Irritable Bowel Syndrome (IBS) Advocacy Does Matter

July 27, 2014

About four or five years ago, when the first concept of a grassroots effort that eventually became IBS Impact in 2010 was taking shape and various people were discussing if advocacy and awareness by people with IBS could succeed, even IBSers who were initially interested would often ask questions like, “What is IBS advocacy anyway?” That question would become the title to one of this blog’s early posts on July 15, 2011. Several of the early members, including the IBS Impact founder, had had long experience in other health and disability rights communities and those of other social minority groups. We tried earnestly to explain tried and true principles of self-education and self-empowerment that had worked successfully for other groups and how we hoped this would help more people with IBS to be open, self-confident and assertive with family, friends, coworkers on an individual level, as well as eventually feel inspired to organize to ask for changes that would benefit the IBS community as a whole: more research, more readily accessible treatment options and physical and mental health providers with up to date, cutting edge expertise on IBS in our own communities, more restroom access laws, more in-person support groups and opportunities for high quality IBS education from the moment of diagnosis– or whatever people felt were the most pressing or personally relevant needs in their own country or geographical region. These were lofty goals to be sure, but not necessarily unobtainable, as many other common chronic health conditions have many of these resources at hand. This bounty did not come out of nowhere, but usually from the dedicated and persistent work, advocacy, financial commitments and media attention of affected people and concerned family members. We aimed to give people with IBS who were struggling reasons for hope and a sense of control when Internet support forums often were full of daily messages of despair. “Nothing works, nobody understands, this is horrible, I am scared, why don’t doctors… politicians… famous people with a lot of money…. the media… do something?” These were valid points and good questions.

Unfortunately, if the few of us IBSers who seemed to be consistently interested in “doing something” came back with the answer, “Because we don’t ask them,” or suggested writing a letter about some IBS-friendly legislation or IBS-unfriendly media attention or financially supporting the IBS cause through existing GI  organizations in various countries, most people lost interest and discussions eventually fizzled out. People were generally not willing to act on their natural emotions concretely, especially in a public way. Although things seem to have improved a bit since then, it’s still the case for many IBSers who, to quote Tim Phelan, author of a 2007 memoir of IBS, Romance, Riches, and Restrooms are afraid to “come out of the water closet,” as he was for many years. To a point, this is understandable, as is the fact that those of us who are most severely ill don’t have the energy to function, and those who have very good, consistent symptom control or mild, sporadic symptoms have little incentive or desire to spend any more time on IBS. But that still leaves many of us in the vast middle ground who, for the most part, are not used to thinking of ourselves as a community that can change anything for the better on our own behalf. Many are still caught up themselves in the misconceptions and myths of IBS, and not in a position to educate the public. From the beginning, some IBS Impact members argued, in retrospect, rightly, that basic education of IBSers about their own IBS was just as important, if not more so, leading to a shift, over time, in some of the content of our sites and social media.

Some people with IBS are learning to become receptive to self-advocacy, and slowly, the culture of apathy and treating IBS as a deep, dark secret is changing a bit. However, in some cases, apathy has been replaced by cynicism,  “I don’t depend on the system to do anything for me. I try to help people take care of themselves.” (That’s good, but systems advocacy is also, in a way, taking care of ourselves.) and, “This won’t work. Politicians will never do anything for us.” (Some of them already have.) For the last two Aprils, one of the posts on this blog has been a retrospective of what progress has been made in the IBS world lately, including legislation.  See April 10, 2014 and April 24, 2013.

Yesterday, July 26, 2014, was the 24th anniversary of the signing of the Americans with Disabilities Act, a broad civil rights law for United States citizens and visitors alike with all types of disabilities. It was not the first disability rights law, nor has it been the last, but it remains one of the most comprehensive. It was preceded by almost three decades of increasing disability identity and advocacy in the country, and it was about two years from the introduction of the first drafts in Congress to the signing of the final version into law by then-U.S. President George H.W. Bush on July 26, 1990. This was the result of collaboration and negotiation among government leaders from both U.S. political parties, and broad coalitions of people with all types of disabilities, families, health and human service professionals, educators and other supporters across the nation. Forms of advocacy ranged from the very private to the very public:  calls, letters, legislative visits, rallies, civil disobedience and media coverage. The point is that millions of people came together with common purposes, and, as a community, they did not stop for as long as it took to reach a goal.

