Blog post

Spread advocacy, it's the Brooklyn way

On Oct. 23, more than 60 people convened at Remsen Hall in Brooklyn, New York, for "Living Your Best Life On Dialysis," a day of education and camaraderie.
Group photo of attendees at Living Your Best Life On Dialysis

On Oct. 23, more than 60 people convened at Remsen Hall in Brooklyn, New York, for "Living Your Best Life On Dialysis," a day of education and camaraderie. The event required lots of planning and many groups and volunteers were needed to pull it off, including the American Kidney Fund (AKF), the New York State CKD Champions (Champions), IPRO, Home Dialyzors United as well as several other organizations. However, the idea for the event almost came by chance.

Back in March, AKF met up with three longtime leaders of Champions: Stephanie Dixon, Dawn Edwards and Lisa Baxter. Stephanie has attended many AKF events and meetings in-person, but Dawn and Lisa have been restricted to virtual-only advocacy activities due to COVID-19. In an effort to bring everyone together after years of advocating exclusively online, we met for lunch in Brooklyn.

During this fateful meet-up, Stephanie commented that this was the first time they had all seen each other in three years. It occurred to me that if these pillars of the kidney community had not seen each other in three years, then many other folks in the dialysis world must be isolated as well. Perhaps it was time to try doing an in-person event again to bring more people together.

Champions had routinely hosted widely attended events before the pandemic, including an annual arts fair. We all agreed something was needed to bring the community back together, but we had no idea what that would actually look like. It was during this lunch that AKF mentioned that it might be helpful to have larger kidney community presence in Brooklyn as the city's congressman, Hakeem Jeffries was likely to rise to the top Democrat leadership spot – a prediction that came true when Congressman Jeffries was elected by House Democrats on Nov. 30 to serve as the Democratic Leader, replacing Nancy Pelosi. Not only has Jeffries' district staff worked with AKF for several years to advocate for the kidney community, but his Brooklyn-based district also has high rates of kidney disease. Given all this, we also all agreed that Brooklyn would be a perfect location.

Fast forward nearly eight months and that idea became a very successful education event in Brooklyn that truly brought the community together.

"This really was a great event. Everyone is happy and you can tell everyone needed it," said Dawn Edwards, CEO of Champions, a patient-led support group. "People have been cooped up for way too long and they needed to be back with everyone, amongst their friends, to reconnect and learn something new."

Attendees at Living Your Best Life on Dialysis participating in a group activity

The format for the event was unique and elicited a lot of audience interaction. Instead of a rotating group of presenters talking at the group, organizers acted out different realistic dialysis scenarios, often with humor, to stimulate discussion and address attendees' questions or concerns.

For example, one scenario involved someone picking up prescriptions from a regular pharmacist instead of a transplant pharmacist. This prompted an interesting discussion about the benefits of a transplant pharmacist and the challenges people with kidney disease face at the pharmacy. One person in the audience said they had no idea transplant pharmacists even existed, adding that they were unhappy with the service they receive at their local pharmacy. They said their pharmacy is chronically understaffed, and due to this it always takes longer than expected to get a prescription. Another attendee said that even though a transplant pharmacist might not be available everywhere, people should look into going to one because these pharmacists have deep experience with specific kidney-related medicine. Plus, they always have time to talk and provide advice. Some of the other scenarios that were acted out included how to stick to your kidney-friendly food and fluid plan and what steps to take when you begin dialysis.

As part of the programming, I presented on the importance of advocacy and why elected officials need to hear from the kidney community. I reinforced how nothing is more powerful than their own personal stories — lawmakers and their staff members hear about lots of different bills every single day, but it is their stories that help put a face to an issue and make it stand out. And of course, it was shared that the American Kidney Fund would be honored to work with each of them on advocacy and to ensure their voices are heard.

"I am really interested in advocacy," said DeVal Barrow, one of the attendees. "I think it is very important to be an activist and to help your community."

DeVal also mentioned he will be getting a transplant soon and really relished the opportunity to be with so many other people from the kidney world, whether they are just starting dialysis or have had a transplant for a long time. DeVal promised to get involved with AKF's advocacy effort and hopes to meet with his elected officials to share his story.


Ben Shlesinger

Ben Shlesinger is the associate director of government relations at the American Kidney Fund.