Representative Joyce of Ohio Co-Sponsors HR 2311 for Functional Gastrointestinal and Motility Disorders

June 28, 2016

According to IFFGD/the Digestive Health Alliance and the official Congressional legislative database Congress.gov, Representative Dave Joyce (R-OH-14) has recently signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015.

Representative Joyce is serving his second term in the House of Representatives. His district, the 14th Congressional District of Ohio,encompasses the northeastern region of the state bordering Lake Erie and the Pennsylvania, including  Ashtabula, Lake, and Geauga Counties, eastern Cuyahoga County, northern Trumbull County, northern Portage County, and northeastern Summit County. According to his official House website, Representative Joyce is currently a member of the House Subcommittee on Military Construction and Veterans’ Affairs.  As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk for functional gastrointestinal disorders like IBS, which are already very common in the general population. Representative Joyce also is a member of several caucuses supporting other specific health conditions.

If you are a constituent of Representative Joyce,  please take a few minutes to write or call him with your thanks for his support of the functional gastrointestinal and motility disorders community.

In officially supporting HR 2311, Representative Joyce  joins Representative F. James Sensenbrenner, Jr. (R-WI-5) , who is the initial sponsor,  Representative Andre Carson (D-IN-7), Representative Zoe Lofgren (D-CA-19) and Representative Gwen Moore (D-WI-4), Representative David Young (R-IA-3), Representative David Loebsack (D-IA-2), and Representative Keith Rothfus (R-PA-12) If you are a constituent of any of these Representatives, please thank them as well.

According to the information on Congress.gov, it appears that the bill is currently under consideration in the Subcommittee on Health. Click on the link above if you would like to see a list of its members.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 2311, please see the previous post from May 18, 2015 for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2014 elections, district boundaries that may have been re-drawn, or if you have moved.

Your personal experiences as a person with IBS and/or other functional GI/motility disorders, or as a concerned family member, friend or colleague, are most effective in communicating to legislators and their staff that there are real human beings behind the statistics. However, even general expressions of support are helpful.

HR 2311 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 2311.

NIH grants funding to researchers throughout the world, not just in the U.S., so in the long run, enactment of this Act may also benefit readers with IBS in other countries. Medical research also sometimes involves multinational teams of scientists, and in any case, study results are usually published globally, adding to the cumulative knowledge worldwide.

It is IBS Impact’s understanding that HR 2311 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 114th,  the necessary number of sponsor/cosponsors must be reached by December 2016. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 2311 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012 and HR 842 in 2014. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 2311 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


New Rome IV Diagnostic Criteria for Irritable Bowel Syndrome (IBS) Unveiled May 2016

June 9, 2016

Just over two weeks ago at the annual professional conference, Digestive Disease Week, May 21-25, 2016, the updated Rome IV diagnostic criteria for functional gastrointestinal disorders such as irritable bowel syndrome (IBS) were officially presented to the international gastroenterology community.

As this blog reported in the February 23, 2015 post, this revision is the result of several years of collaboration by international experts in functional gastrointestinal and motility disorders  from many countries, several of whom are sometimes mentioned on this blog. The actual development was finalized in December 2014. This work was then prepared for publication in the May 2016 issue of the journal Gastroenterology. The Rome criteria are the international standard used to diagnose functional gastrointestinal disorders such as irritable bowel syndrome (IBS) and are widely considered by experts to be 98% accurate in diagnosing IBS based on symptoms without the need for extensive testing for most people. Some version of the Rome criteria has been in existence for 25 years. The previous version, came into use in 2006, and many new research insights have been gained in the last decade, so these updated criteria are a major advance for the field.

Information about Rome IV that is readily accessible to those affected by these conditions and the public is gradually becoming available, but so far, these are some of the important details relevant to the IBS community:

According to a report, “Updated and Revised Rome IV Criteria Released” by Katherine Hasal of HCPLive, an online publication for health professionals, Rome IV has begun to shift away from the current term “functional GI disorders” and toward “disorders of gut-brain interaction.”

