10 Years and 11 IBS Awareness Months: Progress for the IBS Community Continues in 2018
by Nina Pan, IBS Impact founder and primary blogger for IBS Impact.
Five years ago, on April 24, 2013, I wrote a post for IBS Awareness Month that began with some reflections on my personal experiences with IBS, as well as my motivations for IBS Impact. At that time, I had been living with IBS for over five years, and 2013 marked my sixth April with IBS. I observed how for many of us, dealing with the numerous actual or potential effects on a day to day basis often makes it difficult to recognize when progress is being made, either for us as individuals, or for the IBS community as a whole. I stated that it is only with the passage of time that I had begun to realize how some things are indeed changing, albeit slowly, for the better. In the rest of the post, I pointed out numerous areas in IBS research, IBS treatment, understanding of the impact of IBS on quality of life, increased societal support and advocacy that had seen concrete, positive change in just the five years and six IBS Awareness Months I had personally experienced.
On April 10, 2014 , April 14, 2015, and April 29, 2016, and April 30, 2017, I reported in a similar vein, on progress for the IBS community in each respective years, Now, continuing the tradition during my own tenth year with IBS, just a week after my eleventh IBS Awareness Month, once again, I can observe many small steps forward in just a single year.
Progress in the science of IBS:
In the past year, the science of IBS has continued to expand in many areas. These include, but are not limited to, genetics, the pathophysiology of pain in post-infectious IBS, diet, cognitive behavioral therapy, the subtyping of IBS, and the prevalence and impact of people having more than one functional GI diagnoses. Particularly intriguing and important among published IBS research in the past year are a study mentioned on this blog on June 14, 2017 that links for the first time, IBS-related alterations in the gut microbiome to changes in the brain, and another, released just a month ago in April 2018, in which DNA variants on chromosome 9 in similar areas to those controlling the timing of puberty appear to be associated with some instances of IBS in women, though not in men.
These varied endeavors are taking place in or with the involvement of many scientists from many countries, and very often, volunteers with IBS from multiple countries per study as well. See other posts in the Research category of the blog sidebar, the IBS studies page of our main website or our Facebook or Twitter feeds to see the range of research news and clinical trial opportunities publicized over the most recent several months. The annual Digestive Disease Week international gastroenterology conference taking place shortly in early June traditionally provides even more state of the science research news each year.
In the fall of 2017, as posted on this blog on September 30, 2017, Macquarie University in Sydney, Australia and the County Durham and Darlington NHS Trust Contact Me-IBS pilot project in the United Kingdom each established registries for adults interested in the future possibility of becoming volunteers for functional GI/IBS research. If the NHS endeavor proves successful, the hope is to expand it to other locations in the United Kingdom. In each case, the goal is to facilitate communication and connection between researchers seeking willing people with IBS and those affected individuals who wish to do their part in contributing to the science of IBS.
Progress in the diagnosis and treatment of IBS:
Over the past three and a half years, this blog has often reported on the development of Rome IV criteria, the latest update to the international symptom-based diagnostic criteria for functional gastrointestinal disorders like IBS, which was officially published and presented to the international gastroenterology community in May 2016. This latest update reportedly involved over 100 experts from numerous countries. The Rome criteria, which are said by leading IBS researchers to be 98% accurate for most people with IBS symptoms, have been in existence in some form for 27 years, although research shows that many people with IBS and medical professionals who do not specialize in IBS remain unaware of this. Since the launch of Rome IV and continuing in the past year, the Rome Foundation members have made Rome IV print and online materials and webinars available to educate fellow health care professionals, including new outreach to primary care physicians and those from regions of the world historically underrepresented in the field. The Foundation also initiated mentoring to promising young functional GI researchers, and in March 2018, the print version of “Neuromodulators for Functional Gastrointestinal Disorders (Disorders of Gut−Brain Interaction): A Rome Foundation Working Team Report was published in the journal Gastroenterology to provide guidance on medication issues.
Several investigational medications and other non-pharmaceutical treatment options are always in various stages of the research pipeline in various parts of the world. In the summer of 2017, the National Institute for Health and Care Excellence (NICE) in the United Kingdom issued a Final Appraisal Determination, clearing the way for eluxadoline (brand name Truberzi in Europe, Viberzi in North America) to be available through the National Health Service for adults with IBS with diarrhea (IBS-D).
In January 2018, plecanatide, also known by the brand name Trulance, and previously available in the United States for use in chronic idiopathic constipation, was approved by the U.S. Food and Drug Administration (FDA) for treatment of irritable bowel syndrome with constipation (IBS-C). The FDA, in its regulatory role in early 2018, also solicited feedback from U.S. women using Lotronex (alosteron hydrochloride) and facilitated a workshop for scientists, organizations, patients and other stakeholders to discuss IBS-C in children.
According to various social media IBS professional sources, a centralized directory of GI psychologists and hypnotherapists is currently in development and due to be available very shortly.
