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SUMMARY, CHALLENGES AND RECOMMENDATIONS


COMPARISON OF CANADIAN PREVALENCE WITH OTHER DISEASES


It is important to provide a context of the prevalence of IBD compared to other chronic diseases in Canada. One should look to other chronic diseases which occur in working age adults for a point of comparison. Many chronic diseases are uncommon in younger individuals, but dramatically more common in older people; these are less appropriate as comparisons.


With a prevalence of 233,000 people, IBD is: • more common than multiple sclerosis (68,000)146 • not as common as rheumatoid arthritis (340,000)150


• about as common as epilepsy (204,000)148 CHALLENGES


The challenges facing persons with IBD, their family members, and caregivers are significant and vary from province to province. The common challenges facing the IBD community include but are not limited to dimensions of awareness; diagnosis; timely and equitable access to treatment and medications; health services delivery; employment; support systems; and research.


Awareness


The following problems in relation to awareness provide a starting point for communications efforts across Canada:


• The prevalence of IBD estimates, outlined in this document, make it clear that CD and UC are not “orphan diseases” in the technical sense152


. Low awareness and lack of


understanding, however, make IBD feel orphaned from the family of diseases typically considered to be chronic diseases (for example, diabetes, arthritis, asthma).


• Due to the nature of IBD, these conditions are not preventable and therefore, do not fall under existing chronic disease prevention policies and programs funded by governments across Canada. Therefore IBD is not part of public health awareness campaigns that target prevention and management of chronic diseases.


• While there is consensus in the medical community that CD and UC are chronic diseases, the variability of symptoms and time course also tend to “orphan” IBD from other chronic diseases. A chronic care model modified to suit the episodic nature of IBD would be beneficial to help better coordinate care and engage public and private funders.


• General community awareness levels are low, with frequent misunderstanding about IBD and between IBD and irritable bowel syndrome (IBS).


• Stigma is often associated with the conditions because of the nature of the symptoms. • Lack of bathroom access in public settings (e.g., bathrooms are kept locked, inaccessible to non-patrons), can significantly limit freedom and mobility for persons living with IBD.


• Currently, there are no local or national campaigns to raise awareness of the urgency related to IBD to facilitate near-immediate access to public bathroom facilities.


THE IMPACT OF INFLAMMATORY BOWEL DISEASE IN CANADA 82


or Type 1 diabetes (233,000)149


or Parkinson’s disease (100,000)147 ;


or schizophrenia (340,000)151 . ;


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