“Whew, you sure gotta climb a lot of steps to get to this Capitol Building here in Washington
Well, I wonder who that sad little scrap of paper is
[Chorus: Bill]
I’m just a bill, yes, I’m only a bill
And I’m sitting here on Capitol Hill
Well, it’s a long, long journey to the capital city
It’s a long, long wait while I’m sitting in committee
But I know I’ll be a law someday
At least I hope and pray that I will
But today, I am still just a bill”
– Dave Frishberg for Schoolhouse Rock! (1976)
This week I got to do my part help turn that “Schoolhouse Rock” bill into a law. On February 22, I travelled to Washington DC for my 5th ZERO Prostate Cancer Advocacy Summit. (See my previous blog from 2 years ago, “Mr. Leitmeyer Goes to Washington”.) I missed last year’s summit because of my knee replacement, so I was happy to be able to return again this year. A snowstorm was predicted for the East Coast, so I drove down a day early to avoid any traffic problems. Several people couldn’t make it because of the flight cancellations, but the meeting was still well attended, with over 100 advocates from across the country (including Alaska). The Summit was held in person at the Hilton Washington D.C. Capitol Hill, a short distance from the U.S. Capitol. It was great to see so many old friends, meet new attendees, and share our stories.
The Summit began with the annual “Bold For Blue” Award Ceremony. The celebratory event honored and recognized those who have significantly impacted our community in the past year through fundraising and partnerships to battle prostate cancer. In a touching glow-stick ceremony, current prostate cancer survivors are recognized, along with caregivers, supporters, and surviving family members of those who have passed.
The Summit continued bright and early Monday morning, when we received training to be effective advocates. Sessions included “What’s Going On in D.C.?”, “Advocacy All Year Long”, and “How to Hold a Hill Meeting”, along with sessions on each of the specific legislative “asks” we would be advocating for with our legislators. The “What’s Going on in D.C.” discussion is always one of the most interesting sessions for me, as partners from Cornerstone Government Affairs (one from the Democratic side and one from the Republican side) discuss what’s going on in Washington, including an overview of the House and Senate numbers and their thoughts on the mid-term elections, as well as how to be a successful advocate. One common theme that is frequently noted (and gives me a glimmer of hope) is that, for the most part, both sides of the aisle are generally friendly with each other and they do meet to find common ground where they can- what we see on TV is “political theater”, and is often different than what they think and say behind closed doors.
We sat at tables by state. At our Pennsylvania table, I was so happy to be joined once again by my friend Jodi from Pittsburgh, who lost her husband Chris at a young age from an aggressive form of cancer. When they ran out of options in the U.S., they had to travel abroad to pursue treatment not available in the U.S., but it was unsuccessful. Jodi has become a strong advocate for prostate cancer research, raising thousands of dollars each year, and asking almost every man we pass walking around Washington if they know their PSA number. She inspires me to continue to speak openly to educate others about prostate cancer. We were also joined by Ron, from Media PA, who was diagnosed with prostate cancer a year ago and was attending the Summit for the first time. African American men are two times as likely to die from prostate cancer. He was pleased to be with a group of people he could talk openly to about his disease as he comes from a culture where men don’t discuss their personal health struggles. And then we had Amy and Audra, two young women who both lost their fathers to prostate cancer. Their fathers were both veterans, who are at an increased risk of developing prostate cancer, and also more likely to have an aggressive form of the disease. We practiced telling our stories as we planned our approach for our meetings with our legislative offices on the Hill.
After a long day, that evening we attended a Congressional Reception on Capitol Hill, in the “Speaker Nancy Pelosi Caucus Room” of the Cannon House Office Building. It was a fun evening of appetizers, drinks, and conversation. It’s always exciting to walk the halls of congress and be in “the room where it happens”.
We got off to an early start Tuesday morning with a 7:15 AM breakfast followed by a “fireside chat” with Representative Troy Carter (D-LA), co-leader of the Congressional Men’s Caucus on the activities of his committee related to prostate cancer.
Then it was back to Capitol Hill to speak face-to-face with our legislators’ staff members on how our representatives can better support our prostate cancer community. We had 3 specific “asks”:
1- The Prostate Cancer Research Program at the Department of Defense is the most impactful federally funded prostate Cancer research program, leading to 7 new treatments of advanced prostate cancer in the last decade. This one is important to me, as I am one of the patient reviewers who help assess grant applications to determine their potential impact on the patient community. Unfortunately, the program received a 32 percent cut in FY2025, and many promising studies were left unfunded. We urged Congress to restore the PCRP to $110M funding level in the FY2027 defense appropriations bill.