This appears to be an intentional attempt to focus attention more precisely on one of the major issues known by researchers for many years to characterize irritable bowel syndrome and the many other gastrointestinal disorders in this category.  A functional disorder is  defined as, “a disorder for which no known physiological or anatomical cause has been identified,” in contrast to an organic disorder, “a disorder caused by a detectable change in the physiology or structure of an organ” (Free Dictionary).  Traditionally, the medical profession has separated IBS and related gut-brain disorders from GI disorders evident on currently available clinical tests, such as inflammatory bowel disease or celiac disease, in this manner. To this day, decades after expert IBS researchers began to show otherwise, this distinction has led many people with IBS to misunderstand why “nothing is wrong, ” and many health care providers, families, friends and the general public to dismiss IBS as in one’s head, not real, or real but trivial. The Rome Foundation Rome IV Frequently Asked Questions page states in part, “We also expect to show with Rome IV that we can finally discard the functional-organic dichotomy that tends to stigmatize these disorders. Functional GI disorders are now understood as having abnormalities in mucosal immune dysfunction and the microbiota.” (para. 2)  IBS Impact hopes that this change in terminology will contribute to the continuing gradual education and awareness on these important matters.

Specific to IBS, there are several changes in the definition. As summarized by Olafur Palsson, Psy.D, a full professor and researcher at the University of North Carolina Center for Functional GI and Motility Disorders who was a member of the Rome IV committees, the Rome IV criteria for IBS are:

“Recurrent abdominal pain on average at least 1 day a week in the last 3 months associated with two or more of the following:

1.Related to defecation

2. Associated with a change in a frequency of stool

3. Associated with a change in form (consistency) of stool.

Symptoms must have started at least 6 months ago.”

Significant differences between Rome IV and Rome III mentioned by Dr. Palsson are: “Discomfort” has been removed from the criteria; only what is described as “pain” meets the major criterion. The threshold for symptomatic periods has been raised to an average of once a week from the previous three times per month.  It is no longer assumed that pain necessarily begins at the same time changes in stools occur, only that the symptoms are associated. Pain relief after defecation has been removed from the criteria and replaced by pain related to defecation. Finally, subtyping of IBS into diarrhea-predominant, constipation-predominant, mixed or unsubtyped is now not dependent on specific numerical percentages of specific stool types but on the patient’s report of the frequency of types based on the standard Bristol Stool Scale.

In another posting from Digestive Disease Week, Dr. Palsson shared a graph based on his and his colleagues’ study of 6300 people in a population-representative Internet survey, allowing them to estimate that the overall prevalence of IBS in the United States, Canada and the United Kingdom dropped to 5.7% under Rome IV from 10.7% under Rome III. According to Dr. Palsson, the percentage in each of these individual countries is statistically similar to one another under both criteria.  The decrease is apparently because of the tightening of the criteria to include only pain and to exclude discomfort. IBS Impact notes for context that previous estimates of the prevalence of IBS have ranged anywhere from 9-23% worldwide or 10-20% in the United States specifically depending on the source, so Dr. Palsson et al’s results can most likely be regarded as on the conservative end of the range.

Finally, as this blog reported on October 11, 2015, the Rome Foundation has also released with Rome IV a new tool for physicians that did not exist in previous versions of the Rome criteria. The Multidimensional Clinical Profile (MDCP) incorporates 5 categories aimed at capturing individual aspects of a given patient’s physiological, psychological or social situation or history that may affect his or her IBS. In an interview with Family Practice News, a publication for physicians, linked on this blog at the time, Douglas Drossman, MD, MACG, the president of the Rome Foundation along with many other pivotal titles and roles in the field over his 40+ year career,  expressed the hope that the new MDCP will assist physicians in providing a more precise diagnosis and targeted treatment depending on the particular patient’s individual needs.

With the release of Rome IV, the Rome Foundation and other organizations have new opportunities to increase their education and awareness efforts for disorders of gut-brain interaction like IBS. Two such examples are the University of North Carolina Center for Functional GI and Motility Disorders’ continuing education event on Rome IV for health professionals and 2016 Patient Day on June 25 and June 26, 2016 respectively as highlighted on this blog on May 8, 2016. IBS Impact will continue to follow developments as entities in the FGIMD community update their materials, resources and websites to reflect the recent changes.

IBS Impact thanks all of the experts involved in Rome IV, who are constantly working to improve diagnosis, treatment, research and functional GI education for those of us who live with these conditions and the professionals who may provide care to us. With better tools and greater awareness, many more of us will experience increased quality of life in the long run.