With the very specific niche of the IBS Impact site and blog, we are faced with the questions of why people with IBS and those who support us should become involved in awareness and self-advocacy efforts and why people without IBS should care. Why does IBS matter as a broader societal issue rather than as solely a personal and private health problem? There are many possible answers to that, but one major reason why it matters is that IBS is an astoundingly expensive disorder that is already affecting society in many countries.
Many people who have dealt with moderate to severe IBS, for times ranging from a few years to a few decades, have gained enough experience to realize some of the ongoing costs, as they go through diagnosis and the trial and error of available treatments: perhaps opinions from and stints with multiple conventional, complementary and/or mental health care providers, prescriptions, over the counter medications, supplements, special food for various diets, extra personal hygiene items, IBS related books and CDs. The list of possibilities goes on. Some of these expenses are not covered by health insurance in the United States or by universal health systems in other countries, and are out of pocket for those of us with IBS or our families. Part of this common experience is described by the 2009 report of the comprehensive and ongoing Unmet Needs Survey conducted by IFFGD and the University of North Carolina Center for Functional Gastrointestinal and Motility Disorders. This group of results involves 1966 respondents, primarily from the U.S. and Canada, but also several other nations. The report lays out several categories of interventions and types of health providers that study participants have used, either currently or in the past. There have been many other published studies and reports, some dating as far back as over two decades ago, on health care usage and the economic impact of IBS.
According to IFFGD’s Reporter’s Guide to Irritable Bowel Syndrome (see page 2), IBS is the most common diagnosis made by gastroenterologists and the seventh most common by physicians overall. It’s also generally accepted among researchers that the vast majority of people with IBS are not even diagnosed (77% according to a 2007 publication by Anthony Lembo, MD of Beth Israel Deaconess Hospital in Boston, Massachusetts, and 90% according to the Gastrointestinal Society in Canada’s 2009 article on its website). But those known to have IBS still statistically use more medical care than the general population. Aside from citing various U.S. studies, Dr. Lembo provides a detailed analysis from a national survey in the Netherlands, suggesting that this is not just a North American phenomenon. Dr Lembo addresses both GI and non-GI symptoms of IBS. In his December 2011 presentation on non-gastrointestinal symptoms in IBS, Olafur Palsson, PsyD of UNC states that about one-third of people with IBS experience significant non-GI symptoms and that that statistically, this subset uses twice as much health care as others with IBS, mostly not for bowel complaints. This, Dr Palsson says, may lead people to accumulate diagnoses, treatment, tests, unneeded surgery and side effects.
In a 2003 abstract of a systemic literature review that has since been widely quoted elsewhere, researchers at the VA Center for Practice Management and Outcomes Research and the University of Michigan write, “The mean direct costs of irritable bowel syndrome management were reported to be UK pound sterling90, Canadian$259 and US$619 per patient annually, with total annual direct costs related to irritable bowel syndrome of pound sterling45.6 million (UK) and $1.35 billion (USA). Direct resource consumption of all health care for irritable bowel syndrome patients ranged from US$742 to US$3166. Productivity costs ranged from US$335 to US$748, with total annual costs of $205 million estimated in the USA. Annual expenditure for all health care, in addition to expenditure limited to gastrointestinal disorders, was significantly higher in irritable bowel syndrome patients than in control populations.” Direct costs, as explained by the Gastrointestinal Society at the link in the third paragraph of this post, includes expenses like diagnostic testing, prescriptions, referrals to other professionals, and emergency room visits, which are all itemized in the article. According to the Gastrointestinal Society’s 2003 source, this totals an estimated $131 million per year in the province of Ontario alone. In Canada and other countries with publicly financed universal health care, direct costs are expenses to the system. In the U.S., with decentralized health care, the costs may variously fall on individuals, employers, private and/or government insurance.
Indirect costs include the economic impact on employers and communities of people who are not able to work or are less productive when doing so. According to the Unmet Needs Survey linked in the second paragraph of this post, 13% of all respondents are not employed because of health. For those with severe IBS, the figure is 30%. The Gastrointestinal Society article is more specific, citing various studies that employee absenteeism is three times that of those without functional GI disorders, similar to rates for the common cold, and various types of negative impact on work, such as quitting or losing a job, changing schedules, reducing hours and/or turning down a promotion. These statistics range from 8-26% in the various categories, with most individual categories in the double digits. Dr. Lembo’s article includes similar issues and statistics.
From observation in IBS community, it appears that most people who are significantly hindered by IBS do wish to and make an effort to maintain or regain an active, constructive quality of life, but this is an ongoing challenge. As discussed on this blog on January 10, 2012, a Rome Foundation report from mid-2011 states that the percentages of moderate and severe IBS are actually somewhat higher than the same authors believed in the recent past.
All this is part of why IBS advocacy and awareness are important and why people with IBS and people without it should all care. Investments of time, effort, funding and passion now will increase the chances of a payoff later through medical and social advances that will allow more of us with IBS increased physical, emotional and social comfort and productivity in our families, schools, workplaces and communities. When we have reliably and widely effective treatment interventions and the community resources that many other health and disability groups can take for granted, perhaps more of us can stop draining our own bank accounts and those of society at large in our efforts to live well with IBS.