By Michael Pernick
6 Mar

The One-Two Punch

Thursday, March 06, 2014

Last week, I joined advocates from across the country in Washington, D.C., to meet with our elected leaders and their staffs and urge them to support Americans living with congenital heart disease (CHD). What we were asking for wasn’t unreasonable: We want the government to fully fund a Centers for Disease Control and Prevention (CDC) surveillance program. Millions of Americans are living with CHD; in fact, it is the most common birth defect. Nevertheless, the vast majority of adults with CHD – more than 90% – aren’t getting the care they need. In fact, we don’t even know who most of those people are, and we don’t have data on what happens to adults as they age out of the pediatric system.

In 2012, Congress originally funded a “pilot” program through the CDC to the tune of $2 million dollars (which is less than one one-millionth of the federal budget). This pilot program was a good start, but it only funded CHD surveillance in three cities. Our mission in D.C. last week was primarily to ask Congress to expand this program.

I was fortunate to have a truly phenomenal team of advocates to work with. In addition to two adults with CHD (myself and fellow ACHA Ambassador Bill Camilleri), we were also joined by Dr. Ali Zaidi, an ACHD cardiologist and director of the Montefiore Adult Congenital Heart Disease Program (MAtCH) at the Albert Einstein College of Medicine in New York. Dr. Zaidi happens to be one of only a handful of doctors in the country actually trained to be an adult congenital heart disease specialist.

We had seven meetings with House and Senate staffers, and our team could not have been more effective. Bill and I kicked off the meetings. At each meeting, we talked about our backgrounds, shared our stories, and answered questions. We made an emotional appeal.

Then Dr. Zaidi jumped in to explain the medical side. At each meeting, he described the severity of our national crisis when it comes to ACHD care. Because of the lack of surveillance, we have no idea exactly how many adults are living with CHD. And because we don’t have that basic data, it is difficult to encourage new doctors to specialize in treating adults with CHD, it is challenging to get NIH grants for research, and it is nearly impossible to gather information on what to expect when children living with CHD grow up.

By the end of our “one-two punch” – first the emotion, and then the facts – these staffers were in shock. They understood the gravity of the situation, and I am confident that several of the staffers we met with will fight for us when they meet with their boss to discuss legislative priorities. It was a successful day, not only because we had the right message, but because we had the right people delivering the message.

Patients and family members can’t do it alone. Medical professionals can’t do it alone. When we come together and make the case as a team – patients and doctors sharing their perspectives – there is no goal we can’t accomplish.


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