History was made on this momentous day! The President of the United States of America signed an executive order to improve the lives of patients with kidney disease. This effort seeks to reduce and/or delay the progression of kidney disease, improve options for kidney disease treatment, and increase access to organs for transplantation.
I was diagnosed with ESKD in March 2004. I could not stand up on that day, and my eyesight was not clear. I was rushed to the emergency room on a Saturday morning; by Monday morning, I was a full-fledged patient on dialysis. After several treatments of in-center hemodialysis care, I began to explore what happens next. My daughter encouraged me to get information about kidney transplantation, because she wanted to donate a kidney to me. I went to see a transplant coordinator and was instructed to get extensive laboratory work, a colonoscopy, and a mammogram. The mammogram results revealed that I had breast cancer. I then received radiation, chemotherapy, and dialysis. This additional diagnosis postponed my ability to be placed on the transplant list for 3 years. After 3 years, I was cleared to get on the list and waited another 4 years before receiving a transplant. However, during those 7 years, “I did dialysis; I did not let it do me.” I became an advocate for the prevention and/or delay of kidney disease. I joined Dialysis Patient Citizens, an organization based in Washington, DC, that is committed to ensuring quality of life for patients with kidney disease. After a couple of years, I became the president of the advocacy branch and then, the president of the education branch. I currently still serve in this position.
I received a kidney transplant on May 4, 2011 from a deceased donor. It is essential to understand that transplantation is not a cure but just another remedy. I am very grateful that I received a transplant and know that it is my responsibility to live as healthy a life as possible.
On July 1, 2019, I was invited to a listening session at the White House. We met with health care officials, Medicare executives, and representatives from the Office of Health and Human Services. I was able to provide feedback and share my personal experience about issues that were then incorporated into the executive order. Shortly after that meeting ended, I was invited to be one of the three guest speakers at the July 10th event. Unbelievable and what a privilege!
That day was humbling and joyous, and it will never be forgotten. We were able to speak passionately and openly about how kidney disease affected our lives. The President was gracious enough to be present to sign an executive order that will affect the lives of patients with kidney disease in the United States. Health care officials did the research necessary to determine what changes were needed to enhance the lives of patients with kidney disease. Kidney disease was placed in the forefront, and it was recognized that changes must be made!
Thousands of individuals have been advocating and focusing on kidney issues that are and have been affecting patients with kidney disease. The signing of this landmark executive order will enhance the lives of present and potential patients with kidney disease for generations to come. However, the advocacy does not stop here! There is still work to be done, and it is essential that we all monitor the implementation of the executive order. For those who cannot advocate for themselves, it is the responsibility of those who can advocate to advocate for all patients with kidney disease. Dialysis Patient Citizens is an organization that does just that! I am proud to be a part of this organization and invite all who want to advocate and educate about kidney disease. July 10, 2019 is a date that will be recorded in the history of kidney disease!
Ms. Scott is the President of the Dialysis Patient Citizens Education Center of the Board of Directors.
The content of this article does not reflect the views or opinions of the American Society of Nephrology (ASN) or CJASN. Responsibility for the information and views expressed therein lies entirely with the author(s).