This month, we sat down with Alexis Denny, Director of Governmental Affairs at the PKD Foundation (PKDF), to learn more about the approval of HR 2740 and what the bill means for PKD patients and their families.
Q: What is HR 2740?
Alexis: HR 2740 is a bill approved by the House Appropriations Committee that would provide $41.084 billion for the National Institutes of Health (NIH) and $2.129 billion for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The bill’s sponsor is Rosa DeLauro, Representative for Connecticut’s 3rd Congressional District and Chair of the House Labor/HHS/Education Appropriations Subcommittee.
Q: Why is it important for these groups to have funding?
Alexis: The NIH, which is a division of the Department of Health and Human Services, is the largest public funder of biomedical research in the world. NIH invests more than $32 billion a year to enhance life and reduce illness and disability. The NIDDK is also involved because most of the government funded PKD research comes through the NIDDK.
Q: Why are bills like HR 2740 important to PKD patients and their families?
Alexis: In fiscal year 2020, the President’s budget (a reflection of the administration’s priorities) suggested $34 billion for the NIH, the largest medical research agency in the country. This amounts to a 12 percent reduction over Fiscal Year 2019. Funding is important to providing continuing cutting-edge research into PKD and other kidney-related diseases.
Luckily, in Fiscal Year 2019 and again in Fiscal Year 2020, Congress will exercise its “power of the purse” and appropriate far more than the President’s budget for the NIH, NIDDK, and the other institutions.
Q: What is PKDF requesting through this bill?
Alexis: The PKD Foundation, along with 300 other patient and research organizations, requested Congress provide $41.6 billion to the NIH for Fiscal Year 2020, a $2.5 billion increase of the Fiscal Year 2019 budget. PKDF also requested $2.165 billion for the NIDDK to boost research for kidney-related diseases.
Q: Does PKDF have specific goals when it comes to backing legislation?
Alexis: Our legislative and regulatory priorities are guided by our vision to end PKD. Our policy priorities must meet four core standards:
- Increase funding for PKD research to make available new treatments to patients.
- Ensure that PKD patients receive adequate, appropriate, affordable, and sustained access to health care throughout the course of life.
- Influence and improve regulatory processes to ensure PKD therapies are produced efficiently and that they are safe, effective, and available to all PKD patients.
- Engage and empower the patient voice in policymaking, drug development, and regulatory decision making.
Q: What happens next with HR 2740?
Alexis: Making a bill into a law can be a lengthy process. This is the first of many steps. Next, the Senate Appropriations Committee will draft its version of the bill, which should happen in June. We’ll keep everyone up to date as changes occur.
Q: How can people stay current on what’s happening with HR 2740 and other legislation?
Alexis: We always encourage anyone who is interested to sign up for our advocacy alert emails. PKDcure.org also has additional information about advocacy, tools and resources, and monthly summaries online. We encourage people to get involved, ask questions, and learn as much as they can about critical research funding.