Advocating for Bladder Cancer Awareness and Research in Washington D.C.

In early spring an email arrived in my inbox inviting me to join a group of bladder cancer survivors from across the country to visit Washington DC and meet with legislators to discuss various concerns. These concerns were appropriately called “asks” because we were asking for their support for these bladder cancer-related issues. Of course, I said “yes” and made flight arrangements the following day.

Linda goes to Washington

Twenty of us from mostly different states around the country met late afternoon on a Monday to discuss the plan for who we were meeting and what we needed to relay to these high-level people. We were given the scheduled meeting times as well as who we were to meet. Those of us who were from the same state went as a team and some who had done this in prior years went on their own.

Tuesday started very early as we were staying in New Jersey and had to navigate the subway system to get to Washington DC. It then was a 15-minute walk to Capitol Hill. If you have never been to Washington DC, it is filled with people in fast motion, lots of traffic and honking horns, and buildings that extend the size of a city block. Just a note that sturdy walking shoes are required.

An incredibly busy place

Our day started at 7 a.m. as we had a meeting at 9:30. After getting through security we found that we had quite a distance to go to the office for the first meeting. Offices are large and quite a distance apart. People are scurrying down the halls and some have their pets with them. Definitely a pet-friendly environment and EVERYONE is in a hurry!!

We met with legislators and/or their assistants from our state – which for me was Ohio. The meetings were short but we were very happy to have any time at all with these incredibly busy people. I was paired up with a gentleman and his wife from Ohio. We were new to this challenge and a bit nervous being in this environment. Therefore we took turns starting the conversation.

Do you know anyone with bladder cancer? Well, now you do.

Regardless of who was the first of us to speak, after introductions we always began with, “Do you know anyone who has or had bladder cancer?” Interestingly enough every person replied, “No I’ve never heard of it.” It was a great way to start the conversation and always got their attention and allowed us to relay our personal cancer journey.

After our scheduled meetings were completed we were so invigorated that we just started knocking on the doors of other reps from our state and introducing ourselves. It was an incredible experience!

What we wanted from these representatives – the “asks”

There is a fund for cancer research that is distributed for several different forms of cancer research. As bladder cancer is not as well known – even though it is the 6th most common cancer – we asked that the fund for cancer research have bladder cancer specified so that it will always have some research money used for our form of cancer.¹

The most important “ask” that we are trying to have passed is H R 372 – a resolution, not a bill, that will designate May as National Bladder Cancer Awareness Month. As of April it had 78 signatures but needs many more to pass. Rep. Matt Cartwright (Pennsylvania) submitted this resolution and it has been referred on but needs more signature support. Please take a few minutes and reach out to your state and local representatives asking them to sign and support this resolution.

Making May Bladder Cancer Awareness Month could open many doors for us as well as alert millions of people to the early symptoms of this disease. Please ask your rep to support House resolution 372!! We asked that every senator and rep we met with to sign on to make May Bladder Cancer Awareness Month. Though it seemed like a little thing, we found that doing so takes time and lots of signatures and support.

I was honored to be a part of this annual experience and hope that we are successful in assisting Congressman Matt Cartwright as well as having money designated for bladder cancer research long into the future. We must do all we can to increase the awareness of bladder cancer. I hope you can help make this happen. It is up to us – the survivors.