Published on March 30, 2023 | In order to change the future of PKD, it takes more than research. Advocacy plays an important part, too. Our Advocacy Champions Network connects PKD advocates to their local legislators, helping further PKD-centered legislation. In recent years, PKD legislation included the Living Donor Protection Act, Orphan Drug Tax Credit, and Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2020. Through our Virtual Advocacy Day on April 19, any member of our PKD community can use their voice to push for change. And for those curious about what they can expect if they participate, ACN member Tamara Walker is here to explain.
When did you realize you wanted to be an advocate?
Tamara Walker: Directly after my transplant, I wanted to share my journey, especially with those who helped and assisted me. After that, I was paired with a mentee who shared an another organization’s advocacy/ambassador program. Once I was trained and invited to attend Advocacy Day on Capitol Hill in 2019, I was intrigued with advocacy. In 2020, I learned about the ACN program. I’ve been volunteering ever since.
What does being an advocate for the ACN mean to you?
Tamara Walker: Being a PKD advocate allows me to reach out and engage with my elected officials, educate others, and share my own personal journey with PKD. I’m personally able to take part in asking that allocations for PKD research are set aside. This makes it certain that there’s government funding specifically for PKD research.
What are you most excited to do as an ACN Champion?
Tamara Walker: I’m most excited for the PKDF’s Virtual Advocacy Day with our elected officials. I’m looking forward to sharing our personal stories and educating staffers and members about PKD. Also, asking for funding for research to change the outcome of those of us affected by PKD.
“As we speak to each elected leader, it allows us, as a community, to move one step closer to ending unfavorable conditions due to PKD. We work together so that future generations will have a chance to live without being affected by PKD.”
—Tamara Walker, PKD advocate
How would you describe last year’s Virtual Advocacy Day? What were your favorite parts?
Tamara Walker: Last year’s Virtual Advocacy Day was empowering and exhilarating. I loved the fact that our appointments for elected officials/staffers were scheduled consecutively throughout the day. I’m happy with the team that scheduled our meetings for us. We wouldn’t have been able to schedule our meetings with ease and efficiency as the team has done.
Team Georgia was able to share our stories, educate, and ask for allocation for PKD research in the allotted time scheduled. We practiced on Zoom a few days before the event. Then we hit all pointers rather swiftly on Virtual Advocacy Day. My favorite part was meeting staffers and being part of Team Georgia. We hit the ball out of the park.
What’s one piece of advice you’d give to aspiring advocates?
Tamara Walker: Please consider becoming a PKD advocate or ACN member to ensure federal research funding so we may end PKD. Sharing your journey and educating our leaders about PKD and the daily challenges that we, and our families, face brings light to our unique inherited disease.
Can you tell us about your PKD journey?
Tamara Walker: Over 20 years ago, I was diagnosed with PKD at 25 by my OBGYN at a follow-up appointment after the birth of my second son. In my journey, I’ve had many UTIs, infections, and ruptured cysts. My abdomen increased in size to appear as if I were 3-4 months pregnant. Constant ER visits meant taking time off work. Trying to raise my young family and cope with PKD became very challenging. Finally, the ER sent me to a urologist who shared the fact that I was nearing kidney failure and would soon need a kidney transplant. He urged me to move near my family. So, I heeded his advice— uprooting over 300 miles and three states away— to be near my supportive family.
After moving, I had no health insurance so I sought charity assistance at a local clinic. I was unable to see the proper specialist that I needed to treat and care for PKD, but I was given blood pressure meds. I started in-center dialysis for two years. But shortly after being approved for the transplant wait list, I was diagnosed with kidney cancer. The urologist performed a bilateral nephrectomy and both my kidneys were removed. Seven months after the nephrectomy, I received a deceased donor kidney in 2014. Currently, I have numerous cysts on my liver and I’m still monitored for the new kidney and my liver.
In our PKD community, everyone has a unique journey and experience. There’s power in sharing that experience with your elected representatives. Join Tamara and the Advocacy Champions Network in using your voice to change the future of polycystic kidney disease. Register today for Virtual Advocacy Day 2023.
Please register before Wednesday, April 5 so that you can participate in our training webinar on April 6.
If you’re interested in other advocacy activities, sign up to receive PKD Advocacy Alerts and the latest advocacy news.