Advocacy | Dialysis | Kidney disease | Patient stories | Transplant

A Kidney Patient’s Journey to Advocacy

October 20, 2022, 12:52pm EDT

With Election Day around the corner, National Kidney Foundation advocates are already looking ahead to 2023, when state legislatures and a new Congress will begin their work. Members of our Voices for Kidney Health advocacy network will be urging them to keep up the drumbeat of progress that we’ve seen around passing kidney legislation, which is now law in 28 states across the country, including the state of Connecticut.

Armand’s journey to advocacy

In 2018, Armand Halter, a transplant recipient, decided he wanted to give back to the kidney community. Initially, he wanted to become an NKF Peer mentor, but training was closed for the year, so he decided to share his story at the NKF Kidney Patient Summit. This experience sparked a new love of kidney advocacy in Armand, and he went on to help pass the Living Donor Protection Act (LDPA), a law that protects living organ donors and promotes organ donation, in his home state of Connecticut.

Armand witnessed the power of telling your story firsthand and now wants to inspire others to do the same. Together, we can change public policy to help all people with kidney disease in the United States.

Championing kidney health

When Armand first joined Voices for Kidney Health, NKF's advocacy network, he was anxious and unsure about his first meeting with his state representatives. 

"I was nervous at first because I had done lobbying in Washington as a part of my job and was responsible for creating all the handouts and talking points. This time it wasn't like that. As kidney advocates, we are telling our story and each story is different," said Armand. "NKF gave us a briefing, training, and all the talking points. It was organized and comfortable. You're having a conversation with your representative or senator."

The first meeting went well and Armand went on to help champion the LDPA in Connecticut. Despite COVID-19 setbacks, he and his fellow advocates helped pass the bill.

"The bill protects living donors against discrimination for life insurance, disability insurance, long term care insurance. It's looking at education, early detection, and transplantation–things that are near and dear to any kidney patient," said Armand. "Then we got Representative Jeff Currey involved and the bill was expanded to include a Chronic Kidney Disease Advisory Council of 21 experts in the kidney field to work on health education programs."

The Chronic Kidney Disease Advisory Council aims to educate people about healthy living and kidney disease so that more individuals can protect their kidney function and avoid kidney failure.

"We will focus on increasing awareness around kidney disease and promoting preventative screenings. We're going to talk about transplantation as a preferred treatment option to dialysis," said Representative Currey. "We also want to look at racial disparities that exist. It's very important that we take that lens and look at how marginalized populations are disproportionately impacted and what we can do to get that messaging into communities such as those."

Armand and Representative Curry's next step is to work on passing this act at the federal level, and you can help! Add your voice and tell your lawmakers why passing the LDPA is an urgent priority for the kidney community.

Tips for successful advocacy

Inspired but not sure where to start? Here are Armand and Representative Curry's tips.

  1. Build relationships with representatives: Take the time to identify lawmakers who are personally affected by kidney disease or are already interested in the topic and speak with them. These people can become your biggest supporters and allies.
  2. You don't need to know it all: NKF provides all the information you'll need to make a compelling argument. All that's missing is you and your story.
  3. Education is key: As someone living with kidney disease or who knows someone living with it, you are the expert. Sharing how the kidneys work, what treatment is like, and the challenges of kidney disease show representatives how people are impacted in their day-to-day life. 
  4. Persistence pays off: Sometimes change takes a while. You may need to share your story or meet with officials more than once. Do not give up– your persistence and passion make all the difference.
  5. There's more than one way to advocate: You don't have to fly to Washington or testify at a hearing to make a difference. You can write letters, send emails, or even tweet at your legislators. Our Voices Action Center makes it easy.

Ready to find your community?

Armand's biggest takeaway from his kidney advocacy is the joy he found in connecting with people who genuinely understand his experience.

"New advocates find a supportive network of people going through all kinds of different types of kidney disease, genetic kidney disease, acute kidney injury, end-stage transplant, and all the different stages,” said Armand. "They're able to come out of their shell and feel less alone. They find a community where they belong, and seeing them is great."

Find your community and make positive changes for kidney disease. Become a kidney advocate today.

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