Deer In Headlines II

By Gery Deer

According to the National Kidney Foundation, more than 20 million Americans are affected by renal (kidney) and urological conditions. It goes on to say that millions more, currently unaccounted for, are at risk. The causes range from congenital issues to diseases that affect the urological system.

I happen to be in the category of the former. In March, I’m joining a couple of hundred other patients, caregivers, and advocates to meet with congressional representatives about more support to care for, as I will explain in my case, adult patients with congenital urological conditions.

I was born with a rare condition known as bladder exstrophy. It affects about 40,000 people worldwide, and only a few specialty hospitals in the United States specialize in the predominantly pediatric component of treatment. As a child, I was treated in Dayton, Ohio, by some of the best pediatric surgeons in the country who 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.

I’ll represent our organization at the American Urological Association’s annual patient advocacy summit. It’s an opportunity to share these concerns and potential solutions with congressional representatives.

I hope they’ll listen to some of my ideas, including a subsidy or tax credit funded to help encourage young doctors to specialize in urology and, even more so, help them to dedicate some of their practice to adult BE care. With all the tragically unsympathetic, uninformed budget cuts, I wish I was more optimistic. But I will still try, and you may be able to help.

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.