IBS Impact’s Top 25 (or 33) Countries and Top 20 Posts of 2019

For 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 106 countries and territories during 2019. The cumulative total is 165 for the eight years WordPress has made country statistics available to individual blog owners. While, predictably for an English-language site, 8 of the top 10 countries this year are ones where English is one of the official languages, 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 33– six different ties among two to four countries each 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. Australia

3. United Kingdom

4. Canada

5. India

6. Japan

7. Ireland

8. Sweden

9. South Africa

10. New Zealand

11. Germany

12. Spain, Netherlands and Pakistan (tie)

14. Ukraine

15. Malaysia and Italy (tie)

16.  Philippines and Hungary (tie)

17. Israel

18. Austria

19. Norway

20. Belgium

21. Poland, France, and United Arab Emirates (tie)

22. Ireland and Spain (tie)

23. Hong Kong

24. Singapore and Mexico (tie)

25. Greece, Iceland, Portugal, and Turkey (tie)

Below are the top 20 individual posts that received the most hits during 2019. 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 astonishing momentum in 2018 and 2019, 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  and to grab the #1 spot by a large margin for 2019. 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 2019 was April’s guest post from Australia in which Joanna Baker, a longtime person with IBS who is also a registered nurse and accredited practising dietitian specializing in low FODMAP and food intolerances, candidly shared her own experiences with IBS from these multiple vantage points.  We thank her again for her generously sharing her time and insights.

Most of the posts in 2019’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 2019 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 9 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. Designer Mychael Knight Could NOT Have Died from Irritable Bowel Syndrome (IBS), October 23, 2017

2. Guest Post From Australia: A Personal and Professional Journey, April 13, 2019

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

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

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

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

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

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

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

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

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

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

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

16. Representative Loebsack of Iowa Co-Sponsors the Functional Gastrointestinal and Motility Disorders Research Enhancement Act  (HR3396),  September 30, 2019

17. 15 Common Misconceptions That Shouldn’t Exist About Irritable Bowel Syndrome (IBS), November 8, 2013

18.April is Irritable Bowel Syndrome (IBS) Awareness Month 2019, April 1, 2019

19. Free “Talking Gut Podcasts” Discuss IBS and Other GI Disorders, January 21, 2019

20: Book Review:The Gut Solution for Parents with Children Who Have Recurrent Abdominal Pain and Irritable Bowel Syndrome, June 27, 2014

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 2020 to advances in awareness, advocacy, research, treatment and community support systems that benefit the worldwide IBS community.

ProPublica Reporter Seeking to Interview People Taking Linzess (Linaclotide) for IBS-C, November 2019

IBS Impact is posting this opportunity on behalf of the journalist. If you are interested, please contact her directly at the email or phone number below. ProPublica is a reputable, bipartisan online investigative journalism website within the U.S.

“Have you been prescribed Linzess? If so I’d like to talk to you! I’m a reporter with ProPublica and am working on a story about how drug companies promote their products to doctors. You can see our work at propublica.org, particularly our Dollars for Docs tool. I’m hoping to talk to as many patients as possible and am interested in hearing about all kinds of experiences. If you, or anyone you know, has been prescribed Linzess, I’d be interested in hearing from you. You can reach out to me at hannah.fresques@propublica.org or signal/call 917-512-0246. (That number can’t get texts, just Signal.) I won’t use your name without your permission. Happy to talk about this!”

 

Veterans with IBS and Functional Gastrointestinal Disorders 2019

Today, November 11, is Veterans Day in the U.S. ,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 2019 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 eight years after original publication, has continued to receive consistent hits from readers on many 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 over 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, still remaining #2 of all time through 2018 and thus far in 2019, and in the top 9 for the last two years. 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.

Rep. Vela of Texas and Rep. Lee of Nevada Co-Sponsor Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 3396)

According to IFFGD and the official Congressional legislative database Congress.gov, at the end of October 2019, Representative Filemon Vela (D-TX-34) and Representative Susie Lee (D-NV-3)  have added their support as a co-sponsors for HR 3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019. IBS Impact thanks them for taking the time to learn about the needs of the  functional GI/IBS community.

