Stephanie Shabanowitz is not supposed to be alive. But the 27-year-old from Oakdale is very much alive and she wants to be heard - by Congress.
“They told my parents I wasn’t going to be here,” the 2003 Montville High School graduate said. Here and accomplished. Armed with a master’s degree in education and looking for a teaching job. She is upbeat and hopeful.
“Life is good,” she said.
When she was just a teenager, Shabanowitz was diagnosed with both end-stage renal disease (ESRD) and the onset of ovarian cancer. End-stage.
In May 2010, she received a kidney transplant, but it failed four days later. She currently receives hemodialysis at her local dialysis center.
She is maintaining but there’s a problem. Paying for the medication she needs to stay alive.
“After receiving a kidney transplant in May 2010, I learned that Medicare only covers anti-rejection medication for transplant patients for 36 months. Transplant patients need to take anti-rejection drugs for the rest of their lives in order to sustain a transplant,” Shabanowitz said.
Shabanowitz has been chosen by the American Kidney Fund (AKF) to participate in its fourth annual advocacy day on Capitol Hill on Thursday March 7.
She’ll join 10 other patient-advocates from across the nation to participate in a variety of events in Washington, D.C.
“We shouldn’t have to decide between paying for meds or paying for housing, gas, food, bills,” she said. “I hope my voice, what I have to say could help a congressman see” the need for Medicare coverage for post transplant patients.
Shabanowitz is a member of AKF’s Advocacy Network, which features more than 1,400 kidney patients and caregivers nationwide. The annual Capitol Hill event provides AKF’s advocates the opportunity to educate policymakers on issues of importance to people who are living with kidney disease.
During her Capitol Hill visit, Shabanowitz will meet with Rep. Joe Courtney and the offices of Sen. Richard Blumenthal and Sen. Chris Murphy.