On Sept. 15, patient-led advocacy group, Dialysis Patient Citizens (DPC) and more than 50 DaVita Kidney Care teammates participated in DPC’s annual Fly-In on Capitol Hill to share the challenges facing kidney patients with elected leaders. The event was held virtually so that participants could safely advocate for dialysis patients across the nation.
DaVita teammates and Fly-In participants shared their insights on advocating for kidney care patients in Washington.
Amy Bogan, DaVita manager of grass root campaigns
Elsie Selvakumar, DaVita North Haledon Dialysis facility administrator in North Haledon, New Jersey
Q: How many years has the Fly-In been taking place?
Amy: We’ve collaborated with DPC on this event for eight years. What the Fly-In does is allow dialysis patients and care givers to travel together to Capitol Hill with a unified message on issues important to people with chronic kidney disease.
Q: How did the event get its start?
Amy: For a long time, we’ve worked closely with DPC – an independent advocacy group made up of patient advocates. Their members are transplant patients, kidney disease patients, dialysis patients and, of course, their family members.
One year, there was just a lightbulb and we said, 'why don't we do this together?’
Because patients going to Capitol Hill is amazing – that's a great thing for patients to be able to do – but when caregivers or health care providers can join them, it magnifies their message. So, a patient shares their own story and a dialysis health care provider comes beside them to share how that story applies to dozens, if not hundreds, of a Congress member's constituents back home.
Q: Why did you choose to participate in the event?
Elsie: I personally understand the challenges my patients face because I, too, was a kidney disease patient. I was diagnosed with kidney disease 25 years ago and started on home dialysis about six years ago, and I was blessed to receive a kidney transplant about three years ago for which I am very thankful.
But, like many patients, I also struggled with issues like finance and insurance, which took a huge toll on my health. These trials are something I would never wish on any other patient which is why I believe I should advocate for my patients.
Q: What goes into planning the event?
Amy: DPC invites patients to become ambassadors, and over 80 patients applied this year. Then, they match patients to a congressional office and I connect each patient with a DaVita teammate, who works in a dialysis center.
Each patient and teammate pair meet with between five and eight legislators the day of the Fly-In. There's some prep work beforehand, too. An in-person Fly-In on Capitol Hill is completely different than this year’s virtual event, so I opened up office hours for DaVita teammate questions and DPC hosted webinars on how to advocate over the phone.
Q: What logistics went into making the event virtual?
Amy: In the past, when patients and teammates come to Washington D.C., we spend a full afternoon in groups talking about the issues and hearing each other’s stories. As a patient and caregiver pair coming from different parts of the country, you really get to know who you'll be spending the day with on Capitol Hill.
When the DaVita team was approached with [doing a virtual event], the question was, are we going to do it or not? Yes, we're going to do it. And yes, it’s going to be different because it’s 2020, but we'd never pass up the opportunity for our patients to share their own voice and be heard on behalf of other patients back home.
Q: What kind of initiatives are promoted during the event?
Amy: These conversations are all about legislation to improve the care of kidney patients. This year, patients and dialysis caregivers spoke on the BETTER Kidney Care Act and the Jack Reynolds Memorial Medigap Extension Act.
The BETTER Kidney Care Act creates a path to improve health outcomes and address disparities in access to care for dialysis patients. The bill gives patients on Medicare additional care team support and lets dialysis providers coordinate all of their patients’ health care needs beyond the kidneys.
The Jack Reynolds Memorial Medigap Extension Act is named to honor the legacy of an incredible kidney health advocate who passed away last year after four decades of dialysis treatment. The bill would give end-stage kidney disease (ESKD) patients under the age of 65 access to Medigap coverage.
The BETTER Kidney Care Act is H.R. 8254/S.4574
Jack Reynolds Memorial Medigap Extension Act is H.R. 8181
Q: What has been your experience participating in the Fly-In?
Elsie: This was my first year joining! For me, it was a great experience and opportunity to relay our patients’ message to legislators. I believe that better kidney care can promote better lifestyles for kidney patients, and I wanted to share that message with Congress.
Q: What are the goals or outcomes hoped for from the event?
Amy: With this event, the kidney care community is working to educate congressional members and their staff about new legislation and asking for their support as cosponsors on bills that impact the health of our patients.
Elsie: I chose to advocate, because of my own experience and as a nephrology nurse. I see my patients, who have so many underlying medical conditions and who need to see so many different doctors that they can feel lost. I'm advocating because under the BETTER Kidney Care Act, more of my patients can have access to integrated care.
Q: What do you see as DaVita’s role when it comes to advocating for patients?
Amy: I think our role has many different facets. Dialysis caregivers engaging with state legislatures is always important and, historically, that’s been done in the dialysis center. Congress members would have the opportunity to tour our centers and learn about dialysis first hand. During COVID, that's not an option. So right now, our opportunity is to connect with Congress virtually, through events like this Fly-In.
I also think our responsibility lies in the fact that 750,000 dialysis patients make up 7% of the Medicare budget. They’re a very small group, but their care is very costly. Many members of Congress aren't familiar with dialysis patients, kidney disease or the treatment and cost.
So it’s important we educate those at the highest level of government, who are making decisions that really impact our patients. You could call it a citizen’s responsibility, and it’s our responsibility to share what we know about kidney care to help move forward good policy d.
Q: How do you personally plan to continue advocating?
Amy: I’m a nurse and have worked in the kidney care space for 25 years. In my position, I not only have the opportunity to share what I know about kidney care with congressional offices but I also have the responsibility and honor to help teammates share their own stories to magnify the benefits of good public policy.
Elsie: As a citizen and as a DaVita teammate, I feel responsible for advocating for all our dialysis patients’ needs. I will encourage all teammates across the Village who are interested in advocating for better kidney care to get involved.
Q: What is special about working with kidney patients?
Amy: Their personal journey through kidney care. Each story is unique and often times, sheds light to the complexities of care and challenges patients face. Their stories reflect perseverance, courage, and grace and offer a humbling view to how one navigates a complicated health care ecosystem.
Elsie: Kidney care patients often suffer with many different medical conditions and the majority of patients also face psychosocial and socioeconomic challenges that can make their care more complicated. We see our kidney patients dialyzing in a center up to three times a week and develop a relationship with them. We celebrate their birthdays, anniversaries and we also mourn with them for any of their losses. That is part of why I feel so strongly about advocating for my patients and all dialysis patients.
To learn more about the BETTER Kidney Care Act, visit DaVitaAdvocacy.com