Representative Vela is serving his fourth term in the House of Representatives. His district, the 34th Congressional District of Texas encompasses all or part of 11 counties from the Texas-Mexico border to more than 250 miles north, including Bee, Cameron, DeWitt, Goliad, Gonzales, Hildalgo, Jim Wells, Kenedy, Kleberg, San Patricio and Willacy Counties. According to his official House website, Representative Vela is currently a member of the House Committee on Armed Services, and also has a strong record of supporting 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 of functional gastrointestinal disorders like IBS, which are already very common in the general population.

Representative Lee is serving her first term in the House of Representatives. Her district, the 3nd Congressional District of Nevada, includes part of Las Vegas and south, including Henderson and portions of unincorporated Clark County. She is currently a member of the House Committee on Veterans Affairs. Representative Lee’s official House website is at this link.

In officially supporting HR 3396, Representatives Vela and Lee join Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, as well as co-sponsors, Representative Gwen Moore (D-WI-4), Representative Brian Fitzpatrick (R-PA-8), Representative David Price (D-NC-4), Representative Mark Pocan (D-WI-2), Representative Ed Perlmutter (D-CO-7), Representative Ron Kind (D-WI-3), Representative Joe Neguse (D-CO-2), Representative Katie Porter (D-CA-45), Representative Thomas Massie (R-KY-4), Representative Max Rose (D-NY-11), Representative Paul Gosar (D-AZ-4), and Representative Dave Loebsack (D-IA-2).  IBS Impact appreciates the support of all these Members of Congress. If you are a constituent of any of these legislators, please take a few minutes 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 3396, please see the previous post from July 18, 2019 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 2018 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 3396 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 3396.

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 3396 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 116th, the necessary number of sponsor/cosponsors must be reached by December 2020. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 3396 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, HR 2311 in 2016, and HR 1187 in 2018. 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.

 

Updates to IBS Impact.com Main Website, October 2019

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

The advocacy page, research page, IBS studies page, resources page, family and friends page,ibs and children page, and links page, several articles on subpages, 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.

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.

Rep. Loebsack of Iowa Co-Sponsors Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 3396)

According to IFFGD and the official Congressional legislative database Congress.gov, in the last week, Representative Dave Loebsack (D-IA-2)  has added his support as a co-sponsor for HR 3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019. This is the third time in different Congresses that he has supported versions of the Act, and IBS Impact thanks him for his ongoing support of the functional GI/IBS community.

Representative Loebsack is serving his seventh term in the House of Representatives. His district, the 2nd Congressional District of Iowa encompasses most of the southeastern region of the state including  the cities of Davenport, Iowa City, Clinton  and Ottumwa, among others. According to his official House website, Representative Loebsack is currently a member of the House Energy and Commerce Committee, which includes the Subcommittee on Health. He has immediate family members currently serving in the military, previously served on the House Committee on Armed Services, and also has a strong record of supporting 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 of functional gastrointestinal disorders like IBS, which are already very common in the general population.

In officially supporting HR 3396,  Representative Loebsack joins Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, as well as co-sponsors, Representative Gwen Moore (D-WI-4), Representative Brian Fitzpatrick (R-PA-8), Representative David Price (D-NC-4), Representative Mark Pocan (D-WI-2), Representative Ed Perlmutter (D-CO-7), Representative Ron Kind (D-WI-3), Representative Joe Neguse (D-CO-2), Representative Katie Porter (D-CA-45), Representative Thomas Massie (R-KY-4), Representative Max Rose (D-NY-11), and Representative Paul Gosar (D-AZ-4) IBS Impact appreciates the support of all these Members of Congress. If you are a constituent of any of these legislators, please take a few minutes 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 3396, please see the previous post from July 18, 2019 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 2018 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 3396 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 3396.

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 3396 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 116th, the necessary number of sponsor/cosponsors must be reached by December 2020. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 3396 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, HR 2311 in 2016, and HR 1187 in 2018. 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.

