On Wednesday, July 10, 2019, President Donald Trump signed an executive order aimed at transforming kidney care for the more than 37 million Americans with kidney disease. The administration said it is the first kidney-focused executive order since the 1970s.
The policy is intended to improve kidney care in three major ways: by emphasizing more effective and convenient treatments; making more kidneys available for transplant; and improving preventive care and education with the goal of reducing the number of people who develop end-stage renal disease by 25% by 2030.
NephCure Kidney International and IgA Nephropathy Foundation of America each had patients, volunteers, and leadership represented at the historical meeting. Bonnie Schneider, NephCure’s VP of IgAN Affairs and Founder of IgA Nephropathy Foundation of America, attending the executive order signing. She explains, in her own words, the amount of work she’s accomplished to get to this moment and what the event meant to her.
July 10, 2019
Today is a day I will never forget. Not only was it a historical moment, but as a mom of a child with kidney disease, one I had prayed for many years.
Fifteen years ago, our son Eddie Schneider came home from school one day and said his urine looked like Coca-Cola. I was completely blind-sided by his comment and very afraid. After a hospital stay and many tests, our son was diagnosed with IGA Nephropathy, a rare disease where abnormal antibodies deposit in the kidneys.
As a pro-active person I hoped for an organization to join to try and take my negative thoughts and turn them into positive action. But to my surprise, no such organization existed. That’s when my husband and I took things into our own hands and started one ourselves. It is now known as the IGA Nephropathy Foundation of America.
In the past 15 years we have visited Capitol Hill countless times, advocating for our cause and asking for assistance with the ongoing issues and hardships we face every day due to Eddie’s diagnosis. We left many of those trips feeling a great deal of hope, only to seemingly fall right back into the same place we started. To our dismay, we didn’t really accomplish what we thought we had.
But today that all changed. Today was different; it was the unforgettable day that made all of the previous Capitol Hill visits worthwhile. Oddly enough, today sort of crept up on me; it’s something that was a last-minute decision and a last-minute invitation. Not initially realizing the momentous occasion that was about to unfold, Carrie Enike (another ‘mom warrior’ and Campaign Director to the IGAN Foundation) and I made our way to Washington, DC from different parts of the country. Many thoughts raced through our heads and a lot of emotions stirred.
As we met together at our hotel room in D.C., we planned our strategy for the following day. That included an early wake up call, as we were told the earlier we were there, the quicker we could get through security. So, the two of us ‘Mom Warriors’ did just that and were first in line to attend this historical meeting.
Being first in line allowed us to be front and center in the third row, directly in front of what would be the signing of the executive order to transform our nation’s kidney disease care. Right in front of our eyes, President Trump was about to sign the executive order for a bill that we have been pleading on Capitol Hill with our congressmen and senators for years, As we waited for the announcement to begin, Carrie and I exchanged looks, immediately knowing what the other was thinking, “Are we reallyhere?”
Anticipation was building and at last, the presidential song, Hail to the Chief, billowed through the meeting room speakers. Before I knew it, President Trump walked onto the stage and the room erupted into applause. Rather than cheering for anything political, the celebrations were for what was about to happen for all of us trapped in this kidney world of uncertainty.
I cried as the President addressed every concern we have and gave us his plan on moving forward to achieve the outcome we all deserve. I was humbled with gratitude for my son and for all of my patients that are counting on me to help them achieve a better quality of life. As we watched the President sign the executive order and proudly hold it up for all to see, we cheered with all the others in the room. It was groundbreaking!
Tears welled up in my eyes as I watched the moment unfold. I cried for my son and everyone that needs this executive order; I especially cried for the patients we’ve lost because this was too late. I also realized that I can’t change the what I have no control over, but I can keep serving the patients I have come to love.
On my ride home, I had plenty of time to think of what had transpired in front of me. One of my first thoughts was to pray to God and thank Him for allowing me this opportunity to serve so many with kidney disease, as well as allowing me to have the nerve to do some of the things I do– such as today.
I pray we will not lose any more patients in the near future, and I am grateful beyond words to all of those who have taught me along the way in the kidney space (believe me, there are hundreds of them).
So tomorrow when I wake up, the journey continues. Even though the executive order was signed, the work on Capitol Hill is ever more important. We have to expedite this through and yes, once again meet with our congressmen and senators.
As a mom of a child with kidney disease and as a Founder of the IGAN Foundation, I do believe this will be one of the first good night’s sleep I have had in 15 years.