Written by Alexis Denny, Director of Government Affairs
Published September 24, 2019
For the last 12 years, PKD research has been eligible to receive funding from a program in the Department of Defense called the Congressionally Directed Medical Research Program, or CDMRP. Since 2007, PKD researchers have secured more than $25 million dollars of funding, including support for two clinical trials.
The CDMRP has a number of different programs, some are for specific diseases and others are more general. PKD is funded through a program called the Peer Reviewed Medical Research Program, or PRMRP. This program has a large “bucket” of money that is available for specific diseases to apply for. It is rather difficult to gain a spot on this list of diseases. There must be a demonstrated impact on the military community and there must be a LOT of advocacy.
PKD remained on this list until 2017 when, in a strange year, we found out at the very last minute we were no longer included. Fortunately, the PKD patient community took action, and along with some targeted meetings on the Hill, we were reinstated to the list in 2018 (for federal budget fiscal year 2019). Researchers have taken advantage of this opportunity and submitted applications — we’re still waiting to hear who is funded.
2019, a year of advocacy
During 2019, we choose to work on two approaches regarding advocacy for DOD funding:
- Maintain PKD on the list for the Peer Reviewed Medical Research Program (PRMRP)
- Work to secure a special line-item of funding that would be dedicated only to PKD, meaning our researchers would no longer have to compete with other diseases areas for funding.
Commitment to success
Objective 1: I am so happy to announce we were successful in maintaining PKD on the PRMRP list for fiscal year 2020 (Oct. 1, 2019 – Sept. 30, 2020). While the federal budget process is not yet complete, both the House and the Senate have marked up the Defense budget and the language released in the second week of September confirmed that PKD is on the list! This is a huge win for PKD researchers and the PKD patient community. Our researchers will now be able to compete for a share of the $350 million that’s available in that program.
Objective 2: Unfortunately, our second objective was not as successful. History shows that starting a new program with dedicated funding in the CDMRP is very difficult and can take years of advocacy. While we had great support from the community and several members of Congress, it will take even more support next year to get closer to that goal. I believe this will be worth the effort as any amount of money dedicated to PKD research, no matter how long it takes to secure, will get us closer to our goal to #endpkd.
Looking forward
We have so much to be excited for: first, we have access to $350 million in funding from the PRMRP – a huge accomplishment; second, we continued to build our champions on the Hill, and gained a few new supporters!
PKD supporters on the Hill
- Congresswoman Debbie Wasserman Schultz (D-FL): Circulated a Dear Colleague letter this spring to gain support for our line item.
- The following members signed on to the letter, showing their support for the line item:
- Mike Doyle (D-PA 18th)
- Dwight Evans (D-PA 3rd)
- Antonio Delgado (D-NY 19th)
- John B. Larson (C-DT 1st)
- Donald McEachin (D-VA 4th)
- Bobby L. Rush (D-IL 1st)
- Ben McAdams (D-UT 4th)
- Alcee L. Hastings (D-FL 20th)
- Bill Pascrell, Jr. (D-NJ 9th)
- Debbie Mucarsel-Powell (D-FL 26th)
- David Scott (D-GA 13th)
- Tom Malinowski (D-NJ 7th)
- Sheila Jackson Lee (D-TX 18th)
- Diana DeGette (D-CO 1st)
- Senator Jerry Moran (R-KS) – specifically requested PKD be included in the PRMRP list AND that we receive a $10-million-line item.
- Senator Tammy Baldwin (D-WI) – also requested PKD be included in the PRMRP and requested the line-item
- Senator Ben Cardin (D-MD) – requested PKD be included on the PRMRP list
- The following members signed on to the letter, showing their support for the line item:
We could not have been successful without the support of the members of Congress listed above and their amazing staff. If any of these members represent you, please be sure to reach out and thank them today! You can do this by looking them up (House of Representatives, Senate) or going directly to their website to find the phone number or email form to complete.
If you’d like to get involved in advocacy with the PKD Foundation, sign up for our advocacy alert emails!
I really can’t understand what this means. Does it mean that we got the funding ? or does it just mean that we are on the list for the funding. The article is confusing to an ordinary person reading it.
Thank you
Hi Maryann! Thanks for reaching out. This means that our researchers are invited to apply for a pool of money (about $350 million). Not everyone is allowed to apply, it is limited to research focusing on a specific list. This list changes each fiscal year, and to get added each year requires significant advocacy by the PKD community. So it does not mean we are guaranteed a certain amount of funding, but that we have an exclusive opportunity to apply. Historically, our researchers have been quite successful with this approach, and we hope that success continues to grow each year!
If you have any questions, feel free to reply here or reach out to me at alexisd@pkdcure.org.
Thank you!