Turning pain into purpose: kidney recipient advocates to help save lives

In 2008, Tunisia Bullock celebrated her 25th birthday in a disappointing way: sitting in a dialysis chair receiving treatment for her failing kidneys. She had hoped that the chemotherapy she had been receiving would work as the doctors hoped, stopping or even reversing the damage that systematic lupus had done to her kidneys.

"I thought by my birthday, surely, this would be something I would look at through my rear-view lens," said Tunisia. "I had no idea how this was going to impact my life. And when my birthday came, I was sitting in a dialysis chair and that's when it became really real to me that my kidneys were not going to heal, that they were kaput, and this was going to be my life until something changed."

Fortunately, something did change. After five and a half years on dialysis, Tunisia received a new kidney from a living donor – her friend James – in January 2014. Since then, she has been actively sharing her story and advocating for the kidney community.

"I think that people need to know what this life is like because it's so unique and if we stay quiet about what we go through, then our pain begins and ends with us – and nothing gets done," said Tunisia. "I believe there's a purpose to what we go through and I believe that our pain and our struggle is not meant to stop with us. I think it's meant to help propel us forward so that maybe somebody else won't have to suffer or suffer as much as we did."

With this attitude in mind, Tunisia began seeking out advocacy opportunities. That's when she came across a Facebook ad for AKF's Kidney Action Summit and decided to apply for the opportunity to share her story with elected officials.

"And I'm really glad that I [applied]," said Tunisia, "because AKF is the exact organization that I would like to be connected with and a part of when it comes to advocacy and wanting to lend my time and lend my voice to speaking about issues, kidney-related issues."

She was particularly drawn to AKF's vision to create a world without kidney disease. "I thought that that was just a really stand-up vision to have as an organization and that is something that I ultimately want to see and that is ultimately what I'm fighting for as well," explained Tunisia. "And so, to be partnered with such an organization – it was just the perfect match for me."

On the day of the Summit, Tunisia had three meetings with staffers from her elected officials' offices: Rep. G.K. Butterfield, Sens. Richard Burr and Thom Tillis.

"It was such an incredible day. I did not want the day to end," said Tunisia. "I was so happy that I was able to share my story with the staffers. They all seemed to really care that I participated and they all seemed very appreciative that I told my story and that I took time to share."

Tunisia was one of 36 AKF Ambassadors participating in the Summit and advocating for the Living Donor Protection Act of 2021 (H.R. 1255/S. 377) and the CARE for All Kidneys Act of 2021 (H.R. 3893). The Living Donor Protection Act of 2021 is bipartisan legislation that provides critical protections to living organ donors, ensuring that living donors receive job-protected leave through Family Medical Leave Act (FMLA) and are not subject to discrimination from insurers.

Many people who are interested in living organ donation are unsure about how their employment or health insurance costs will be impacted by transplant surgery, Tunisia said. "These are legitimate concerns that the Living Donor Protection Act answers. And I think, that if you have people that want to step up out of the kindness of their beautiful hearts and souls, and they want to help people that are desperate to have a second chance at life; people that are sick, that are literally dying in dialysis chairs across the country – the least that you can offer these altruistic people is what's being offered in this act."

The Coordination, Accountability, Research and Equity (CARE) for All Kidneys Act of 2021 is a bipartisan bill that seeks to address the growing trajectory of kidney disease in the U.S., particularly in underserved communities, such as rural communities and communities of color.

"The CARE Act is so important because it is going to ensure that there are studies that will take a look at why kidney disease is so prominent when it comes to rural communities and underserved, underrepresented racial backgrounds," said Tunisia. "We need to understand why and then what. Why as in why is it consistently these communities? And what can we do to change this? Because we know that there are interventions that we can put in place to make these changes, so what are they? And how can we implement them? And I feel like that's what those studies are going to do."

The Summit was not Tunisia's first time speaking on behalf of the kidney community. She has spoken in area churches and at the Rotary Club of Rocky Mount. She has also worked with the Executive Organ Alliance, the Lupus Foundation of North Carolina and the Renal Support Network.

But her largest speaking engagement was at the Ronald Reagan building in Washington, D.C. in 2019. Out of the blue, Tunisia received a call from one of President Trump's aides, asking her to share her story as part of the ceremony for President Trump's signing of an executive order related to kidney disease. President Trump also mentioned Tunisia in his own speech about the state of kidney disease.

"It definitely was a cool experience," said Tunisia. "It is definitely added some spice to my life and conversation. And it has definitely added to my interest in advocacy work because you know, I'm like: well, if I can stand on stage and maintain my composure with a president, I can do this with anyone."

Tunisia stressed, though, that she thought both her speaking engagement on a presidential stage and her intimate meetings during the Kidney Action Summit were equally important.

"At the end of the day, what we're trying to do is save lives," said Tunisia. "So, it doesn't matter the size of the platform. Whether you're speaking in front of 10,000 people or 10 people, as long as you are saving a life, that is what matters."