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More than 100 patients, family members and healthcare providers from across the country recently converged on Washington D.C. to urge action on critical legislation including the expansion of value based care.
“I loved going to Washington,” said Frank Foy, a dialysis patient who receives treatment at Fresenius Kidney Care in Abilene, Texas. “I think it’s good for lawmakers to hear the patient’s perspective because sometimes our voice gets lost.”
The trip, organized by the nonprofit Dialysis Patient Citizens (DPC) in late March, is part of an annual advocacy day that allows patients to meet their representatives in Congress and heighten awareness of kidney disease. The goal is to improve the quality of life for dialysis patients through education and advocacy. In all, the advocates held 142 meetings with legislators.
“One of the most amazing parts of our annual advocacy day is hearing each patient’s story and how passionate they are for helping fellow patients,” said Kristy Lukaszewsk, DPC’s communications director. “They go into congressional offices and truly put faces on an issue that is typically a line-item in a budget, and legislative staff value the real-life input on the issues.”
Dialysis Patient Citizens received a record-setting number of applications for this year’s advocacy days, with more than 150 interested advocates. Those patients traveling from out of state must still receive dialysis, so many stopped first at the Fresenius Kidney Care Columbia Heights Center on a Sunday evening before beginning their series of meetings on Capitol Hill the next day.
This year’s event focused around increasing access to coordinated care as lawmakers consider the Dialysis PATIENTS Demonstration Act, a bi-partisan proposal that will improve the lives of patients with end stage renal disease (ESRD). The proposal would establish an integrated care program where interdisciplinary teams, led by a nephrologist, provide holistic management for all of the patient’s healthcare needs.
Patients described the chance to meet and advocate before lawmakers as an incredibly impactful experience. For Frank Foy, it was his first time ever in Washington. And on that first visit he had the chance to meet directly with Sen. Ted Cruz (R-Texas) and U.S. Rep. Jodey Arrington (R-Texas).
“It was such a positive experience that it pulled me out of a recent depression,” Foy said. “When you’re on dialysis you know your own mortality. But I loved Washington and I want to go back again, to continue trying to make a difference.”