Mom Speaks Up on Drug Shortage

Thanks to you, children with leukemia and osteosarcoma are more optimistic about their future than they were a week ago.

A short term solution to a much larger problem is in place today as the FDA approved the import of methotrexate (MTX) from the Australian branch of Hospira, Inc. and approved an application from pharmaceutical company, APP, to begin manufacturing preservative-free MTX in the U.S.

However, as noted in the New York Times, Dr. Peter C. Adamson, chairman of the Children’s Oncology Group said he was pleased that the immediate threat of a methotrexate shortage had passed. “But this is at best a Band-Aid approach to the problem.”

Pediatric drug shortages should never be a threat.

As a parent with a child in treatment for acute lymphoblastic leukemia (ALL), Nancy Lenfestey shared her thoughts on the drug shortage issue:

"When your child is diagnosed with leukemia, you picture the cancer cells rapidly multiplying and you feel an indescribable sense of urgency to begin chemotherapy as soon as possible to eradicate the leukemia. When you hear about a possible delay in your child’s treatment that can derail the progress made in your personal fight against cancer, fear, frustration, and anger are just a few of the emotions that overcome you.

Scott’s oncologist explained that the notification system for these drug shortages is in dire need of reform. Providers receive notification of critical shortages just before they become a crisis. This leaves oncology teams scrambling and families worried and plagued with fears of the implications of the shortages on their child’s treatment and prognosis. It is already extremely challenging for families to deal with leukemia itself — let alone face the fears and added frustration of now having to deal with impending drug shortages. You don’t want to see any lost ground, missteps, or treatment setbacks that could negatively impact your child’s prognosis and likelihood of being cured. Our worry was that if Scott ever relapsed, we’d always wonder if the shortage and 11-day delay in treatment contributed to it. The guilt we’d experience as parents would be unbearable if we didn’t put forth our best effort.

While the methotrexate disaster has been mitigated, at least temporarily, the larger issue still remains of how do we prevent this from happening again? Looking ahead, Scott will begin the dreaded next phase of treatment in three weeks, and at least one of the medications he will need is already on the FDA drug shortage list! What a nightmare — serious system-wide change is needed.

Children with cancer are already suffering enough as it is. We’re fortunate that the cure rate for ALL is high, with the use of methotrexate and other chemotherapies that are currently on the shortage list. However, no child should have to succumb to this disease due to a drug shortage, something that should be and more importantly, can be prevented."

The unified action of the childhood cancer community, along with thousands of letters promptly sent to Congress by the St. Baldrick’s community, helped to mitigate this crisis in the short term. Your continued support will help to resolve the larger issue, so every child has the treatment they require for their best chance of survival.

In service of our children,

Kathleen Ruddy
Executive Director
St. Baldrick’s Foundation