Mr. Deer Goes To Washington – A call to advocacy.

From Gery Deer, Founder & Creative Director

Gery Deer and his Ohio delegation during their visit with congressional representatives in Washington DC.

I rarely discuss my volunteer work, but I thought it was worth mentioning in this case. I serve on the Adult Patient Advisory Council of the Association for the Bladder Exstrophy Community.  The organization focuses on supporting those affected by the rare congenital condition known as “bladder exstrophy.”

I was born with the same condition, thus my interest. It affects about 6,000 people in the United States, and only a few specialty hospitals in the country specialize in the predominantly pediatric component of treatment. As a child, I was treated in Dayton, Ohio, at what is now Dayton Children’s, by some of the best pediatric surgeons in the country. They were, it’s safe to say, figuring it out as they went. But they did a tremendous job, and here I am.

From just a few hours old, I was looked after by a contingent of physicians and specialists in what I’ve come to refer to as the “pediatric bubble.” My healthcare providers communicated with each other and consulted on various issues as they perfected this procedure or completed that surgery. As complex as it might seem, my parents were kept well-informed and had direct lines of communication with my general practitioner and my surgeons.

Unfortunately, once you hit about 21 or 22 years old, your pediatric bubble bursts and you are unceremoniously dumped into the world without proper adult urological care. Fortunately, my pediatric surgeon handed me off to someone he trained with, an adult urologist who looked after me for 25 years until his recent retirement. For the first time in my life, I was without a specialist, and my particular problem created a barrier to finding new care.

This situation is familiar to patients with many congenital conditions that carry over into adulthood. To maintain continuity of care, most continue to see their specialists for decades, long after the primary reconstructive surgeries are complete. Thankfully, I was left with few residuals as I grew up, but maintenance needs require somewhat more specialized attention. In addition, as patients age, their physicians must know something about the situation.

Bladder exstrophy, or BE, like many other congenital problems, requires a specific set of surgical skills, reconstructive knowledge, and urological and renal expertise. There is also a critical shortage of practicing urologists. All of this, combined with the potentially long-term commitment to the patient, leaves most urologists choosing not to treat BE patients, and therein hangs the problem.

Enter the Association for the Bladder Exstrophy Community, or A-BE-C, and its newly formed Adult Patient Advisory Council (APAC), of which I am an organizing member. While A-BE-C’s global mission began as primarily pediatric, the advisory council was established to provide resources for adult patients. The goal is to ease the transition from pediatric BE care into adulthood. That’s where me and my plane ticket to Washington, D.C. come into the story.

From March 2nd through the 5th, I was one of two on the council to represent our organization at the American Urological Association’s annual advocacy summit. It’s an opportunity to share urologically-specific healthcare concerns and potential solutions with congressional representatives. I was with a group of urologists, nurse practicioners, and an attorney, as we went, office to office, all over the Hill to get our meeage out. We met with staffers, and one congressman, shared the bills and issues we’d like them to support, and watched as the city locked down for the president’s first address to a joint session of congress. But, all in all, I think our group of delegates was successful in delivering the information.

Patient advocacy isn’t about awareness and support. It’s about action. Sadly, urological problems are generally the subject of lousy humor, ignorance, and ageism. But I assure you, there’s nothing funny about it for the patients and caregivers. For them, it’s a daily struggle to maintain proper care.

You can help by following A-BE-C on social media and sharing educational content. You can also contact your congressional representatives to remind them about this. These patients don’t need more research. They need qualified specialists and the peace of mind that their cause matters.

But regardless of the cause, the only way we can affect change is through action. Call your congressional representatives, send an email, write them a postal letter, or just show up at their office. The point is that you let them know what matters to you, their constituents. In this crazy, uncertain time, the only voices that can truly affect change and help those who can’t help themselves, are ours.