Digestive Disease Week 2019 Offering Travel Grants to Advocates with GI Disorders: Deadline is March 8, 2019

Digestive Disease Week (DDW) is a major international professional conference for clinicians, researchers, educators, trainees, and students in gastroenterology, hepatology, gastrointestinal surgery, endoscopy, and other related digestive disease sub-fields. It is traditionally held annually in May or June. DDW 2019 is scheduled for Saturday, May 18-Tuesday, May 21, 2019 in San Diego, California, USA. For the first time this year, the conference is offering patient advocates affected by gastrointestinal disorders the opportunity to attend with the help of up to U.S. $1000 for travel expenses, lodging, and registration costs. Up to 5 patient advocates will be selected for these grants.

The grants are intended for individuals who have an existing public role in educating and influencing peers with gastrointestinal disorders through blogs, other social media, online support sites, etc., and who will be able to use these means to explain state-of-the science research news presented at DDW 2019 to their peers in GI-disorder-affected communities.  Applicants must be willing to describe the reasons they wish to attend DDW 2019, give specific details of their experience covering medical conferences or programs, and their roles in the GI disorder community, including types of content, links to sites or social media accounts, number of followers/subscribers, etc., and explain how they plan to share information during DDW 2019. Any potential conflicts of interest should be disclosed and, obviously, contact information will need to be provided to allow DDW administrators to communicate with applicants and chosen grantees.

Applications opened on February 11, 2019 and will close on March 8, 2019 at 9:00 p.m. Eastern time. Please direct any questions to Aimee Frank at news@ddw.org or 301-941-2620.  The DDW 2019 press release regarding the grants and a link to the online application form can be found here.

https://ddw.org/news/press-releases/digestive-disease-week-2019-patient-advocate-travel-awards

Thank you to IFFGD for alerting IBS Impact to this new and unique opportunity. It is hoped that self-advocates in the IBS community will step forward to apply.

Free “Talking Gut” Podcasts Discuss IBS and Other GI Disorders

Some years ago,Dr, Jim Kantidakis, a psychologist and clinical hypnotherapist and founder of The Gut Centre in Melbourne and Sydney, Australia, a gastrointestinal health psychology center treating adults, adolescents and children with IBS, IBD, or other gastrointestinal disorders, began producing a collection of podcasts titled “Talking Gut.” As of August 2018, they have been available for free listening on iTunes.  As of this writing in January 2019, there are 14 episodes, ranging in length from half an hour to an hour and forty-five minutes, with most in the range of one hour. In each segment, Dr. Kantidakis conducts relatively casual, in-depth discussions with leading colleagues in Australia, the United States and the United Kingdom. Several of these podcasts specifically address IBS. Some of these professionals also share their personal experiences as individuals living with irritable bowel syndrome or inflammatory bowel disease. It is hoped that Dr. Kantidakis will continue this interesting and informative series into the future.

Just a handful of Dr. Kantidakis’ interviewees thus far are:

•Professor Peter Whorwell, MD of the University of Manchester in the United Kingdom, who was the first gastroenterologist to use gut-directed hypnotherapy to treat IBS about 35 years ago,

•Dr Douglas Drossman, MD, MACG, co-founder and retired co-director of the University of North Carolina Center for Functional GI and Motility Disorders in the United States, founder and president of the Rome Foundation, which developed international diagnostic criteria for IBS,  founder of the Drossman Center for the Education and Practice of Biopsychosocial Care and Drossman Gastroenterology, board member of the International Foundation for Gastrointestinal Disorders, along with many other pivotal roles in the field over his 40+ year career.

•Dr, Laurie Keefer, PhD, GI Health Psychologist and Director of Psychobehavioral Research at Icahn School of Medicine at Mount Sinai in New York City.

•Dr. Tiffany Taft, PhD, GI Health Psychologist at Oak Park Behavioral Medicine, as well as faculty and researcher at the Feinberg School of Medicine, Northwestern University in Chicago, Illinois. She authored a guest post on her research interest of stigma for IBS Impact, which appeared on this blog on April 15, 2013.

•Jaci Barrett, Accredited Practicing Dietician, Senior Lecturer and researcher in the gastroenterology unit of Monash University,Australia, which developed the low-FODMAP diet.

