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As We Approach Washington Days 2017:


Posted on Facebook by The National Hemophilia Foundation

As we approach Washington Days 2017, this story of how one member of the bleeding disorder community persisted illustrates how much your personal story can make a difference.

“…I initially reached out to the former North Dakota senator because I had heard from a former Senate staffer, John McDonough, that Dorgan was the driving force behind the push to ban lifetime limits. Before the Affordable Care Act, many health insurance plans capped medical benefits at $1 million or $2 million. I wanted to understand how Dorgan became so passionate about ending those caps.

The answer was surprisingly simple: A constituent bothered him about the topic. Repeatedly.

“I used to use her as an example of how to be effective at lobbying Congress,” Dorgan, now a senior policy adviser at law firm Arent Fox, says. “She caught my attention, I cared about it, and it became personal.”

The woman was named Brenda Neubauer. Her son Jack has hemophilia, a blood disease that requires regular injections of an expensive blood clotting agent. The medication cost $30,000 each month…”

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