Above and Beyond
During a recent Partners Healthcare Summit focused on Palliative Care, I spoke to a gathering of 500 medical professionals and shared this extraordinary experience from when my daughter Elizabeth was gravely ill. To watch my presentation, which begins at minute 21:20, click here.
MassGeneral Hospital for Children reached for the stars to save Elizabeth when she was critically ill and failing. She had received ten-months of chemotherapy treatments, but tumors continued to multiply relentlessly. We asked her oncologist if there were any experimental treatments. He found one at the Mayo Clinic in Minnesota, but Elizabeth was too weak to travel. Elizabeth’s oncologist and a team at the Mayo Clinic choreographed a way to bring the treatment to Massachusetts General Hospital. It was risky because the treatment involved a radioactive material, but it was her last hope.
Then we hit a wall. My medical insurance company refused coverage for this experimental treatment that could cost as much as $50,000. This decision was in violation of a new State law that mandated that if an insurance company refused to pay for a potentially life-saving treatment for a child, the State could force the insurance company to cover these costs.
Undaunted by my insurance company’s adamant refusal, Elizabeth’s oncologist and a team from MGH made a plan. They called a meeting with Dr. Koh, the then-Commissioner of Health for the State of Massachusetts, a senior-level person at the Harvard School of Public Policy, Elizabeth’s oncologist, and by phone, a doctor from the Mayo Clinic.
Elizabeth’s oncologist presented the case of why my daughter should receive this experimental treatment. He reviewed the potential benefits to both arrest the growth of her existing tumors and to provide palliative care. Dr. Koh decided that the treatment was medically viable and together with the representative from the Harvard School of Public Policy, they wrote the letter that ultimately forced my insurance company to pay for the experimental treatment.
We never had imagined that Elizabeth’s oncologist could assemble this formidable team and avidly advocate for her potentially life-saving treatment. These generous acts of kindness and accomplishment gave us the gift of hope in a desperate time.