I was diagnosed with PKD at the end of 2004. In the summer of 2006, for the first of many times, I went to lobby Congress with the PKD Foundation as part of the Hope on the Hill Conference. Every time I go, I meet amazing people and learn new things. In 2006, I first learned that Medicare only covers immunosuppressants for 36 months in the End Stage Renal Disease (ESRD) program—11 years later, we are still trying to change this. I have also learned that laws change at a glacially slow pace. We all need patience and persistence to make changes happen.
Since 2006, I have lobbied another six times on the Hill and have been fortunate to have my living kidney donor, Maria Weaver, with me for the last three. Maria and I first lobbied in support of the Living Donor Protection Act (LDPA) in 2015, exactly one week before our transplant. We have been twice this year, once in March and again on September 19—just two days after our second Kidneyversary. The LDPA reduces barriers to living donation, but it still has issues to iron out. For example, I can tell my Representative or their legislative assistant that my husband could take time off as designated by the Family and Medical Leave Act (FMLA) to care for me post-transplant, but Maria couldn’t take it to save my life because she is not related to me. Maybe someone wants to be your living donor, but is afraid of losing their job or being discriminated against in disability, long term care or life insurance. Our state group had nephrologists and transplant doctors present who could speak to why funding from the National Institutes of Health (NIH) is so important. Kidney disease affects one in eight people and new treatments need money to spur research. Staffers may read legislation, but your story illustrates why legislation is important. I encourage you to share your story—make the words on paper real.
If you join a large lobbying day, you also get to meet people from other kidney organizations and learn about their diseases or how they support patients. You become part of a huge, wonderful, supportive community. Several years ago while lobbying, I met a friend whose whole family is afflicted with PKD. As the first person diagnosed in my family, it was such a relief to make a friend who had seen it all. They helped me through my transplant and I couldn’t be more grateful. I made a new friend this lobbying trip who is only just starting her transplant journey and I hope I can be that person for her. We make invaluable connections when we all join together and fight for our cause.
I can’t impress upon everyone the importance of telling your story. If you can’t make it to DC, go to your Congressperson’s local office or sign up for their newsletters. I met with my Representative, Ryan Costello, in person at a town hall he had last month. He and his staff now know me and what is important to me because I took that initiative.
Sign up for Advocacy Alerts on the PKD Foundation website so you know when important things are happening. You, as a constituent, have great influence on your elected officials, and a very personal story that is memorable and does make an impact. Now please join us and help to shape legislation that can help all kidneys!
Liz Casperite is the Education Coordinator for the Philadelphia chapter. She and her donor, Maria, are regular advocates for PKD patients and have shared their story with the National Kidney Foundation and the American Society of Nephrology. They have also participated in the Transplant Games of America and brought PKD awareness to several Phillies games in their hometown.