 

Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 3396) Gains Bipartisan Support of 4 New Co-Sponsors From 4 New States

According to IFFGD and the official Congressional legislative database Congress.gov, so far in September 2019, four members of the U.S House of Representatives have added their support as co-sponsors for HR 3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019. They represent both political parties and four different states new to the sponsor/cosponsor list for the Act during the current Congress. They are Representative Katie Porter (D-CA-45), Representative Thomas Massie (R-KY-4), Representative Max Rose (D-NY-11) and Representative Paul Gosar (R-AZ). All of them are supporting the Act for the first time and IBS Impact thanks them for taking the time to learn about the needs of the FGIMD community.

Representative Porter is serving her first term in Congress representing the 45th District of California, which encompasses much of Orange County. According to Representative Porter’s official House website, she currently is a member of several caucuses and committees related to health and specific disabilities, and she has a particular interest in women’s issues. In many countries, including the U.S, a higher proportion of women than men are diagnosed with IBS.

Representative Massie is serving his fourth term in Congress representing the 4th District of Kentucky, which encompasses all or part of 20 countries across the northern part of the state. According to Representative Massie’s official House website, he has an interest in and record of supporting military personnel 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.

Representative Rose is serving his first term in Congress representing the 11th District of New York, which encompasses the borough of Staten Island and the southern portion of the borough of Brooklyn in New York City. According to his official House website, Representative Rose is a former not-for-profit health care executive, decorated U.S. Army veteran who served in combat in Afghanistan, and a current member of the National Guard. He is a member of the House Committee on Veterans Affairs and the Subcommittee on Health and many health and veteran-related caucuses.

Representative Paul Gosar is serving his fifth term in Congress representing the 4th district of Arizona, which encompasses the northwestern and western parts of the state outside of Phoenix. Representative Gosar is a dentist. According to his official House website, Representative Gosar serves in several caucuses that concern health care and/or veterans.

In officially supporting HR 3396, these four Representatives join Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, as well as co-sponsors, Representative Gwen Moore (D-WI-4), Representative Brian Fitzpatrick (R-PA-8), Representative David Price (D-NC-4), Representative Mark Pocan (D-WI-2), Representative Ed Perlmutter (D-CO-7), Representative Ron Kind (D-WI-3), and Representative Joe Neguse (D-CO-2). IBS Impact appreciates the support of all these Members of Congress. If you are a constituent of any of these legislators, please take a few minutes 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 3396, please see the previous post from July 18, 2019 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 2018 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 3396 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 3396.

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 3396 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 116th, the necessary number of sponsor/cosponsors must be reached by December 2020. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 3396 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, HR 2311 in 2016, and HR 1187 in 2018. 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. FDA Approves Tenapanor (Ibsrela) for Adults with IBS with Constipation (IBS-C)

This past week, the U.S Food and Drug Administration (FDA) approved the sale and distribution of a new medication for irritable bowel syndrome with constipation (IBS-C), tenapanor, to be known by the brand name Ibsrela. Tenapanor, a 50 mg. daily oral medication is approved for adults. It has not been approved for youth under the age of 18 and at this time, is considered medically contraindicated for children under the age of 6.

Tenapanor is a minimally absorbed small molecule sodium-hydrogen exchanger NHE3 inhibitor, the first IBS medication that uses this mechanism. It was developed by Ardelyx, Inc.  The current FDA approval is based on two recent studies. One showed that 37% of study volunteers met the criteria for response compared to 24% of those receiving a placebo.  The second trial showed that 27% of those receiving tenapanor met the criteria for response compared to 19% of the placebo group. For both studies, a response was defined as at least a 30% reduction in weekly average abdominal pain and an increase of at least one complete, spontaneous bowel movement in the same week for at least 6 weeks.

The following links provide much of the information currently available. At this time, it is not clear when the medication will be available for prescription by doctors and sale to patients, but IBS Impact will attempt to update if significantly new details are released.

FDA approval and documents relating to tenapanor (Ibsrela)

FDA approves Ibsrela for IBS-C in adults” from Healio Gastroenterology, a medical news site for health care professionals.

IBS Impact hopes that this medication will provide an effective new option for some individuals with IBS and urges readers to educate themselves thoroughly on the benefits and risks and to discuss with their physicians as to if it is appropriate for their own medical history and needs.

