Sharing with members of the kidney community is what NxStage Patient Advocates (PAs) do best. Whether speaking with patients or physicians, in-person or virtually, their mission is to talk about their personal experiences on peritoneal dialysis (PD) and home hemodialysis (HHD) and be a listening ear for the concerns and questions that often come with dialysis therapy.
In recent months some of our PAs have taken personal advocacy to another level – organizing events, meeting with legislators and leaders, facilitating support groups, and going the extra mile to provide information and reassurance to patients. Below are a few of their stories.
March 11, 2021 was declared “D.C. Kidney Health Day” in our nation’s capital, and John Bayton – a kidney transplant recipient and NxStage patient advocate – is the man who championed the occasion. An Instagram- and Twitter-based event tied to World Kidney Day, D.C. Kidney Health Day was a virtual campaign created to raise awareness and educate attendees about kidney health, with a specific focus on kidney disease risk factors such as diabetes and hypertension.
Washington, D.C., Mayor Muriel Bower issued a proclamation to officially recognize the date and the event, which reached nearly 630,000 online participants and saw involvement from area businesses, social media influencers, and politicians. John has since received hundreds of requests for information and participation in future events. Among those who have expressed interest are D.C.-area restaurants, kidney-focused organizations, and Washington, D.C., Congresswoman Eleanor Holmes Norton.
“The campaign went extremely well and yielded awesome results,” says John. “Especially considering this was the first year and there was no financial investment.”
Not only were zero dollars spent to put on the event, but a local restaurant also pledged a portion of its sales from the day and helped John start his budget for future efforts.
John Bayton has been a NxStage Patient Advocate since 2020.
Dawn Bates is care partner for her husband Jimmie, a home hemodialysis (HHD) patient, and together they support many aspects of dialysis care and advocacy. At Jimmie’s dialysis center, they’re known as the couple who might drop by to decorate the bulletin board or drop off a basket of lip balms for staff with a note that reads “You’re the Balm!”
Recently, Jimmie and Dawn met with their local head of Centers for Medicaid & Medicare Services (CMS), to discuss improving visitation guidelines for dialysis patients. Their intent is to help patients who can’t effectively self-advocate, sometimes due to “brain fog,” a side effect of dialysis that causes lapses in concentration and cognitive function.
“When my husband started dialysis, we felt very alone,” Dawn recalls. “We found the more involved we are with the kidney community, the more support we have received in return. We have connected with so many people, traveling different roads on the same journey and have discovered many helpful resources.”
Together and individually, Dawn and Jimmie have founded and/or facilitated three different support groups, all of which are listed with their area End Stage Renal Disease Network (ESRD 12), and both serve on the network’s Patient Advisory Council.
Dawn Bates has been a NxStage Patient Advocate since 2018.
When the COVID-19 pandemic forced Dawn Edwards to practice patient advocacy from home, she took the opportunity to participate in projects outside her community. Dawn was elected as the Co-chairperson for the National Forum of ESRD Networks’ (www.esrdnetworks.org) Kidney Patients Advisory Council (KPAC).
“Through this council, I have the opportunity to speak directly to officials from the CMS Division of Kidney Health and other key kidney community stakeholders about the things most important to patients,” says Dawn. “We develop meaningful toolkits and resources for patients and providers that include the ‘patient voice’ and encourage person-centered care.”
Dawn also serves as a Patient Advisor for the Hemodialysis Pain Reduction Effort (HOPE) trial, a research study that tests interventions designed to reduce the impact of chronic pain for people on hemodialysis.
“As an advisor, I am learning a great deal about the research and trial process and how important patient engagement is to studies.”
Dawn Edwards has been a NxStage Patient Advocate since 2015.
Erich Ditschman has been passionate about sharing his home hemodialysis (HHD) experience since he started therapy in 2006. When COVID-19 prevented him from meeting in person with prospective new patients, he was extremely disappointed.
“COVID-19 hit patients, advocates, and staff hard, making access difficult,” says Erich.
“It was frustrating not getting the word out as we once did.”
Erich’s situation changed for the better when he and a NxStage sales manager teamed up to get him “back in touch.” As the sales manager spoke with patients in the lobby of a Saginaw, Michigan dialysis center, Erich was there, though not in person. Participating via video conference, he didn’t feel like he was making a connection.
However, when the sales manager asked if attendees wanted to speak directly with an experienced HHD patient, many took the opportunity. Using a tablet to communicate, Erich had extensive, one-on-one conversations with everyone who wanted to chat in more detail. Though spontaneous, the moment was such a success that Erich plans to try it again in the near future.
“Often when we use a meeting app to address a larger group, it’s hard to develop a rapport with individuals. There isn’t enough time,” Erich reflects. “With the tablet we could talk until all the patients’ questions were answered.”
Erich Ditschman has been a NxStage Patient Advocate since 2008.
Patient Advocates are compensated for their time for NxStage sponsored activities.