Participate in Advocacy
Due to Covid19 NephCure’s in person advocacy on Capitol Hill has been suspended until further notice.
Advocate from Home:
- Email, call, or fax your Senators and Congresspersons. You can find their contact info by clicking here. Don’t forget to include our legislative agenda in your message to them!
- Attend a meeting at the local or Washington, D.C. offices of your members of Congress. You can call and make an appointment for a private meeting or attend an event that they may be holding. Either way, arm yourself with NephCure’s legislative agenda.
- Participate in August Advocacy Month! Members of Congress spend the month of August at their local offices. This is the perfect time to schedule a meeting with them.
- Check your email & NephCure’s Facebook Page for Advocacy Alerts! Take action and share the alert with friends and family!
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 $38.1 billion in fiscal year 2019, a $2 billion increase
- 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
- Co-Sponsor the “Chronic Kidney Disease Improvement in Research and Treatment Act of 2017 (H.R. 2644)”.
- This bill is aimed at improving the lives of individuals with chronic kidney disease by supporting research that identifies and eliminates barriers for transplantation
- This bill allows individuals to retain access to private insurance
- This bill is promotes access to home dialysis, which is associated with higher quality of life and better health
- Finally, this bill pays particular attention to chronic kidney disease in minority populations and aims to improvement access to treatment for underserved areas
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 above can help you have a productive and effective meeting with your Senators and Representatives.