•Johannah Ruddy, M. Ed, current Executive Director of the Rome Foundation, whose account of her own struggle with post-infectious IBS was published in the December 2018 issue of the journal Gastroenterology.

As the length of most of the podcasts suggests, these are not quick sound bites designed for affected individuals to find answers to their introductory IBS or other GI questions.  However, they are very interesting “radio” for people with GI disorders and health care professionals who are further along in their knowledge and experience, and who are interested in hearing state of the science research information and often candid reflections on leading researchers’ professional and personal journeys, interest, dedication, and hopes for the future in furthering the field of GI health and the quality of life of those of us who live with challenging conditions like IBS and IBD. IBS Impact thanks all of the professionals above, as well as other participants in the series, for sharing their time, expertise, insights and commitment with audiences and looks forward to more.

IBS Impact’s Top 25 (or 29!) Countries and Top 20 Posts of 2018

For this first week of the New Year, IBS Impact is once again participating in the common December-January blogger tradition of highlighting popular posts and interesting blog statistics from the year just past.

This blog reached readers in 110 countries and territories during 2018. The cumulative total, which is 159 for the seven years WordPress has made country statistics available to individual blog owners. While the total number of hits in 2018 was a decrease from 2016 and 2017, it was an increase over all of the annual totals for each year from 2011-2015, despite fewer new posts published this past year than in earlier years.

While, as usual, the top 5 countries this year are ones where English is an official or major secondary language, total blog hits span every continent, underscoring that IBS is a global problem, not the common, inaccurate stereotype of it as a nuisance disorder caused by overindulgent North American diets and lifestyles. A list of the top 29– four separate ties between two countries this year– better reflects the diversity of countries of origin represented, which appears to change somewhat every year. It is hoped that the vast majority are legitimate visits, even from those who might not have been searching specifically for information about IBS, and not simply potential spammers. In order, the countries are:

1.  United States

2. United Kingdom

3. Canada

4. Australia

5. India

6. Japan

7. Italy

8. Indonesia

9. Taiwan

10. Turkey

11. Philippines

12. Sweden

13. Germany

14. Netherlands

15. Egypt

16. Belgium and Pakistan (tie)

17. Thailand

18. Vietnam

19. Malaysia and Saudi Arabia (tie)

20. New Zealand

21. South Korea

22. Ireland and Spain (tie)

23. Mexico

24. Poland and Portugal (tie)

25. Finland

Below are the top 20 individual posts that received the most hits during 2018. The #1 post, on the Rome IV criteria, was published in early June 2016 and quickly grabbed the top spot by very wide margins for 2016-2017, underscoring its importance to both people with IBS and health care professionals in the gastrointestinal disorders community. Its position at the top of the list continued throughout 2018. Blog stats indicated a wide range of referring sites from social media to leading medical research centers and Japanese Wikipedia. It is heartening to know that crucial information about these highly accurate international criteria, in existence in some form for 28 years but not well known outside the functional gastrointestinal/gut-brain disorders professional community, is being disseminated daily, in part by this blog

In a surprise, a post published in October 2017 about the then-recent death of celebrity fashion designer Mychael Knight, apparently from a gastrointestinal disorder he wrongly believed to be and that was widely reported as IBS, gained momentum in 2018, amassing frequent hits most weeks. The increase in hits has been large enough for it to climb from #15 in 2017 to #2 for 2018. IBS Impact is pleased that this blog has been able to provide clear explanations in layperson’s language, as well as numerous evidence-based links, to correct the inaccurate reporting that remains online from many media sources stating that Mr. Knight died of IBS. While his passing at such a young age after apparent health struggles is extremely unfortunate, irritable bowel syndrome (IBS) is never a life-threatening condition, and newly diagnosed individuals, their loved ones, and the general public deserve to be reassured of that.

The #2 post for 2016-2017, on functional gastrointestinal disorders like IBS being classified as service-connected disabilities for U.S. military veterans, was originally published in 2011, soon after the inception of this blog, and held the top spot consistently every year from 2011-2015 and the first half of 2016 until the introduction of Rome IV that year, dropping to #2 for 2016-2017. In 2018, it came in at #5, This suggests that while the issue has received less attention in the past year, it is still a concern to many, and should not be forgotten.

Like the ones mentioned above, most of the posts in 2018’s top 20 list were first published in 2011 through 2017. However, they continue to attract attention because they address topics that are of ongoing interest to people with IBS. Perhaps longtime readers can refresh their memories and newer readers will discover something interesting and useful.

