By David White, National Kidney Foundation (NKF) Kidney Advocacy Committee member
On May 18, I joined representatives of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), patient groups, and other stakeholders in briefing the House of Representatives’ Appropriations Committee staff on the importance of NIDDK’s research and educational programs. Other panelists included Dr. Griffin Rodgers, Director of NIDDK and Dr. William Cefalu, Chief Scientific, Medical and Mission Officer of the American Diabetes Association (ADA).
NIDDK conducts, supports, and coordinates research on many of the most serious diseases affecting public health at each step of both disease progression and treatment. The hour-long panel discussion highlighted innovative research developments at NIDDK. We discussed the importance of funding NIDDK’s research for patients with chronic diseases and the impact it will have on patients with diabetes and chronic kidney disease (CKD). NIDDK has laid the groundwork for advances in personalized medicine and treatments, new medications, organ-related stem cell research, and artificial organs. It has also taken a leading role in outreach to minority communities in an effort to reduce racial disparities, educate these communities about research, and involve community members in research and medical trials.
My kidneys failed in 2009, and when I saw how advocating for my own health changed my life I decided to do the same for as many people as possible. My advocacy led me to opportunities to participate in numerous panel discussions and trials, and I’ve seen the impact that both can have on our treatments and quality of life. I’m alive today thanks to research, and I do my best to return the favor by becoming more involved in clinical research and making it easier for more people like me to get involved.
When I speak with friends and relatives about participating in clinical trials, however, many reject the idea immediately for various and sometimes unspoken reasons. Barriers to participation in research by minorities – such as fear and mistrust – must be addressed, and to be addressed they have to be acknowledged. We need to be more innovative in our attempts to contact the hard-to-reach. More funding directed to NIDDK and NIH would create more opportunities to address this culture gap.
Increased funding also is needed so that more researchers can investigate ways to stop the onset and progression of kidney disease, and provide solutions to reduce this cost burden to our healthcare system. Additionally, more funding should be directed to engage more people from every walk of life in enhanced and targeted research that will deliver improved detection and treatments to patients. Smart investment now will result in more jobs in the healthcare sector, a better quality of life for millions, and a healthier population.
About David White
Residing in Hillcrest Heights, MD, David is a veteran of in-center nocturnal and peritoneal dialysis and received a kidney transplant in 2015. He is pursuing a degree in health systems management at the University of Maryland and has studied at Yale University. He is a member of NKF’s Kidney Advocacy Committee and recently spoke to the organization’s Council of Advanced Practitioners at the NKF 2017 Spring Clinical Meetings. He also serves in many other capacities, including PCORI’s Advisory Panel on Patient Engagement, the Veterans Transplantation Association Board of Directors, and as interim chair of the Kidney Health Initiative’s Patient and Family Partnership Council. David enjoys presenting about kidney disease awareness and patient engagement and has made regional and national television appearances as an advocate.