Progress in understanding the impact of IBS and the barriers that remain:
In April 2018, in time for IBS Awareness Month, the Gastrointestinal Society in Canada released a 38 page 2018 IBS Global Impact Report, which is available for download on its website. This report was funded and facilitated by the international pharmaceutical company Allergan, and overseen by a steering committee composed of Maura Corsetti, MD of the University of Nottingham in the United Kingdom, Jan Tack, MD of the University of Leuven in Belgium, Gail Attara, President and CEO of the Gastrointestinal Society, and Michelle Sewell, IBS support group representative for the Gastrointestinal Society. The report incorporated peer-reviewed literature and surveys of people with IBS and families in numerous countries, including Canada, the United States, Australia and Spain over the last several years, and made recommendations accordingly. Some of this data was drawn from the Gastrointestinal Society’s own 2016 national survey across Canada of adults with IBS and parents of children with IBS. This Canadian survey was previously discussed on this blog on January 29, 2017 and January 26, 2016.
In early 2018, the International Foundation for Functional Gastrointestinal Disorders (IFFGD), in the U.S., which has transitioned to new leadership over the past year, has begun reaching out to some of its active FGID-affected members and families for “patient advisory” roles to gain feedback on IFFGD materials and programs. IBS Impact appreciates the effort to encourage more formal patient-organization collaboration.
Progress in societal supports for people with IBS:
The IBS Network in the United Kingdom continued its efforts this past year in its ongoing efforts to expand the availability of local, in-person self-help/support groups and group facilitator training for people with IBS in the UK. as originally reported by this blog on October 23, 2016 and January 13, 2017.
Monash University in Australia, developers of the low-FODMAP diet that is effective for reducing symptoms for many people with IBS, continues to test specific foods and product brands in several countries, in some cases, leading to revision of its previous recommendations. It also adds new countries as research and resources permit. Monash also has a low-FODMAP certification program, whereby food product manufacturers whose products have been tested by Monash as appropriate for the diet, may display an official certification symbol to alert consumers.In the last year, Monash launched a new, more comprehensive website that can be found at the link..
Progress in awareness and advocacy:
Over the past several months, the American Neurogastroenterology and Motility Society has initiated a series of several chats on IBS and functional GI disorders on Twitter or Facebook that are increasing awareness and education among patients, families and other professionals. One such Twitter chat was mentioned on this blog on December 19, 2017. and there have been several others. Click on the ANMS Facebook page link above to see two chats scheduled for this month. It is hoped that this effort will be ongoing.
The International Foundation for Functional Gastrointestinal Disorders has continued to shepherd the Functional GI and Motility Disorders Research Enhancement Act through its fourth attempt at passage by the U.S. House of Representatives, with the support of IBS Impact and other groups and individuals. After three previous attempts in the three previous Congresses, it was reintroduced in the the current 115th Congress under a different Act number, HR 1187, in March 2017 and has received bipartisan support from Representatives. In April 2018, HR 1187 gained two more co-sponsors from two more states, for a current total of one sponsor and nine co-sponsors from six states. See the Legislation category, HR 1187, HR 2311 HR 842 and HR 2239 subcategories in the right sidebar of this blog for more on this history of this important Act.
IFFGD has also been an ongoing advocate for veterans, who are disproportionately at risk for functional gastrointestinal disorders like IBS. IFFGD reported in the fall of 2017 that the the U.S. Department of Veteran’s Affairs had extended the time by which symptoms must be evident in order for veterans to be potentially eligible under this provision. Additionally, in April 2018, IFFGD reported that the federal government budget allocation through September 2018 includes the largest increase for digestive disease funding for several years. While of course, not all of this is earmarked specifically for functional GI disorders/IBS, since federal funding makes up a large proportion of overall research budgets, this is a positive development. Both of these news alerts can be found at this link.
Within a period of about two weeks in July 2017, leading GI psychologists/researchers Laurie Keefer, PhD, of Icahn Mount Sinai, Olafur Palsson, PsyD of the University of North Carolina, and Sarah Kinsinger, PsyD of Loyola University, all received mainstream media attention for their work in gut-directed hypnotherapy in the U.S. national NBC News, the local Chicago FOX News affiliate, and the national magazine, Women’s Health. As gut-directed hypnotherapy has decades of strong, international research evidence for helping at least 70% of people with IBS to reduce symptoms long term, but it is not well-known outside the functional GI professional community, let alone in the general public, it was a very positive step to see so much constructive coverage from major media outlets.
IBS Impact continues to make incremental updates to this blog and social media several times a month and to its main website several times a year,amassing archives that thus far cover almost seven years of quality, evidence-based material, resources and personal experiences of those who blog for us. The number of followers of this blog and our social media accounts continues to increase. Cumulatively, IBS Impact now reaches readers in over 140 different countries and territories on every continent of the globe.
These are just a handful of examples of progress for the IBS community in the past year. Cumulatively, there are many more. Obviously, we still have very far to go before all people with IBS have all the medical and social supports that we need for fully productive lives, with or without IBS, but we have come far as well. There are reasons for hope, especially if more of us do our part for self-advocacy and awareness in the years and IBS Awareness Months to come.