“All I have left now are clinical trials – and it gets really scary,” Amy told us when we spoke with her about her battle with blood cancer.
That journey began more than 13 years ago. “It was 2008 and my back collapsed.” She was in so much pain when that happened, she couldn’t walk. But at age 37, no one suspected the worst. A routine blood test later revealed something alarming and upon further investigation, the diagnosis was clear – Amy had multiple myeloma.
Multiple myeloma can cause anemia and kidney damage in some patients. However, in others, as was the case with Amy, it eats away at your bones from the inside out. She enrolled in a clinical trial immediately, but the treatment didn’t work for her. Instead, she got sicker. But she soon found help at the Mayo Clinic – a treatment that did work… for about four years.
What came next, as is typical with multiple myeloma, was a series of treatments and clinical trials. One would work until it didn’t, and then it was a frantic search for the next – and every step of the way Amy was pulling money out of savings to pay for her travel to different treatment centers. She went on most trips alone. There was no extra money for a caregiver to travel with her. It was not only lonely, but it was also frightening. Yet she came to terms with the belief that it was all just part of the deal – even though her participation in the various clinical trials was actually helping contribute to the development of potential new treatments.
In 2021 Amy had found a clinical trial in Philadelphia, which is about 3 hours from her home near Washington, DC. The trial requires her to travel to Philly once a week and, in this case, the trial sponsor agreed to pay for Amy’s tolls which added up to $28 dollars each week. However, six months into the trial, the sponsor decided to discontinue that reimbursement. Amy was on her own at a time when money was becoming more of an issue than ever. Because of her health, Amy could no longer work, and to make matters worse, her insurance rates and out-of-pocket costs had skyrocketed.
When Amy learned about Lazarex from a patient organization, it was just the relief she needed. Not only did she start receiving financial help in the form of travel reimbursements for her gas, parking and hotel when she goes to Philly, Lazarex also some provides some companion reimbursements, which means Amy’s dad could travel with her as her caretaker, at least for the longer stays, something that Amy had desperately wanted but couldn’t afford.
“It’s been such a rollercoaster. The trial sponsor was paying for mileage tolls and parking and then they were late with the reimbursements and then stopped paying altogether. So Lazarex picked up the payments going forward. It’s hard to even describe how I felt when I found out about Lazarex. I remember the moment they called when I applied. The fact that I could get my dad there – it just meant so much. I’m so grateful.”
Amy says every penny counts when patients are in a situation like this – even 25 dollars. “And what’s more is how I’m treated when I call. Everyone at Lazarex is so nice – it’s a family – that makes a difference when you’re going through something like this.”
She says Lazarex fills the gap, lifting a huge burden and relieving much of her financial stress. “Lazarex Cancer Foundation is doing things that are helping me stay alive. I’ve tried to write notes – but how do you even thank someone for that?”
