Representative Himes of Connecticut Co-Sponsors HR 842 for Functional Gastrointestinal and Motility Disorders

September 27, 2013

UPDATE: 06/13/2015: HR 842 did not pass, but a similar bill, HR 2311, is currently in the House of Representatives for 2015-2016. Please click on the HR 2311 sub-category on the right sidebar of this blog to see the relevant posts.

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, Representative James (Jim) Himes  (D-CT-4) has recently signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Himes is serving his third term as a member of the House of Representatives. He represents Connecticut’s 4th district which encompasses parts of Fairfield and New Haven Counties in southwestern Connecticut, including Stamford, Greenwich, Bridgeport and Norwalk.  According to Representative Himes’ official House website, he has a record of supporting health care and veterans’ issues. 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.

If you are a constituent of Representative Himes, please take a few minutes to write or call him with your thanks for his support of HR 842 and the functional gastrointestinal and motility disorders community.

In officially supporting HR 842, Representative Himes, joins the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8), Representative Julia Brownley (D-CA-26), Representative Bobby Rush (D-IL-1),  Representative Gwen Moore (D-WI-5), Representative Ron Kind (D-WI-3), Representative Susan Davis (D-CA-53),  Representative Peter Welch (D-VT), Representative James McGovern (D-MA-2), Representative Gerald Connolly (D-VA-11), Representative Louise Slaughter (D-NY-25), Representative Bill Posey (R-FL-8), and Representative Ed Perlmutter (D-C0-7)  U.S. citizens residing in the districts of Representative  Himes’ colleagues listed here, please thank them as well.

According to the information on THOMAS, 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 842 and you have not contacted him or her recently to ask for his or her support, please see the previous post from March 2, 2013  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 2012 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 842 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 842.

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 842 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 113th,  the necessary number of sponsor/cosponsors must be reached by December 2014. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 842 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. 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 842 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


New York Times Column Raises Awareness But Also Reinforces Common Misconceptions of Functional Gastrointestinal Disorders

September 20, 2013

The New York Times features a regular column entitled “Think Like a Doctor” written by Lisa Sanders, MD. In it, the details of actual interesting or perplexing medical cases, with the patients’ identifying information removed, are presented in the online version of the newspaper. Readers, both medical professionals and laypeople, are then challenged to comment with their guesses of the correct diagnoses. The answers, plus commentary from Dr. Sanders and her sources, are eventually discussed in a followup column published online, and within a few days, in print.

On September 5, 2013, Dr. Sanders first offered the situation of a teenaged girl who was a competitive gymnast and who had been experiencing chronic gastrointestinal difficulties. On September 6, in “Think Like a Doctor: The Gymnast’s Big Belly Solved,” Dr. Sanders revealed that ultimately, the young woman was diagnosed with a combination of two functional gastrointestinal disorders, and had begun treatment, which appeared to have been helpful. The print version of this article appeared in the Times’ Sunday magazine section on September 8.

In some respects, it is pleasing to see functional gastrointestinal disorders as the topic of an article in The New York Times, which is a major mainstream news source with an enduring reach nationally and internationally, far beyond New York City where it is published.  The column correctly notes that functional gastrointestinal disorders collectively affect about 25% of the population and are involved in about 40% of GI-related visits to doctors, and that irritable bowel syndrome is one of the best known functional gastrointestinal disorders. There is some explanation of what a functional gastrointestinal disorder is. There is also a brief reference made to the Rome criteria, the current international standard by which functional gastrointestinal experts believe such disorders can be diagnosed with a high degree of accuracy. Also, Dr. Sanders acknowledges that, in general, functional gastrointestinal disorders are being regarded by the medical profession with more legitimacy than in the past. Discussion of reputable information on functional gastrointestinal disorders by such a high profile media source, would seem to be good for public awareness.

On the other hand, the young patient’s experiences on the path to correct diagnosis and treatment, as described by Dr. Sanders, as well as some of the posted comments from readers, also highlight common and continuing stereotypes among health professionals and the general public alike. In a blog post entitled, “Misunderstood Functional GI Disorders: Gymnast’s Case Shows Why We Must Accept FGIDs as a Chronic Disorder,” which he posted on September 17, 2013, Douglas Drossman, MD, FACG responds to the Times column. Dr. Drossman, who is the founder of Drossman Gastroenterology and the Drossman Center for the Education and Practice of Biopsychosocial Care, the founder and president of the Rome Foundation, and the founder and co-director emeritus of the University of North Carolina Center Functional GI and Motility Disorders, is one of the leading international authorities in functional gastrointestinal disorders. He has held numerous additional roles in the development of the field over four decades of his career as a clinician, researcher and academic.

Dr. Drossman outlines a few major concerns about the piece. Firstly, the gymnast is described as having seen numerous health care professionals in various specialties and undergone many tests and unsuccessful conventional and complementary treatments over a long course of debilitating symptoms. This is not an uncommon experience for people with functional gastrointestinal disorders, implying that they are rare or difficult diagnoses that need to be made by ruling out an extensive list of other potential disorders. This is counter to the symptom-based approach, involving limited tests in some specific situations, that experts like Dr. Drossman have long advocated. Secondly, when the majority of the young woman’s test results  showed nothing obvious, some health care professionals she encountered wrongly concluded that the problem was “in her head” rather than the two neurogastroenterological disorders it is. Thirdly, Dr. Drossman judges the published resolution of the patient’s diagnosis and treatment as a bit too much “poetic license,” implying a relatively quick cure. He cautions his readers to remember that while there are diagnoses and some treatments available, for the vast majority of us dealing with one or more functional gastrointestinal disorders, these are chronic conditions that must be managed on a recurring or constant basis. He expresses concern that the Times column may have the unintended effect of motivating readers to seek more unneeded tests that are usually un-revealing in functional gastrointestinal disorders, in the hope of as positive an outcome as portrayed for the young gymnast.

