Until that day comes, we have an obligation to improve quality of life by reducing the impact of living with IBD. Glasgow talked about some of the challenges that a person suffering from IBD faces, including general lack of awareness of the disease, late diagnoses, poor access to IBD specialists and clinics, and lack of insurance coverage for expensive yet critical medications. Employment issues are very common, with 21,000 people with IBD unable to work every year, and over 40 per cent of people taking short-term leaves, he said. Even those in remission suffer from fear and anxiety in anticipation of a future relapse. Panellist Ruth Scully, a volunteer with CCFC, has two children with IBD. As a mother, it is so difficult to watch my kids in pain. I wish I could take it all away from them, she said. Her son requires more than $40,000 worth of medications per year to manage his disease. She worries that soon he will not be covered by the family insurance policy and that paying for the drugs will be a burden for him for the rest of his life. My strategy to cope with the IBD in my family is to do anything I can to help. I volunteer, raise money and speak to other parents whose children have been diagnosed, she said. Its a common disease, but people arent talking about it. Each year, the Scully family participates in the CCFCs Gutsy Walk, to raise money for IBD research. Her children have raised more than $100,000 in pledges since they began participating. I am more committed than ever to improving my childrens future, Scully said. We need to find a cure for IBD, but in the meantime we need to help people live with it. Dr. Hillary Steinhart, the head of the division of gastroenterology at Mount Sinai, spoke about what its like as a physician to see the impact of IBD.
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Wait Times for Patients Who Need Gastroenterology Care Are Getting Longer
SAGE surveys were also conducted in 2005 and 2008 . Over a seven-year period, the trend in longer wait times is evident according to soon to be published 2012 SAGE data. “Our analysis shows that patient wait times are now 30 days longer than they were in 2005,” says CAG Dr. Desmond Leddin, Lead on the CAG SAGE program. “This is a disturbing trend, and one which indicates a need to pursue strategies to ensure patients receive the digestive care they need in a more timely manner.” As an example, the recent SAGE data shows that a patient with a high likelihood of severe Inflammatory Bowel Disease (IBD) can expect a total wait time of 126 days. Of these 126 days, patients wait on average 72 days for a consultation and 44 days for a diagnostic endoscopy. Given the target total wait time of 14 days for this disease category, these patients are waiting 16 weeks longer than the recommended wait time target. (See fact sheet ) “The gap between current wait times and the desired target is too wide and wait times are getting longer,” says Dr. Dan Sadowski, President of the CAG. “In human terms, what this means is that many patients live with pain and some are unable to work or attend school and can only do so with difficulty while waiting for consultation and treatment.” This year, the WTA report is shedding more light on the total wait time(i) Canadians can experience in receiving necessary medical care. Thanks to the total wait times data collected and provided by CAG, the WTA report is now more comprehensive than ever. “The CAG has been a source of robust information for our expanded focus on wait times”, says Dr. Chris Simpson, Chair, Wait Time Alliance. “Their data on total wait times for access to care, not just a portion of it, is extremely valuable to the WTA. It not only validates that total wait times are increasing, it contributes significant insight into the patient perspective on health care in Canada and reinforces the need for greater investments in timely access to care.” “With results over the last three surveys, we can plot trends in access to digestive care over a seven-year period,” says Dr. Sadowski.
Conflicts of Interest Ethics: Silencing Expertise in the Development of International Clinical Practice Guidelines
Critical revision of the article for important intellectual content: D.J. Jones, A.N. Barkun, Y. Lu, R. Enns, P. Sinclair, I. Gralnek, M. Bardou, E.J. Kuipers. Final approval of the article: D.J. Jones, A.N. Barkun, Y.
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