What made you want to get involved with advocacy at AKF?
I had originally been a member of ESRD network 5, and I was looking for additional ways of getting involved in the kidney community. I liked the work that AKF was doing in the community – I thought they were giving back to patients in a more noticeable way. That’s what led me to AKF.
How has being an AKF Ambassador helped you?
AKF gave me the ability to speak to my elected representatives. They also gave me a voice in the kidney community, either through interviews on the radio or taking part in various kidney community meetings.
What have you learned from being an AKF Ambassador?
I have learned a lot of the intimate details about the kidney community and kidney disease that I wasn’t previously aware of. This has allowed me to get more involved with other members of the community. One of the things I’ve learned the most is the challenges that are being posed to the kidney community overall when it comes to financial integrity. I’ve especially learned how the insurance companies are reacting to financial assistance that the kidney community finds invaluable – it holds our heads above water and keeps dinner on the table. I’ve also been surprised about how the various organizations in the kidney community can have different opinions about the same issues.
Why should others become involved with advocacy at AKF?
If you’re looking for the most direct way of working with patients and helping patients, I feel like AKF is the best route to do that.
We were delighted to have you join us in DC on July 10 for the White House and HHS’s announcement on “Advancing American Kidney Health”. What did you think of the announcement?
I thought overall that the proposal gives hope. I’m concerned about the actual implementation of it as there haven’t been federal dollars assigned to it. However, it successfully brought kidney disease into the national spotlight for one day – it was on the news, people were talking about it, and that’s where everything starts. If you get people to start talking about kidney disease, that makes a lot of progress. I think some people were focused a lot on the bearer of that message, but that’s such a small part of what happened that day. The fact that national organizations, small regional organizations, transplant centers, pharmacies, etc., were all in one room on one day, and the story was carried on all sorts of news channels – that was what matters.
What is something you’ve learned about kidney disease and dialysis that you wish you’d known a lot sooner?
I wish I had known about the greater spectrum of choices that were available to me instead of being sent in-center for dialysis. If I had known about home-hemodialysis or peritoneal dialysis, I would have probably been in a better place and more informed. I would have liked more up-front information in the beginning.
What are some good ways you’ve found to stay connected with other kidney disease patients and advocates?
Working with my local ESRD Network has been a great way, and I also still participate in the MedStar Washington Hospital Center support group that I was part of. That’s been a great way of participating. Since receiving my transplant, I also make frequent visits to my former dialysis centers to talk to patients and help them out.
What do you wish elected officials knew about kidney patients?
I wish they understood the fact that none of us want to be in that chair and what it’s like to be in the chair. It’s sometimes easy to say, “well they’re getting Medicare, they’re being taken care of,” but without the actual understanding of what a dialysis patient has to go through and how that impacts their lives – that’s what I wish they knew more about. That’s why I was appreciative of CMMI Administrator Adam Boehler and HHS Secretary Azar sharing that they do have experience with kidney disease and understand it, especially Secretary Azar, whose father was on dialysis before receiving a kidney transplant.
Do you have any advice for newly diagnosed kidney patients?
My number one recommendation would be: be involved in your health. Don’t wait for someone to give you information – look for the information. Some good resources to start with are AKF’s website, NIH’s NIDDK website, and the Renal Hope Network site. The Renal Hope Network has a podcast they do – it’s a very unique connection between former patients and current patients. When I was diagnosed in 2016, I found that site to be very helpful because the organizer has had to deal with kidney disease for most of her life. The podcast addresses a wide range of experiences from dealing with the initial diagnosis to the financial side, there’s just really great information.
Is there anything else you want to relay to other kidney patients?
All patients should get involved in some way with the kidney community. Don’t be silent about this; more people need to talk about kidney disease to develop solutions and learn to advocate for their health.