One evening in November 2002, Center Director Meg Gaines received a call from the father of 2-year-old Parker. Parker had been diagnosed with a brain tumor, and his parents were faced with some tough decisions. Parker was being treated at a teaching hospital. Parker’s oncologist recommended chemotherapy and stem-cell recovery therapy. Despite the treating physician’s solid recommendations, however, the insurer denied payment for this therapy because it was “experimental” and not the current “standard of care.” Parker’s parents did not know what to do in the face of the insurer’s refusal to pay.
After hearing the father’s panic and confusion about how to proceed, center advocates asked him a critical question: “If the worst happens and Parker dies from this disease, what decision today would allow you to say you did everything you could?” Without hesitating, he said, “I would do the chemo and bone marrow transplant.” Parker’s parents were willing to do whatever was necessary to get him the treatment he needed. They mortgaged their home and borrowed to their maximum. Still, they could not begin to cover Parker’s treatment costs.
A student advocate negotiated with a hospital administrator so the hospital would allow Parker to begin treatment without prepayment.
The insurance company never agreed to pay for Parker’s treatment. However, the Center for Patient Partnerships helped his family arrange coverage through a Medicaid waiver program for children with special health care needs. Years later, Parker is in remission and enjoys an active life.
The Center does not file lawsuits or litigate. Seeking no reimbursement for themselves, however, Parker’s parents retained counsel and filed suit against the insurer, asking that the company reimburse Medicaid for the cost of their son’s treatment. Parker’s mother explains, “Those funds are for families who don’t have insurance, and we have insurance.”