Something felt a little off after my daughter was born. I started feeling more exhausted each day after work, and at one point one of my elementary school students even pointed out that I didn’t look well. I had always been perfectly healthy, so I never expected that I’d be diagnosed with kidney disease. But, after a referral to Johns Hopkins for care, doctors started me on dialysis right away.
That’s when my long, difficult road with kidney disease began. Shortly after starting dialysis treatments – despite receiving the best care possible – I fell into a 31-day coma that had my doctors so concerned for my life that they brought my family into the hospital to say goodbye.
I pulled through, but then unfortunately had a kidney transplant that caused dangerous levels of bleeding which forced doctors to remove the kidney and put me back on dialysis. It wasn’t until seven years later that I received a 2:00 AM call telling me a new transplant was ready. Thankfully, after 18 years since I first started dialysis, that transplant took and I now feel as healthy as ever.
It’s been a tough journey to get where I am today, but I’ve also felt blessed along the way. From my family to my kind and understanding nurses and doctors, I have had good people in my corner at every step. Beyond that, I’ve also had great insurance that enabled me to get the treatments that I needed without having to worry about being able to afford them.
Sitting next to and speaking with other patients in the dialysis clinic showed me that things are very different for many other patients, especially those who rely on Medicare for all of their coverage. If Medicare doesn’t cover a particular cost, then it comes out of the patient’s pocket. And, since Medigap coverage for those costs isn’t available everywhere for kidney patients under 65, that’s a more common issue than it should be.
It might not have to be for much longer, though, since lawmakers in Congress have introduced the Jack Reynolds Memorial Medigap Expansion Act. It would make Medigap coverage easier to get for End-Stage Renal Disease patients under 65, and help ensure that they don’t have to make decisions between life-saving treatments or other things their families need.
I’m hoping that our U.S. Representatives from Kentucky, like Congressman John Yarmuth, Thomas Massie, and others can help to lead the way and make sure this bill passes. It’s a bipartisan solution to a problem that’s been devastating kidney patients for years, and we need it to make sure no patients are unable to afford the treatments they need just to survive.
We already know that Kentucky’s representatives are ready to lead on this issue. Last year, Representative Andy Barr cosponsored the BETTER Kidney Care Act, which was designed to make patients’ experiences easier by improving access to care coordination services. I trust that he and his colleagues can help gather support for this crucial new bill.
I always had the support and coverage that I needed, and I want to make sure that other patients can too. I don’t want anyone else to be in the same position as the people I sat next to who weren’t sure how they’d afford their next treatment. Congress can help to prevent that by passing the Jack Reynolds Memorial Medigap Expansion Act and making affordable coverage more accessible to dialysis patients who are struggling to make ends meet.
Jenny Wrightington, Prospect, Kentucky
This letter was originally published in the July 29, 2021 print edition of the Courier-Journal.