Tell us about your organization and the work you do there.
Dialysis Patient Citizens (DPC) works to improve the quality of life for all dialysis patients through education and advocacy. We’re a nonprofit, dialysis patient-led organization that focuses on public policy issues that impact access to health care for our members. Our policies and our mission are guided solely by our membership. DPC is based in Washington, D.C., with offices in Chicago and Sacramento. I staff the DPC Chicago office.
What communities do you serve?
Our advocacy work in Illinois focuses on the state, county, and local levels of government. We partner with community organizations and dialysis providers to advance our advocacy and education outreach.
What populations do you serve?
We work on behalf of dialysis patients in Illinois to tell their story and share their concerns, creating a unified voice to reach and engage policy makers. Our Patient Ambassador program provides an opportunity for dialysis patients who want to take on a larger advocacy role to be a leader in their community on these efforts that improve the broader dialysis community. Membership in DPC, which is free, is open only to dialysis and pre-dialysis patients and their families. To join, visit https://www.dialysispatients.org/get-involved/join-dpc/
Why did you decide to join the Illinois Kidney Care Alliance?
Joining our work with the Alliance partner organizations enhances and increases the voice of dialysis patients in Illinois. Seeing how many organizations work with kidney failure patients raises the disease’s profile in Illinois and lets people know the profound impact it has on those who are affected.
What do you hope the alliance accomplishes?
I hope we inform elected officials and the public about the issues that dialysis patients deal with every day. When I talk to our dialysis patient members, they all say that elected officials do not know or understand the challenges of living with kidney failure. Patients with end-stage renal disease have two options to stay alive: Thrice-weekly dialysis treatments for the rest of their lives or a kidney transplant. Every elected official should prioritize public policy that provides continued access to health care for Illinoisans struggling with kidney failure.
What policy changes do those living with kidney disease need now?
Dialysis patients need legislators to support public policy initiatives that increase access to care, advance patient choice, improve quality of care, and promote financial security.
What can lawmakers do to help those with kidney disease?
Recognize and understand the challenges that dialysis patients face every day. Lifelong dialysis treatments take their toll on patients and their families. Financial challenges include the cost of insurance, co-pays, deductibles, and prescription drugs. It is hard to hold down a job when you need three treatments a week. Treatments are life-saving, but they sap time and energy. Depression and anxiety are always present. Patients also have transportation challenges, particularly in rural areas of Illinois.
What is something most people don’t know about dialysis/kidney disease?
There are more than 31,000 Illinoisans who are living with kidney failure, or end-stage renal disease, and are receiving dialysis treatments to stay alive. Kidney disease is the ninth-leading cause of death in the United States.
If you can share one story about the work you and your organization do, what would it be?
Providing a way for dialysis patients to advocate for themselves — and the greater dialysis patient community — is an incredible experience. The stories our members share with me about their lives are inspiring and clearly justify the need for good public policy support. On average, these patients sit through three- to four hour-long dialysis treatments three times a week just to stay alive. They know so much about the dialysis patient experience. Every day they reach deep inside themselves, their families, and their caregivers for strength and support to keep going. Dialysis patients need the support of passionate and dedicated elected officials, as well as the greater community. Join with us to advocate for favorable public policy that will improve dialysis patients’ quality of life.
Any additional information you would like to share about your organization?
Dialysis Patient Citizens reflects the voice of dialysis patients. Our board of directors is composed entirely of people with end-stage renal disease. We also rely on input from our membership to determine our education and advocacy priorities. DPC members are invited to complete education and advocacy surveys to help shape our focus and determine our priorities. Membership is free. To join, visit www.dialysispatients.org/get-involved/join-dpc/.