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                   CENTRAL JERSEY CELIAC/DH SUPPORT GROUP 
                                    and Cel-Kids Network  CSA # 58

                                       Wednesday, March 29th

                               East Brunswick Public Library

                                              7:30 PM

For info Call: Diane at 732/679-6566

    Topic:

 The recent Digestive Disease Public Policy Forum this past March 12th and 
13th which took place in Washington, DC.

One of the inclosures in the packet that many attendees presented to their 
senator and congressmen.

                                  Of special interest:

                                   GENERIC DRUGS

       Potential Health Risk To Individuals With Digestive Diseases

As health care costs are reviewed, the use of generic drugs appears in more 
corporate contractual arrangements. Product ingredients used as common drug 
fillers pose health threat to those with digestive diseases.

     In general, information about generic drugs is, at best,questionable.For 
example,little,if any information about excipients is available to either 
patients or pharmacists. The formula can and does change without notice. This 
presents a very significant, and real and implied risk to digestive disease 
patients.

     Those with celiac disease experience damage to the small intestine if 
they consume wheat, barley, rye and possibly oats (WBRO) in any manner, form or  
quantity including not just the grains themselves but also ant derivatives or 
variants.

     At the present time, the only known "cure" for celiac disease is the 
total and permanent elimination of WBRO from the diet of a celiac patient, that 
is, the medically required gluten-free lifestyle.

       Because WBRO can occur in many places (inert ingredients in any 
product, flour dusting of product transfer lines, packaging ingredients, air 
contamination during manufacture, products made on the same manufacturing line,etc.) 
crosscontamination and hidden sources of toxic materials (WBRO) are a major 
concern for celiacs as well as other digestive disease patients.

       Digestive disease patients require information to control their own 
lifestyle. For a digestive disease patient who requires medicines on a daily 
long-term basis, information about all ingredients in each medicine is of vital 
concern in order to avoid any harmful ingredients,includingWBRO in the case of 
a celiac patient.

       Obtaining the necessary information about generic drugs is a difficult 
situation and becoming more challenging for older individules,particularly 
those with multiple drug needs and multiple digestive sensitivities.

The Digestive Disease National Coalition DDNC strongly urges that all  
medicines be made available in package inserts and other patient/pharmacist 
informational resources. As many as two million diagnosed and undiagnosed celiacs in 
the  United States need information at the point of purchase to realistically 
live their medically required lifestyle "cure"

         

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