From February 25 – 27, 2024, I had the opportunity to attend my 4th annual Zero Prostate Cancer Summit in Washington DC. I started going to the summits shortly after I was diagnosed with prostate cancer in 2019. I previously attended the “education track” to get updated on the latest information from medical professionals, but this year I took a big step and joined the group on The Hill to advocate for specific legislation related to prostate cancer. It was an interesting and educational experience.
We started Sunday night with a reception and the annual “Bold for Blue” awards ceremony. At the end of the night, all of the prostate cancer survivors stood up with their blue glo-sticks and lit up the room. It brings a tear to my eye every year. It is very touching to be surrounded by other prostate cancer survivors, along with loved ones, survivors, and other advocates.
Day 2 was full of sessions on the latest developments in prostate cancer, as well as advocacy training and a review of the legislative issues we would be discussing with our representatives on The Hill. We broke into groups by state, and planned our sessions. I was one of only 3 people from Pennsylvania- the other 2 were from Pittsburgh. (Fellow prostate cancer survivors- I’d love to have you join us next time!)
In our Pennsylvania group, I was honored to be joined by my new friend, Jody. At 55-years-old, her husband was a very healthy guy with no medical problems, when what he thought was an ache from a pulled muscle turned out to be extensive metastatic prostate cancer. Treatments were unsuccessful. They had to go to another country for a drug not approved in the U.S. it helped a bit, but he died just one year after his diagnosis, in September 2022. Needless to say, she is a strong advocate for early testing. When two female college students asked us for directions, Jody asked if their fathers knew their PSA numbers, and one girl got teary eyed and mentioned her uncle just died from prostate cancer, which led to a long discussion. When we got off the elevator with a dozen men in business suits, she asked if they all knew their PSA numbers, and found out one of them was recovering himself from prostate cancer. When a congressman came out of the men’s room with me and we started complaining about the hand dryer, Jody saw us and turned it into a discussion about PSA testing. Her openness about her late husband’s story and her willingness to talk to strangers about this important issue inspires me. As Jody says, if she can save just one life, it is all worthwhile.
In an unfortunate change in the schedule, Congress was not actually in session while we were there, but their staffs and legislative directors were still working, so we were scheduled to meet with them. We had 30-minute sessions with a staff member for representatives for each of our 3 PA team members, and we were able to get in a brief chat and drop off material with the staffs of our two PA Senators. Senator Casey’s staff was well aware of the issue, as he was treated for prostate cancer himself just last year. The legislative assistants’ days are incredibly busy- there would be one group of advocates leaving their offices as we were arriving for our meeting, and another group waiting to go in as we were finishing our session. It was quite a busy day- I walked 15,000 steps (equivalent to 7 miles) between buildings and walking around the offices waiting for our scheduled meetings. The offices are in beautiful buildings with impressive architecture. It was very interesting just walking the hallways and seeing the offices of Senators and Congressmen from both sides of the aisle that I always see being interviewed on TV. While there were hints of political differences by decorations on some of the politicians’ office doors, it was clearly kept out of all our meetings and discussions – prostate cancer hits men regardless of political affiliation. Any political discussion outside of prostate cancer legislation was out of bounds.
The staff members were all young and very impressive people. The average stay of a congressional staffer is just one year- they have long hours and low pay, but they are critical to the political process. I was struck by their attention and understanding and questions about the policy requests we made. I got to lead our session with Tevye Johnson, Congresswoman Madeleine Dean’s Legislative Correspondent. We discussed the fact that prostate cancer is the most commonly diagnosed cancer in men, and is the second leading cause of cancer-related deaths in men. In 2024, it is estimated that 300,000 men will be diagnosed with the disease, and 35,000 will die from it. African American men are more than 2 times as likely to die from the disease. If caught early, the 5-year survival rate is close to 100%, but for late-stage prostate cancer the 5-year survival rate is less than 30%. In our meetings, we presented 4 “asks”: (1) to co-sponsor the PSA for HIM (High-risk Insured Men) Act (H.R. 1826/S.2821) to eliminate co-pays/deductibles- similar to mammograms for breast cancer, (2) $120 million in funding for the Prostate Cancer Research Program (which has contributed 7 new prostate cancer treatments in the last decade), (3) $20 million in prostate cancer funding for the CDC with an emphasis on educating high-risk populations, and (4) signing onto the PC-CARE (Prostate Cancer Community Assistance, Research and Education) Act (H.R. 1315) to coordinate research and policy initiatives by various federal agencies and private organizations. Feel free to contact me if you have any questions about any of these programs.
if nothing else, remember that early detection saves lives. Do you and/or the men in your life know their PSA score?
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