By Antonio Green of Virginia Beach, VA. While working in Abu Dhabi, I found out I had kidney disease and needed to begin dialysis. I was able to continue working abroad for a few more years, but a 2017 trip to the hospital showed me it was time to move back home. Since then, I’ve noticed that a better, more coordinated system is needed to help dialysis patients. Even when I had a care coordinator, I found the system never really worked for me. Whether it was managing medications, doctors’ appointments or even my attempts to get a kidney transplant, [...]
Each year Dialysis Patient Citizens is pleased to bring kidney patients and transplant recipients to Washington, D.C. to meet with their legislators and talk about issues that affect their quality of care. Due to the ongoing pandemic and out of abundance of safety for our patients, this year we will be hosting our fly-in virtually on September 21st, with two opportunities of training beforehand. Participants will be selected based on the quality of their application, legislative priorities, and previous involvement in DPC's advocacy efforts. Next year when we are hopefully able to resume an in person fly-in, previous participation will also [...]
By Dori Wolf of Woodland, CA, DPC Patient Ambassador Finding out I had kidney disease in 1984 forced me to change a lot in my life. Thankfully, due to my work to stay healthy, I was able to avoid needing dialysis until 2007. Starting dialysis was a draining experience that required drastic changes to my diet and exercise habits, despite constantly feeling unwell. However, with the support of my family, I’ve been able to follow doctors’ advice and keep up with treatments. A major frustration, however, has been a lack of coordination in my care. I have 32 allergies to [...]
Despite the ongoing pandemic and economic crisis, many state legislators recognize the added challenges faced by dialysis patients every day. Some have responded by introducing legislation to increased dialysis patient access to Medigap plans to help patients cover their 20% coinsurance expenses. Others are working to advance legislation to help increase the pool of living kidney donors. DPC would like to recognize some of the patient leaders who are elevating the patient voice by educating state legislators on the importance of these efforts. DPC Board Members Adrian Miller and Pius Charles Murray are pressing for passage of critical legislation in their [...]
By Bryce Mumford, DPC Patient Ambassador My experience with dialysis extends four years: from when my first kidney transplant failed in 2014 to when I received my second transplant in 2018. During that time, the most frustrating thing I encountered was a lack of care coordination. I bounced between several doctors who treated my various health issues independently. Every doctor’s visit required me to provide my full medical history, which was time-consuming and labor-intensive. This was a burdensome task while still working a full-time job to support my family. However, my treatment center began implementing greater care coordination. This meant [...]
Please join us next month for our upcoming Patient Ambassador call: Post-Election Impact. Please RSVP to let us know you can attend the call. Call Details are below: Date: Tuesday, November 10, 2020 Time: 2:00 PM ET, 1:00 PM CT, 12:00 PM MT, 11:00 AM PT Follow these instructions at the time of the call: Call: 1-877-399-5186 Enter Meeting Code: 269 743 2061 Join Online (optional): https://dialysispatients.adobeconnect.com/advocacy/ Thank you for helping to improve the quality of life for dialysis patients by representing DPC as a leader in your community.
By Dortha Pugh-Thompson, DPC Patient Ambassador When my doctor told me I had kidney disease, I wasn’t aware of just how serious it was. Two years later, though, I passed out and woke up in the emergency room, where doctors said I was experiencing both kidney failure and heart failure. Shortly after, I started dialysis. Fortunately, I was able to do in-home dialysis and remain active in my community and my church. Now, even after receiving a transplant, I’ve found my calling as an advocate for dialysis patients, and I am passionate about helping others through their treatments. Over the [...]
Please join us early next month for our next Patient Ambassador call: Engaging with Elected Officials on Social Media During a Pandemic. Learn tips about what you can do to elevate your voice online. Please RSVP to let us know you can attend the call. Call Details are below: Date: Thursday, September 3, 2020 Time: 2:00 PM ET, 1:00 PM CT, 12:00 PM MT, 11:00 AM PT Follow these instructions at the time of the call: Call: 1-877-399-5186 Enter Meeting Code: 269 743 2061 Join Online (optional): https://dialysispatients.adobeconnect.com/advocacy/ Thank you for helping to improve the quality of life for dialysis patients [...]
Jeff Needham turned his lifestyle around with diet and exercise after he was diagnosed with kidney disease. A true inspiration, Needham competed in two Olympic distance triathlon relays, as well as a three-day, 230-mile cycling ride, in support of a better health care system. In addition, Needham warns about the increased dangers of COVID-19 for dialysis patients and highlights the benefits of participating in a coordinated care pilot program.
Elevate the Voice of Patients with Kidney Disease and Their Caregivers Our 2020 Annual Membership Survey is live, and it will remain open until Friday, August 21. We are counting on your participation, as patient feedback helps to shape our public policy agenda and patient education priorities for the next year. This year we ask that both patients and caregivers take our survey. Rest assured your responses will remain completely anonymous. We only share the overall survey results with state and federal level policy makers, so they will better understand your needs, experiences, and preferences. Your feedback is crucial. Therefore, we will [...]