Make your voice heard. March on Capitol Hill. Write letters to your congressperson about living with chronic kidney disease. Respond to NKI Advocacy Alerts to increase funding for research. Attend Advocacy Day. There’s no better way to champion our cause than flexing your rights when it comes to your quality of life. Our Advocacy Volunteers pay attention to the process and act on it.
Set up a meeting:
Summer is a good time to engage in grassroots advocacy while legislators are in their local districts and states. Schedule a meeting with your Representative and Senators, or attend their events, and tell them about why increasing funding for Nephrotic Syndrome research is important.
Attend an event:
Many representatives hold town hall meetings or other events while they are in their home districts. Check their websites for events to attend.
Send an email:
Emails are a great way to tell your elected officials about what they can do to improve the lives of people with Nephrotic Syndrome. They can also be useful as a follow-up after in-person meetings to maintain the relationship you established during the meeting.
Participate in an Advocacy Day
CLICK HERE for pictures from Advocacy Day 2017.
NephCure holds Advocacy Days regularly in Washington, D.C. Stay tuned for more information about the next Advocacy Day!
Participate in August Advocacy Month:
Throughout the month of August, members of Congress will be at their local offices taking meetings and holding events. This is your chance to schedule a meeting with them and discuss the issues that are important to you and the greater Nephrotic Syndrome Community. Learn more here.
Legislative Agenda: About the Issues
Each year, NKI outlines a federal advocacy agenda that is focused on advancing medical research, facilitating treatment development, and improving healthcare. This year, NKI has outlined the following issues as part of our legislative agenda:
- Provide $36 billion for the National Institutes of Health (NIH) for Fiscal Year 2018
- Provide a proportional increase for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the branch of the NIH that would most directly support NS and FSGS research.
- Provide a proportional increase for the National Institute of Minority Health and Health Disparities (NIMHD). Minorities are disproportionately affected by NS and FSGS, and this branch of the NIH could provide specific funding opportunities and training programs to benefit the community.
- Support rare disease research at the National Center for Translational Sciences (NCATS).
- Continue to include FSGS as a disease eligible for study through the Department of Defense’s Peer Reviewed Medical Research Program
- As a result of this funding opportunity, over $2 million has gone to FSGS research
- The NKI community must continue to advocate in order for FSGS to be included every year
- Preserve basic patient protections from the Affordable Care Act, including:
- Prohibit insurer discrimination against pre-existing conditions
- Allow young adults to stay on their parents’ insurance until age 26
- Establish reasonable maximums for out-of-pocket costs
- Prohibit annual and lifetime caps on insurance coverage
This agenda is comprised of contemporary legislative and public policy issues impacting the kidney community. However, to be successful in your meetings you will not need to remember complicated political information, you just need to tell your story. The materials below can help you have a productive and effective meeting with your Senators and Representatives.