Senator Jon Tester and Lisa Maxwell

NHF Community Talks Healthcare Reform with Congress

Almost 300 people attend NHF's Washington Days
Author: Sarah Aldridge

See also: Healthcare Reform Passes.

“When I was born, the hospital didn’t know what to do with me,” said Jorge de la Riva, 15, of Houston, who has severe hemophilia A. “They didn’t know how to treat me.” So began the day for nearly 300 people with bleeding disorders and their families, as they shared their stories with their senators and representatives and their legislative aides during the National Hemophilia Foundation’s (NHF’s) Washington Days event February 24–25, 2010, at the Crystal Gateway Marriott in Arlington, Virginia.

The meetings with legislators and their staff were scheduled for the same day as President Obama’s summit on healthcare, which turned out to be good timing. Healthcare issues were top of the mind for Congress as the community advocated for two primary issues this year—eliminating annual and lifetime insurance caps and reinstating the Centers for Disease Control and Prevention (CDC) hemophilia program to ensure that comprehensive care at hemophilia treatment centers (HTCs) is not jeopardized. The president’s budget for fiscal year 2011 reallocates funds from the hemophilia program into the “Public Health Approach to Blood Disorders” program.

This year’s Michael L. Kuhn Award was given to Sen. Sheldon Whitehouse (D-RI), a healthcare reformer who co-sponsored legislation to increase minimum caps in insurance plans. In a speech delivered on the Senate floor in November 2009, he mentioned the plight of Rich Pezzillo, a staffer with hemophilia and an inhibitor. “I appreciate how poorly served people with chronic conditions are in the present system,” Whitehouse said. “We need a healthcare bill to serve the people of America better. This is a cause you are so justifiably passionate about.”

While many believe a final healthcare bill may be impossible, one senator—Sen. Byron Dorgan (D-ND)—was willing to pursue other avenues. The bill he co-sponsored with Sen. Olympia Snowe (R-ME) and Rep. Anna Eshoo (D-CA) could be attached to an existing bill. The Health Insurance Coverage Protection Act (S. 442/H.R. 1085) was proposed last year. “We will try to put it in an appropriations bill. We’ve got to get to a conclusion that eliminates these limits,” Dorgan said.

Members of the Great Lakes Hemophilia Foundation in Milwaukee met with Rep. Tammy Baldwin (D-WI) to thank her for circulating a “Dear Colleagues” letter requesting increased funding from the CDC for HTCs. After hearing stories of looming lifetime caps and the necessity of HTCs, Baldwin offered encouragement. “Please stay passionate,” she said.

For many community members, Washington Days is a must, no matter the distance. Lisa Maxwell of Great Falls, Montana, attended her first event last year, the day before her son Lane, then 13, hit his first lifetime cap. He has about six years until he reaches the next one. “Eliminating lifetime caps is my biggest concern,” Maxwell says. She found Sen. Jon Tester (D-MT) to be open to hearing her son’s story. “Within one month of our visit last year, he had signed onto the Dorgan bill.” This year, she shared with Tester a monthly bill of $25,000 for Lane’s factor product. The senator shook his head in disbelief.

NHF dedicates the first evening of Washington Days to advocacy training, but it really comes down to one thing: telling your story in your words. “When you’re passionate about it, it’s easy to get your point across,” Maxwell says.