Raising awareness, talking to legislators and helping people to better understand the dialysis community are all in a typical day’s work for Bill Murray of Delaware.
Before being diagnosed with chronic kidney disease, Murray worked as a self-employed plumber. Initially told he would only have five years until he would need to start dialysis, a treatment that filters toxins out of the blood if your kidneys can’t, Murray made it 16. But once he began undergoing dialysis six days each week, he struggled to keep working and had to close his business.
Fighting each day to stay alive, Murray found his new calling in life: advocacy.
“When I had to shutter my business and basically just focus on staying alive through dialysis, I had to find something to do,” he said. “I couldn’t just sit there. The more I sat, the more afraid I became that I was just going to vegetate, so that’s when I really started delving into advocacy.”
Extremely active in fundraisers, local walks, and involved in advocacy groups with the National Kidney Foundation, Nephcure Kidney International, ESRD Network #4, ESRD NCC National Affinity Groups, Dialysis Patient Citizens and the American Kidney Fund, Murray makes frequent trips to Washington, D.C., and to his local state Capitol in Dover to talk to legislators.
“I tell people this all the time: I try to be a voice for the voiceless and a face for the faceless, and I consider dialysis to be a faceless community. When you say I know somebody on dialysis, they don’t put a face to it,” said Murray. “There are over 400,000 people on dialysis in the U.S., but most aren’t willing to speak or stand up. That’s who I do it for.”
And with dialysis patients facing increased discrimination at the hands of health insurers, advocacy efforts have never been more important.
After starting dialysis, Murray struggled to pay his medical insurance premiums. After reaching out to his dialysis clinic, he learned about a nonprofit – the American Kidney Fund – that helps dialysis patients get on their feet by helping to pay patients’ premium bills.
“Without help from the American Kidney Fund, I don’t know where I would have been. Dialysis is very difficult, but it is absolutely essential if you want to stay alive,” Murray said. “I would not have been able to afford my food, rent, medical treatment or doctors’ bills without it.”
As health insurers continue to limit dialysis patients’ ability to use nonprofit and charitable assistance to help pay their insurance premiums, patient advocates like Murray remain vital.
Murray explained that the core of the charitable assistance issue all comes down to money: “Insurers don’t want to have to cover any patient with end-stage renal disease. We’re expensive, and I’ve had to beg many places just to help cover payments.”
Despite the long road ahead, Murray continues to help raise awareness surrounding the issues that hundreds of thousands of dialysis patients face every single day.
“Dialysis should mean life, and the only way it becomes life is when we become our own advocate and start standing up for ourselves,” Murray said. “But that’s just my take. I want to try to change things, and I want to feel that I can make a difference in the dialysis community that I was thrust into.”
Start your advocacy journey today. Join the Chronic Disease Coalition in our ongoing efforts to protect the rights of all patients living with chronic and life-threatening conditions.