There are also several posts from 2018 on this top 20 list that readers may have missed when they were first published in recent months. If so, take a look.

Please note that since this blog has been in continuous existence for 8 1/2 years, some links embedded in posts that are several years old, while valid at the time of publication, have inevitably become out of date. You may find the updated or a similar current resource on our main website. If not, feel free to leave a comment, and IBS Impact or other readers may be able to assist. In order, the posts are:

1. New Rome IV Diagnostic Criteria for Irritable Bowel Syndrome (IBS) Unveiled May 2016, June 9, 2016

2.Designer Mychael Knight Could NOT Have Died from Irritable Bowel Syndrome (IBS), October 23, 2017

3. Education Laws and Resources for Students with Irritable Bowel Syndrome (IBS), August 27, 2013

4. Irritable Bowel Syndrome (IBS) and a Debate on “Can’t Wait” Cards,  November 25, 2012  Please note that the blog originally linked in the above post as a basis for discussion no longer exists on WordPress.com. However, the ideas raised and the invitation by IBS Impact for readers and the IBS community to continue to discuss related concerns are still valid.

5. Functional Gastrointestinal Disorders/IBS Considered Presumptive Service-Connected Disabilities for U.S. Gulf War Veterans,  August 12, 2011

6. The Americans with Disabilities Act (ADA) and Irritable Bowel Syndrome (IBS), July 30, 2012

7. Restroom Access Act (Ally’s Law) Updates in Maryland and Maine, May 10, 2013

8. Irritable Bowel Syndrome (IBS) and the Myth of a Cure, June 19, 2014

9. IBS and Extraintestinal (non-GI) Symptoms,  September 6, 2011

10. Resources for People with Irritable Bowel Syndrome (IBS) in Australia 2017, February 16, 2017

11. More Things to Say and Not to Say to People with IBS, February 27, 2013

12. 15 Common Misconceptions That Shouldn’t Exist About Irritable Bowel Syndrome (IBS), November 8, 2013

13. Public Restroom Access and Irritable Bowel Syndrome (IBS),  February 21, 2011

14. Irritable Bowel Syndrome (IBS) is Not a Diagnosis of Exclusion, October 9, 2011

15. Massachusetts Enacts Restroom Access Act,  August 20, 2012

16. April is Irritable Bowel Syndrome (IBS) Awareness Month 2018, April 1, 2018

17. U.S. Food and Drug Administration (FDA) Asks Manufacturers to Limit Quantity of Loperamide (Imodium) in Packages, February 7,  2018

18. International Foundation for Functional Gastrointestinal Disorders (IFFGD) Seeks Volunteers for New Patient Panel, June 18 2018

19. 10 Years and 11 IBS Awareness Months: Progress for the IBS Community Continues, May 8, 2018

20. Guest Post for IBS Awareness Month: Looking Back and Paying It Forward: A Life With IBS, April 29, 2018

This blog was begun in July 2011, a few months after the launch of the main IBS Impact website, and a bit over a year after the inception of IBS Impact itself. It is intended as a supplement to the many resources on our main site, one that can be updated relatively quickly with time-sensitive news, advocacy and clinical trial opportunities, as well as providing well-researched, scientifically reputable information on IBS and commentary on broader issues affecting the IBS community that may not be widely discussed on other sites. It is meant to be useful to a broad readership: people with IBS and related conditions, both those who may have lived with IBS for some time and those with recent onset or who are new to IBS sites online, family members and friends, health care and human service professionals who may interact with us, and the general public. We are pleased that it continues to fulfill this role.

IBS Impact wishes everyone a happy, healthy, prosperous and productive New Year and looks forward in 2019 to advances in awareness, advocacy, research, treatment and community support systems that benefit the worldwide IBS community.

Updates to IBS Impact.com Main Website, December 2018

IBS Impact has recently completed the latest round of updates to many pages of our main website,  IBS Impact.com,

The advocacy page,  IBS page, research page, IBS studies page, resources page ,and links page, plus the news updates in the blue and white footers of every page all have additions or updates of content or links, or deletions of outdated links since the last update in September of this year. Some technical changes have also been made to enhance site security and stability as traffic increases.

Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or Twitter feeds (links found on the lower right sidebar of this blog and in the light blue footer sections below each page of the main site).  Each has slightly different information on an ongoing basis. Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material and links. The current site reflects resources in six English-speaking countries which are among the top sources of hits to the site and this blog: the United States, Canada, the United Kingdom, Ireland, Australia and New Zealand. Several additional countries are occasionally represented on various pages.

Because of the redesign and transfer of the site to new hosting twice in 2015 and 2016, some links embedded in older posts on this blog or search engine results relating to IBS Impact.com may result in error messages, but you should still reach the site itself. If so, please use the navigation links at the top of the site to reach the desired subpage.  No information that is still currently useful has been removed from the site, although in some cases, the location has changed. Only outdated details and occasional defunct links for which there is no replacement available at this time have been deleted. The date of last update is indicated at the bottom of subpages that change periodically.

Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and worldwide public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.

IBS Impact as an entity, is not directly affiliated with any other organization, site, or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations,  and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide.

Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable evidence-based organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered. A contact form  can be found on the main site, or comments can be left on this blog.  Thank you to all of our readers and social media followers for your interest and participation.

GERD Awareness Week: November 18-24, 2018

This week is GERD Awareness Week. Gastroesophageal reflux disease, like IBS, falls under the broad category of functional gastrointestinal and motility disorders, and many people with IBS also have GERD. According to former VeryWell.com IBS Guide Barbara Bradley Bolen, PhD,some studies show that up to 81% of people with IBS report some symptoms of GERD and vice versa, but that among those with actual diagnoses, the overlap rate ranges from about one-quarter to one-third. GERD occurs when the lower esophageal sphincter, the valve connecting the esophagus to the stomach, fails to close completely and consistently when needed, and stomach acids and digested food inappropriately back up into the esophagus on a recurring basis. GERD is estimated to affect at least 20% of American adults, both men and women. GERD also commonly affects children of all ages, including infants. A wide variety of lifestyle factors, medical conditions and medication side effects are thought to be possible factors in causing or exacerbating GERD.

Symptoms vary from person to person and are not restricted to heartburn. Some people may not have noticeable symptoms at all until they experience complications. Some other possible symptoms of GERD are: belching, coughing, hoarseness, difficulty or pain in swallowing, excessive saliva, the sensation of food sticking in the esophagus, chronically sore or irritated throat, laryngitis, inflammation of the gums, erosion of tooth enamel, bitter taste in the mouth, and bad breath. Chest pain may also be a symptom of GERD, but should receive immediate medical attention to rule out the possibility of cardiac problems or other serious conditions. Other possible symptoms of GERD occurring more than once a week or the need to use non-prescription heartburn/reflux medications for more than two weeks without resolution should be discussed with a doctor

Relative to other functional gastrointestinal and motility disorders, GERD is generally considered by physicians and many affected people to be quite treatable by a variety of lifestyle and diet modifications, prescription medications and/or surgery. Many people have mild GERD and, with appropriate medical care, are at low risk of serious complications, but untreated GERD can lead to inflammation, erosion or narrowing of the esophagus or in a small percentage of cases, Barrett’s esophagus, cell changes that heighten the risk of esophageal cancer. According to IFFGD publication #802 by Carlo DiLorenzo, M.D. of Children’s Hospital of Columbus and Ohio State University, Dr. Mark Glassman, MD, now of Boston Children’s Physicians in Connecticut and New York, and Paul Hyman, M.D. of Children’s Hospital in New Orleans, Louisiana, some children with GERD and other conditions such as asthma, cystic fibrosis, abnormal lung development due to premature birth, muscle or nerve disorders affecting swallowing, or esophageal dysplasia, are at risk of GERD complicating those conditions.

Please see the following links for further information and resources and the original source for Drs. DiLorenzo, Glassman and Hyman’s work mentioned above.  IFFGD also offers downloadable GERD, IBS and functional GI disorder awareness posters for anyone to hang or distribute in his or her own community, that are accessible from the IFFGD links posted here.

 GERD Awareness Week section from the IFFGD About GERD website

Pediatric GERD section from the IFFGD About Kids GI website

Medline Plus page on GERD  (subunit of the U.S. National Institutes of Health)

In addition to encouraging accurate awareness of irritable bowel syndrome, IBS Impact encourages awareness of related conditions that are known to often overlap with IBS, as improvement in symptom management, treatment options, public awareness and social resources may have overlapping positive effects that improve quality of life for some people with IBS.

