Published on February 16, 2021 | Just last month, a new U.S. Congress was seated with more than 60 first-term members and a renewed sense of duty and optimism for crafting legislation for the next two years. This term—the 117th session of Congress—is a great opportunity to get involved in advocacy for PKD!
Citizen advocates are a critical component of our system of self-government. Every person has the right to contact their elected officials and make their voices heard on the issues most important to them. In a recent survey of Capitol Hill staffers, one senior staffer was quoted as saying, “Constituents who take the time to contact our office directly about their concerns are given priority treatment.”
Whether you’re a seasoned advocate or have never engaged with policymakers on Capitol Hill, there’s never been a better time to learn how you can be a citizen advocate on PKD issues. The best part? You can do it from the comfort of your own home with letters, emails, or even Zoom meetings.
Congressionally Directed Medical Research Program (CDRMP)
The PKD Foundation annually evaluates the federal policy landscape and sets priorities for the upcoming year in advocacy. One of the Foundation’s key priorities each year is ensuring that polycystic kidney disease remains a designated topic area within the Peer-Reviewed Medical Research Program (PRMRP). The PRMRP is a section of the Congressionally Directed Medical Research Program (CDRMP), a program of the Department of Defense. The PRMRP was funded at $370 million in 2021, and only research topics listed in the annual spending legislation will be eligible to apply for funding. PKD has been a designated topic area since 2006, and researchers have received more than $40 million in research funding. In 2020, they received more than $12 million.
To ensure PKD remains a designated topic area of the PRMRP, the Foundation, its representatives, and its advocates must effectively ask Congress for inclusion each year. You can take steps to share your voice and advocate for PKD by signing up for our advocacy alerts and emailing or calling your members of Congress at key times throughout the year.
Our citizen advocates have a critical role in demonstrating to Members of Congress that the PKD community cares deeply about the PRMRP grant mechanism. In addition, they want to ensure that breakthrough research in PKD is adequately funded through this program.
Taking the Next Step in Advocacy
In light of the shift to digital outreach due to COVID-19, the Foundation has evolved its advocacy program to better connect PKD advocates with their representatives in a formal program. In 2020, the Foundation established the Advocacy Champions Network, a national group of PKD community members engaged in formal advocacy efforts with federal policymakers. Last fall, a call was put out seeking volunteers who were interested in being a part of this new program. Thirty-six Champions from 22 states answered the call.
Since November, we’ve met monthly for training on policy, Congress, and storytelling in preparation for our first round of formal, virtual meetings with Senate offices this month.
The Advocacy Champions Network will annually recruit cohorts of volunteers. We’ll be opening applications for the next cohort in fall 2021. If you’re interested in this program, please sign up for PKD Foundation advocacy alerts. Keep your eyes peeled for the application to be a part of the next class of citizen advocates.
I have PKD, what can I do to assist?
Are there any clinics/physicians that care for PKD/PLD? We can’t find any in San Diego, CA….we need more resources
Dr. Pranav Garimella specializes in PKD and was a resident for one of the preeminent PKD researchers and clinicians at Cleveland Clinic. He is very knowledgeable about our disease and in very involved in the PKD research community. He also has great patient communication skills. For PLD Dr. Veeral Ajmera in Heptology got me listed for my recent PLD liver transplant and comes out of the UCSF Liver Transplant Program. Also, he has access to PKD/PLD specialists from UCSF and can help you understand any current drugs for PLD in clinical trial. I had a terrific liver transplant experience at UCSD 6 months ago and had my renal transplant there over three years ago.