Irritable bowel syndrome is estimated to affect 9-23% of people in different countries worldwide, conservatively 10-15% in the U.S. alone. One would think this means that IBS education, treatment and local support systems are are readily available, as they are for many other less common chronic conditions in many communities. In many parts of the U.S., people diagnosed with diabetes or kidney disease, for example, can be promptly referred to clinics, classes and support groups run by hospitals or local affiliates of large national not-for-profit organizations to teach people to manage their conditions effectively, and staff may also be available to respond to ongoing routine questions and concerns. For other conditions, such as cystic fibrosis and hemophilia, national networks of specialized treatment centers exist where affected children and adults can receive expert care. Sophisticated mechanisms for sharing information about patients seen in those centers have been developed for the purposes of coordinating treatment and research. Over the past few decades, this ability has contributed to increasing life expectancy and quality of life significantly for people with these serious inherited disorders.
Granted, IBS is not as clearly understood scientifically, nor is it life-threatening. However, despite its high prevalence, many people with IBS anecdotally report difficulties in finding physicians, psychologists and other providers who have extensive, current experience and knowledge of IBS, and who practice with true understanding and compassion for what may be complex needs. As discussed in IBS Impact’s October 9,2011 post, recent research by a team at UCLA has shown that many physicians and primary care nurse practitioners who do not specialize in functional GI disorders do not use the Rome criteria for diagnosis and still do not recognize that IBS is no longer a diagnosis of exclusion. There are various university medical centers in the U.S and abroad that have consistently studied IBS to some extent, but this is not true of every teaching hospital in all geographical areas, even some large cities. Centers that solely focus on comprehensive, state of the art patient care, education and research for functional gastrointestinal disorders are few.
There are reasons for hope, as well as much work left to be done by the IBS community toward better access to quality treatment for all who need it. Recently, IFFGD launched its new Digestive Health Alliance site which includes a U.S. and international care locator of providers who voluntarily indicate to IFFGD that they have an interest or specialization in functional gastrointestinal disorders. IFFGD has long provided such lists on request, but perhaps the move online will make these resources more easily available to anyone. IFFGD asks people with functional GI and motility disorders to suggest additional providers they have found helpful, whom IFFGD will then approach for possible inclusion in the directory. IBS Impact encourages readers of this blog to do so, as entries for many locations remain scant, and the locator will be most useful when it can provide several potential choices to people in each geographical area.
Part of HR 2239, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, also addresses the issue of centralized, coordinated research and care by calling on the National Institutes of Health to establish “up to five centers of excellence on FGIMDs located at academic medical centers throughout the country” dedicated to functional GI and motility research. IBS Impact once again urges readers to ask their Members of Congress to support this legislation.
Finally, Douglas Drossman, MD, FACG, co-founder and current co-director of the University of North Carolina Center for Functional GI and Motility Disorders has recently announced publicly that at the end of 2011, he will be leaving full-time patient care and research at UNC in order to concentrate on several other goals, including consulting for other clinicians and newer researchers and leading workshops on the biopsychosocial model, patient-centered care and other subjects related to functional GI disorders. IBS Impact thanks Dr. Drossman for his many decades of commitment to people with functional GI disorders and to establishing the field as a legitimate and viable area of research. We wish him and his Center colleagues well in this transition and success in his new endeavors. The IBS community, both people with IBS and professionals, should support him in his new initiatives so that they bear fruit for our community in the years to come.