Be an advocate now! Meet with your legislators locally during the upcoming congressional recess to educate them about Nephrotic Syndrome and FSGS and to ask for their assistance with key legislative and policy issues.
Members of Congress will be in their districts from Monday, July 31st until Friday, September 1st. Legislators use this time away from Capitol Hill to meet with their constituents in their local offices and learn about the issues impacting the people they represent. Advocates for NephCure Kidney International can use this opportunity to schedule meetings with the local offices of their members of Congress to educate legislators about Nephrotic Syndrome and FSGS and how they can assist and support affected individuals. You do not need to be an expert in government to be effective, you just need to be willing to tell your story. NKI will assist you with the rest. Taking action is easy:
- Inform NKI of your interest in making a local congressional visit by emailing firstname.lastname@example.org. NKI can help you locate the contact information for the local congressional office near you and assist you with scheduling a meeting.
- Consider making a local visit as a group, with other patient families from your area or with your friends, family, colleagues, or neighbors.
- Review NKI’s legislative agenda, and ask us any questions you have about the issues by emailing email@example.com.
- Meet with the local office, tell your story, ask them for their assistance on key issues, provide them with the leave behind materials, and then report back to NKI by completing this evaluation form.
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.
Toolkit for Successful Meetings