Veterans with IBS and Functional Gastrointestinal Disorders 2018

Today, November 11, is Veterans Day in the U.S. This year, as the date falls on a Sunday, it will be observed on Monday, November 12 as a federal holiday. It is also the traditional day on which many entities highlight veterans’ issues. U.S. veterans and current military service members who have been deployed in the Persian Gulf/Southwest Asia and Afghanistan regions at any time since 1990 have been shown by multiple studies to be at even higher risk of IBS and other functional GI disorders than the general population. Conservative estimates put the incidence of functional GI disorders in the general population as 25%, most commonly irritable bowel syndrome. For veterans and military service members of the Persian Gulf/Southwest Asia/Afghanistan era, the estimate may reach as high as 40%. This appears to be in part because of the high incidence of known functional GI risk factors during active duty, such as severe stress or trauma and/or food or water contamination that results in post-infectious IBS  (IBS-PI) or other post-infectious functional GI and motility disorders.

Here is IBS Impact’s August 12, 2011 post on the recognition seven years ago by the U.S. Department of Veterans Affairs of irritable bowel syndrome and functional gastrointestinal disorders as presumptive service connected disabilities for Gulf War veterans. Service in Afghanistan was not originally included in the 2011 regulations, but has since been added.

IFFGD has done considerable work in the past several years in advocating for federal funding and other legislative needs specific to veterans, conducting outreach to service members and veterans and encouraging those affected by functional GI and motility disorders to participate in veteran-specific self-advocacy efforts. Since fiscal year 2012, functional GI disorders have been included in the Department of Defense Gulf War Illness Research Program, which is part of the Congressionally Directed Medical Research Program. However, advocacy from the veteran community and supporters must occur on an ongoing basis for funding to be continued each fiscal year. Interest in veteran issues has been one reason for Congressional support of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017 currently in the House of Representatives. This legislation is aimed toward improving the lives of affected veterans and civilians alike, and must continue to build.

As this blog reported on January 20, 2014, the depth of need for further awareness, services, support, and research in the veteran community is not necessarily well known even within the Department of Defense or other military entities, the media or the general public. The post linked in the second paragraph of this post about the recognition of IBS and other functional GI disorders as presumptive service-connected disabilities, more than seven years after original publication, has continued to receive consistent hits from readers on most days. By an extremely wide margin, from the inception of this blog in mid-2011 through 2015, it was the #1 most read individual post, of what are now 300 cumulative posts on this blog. It was also the #1 most read post for each individual year.  Not until the release of the Rome IV international diagnostic criteria in late May 2016, did it drop to #2 on the all-time and 2016 and 2017 lists. Thus far in 2018, it is #4 post. Clearly, a very strong need exists for information and resources on this topic. It is hoped that given the relatively higher impact of functional GI disorders among veterans and service members, and their relatively higher profile as a constituent group, any advances on behalf of the affected veterans and service members will eventually carry over to people with functional GI disorders in general.

IBS Impact encourages veterans, service members and families in the IBS and functional GI community, as well as those who support them, to familiarize themselves with the issues and resources, and to consider participating in self-advocacy activities. We look forward to feedback from readers as to how IBS Impact may be able to support such efforts further.

Congresswoman Eleanor Holmes Norton Co-Sponsors HR 1187 for Functional GI Research

According to IFFGD and the official Congressional legislative database Congress.gov, Congresswoman Eleanor Holmes Norton (D-DC-at large) is the latest member of the House of Representatives to sign on in October 2018 as a co-sponsor of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Congresswoman Norton is serving her fourteenth term representing, Washington, the District of Columbia, as its non-voting delegate at large. According to Congresswoman Norton’s official House website, she currently is a member of several caucuses and committees related to health, specific disabilities, women and veterans. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk of functional gastrointestinal disorders like IBS, which are already very common in the general population. In many countries, including the U.S., a higher proportion of women than men are diagnosed with IBS. IBS Impact thanks Congresswoman Norton for adding her support for FGIMDs.

