To the editor: As someone who has been on dialysis for 23 years, educating other patients and advocating for them gives my job meaning. I get to assist people who have gone through the same challenges I have and help people better understand exactly what life on dialysis is like. Through my work, I’ve seen how many patients struggle with high costs. A lot of patients rely on Medicare, but can have considerable out-of-pocket costs when it doesn’t cover what they need. This is especially true for patients under 65, who often don’t receive Medigap coverage for those costs that [...]

Starting dialysis in 2016 showed me there are a lot of challenges patients with end-stage renal disease (ESRD) face. There are major lifestyle differences, and treatments take several hours multiple days each week. While I can do these treatments from home at night, lots of other patients need to make trips to their local clinics, which takes an exhausting toll. One of the biggest challenges for many patients, though, is the cost of the treatments and medications. Over time, those costs get overwhelming and can force patients and families to make difficult decisions that they should never have to worry [...]

While my husband was on dialysis, and even since his kidney transplant, getting affordable coverage has felt impossible. If Medicare doesn’t cover something, we have to scramble to afford it, which was a massive challenge given his dialysis treatments got up to $15,000 and medications can cost $3,000 each month. This shouldn’t happen. We need lawmakers to pass bills that make coverage more accessible for patients, like the Jack Reynolds Memorial Medigap Expansion Act. It would help make Medigap coverage more accessible to dialysis patients under 65, so they don’t go through what my husband and I have. Patients can’t [...]

For a lot of patients, starting dialysis means not being able to work anymore. Thankfully, with my job I can work from home when I’m doing my treatments, which has been hugely beneficial in helping me stay employed and get the coverage I need. The situation is very different for a lot of other patients, though, who can’t continue to work and get coverage. Instead, they rely solely on Medicare, which means if Medicare doesn’t fully cover a treatment or medication, they pay big out-of-pocket costs. That’s why we need Congress to pass bills like the Jack Reynolds Memorial Medigap [...]