I have lots of friends who’ve been diagnosed and I learn of new women diagnosed all the time. I’ve felt helpless about a cure for the past 9 years. After this weekends conference, I feel hopeful and optimistic for the first time in years, that we can find a cure for breast cancer in our lifetime.

If you are interested in learning more about National Breast Cancer Coalition, or if you would like to make a donation, please consider this bold group of visionaries and leaders in research, public policy and breast cancer, who will together, end breast cancer.