IBS Impact concurs with Dr. Drossman that these aspects of the column are problematic. Some iteration of the Rome criteria has been in existence for over two decades, making diagnosis by exclusion outdated. The assumption that we are all imagining our medical condition, or are causing it by psychological problems we may or may not actually have is a familiar frustration of many of us with IBS or other functional gastrointestinal disorders, who often have difficulty getting some supposedly well-experienced professionals to take our very real physical concerns seriously, just because functional gastrointestinal disorders are sometimes associated with or exacerbated by stress or other mental health diagnoses. The actual biopsychosocial interactions involved in IBS and related disorders are more complex, as noted in Dr. Drossman’s source links in his post. Finally, while the temptation for those of us with moderate to severe and/or constant symptoms to chase after anything or anyone with the remotest possibility of help at any cost is very real and very understandable, over years of disappointments, that proves neither realistic nor pragmatically and financially sustainable for many of us. Our hope for the future may become directed in different ways, such as the awareness and self-advocacy that IBS Impact encourages.

It’s impossible to know for sure the effects of the Times article on any given reader. It is hoped that, on balance, the positive aspects of the piece open eyes to functional gastrointestinal disorders more often than the negative aspects influence public perception. This post highlighting the article and Dr. Drossman’s response attempts to continue the conversation on functional gastrointestinal disorders in a public way, so that voices of affected people and professionals who have lived with or among FGIDs every day for months or years. can be directly heard, not merely filtered through a newspaper’s interpretation. We encourage readers and fellow bloggers to share their reactions.


UCLA Researchers Describe Post-Diverticulitis Irritable Bowel Syndrome (IBS-PDV)

September 10, 2013

Last week, news reached the gastrointestinal disorders community that scientists at UCLA, a major research center for IBS and related chronic pain conditions, have described a new subset of irritable bowel syndrome that they have named post-diverticulitis IBS or IBS-PDV. Diverticulosis is a common medical condition in which pouches form in the lining of colon. If those pouches become infected at any time, the disorder is known as diverticulitis. Historically, medical professionals have regarded diverticulitis as an acute illness that resolves quickly if properly treated.

However, according to the September 2, 2013 press release from UCLA, a research team including senior author Brennan Spiegel, MD, MSHS, FACG, spent two years studying the records of over 1000 patients at the West Los Angeles Veteran’s Affairs Medical Center, both those who had experienced diverticulitis and others, matched for age, sex and similar coexisting medical issues, if any. The researchers were then able to identify that the group who had had diverticulitis developed new IBS symptoms at a statistically higher rate than the control group. In addition, the rates of developing new anxiety or depression also increased. Dr. Spiegel is quoted in the above press release as stating that these findings are also suggestive of disruptions in the brain-gut axis as is known to occur in irritable bowel syndrome. This scientific evidence would appear to be enough to establish diverticulitis as one of many possible risk factors for later IBS. The full article,was published in the September 5, 2013 edition of the peer-reviewed journal Clinical Gastroenterology and Hepatology and is linked here.

Functional gastrointestinal and motility disorders researchers have long understood that gastrointestinal illnesses are a risk factor for the onset of post-infectious IBS (IBS-PI), including the aftermath of food poisoning or water contamination (See the August 5, 2011 post or “Yes You Can Get IBS or Functional Dyspepsia From Bad Drinking Water”, a May 2013 post by Olafur Palsson, PsyD, full professor and researcher at the University of North Carolina Center for Functional GI and Motility Disorders, on his own blog FGID Update.) It appears promising that the UCLA team has been able to refine that knowledge and confirm what some people with IBS have anecdotally reported regarding their personal experiences with first onset of IBS shortly after diverticulitis. It is hoped that in time, this insight will improve diagnosis and lead to better treatment options for this subset of people with IBS.


Clinical Trials: Several Open Studies for Irritable Bowel Syndrome (IBS) at UCLA

September 3, 2013

The Center for Neurobiology of Stress at UCLA, one of the major research centers involved in the research of IBS and other neurologically-based chronic pain conditions, has various clinical trials currently seeking volunteers, Criteria, compensation and time commitment or number of visits to UCLA vary depending on the study, but in general, they are open to men and women with IBS who are at least 18, with upper age limits ranging from 50-65. Some studies are also seeking healthy volunteers without IBS as control subjects. The list of studies can be seen here.

http://uclacns.org/patients/clinical-research/

Previous posts on open clinical trials for IBS can be found by clicking the clinical trials category in the blog archives on the upper right sidebar of this blog. We also have a page for IBS studies on the main IBS Impact site. The research and links pages and the July 26, 2011 post provide additional general resources.

We welcome researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies they wish to be considered for posting. Contact links for the founder/listowner and the webmaster can be found on the home page of the main IBS Impact website.

IBS Impact makes these study announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation in any study.  IBS Impact, as an entity, is not directly affiliated with any research sponsor and receives no funding from any source for studies or links we feature on this blog, the main site or social media.