2- 15,000 Veterans are treated for prostate cancer each year at the VA. It is the most common cancer diagnosed by the VA. We asked for the support and co-sponsorship of legislation to codify the VA’s Precision Oncology Prostate Cancer Program (POPCaP) in law, ensuring our Veterans continue to receive the highest quality cancer care through the VA. (The VA is currently planning to discontinue this program in favor of a broader oncology program, removing a critical commitment for veterans with prostate cancer across the country.)
3- The President’s budget request for FY2026 proposed the complete elimination of the CDC’s Division of Cancer Prevention and Control (DCPC), the home to almost all federal cancer prevention efforts (ARE YOU KIDDING ME?). Thankfully Congress not only rejected these cuts but provided small increases for the DCPC. We asked that members support sustained funding for the Division of Cancer Prevention and Control, and includes an additional $4M for Prostate Cancer Programs to support CDC’s outreach and education initiatives targeting high-risk men and their families.
We had a busy schedule, meeting with the offices of Mary Gay Scanlon, Chris Deluzio, John Fetterman, and Madeleine Dean. In addition, we dropped off information to over a dozen other PA Representatives (and Senator McCormick). We usually do not meet with the legislators themselves, but instead talk with their legislative aides, policy advisors, or chiefs of staff. For those with whom we did not have appointments, at a minimum we would just drop off our material for them to review. If they weren’t too busy, we could squeeze in a few minutes to pitch our requests even though we weren’t on their schedule. The staff members generally speak to advocates all day long as the legislators are running from meeting to meeting (At one point I saw Representative Chrissy Houlahan literally running down the hallway). Then the staff members summarize the information and requests of the day for their boss. I have always found the legislative aides to be well informed and interested in what we had to say.
Walking through the halls of Congress is always a highlight of the trip for me- walking past the offices of so many politicians I see on TV or read about in the papers, and occasionally seeing a few familiar faces. The outside of their offices are frequently decorated with various signs, photos, and flags showing what issues are important to them- for some, it is the photo of an ear-shot President Trump after his assassination attempt and a “Rest in Peace” Charlie Kirk sign. For others, it is a Pride flag or tribute to the Capitol Police Officers who protected them on January 6th. Many displayed signs supporting Ukraine or Israel or Palestine. Some have their doors covered with “sticky notes” from constituents. I did bump into Representative Al Green in the hallway, who later that night would be escorted out of the State of the Union address for holding up a sign “Black People Aren’t Apes”, protesting President Trump’s AI-generated social media video featuring Barack and Michelle Obama.
There is a special feeling that comes with walking through those halls. For a time, I am able to put away my political feelings and just take in the history of our Democracy. It is beyond my comprehension how anyone could have stormed into the Capitol and desecrated that historic space. I get chills seeing the boxes throughout the buildings with emergency escape hoods. Sometimes also called escape respirators, these hoods serve a key purpose: to allow an untrained civilian to quickly and safely get away from an area that may have a chemical, biological, or even radiological or nuclear threat present. I made a point to thank the Capitol Police for their service. They were in full view this day, as Capitol Hill was gearing up for that evening’s State of the Union Address. Streets were blocked off, fences were up, police vehicles and security were everywhere you looked.
By the end of the day, I had walked 17,000 steps and got blisters on my feet. I had gone through security checkpoints several times- taking off my belt, watch, etc. each time and having my artificial knee continually setting off beeping noises. At one point, after going through security I put my hand in my overcoat pocket and noticed my phone was missing- and then I realized I was wearing someone else’s coat. I looked around and virtually every man I saw was wearing a black overcoat. Luckily I caught the attention of the man in front of me, and it turns out he put on my coat and I put on his. All in a day’s work of advocacy!
If you would like any further information on prostate cancer in general, or on the legislative items we were fighting for, please contact me. And if you would like to join the fight, particularly if prostate cancer is an important issue for you personally, we’d love to see you at the next Summit. For more information, you can visit ZERO’s website at About Prostate Cancer | ZERO Prostate Cancer .
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