Sadly, Paul Van Vooren passed away after this article was published.
As a patient with Von Hippel-Lindau (VHL) who has undergone 65 surgeries, including a kidney transplant, and received dialysis treatments for over eight years, I know the importance of coordinate care for dialysis patients.
My treatment for VHL sometimes requires me to travel hours to the Mayo Clinic in Rochester, MN. I also have my primary doctor in Sioux Falls that helps me maintain my active lifestyle, despite needing to rely on dialysis. From my conversations with other kidney patients, I know that isn’t the case. They also rely on several doctors for their various health conditions, and their lack of coordination means their treatments are designed to address individual problems rather than the entire patient. Care coordination is an issue that patients across the U.S. are passionate about, and it’s one that has had immense bipartisan support in Washington. Congress is working on a new bill called the BETTER Kidney Care Act to institute coordinated care, and I encourage Representative Dusty Johnson to support it.
Kidney patients need hope now more than ever amid the coronavirus outbreak. The BETTER Kidney Care Act would be the best solution to give patients peace of mind by ensuring they have access to coordinated care and are treated as a patient instead of a number.
Paul Van Vooren