In officially supporting HR 1187, Congresswoman Norton joins Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, and co-sponsors, Representative Mark Pocan (D-WI-2), Representative Eliot Engel (D-NY-16), Representative Dave Loebsack (D-IA-2),  Representative Alcee Hastings (D-FL-20), Representative Tom Suozzi (D-NY-3), Representative Ron Kind (D-WI-3),  Representative Gwen Moore (D-WI-4),  Representative Andre Carson (D-IN-7), Representative Donald Payne, Jr. (D-NJ-10), Representative Zoe Lofgren (D-CA-19), Representative John Faso (R-NY-19), and Representative David Price (D-NC-4), Representative Gerald (Gerry) Connolly (D-VA-11), Representative Ed Perlmutter (D-CO-7), and Representative Brian Fitzpatrick (R-PA-8). If you are a constituent of any of these legislators, please take a few minutes in connection with Virtual Advocacy Day to call, write, or contact him or her on social media to thank him or her for his support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 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 2016 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 1187 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 1187.

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 1187 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 115th, the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 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, HR 842 in 2014 and HR 2311 in 2016. 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.

 

U.S. Food and Drug Administration Seeks Public Comment on Prucalopride for Chronic Idiopathic Constipation (CIC) and Tegaserod for Irritable Bowel Syndrome with Constipation (IBS-C) by October 16, 2018

UPDATE:  10/19/2018: The Gastrointestinal Drugs Advisory Committee voted to recommend approval of both of the medications under consideration below. This does not mean that the medications have the full approval of the FDA and can be made available yet. However, it is a positive step forward in the process toward full approval.

 

On Wednesday, October 17, 2018, from 8:00 a.m. to 5:00 p.m at the Bethesda Marriott in Bethesda, Maryland, the U.S. Food and Drug Administration (FDA) he Food and Drug will hold a public meeting of the Gastrointestinal Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee to consider the safety and effectiveness of two medications, prucalopride, intended for treatment of Chronic Idiopathic Constipation (CIC), and tegaserod, intended for treatment of irritable bowel syndrome with constipation (IBS-C). Manufacturers are seeking FDA approval to make both available in the United States.

Prucalopride, a selective serotonin type 4 receptor agonist, has been in use for several years in Canada under the brand name Restoran and in various European countries as Resolor. Tegaserod (brand name Zelnorm), a selective serotonin type 4 receptor partial agonist was available  in the United States and Canada from 2002-2007, when the FDA and  Health Canada, each asked for its withdrawal due to many reports of serious side effects, including unstable angina and strokes. Since then, the FDA has only made Zelnorm available on a rare emergency basis after a physician application for specific individual patients. The current FDA application, if successful, would return Zelnorm to market in the U.S. only for women without risk factors for cardiovascular complications.

The Committee is seeking comments from the gastrointestinal disorders community before midnight Eastern time on October 16. 2018. Electronic comments may be submitted here for tegaserod (Zelnorm), with the understanding that all identifying and health information included in comments will be publicly accessible on the Internet. Those wishing to comment confidentially are asked to submit two identical copies paper documents with a cover sheet stating, “This document contains confidential information.” by mail, courier or hand delivery to : Dockets Management Staff (HFA-305), Food and Drug Administration, 5630 Fishers Lane, Rm. 1061, Rockville, MD 20852. The FDA will add all information not specifically indicated as confidential to the public docket.  All comments for Zelnorm must be marked with the following docket: Docket No. FDA-2018-N-3223 for “Joint Meeting of the Gastrointestinal Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee; Notice of Meeting; Establishment of a Public Docket; Request for Comments.”

The instructions for comments on prucalopride are similar with a different electronic link here and a different identifying docket number that must be placed on comments, Docket No. FDA-2018-N-0055 for “Gastrointestinal Drugs Advisory Committee; Notice of Meeting; Establishment of a Public Docket; Request for Comments.”

IBS Impact encourages U.S. readers to familiarize themselves with the above medications so that they can make informed comments. This is an opportunity to communicate the needs of the gastrointestinal disorders community directly to a committee of the FDA that can make recommendations before or against approval.  There are only a few days remaining before the deadline, so act now.

 

Updates to IBS Impact.com Main Website, September 2018

IBS Impact has recently completed the latest round of updates to many pages of our main website,  IBS Impact.com,

The home page, advocacy page, research page, IBS studies page, and links page, plus the news updates in the blue and white footers of every page all have additions or updates of content or links, or deletions of outdated links in the last few months.

Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or Twitter feeds (links found on the lower right sidebar of this blog and in the light blue footer sections below each page of the main site).  Each has slightly different information on an ongoing basis. Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material and links. The current site reflects resources in six English-speaking countries which are among the top sources of hits to the site and this blog: the United States, Canada, the United Kingdom, Ireland, Australia and New Zealand. Several additional countries are occasionally represented on various pages.

Because of the redesign and transfer of the site to new hosting twice in 2015 and 2016, some links embedded in older posts on this blog or search engine results relating to IBS Impact.com may result in error messages, but you should still reach the site itself. If so, please use the navigation links at the top of the site to reach the desired subpage.  No information that is still currently useful has been removed from the site, although in some cases, the location has changed. Only outdated details and occasional defunct links for which there is no replacement available at this time have been deleted. The date of last update is indicated at the bottom of subpages that change periodically.

Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and worldwide public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.

IBS Impact as an entity, is not directly affiliated with any other organization, site, or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations,  and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide.

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IFFGD Virtual Advocacy Day, September 26, 2018, Needs U.S Citizens to Advocate for Functional GI Research

The International Foundation for Functional Gastrointestinal Disorders (IFFGD) has announced that Virtual Advocacy Day 2018 is coming soon on September 26, 2018. Virtual Advocacy Day is IFFGD’s annual day on which it encourages U.S. citizens to contact their members of the federal House of Representatives in support of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act. (HR 1187)

For this year, IFFGD is trying an additional strategy and asking for adults and children with functional gastrointestinal and motility disorders, families, friends, and other supporters to write letters and draw pictures about the experiences of living with FGIMDs and the need to support FGIMD research through the Act. Please send them by Friday, September 21, 2018 to IFFGD’s Washington, DC liaison, Peter Herzog at herzog@hmcw.org or mail them to 507 Capitol Court NE, Suite 200, Washington DC 20002. Each letter or picture will be hand-delivered to the senders’ individual Member of the House of Representatives to ask for co-sponsorship of HR 1187 in time for Virtual Advocacy Day on September 26. Self-advocates and family members and friends are also encouraged to follow up with a phone call to the Representative on that day. See IFFGD’s Virtual Advocacy Day 2018 page for more information and sample letters and phone calls. If your Representative already supports HR 1187– see a list later in this post– then please consider writing and/or calling to say thank you.

According to IFFGD and the official Congressional legislative database Congress.gov, Representative Brian Fitzpatrick (R-PA-8) is the latest representative to sign on in early September 2018 as a co-sponsor of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Fitzpatrick is serving his first term as a member of the House of Representatives. He represents Pennsylvania’s 8th district which encompasses Bucks County and parts of Montgomery Country. According to Representative Fitzpatrick’s official House website, he currently is a member of several caucuses for other health conditions and disabilities.IBS Impact thanks Representative Fitzpatrick for adding his support for FGIMDs.

In officially supporting HR 1187, Representative Fitzpatrick joins Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, and co-sponsors, Representative Mark Pocan (D-WI-2), Representative Eliot Engel (D-NY-16), Representative Dave Loebsack (D-IA-2),  Representative Alcee Hastings (D-FL-20), Representative Tom Suozzi (D-NY-3), Representative Ron Kind (D-WI-3),  Representative Gwen Moore (D-WI-4),  Representative Andre Carson (D-IN-7), Representative Donald Payne, Jr. (D-NJ-10), Representative Zoe Lofgren (D-CA-19), Representative John Faso (R-NY-19), and Representative David Price (D-NC-4), Representative Gerald (Gerry) Connolly (D-VA-11), and Representative Ed Perlmutter (D-CO-7) If you are a constituent of any of these legislators, please take a few minutes in connection with Virtual Advocacy Day to call, write, or contact him or her on social media to thank him or her for his support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 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 2016 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 1187 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 1187.

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 1187 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 115th, the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 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, HR 842 in 2014 and HR 2311 in 2016. 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.

As irritable bowel syndrome (IBS), is the most common functional gastrointestinal and motility disorder, IBS Impact strongly encourages readers to join with self-advocates with other FGIMDs for Virtual Advocacy Day. Amplifying our voices as FGIMD-affected people, along with others in similar situations, can increase awareness of HR 1187 and our needs to the public and to Congressional members with the power to help our community.