Advocacy Letters for Children with Crohn's disease and ulcerative colitis

While most children and young adults with inflammatory bowel disease lead healthy and productive lives, it is not uncommon for such children to have periods of severe illness that interfere with school, activities, and work. During these periods, a family member or caretaker may also need to take time off from work to care for their ill child. These periods of severe illness or hospitalization are often very stressful for a child or parent. The child may be thinking “how will I ever get back to school?”, while the caretaker may be thinking “will I lose my job?”, or “what if insurance denies my child’s medications?” Fortunately, there are safeguards in place to assist families during these difficult times. They include the following:

 I. Educational accommodation plans (504 plans) that can modify a student’s schedule, provide extra help, and return a child to their normal scholastic routine.

Sample School Accommodation Letter
(Microsoft Word Document)
 II. Patient assistance plans that help with medication financing and medication copays 
•Sample Letter - Patient Assistance
(Microsoft Word Document)
III. Legally sanctioned work absences without fear of losing one’s job under the Family and Medical Leave Act
Family Leave Act - Overview
(Adobe PDF File)
Sample Letter - Family Leave Act
(Microsoft Word Document)
IV. Letters of medical necessity that inform an insurance company of the need for a particular treatment.
Sample Appeal Letter - Capsule Endoscopy
(Microsoft Word Document)
Sample Appeal Letter Adalimumab Therapy
(Microsoft Word Document)
Sample Appeal Letter - Medication
(Microsoft Word Document)

Preparing such documentation is often time consuming and requires the health care team’s input, but health care providers are not compensated for this work. The following summaries and templated letters are designed to facilitate and simplify this process. Of note, the following discussion is based on the laws of the United States of America, and is not generalizable to other countries. In addition, there may be state laws that affect these topics which are not reflected here.

If you or your team requires additional help with these issues,the following resources are available:
  • Advocacy for Patients with Chronic Illness - (Jennifer Jaff, Esq).
  • Know your Rights: A Handbook for Patients with Chronic Illness (2008 edition). or

    Additional downloadable letters are available on the Crohn’s and Colitis Foundation’s Website in the professionals section.

    The materials have been prepared by the NASPGHAN Inflammatory Bowel Disease Committee