The Pediatric IBD Foundation | 50 Congress Street, Suite 430 | Boston, MA | 02109

I wanted to inform you about a leadership role the Pediatric IBD Foundation is taking as an advocate for children with Crohn's disease and colitis that need access to medications. Even in states where there is universal coverage for child health, insurers are not required to cover the cost of medications for which there is not a specific indication in children.

Presently, 80% of all medications prescribed for children are considered off label that often denies parents insurance reimbursement for prescription drugs. Nowhere is this more evident than in children with inflammatory bowel disease where over 90% of the medications used remain off label. Some prescribed therapies can cost $75-100,000 per child per year!

Rules governing approval of medication in children often date back to the FDA's origin in the 1950's. Access to prescription drugs remains a major problem for children and their parents; federal agencies and the pharmaceutical industry have had little success in solving this loophole.

As a part of our continuing effort to find solutions to this problem, the Foundation is co-sponsoring a ground breaking conference on November 9, 2015 with federal agencies (NIH and FDA), researchers, clinicians and pharmaceutical companies.

This collaborative, unique and necessary meeting will address strategies for expediting the approval process of pediatric medications and establishing a National IBD Safety Registry under public domain. Federal agencies will direct these discussions and the resulting recommendations will help not only those living with gastrointestinal disorders but serve as a model for other disciplines as well.

The Pediatric IBD Foundation is hoping to enlist the advocacy and support of parents who feel children need a voice in Washington. Please let me know if you would be interested in learning more about our efforts and how you can help.

Eric Zuckerman, DO
Chairman, Pediatric IBD Foundation


Pediatric IBD Foundation is a 501(c)3 non-profit organization