Phone Research: iSTEP Study for Mothers with Irritable Bowel Syndrome (IBS), Seattle Children’s Research Institute, September 2019

The following telephone research study seeking volunteers is being conducted by the Seattle Children’s Research Institute in Seattle, Washington, USA. It is open to women with a diagnosis of IBS and abdominal pain who are also parenting a child or children ages 5-10 who do not have abdominal pain. The study consists of  a 30 minute interview scheduled at the researchers’ and participants’ mutual convenience.  It is not necessary to live in the local Seattle area to participate. The purposes of the study are to determine the impact of maternal IBS and abdominal pain on mothers and their children, the skills that would be help mothers balance IBS management with parenting, and if there is interest in an online program to help with parenting. The principal investigator of this study is Tonya Palermo, PhD, Professor at the Institute’s Center for Child Health, Behavior and Development.

If you are interested in participating in this study, the full description and screening form can be found at this link.

https://www.seattlechildrens.org/research/research-studies-clinical-trials/current-studies/istep/

Please address any questions directly to the Research Coordinator, Denae Clohessy. at the phone number or email given on the linked page.

IBS Impact welcomes 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 or surveys they wish to be considered for posting. A contact form is available on the main IBS Impact website.

IBS Impact makes these announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation. Additional studies can be found by clicking on the Research– Clinical Trials sub-category in the right sidebar of this blog on our main website IBS studies page. Please be sure to check the date at the top or bottom of a given post, as many posts from this blog remain visible in search engines for several years, and studies stop accepting volunteers or conclude the trials after a period of time. IBS Impact, as an entity, is not directly affiliated with any research sponsor or organization and receives no funding from any source for studies, surveys or links we feature on this blog, the main site or social media.

Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019 (HR 3396) Introduced in the U.S. House of Representatives.

The International Foundation for Functional Gastrointestinal Disorders (IFFGD) has announced that the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019, also known as HR 3396 was introduced in the U.S. House of Representatives on June 20, 2019.  HR 3396 addresses public awareness efforts and research funding for functional gastrointestinal and motility disorders like IBS, as well as improved efforts at coordination of research efforts and prescription drug approval among federal entities and the functional GI and motility disorder community.

This is similar to the bill that was known in the 112th Congress in 2011-2012 as HR 2239, in the 113th Congress in 2013-2014 as HR 842, in the 114th Congress in 2015-2016 as HR 2311, and in the 115th Congress in 2017-2018 as HR 1187. Because the composition of Congress changes with each federal election, it is not unusual for legislation that does not pass to be reintroduced in future sessions under different bill numbers depending on the date of introduction.

IBS Impact thanks IFFGD  for its ongoing work of many years in bringing this bill to fruition, and urges readers who are U.S. citizens to advocate for this landmark legislation on behalf of people with IBS and related disorders. As with all the previous versions of the Act, HR 3396, was introduced by Representative F. James Sensenbrenner, Jr. (R-WI-5) as the initial sponsor. Representative Gwen Moore (D-WI-4), also a supporter of all previous versions of the Act, became the first co-sponsor of HR 3396. Since then, Representative Brian Fitzpatrick (R-PA-8), a co-sponsor for the second time, and Representative David Price, (D-NC-4), a co-sponsor for the fourth time, signed on in June 2019 and Representative Mark Pocan, (D-WI-2), a co-sponsor for the third time, and Representative Ed Perlmutter (D-CO-7), a co-sponsor for the fourth time, Representative Ron Kind (D-WI-3), a co-sponsor for the fifth time, and Rep. Joe Neguse, D-CO-2) a co-sponsor for the first time, all signed on in July 2019. If you are a constituent of any of these representatives,  please write or call or post on their social media to thank them for their ongoing support of the functional gastrointestinal and motility disorders community.

Past versions of the Act have been supported by both political parties and it is a revenue-neutral bill, meaning no new spending or taxes are involved. However, through this legislation, Congress can direct the National Institutes of Health to allocate existing discretionary resources specifically to IBS and other functional gastrointestinal and motility disorders, such as GERD, gastroparesis, chronic idiopathic psuedo-obstruction, functional dyspepsia, short bowel syndrome, Hirschsprung’s disease, cyclic vomiting syndrome, chronic bowel incontinence from various causes, and many others, which collectively affect about 25% of Americans. Irritable bowel syndrome is the most common of these. 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 often involves multinational teams of scientists, and in any case, study results are usually published globally, adding to cumulative scientific knowledge among professionals and public awareness of various conditions worldwide. Although the Act has not been passed yet, historically, the process of advocating for support has brought increased awareness and funding to functional gastrointestinal and motility disorders like IBS.

