Fo­cal seg­men­tal glomeru­loscle­ro­sis (FSGS) caused my kid­neys to fail nearly 30 years ago. Since then, I’ve been on and off dial­y­sis as FSGS and the treat­ments it re­quires have taken their toll on my health and sev­eral trans­plant kid­neys.

The treat­ment process and the costs as­so­ci­ated with it have been egre­gious. The high cost of med­ica­tions to keep trans­plant kid­neys healthy makes them fi­nan­cially un­ten­able for many pa­tients, and dial­y­sis comes with a heavy cost, too. That’s with­out fac­tor­ing in the med­ical ex­penses due to the skin can­cer and bone dis­ease caused by the FSGS treat­ments I’ve re­ceived.

As­sis­tance from Medicare and Med­ic­aid saved me, but for many pa­tients, they aren’t enough. Medicare only pays up to 80 per­cent of dial­y­sis costs for pa­tients un­der 65 if their state does­n’t have the right pro­tec­tions in place, with pa­tients pay­ing the rest. I for­tu­nately have sec­ondary in­sur­ance through an em­ployer, but many oth­ers can’t say the same.

Pa­tients need law­mak­ers to step up and help. The Jack Reynolds Memo­r­ial Medi­gap Ex­pan­sion Act would en­sure pa­tients can get Medi­gap plans to help cover the costs Medicare does­n’t han­dle alone and would al­le­vi­ate a sig­nif­i­cant fi­nan­cial bur­den.

The med­ical ex­penses of these treat­ments pre­sent a mon­u­men­tal fi­nan­cial hur­dle for our fam­ily. We can’t save to send our son to col­lege or pay any costs be­yond my med­ical treat­ments. The same is true for count­less oth­ers, and we are count­ing on elected of­fi­cials like Rep­re­sen­ta­tive Mondaire Jones to pass leg­is­la­tion that can help.

Michael De­laney, Dobbs Ferry, New York

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