In order to pass the House of Representatives in this Congress, HR 3396 needs support from 218 Representatives, a majority of the House, by the end of the current 116th Congress in December 2020. IBS Impact hopes that additional previous cosponsors who are still in office will continue their support and encourage their colleagues to sign on as well. Now, people with IBS and related disorders, as well as our supporters, must show Congress that this is important enough to pass and enact.

For more information, see IFFGD’s link at: https://iffgd.org/advocacy-activities/congressional-bill.html
The text of the bill, the current status and cosponsors can also be accessed directly at any time through its official Congressional database entry here. If you do not know who your Representative is, you can look up this information by entering your zipcode in the “Find Your Representative” search box with the white U.S. map graphic near the top right corner of your screen at house.gov. In some zipcodes, different areas fall into two or more different Congressional districts, in which case you will then be prompted to enter your exact street address to determine the correct district.

Clicking on your Representative’s name will take you to his or her official House website, which will have contact forms, links or details. If you already know who your Representative is, you can generally find the website by typing his or her name into any Internet search engine. Because modern security procedures for postal mail may result in significant delays, legislators generally prefer to hear from constituents through email/website contact forms or telephone. If you choose to call, it is preferable to ask for the staff person in charge of health issues, but if he or she is not available, you may leave a message or speak to the person who answers your call. Many legislators also have social media accounts.

Your specific personal experiences as a person with IBS and/or other functional gastrointestinal disorder or a family member, friend or professional who supports us, and how HR 3396 is needed are most effective in communicating that we are real people behind the statistics. However, even a polite general request can demonstrate to your Member of Congress that there are many constituents interested in the swift passage of this Act.

When writing and/or calling, be sure to state your name, where you live in the Congressional district and that you are a constituent. Tell briefly why you are interested in HR 3396 so they know who you are and why the bill is important– such as have had IBS for X years, have had difficulty finding adequate relief or have a family member with IBS, etc. If you are prepared with a few reputable facts and details about IBS in general to show that this is a widespread issue, not just your personal problem, these also help in showing credibility on the issue. The IFFGD link above has some suggested talking points.  Familiarity with your Representative’s record on or interest in other health issues may also help,  but if you do not know these things, telling your own experience is fine. Be sure to say thank you. Then pass the word to family, friends, coworkers or classmates who have been supportive of you with your IBS. Keep in mind that because of the periodic elections and redistricting, you may have a different Representative than before, even if you have not changed your residence.

Please sign your real full name, physical address and email address if you choose to write,  or give this information to the staff member you speak to you choose to call on the telephone. Most offices will request it near the end of the call so that they have a record of callers and issues discussed. This is important so that Congressional staff members know that you are actually a constituent and potential voter in their district. Many legislators do not accept communications from those outside their own districts. They may also wish to respond to you, although it may take several attempts to attract attention or some time to receive a reply. Please contact only your member of the U.S. House of Representatives at this time. The President, Senators, Governors or other state or local officials do not have any control over this part of the legislative process.

You do not have to be an excellent writer or speaker, just one that your Representative and his or her staff will see as a real person with real issues and real needs, not a “canned” request copied and pasted from somebody else’s letter. Keep your message short– one page or less in writing, or a phone message or conversation of a couple minutes.

This is a major opportunity for the IBS community and its various websites, groups and organizations to come together, regardless of political or philosophical differences, make our needs known, and do something to make our lives better in the future. Self-advocacy to get legislation enacted takes time, effort and patience, but it is possible if more people are willing to make noise publicly, as other health and disability groups do.

For all those with IBS who complain that nobody understands and nobody wants to do anything for us, now is your chance to make yourself heard. Some people want to understand and help. Congress has the power to make this bill happen. Each of us has the power to make it happen by coming out of the closet, getting over the embarrassment and asking publicly and persistently for this very specific help. It only takes a few minutes to write an email or pick up the phone. Please do it.