The ADA has been a model for similar laws and disability rights advances in other countries of the world, and in 2008, eighteen years later, after many more years of advocacy, the disability community was successful in amending the ADA to clarify the original intent of the ADA’s framers and restore some protections that  incorrectly had been eroded by court decisions in the ensuing years.  These ADA amendments are of benefit to people with IBS as well, as they made it clearer that the law also applies to impairments of bodily function, such as digestion, or conditions that may come and go periodically. The fight to enforce the ADA and other existing disability laws and public policies in the United States and globally continues, as there is always a long way to go, but the history of the broader disability rights movement, as lived by some current and former members of IBS Impact, is proof that advocacy matters and makes a difference. We do not take it for granted. May the IBS community one day be able to look back on our history in this way and see a similarly major and positive evolution over time.


Representatives Price of North Carolina and Shea-Porter of New Hampshire Co-Sponsor HR 842 for Functional Gastrointestinal and Motility Disorders

July 17, 2014

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

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, Representatives David Price  (D-NC-4) and Carol Shea-Porter (D-NH-1) have recently signed on as co-sponsors to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Price is currently serving his thirteenth non-consecutive term in Congress representing the 4th District of North Carolina, which was recently re-districted and currently encompasses much of the Triangle region in the central part of the state, including most of Durham and Orange Counties and parts of Alamance, Wake, Harnett, Chatham and Cumberland Counties. According to his official House website, Representative Price is currently a member of the Committee on Appropriations, where he supported increases in funding to the National Institutes of Health. He also is the Ranking Democrat on the Subcommittee on Homeland Security and  a member of the Subcommittee on Military Construction and Veterans Affairs. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk of functional gastrointestinal disorders like IBS, which are already very common in the general population. In the 112th Congress in 2011-2012, Representative Price was also a co-sponsor of HR 2239, the previous version of this Act, which was not passed by the House of Representatives at that time. IBS Impact commends Representative Price’s continued support.

Representative Shea-Porter is currently serving her third non-consecutive term in Congress representing the 1st District of New Hampshire in the southeastern part of the state, encompassing most of greater Manchester, the Seacoast and the Lakes regions, including  all of Carroll and Stratford Counties, most of Belknap and Rockingham Counties and small portions of Grafton, Hillsborough and Merrimack Counties. Representative Shea-Porter, whose official House website, states she is a former military spouse, is a member of two subcommittees of the Committee on Armed Services. She also has a record of membership in several caucuses or supporting legislation related to various health and women’s issues. In most countries, women are also disproportionately affected by IBS.

If you are a constituent of Representative Price or Representative Shea-Porter. please take a few minutes to write or call with your thanks for their support of HR 842 and the functional gastrointestinal and motility disorders community.

In officially supporting HR 842, Representatives Price and Shea-Porter join the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8), Representative Julia Brownley (D-CA-26), Representative Bobby Rush (D-IL-1),  Representative Gwen Moore (D-WI-5), Representative Ron Kind (D-WI-3), Representative Susan Davis (D-CA-53),  Representative Peter Welch (D-VT), Representative James McGovern (D-MA-2), Representative Gerald Connolly (D-VA-11), Representative Louise Slaughter (D-NY-25), Representative Bill Posey (R-FL-8), and Representative Ed Perlmutter (D-CO-7), Representative Jim Himes (D-CT-4), Representative André Carson (D-IN-7), and Representative Mo Brooks (R-AL-5) and Representative Richard Neal (D-MA-1) U.S. citizens residing in the districts of Representative Price’s and Representative Shea-Porter’s  colleagues listed here, please thank them as well.

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

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 842 and you have not contacted him or her recently to ask for his or her support, please see the previous post from March 2, 2013  for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2012 elections, district boundaries that may have been re-drawn, or if you have moved.

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

HR 842 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 842.

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

It is IBS Impact’s understanding that HR 842 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 113th,  the necessary number of sponsor/cosponsors must be reached by December 2014. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 842 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 842 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


Online Clinic for Bladder, Bowel and Digestive Health Available July 16-22, 2014

July 9, 2014

TalkHealth, a social media community in the United Kingdom that provides health information and online forums, and “online clinics” where participants can ask questions of health experts and organizations for a given category of conditions, has announced that the July 16- 22, 2014 topic will be the bowel, bladder and digestive health. TalkHealth is presenting this month’s clinic in cooperation with NHS Choices, the Bladder and Bowel Foundation, The IBS Network, which is the U.K. national charity specifically for irritable bowel syndrome, Core, which is an organization for all gut and liver diseases, and PromoCon, a national service of Disabled Living for adults and children facing continence issues. The 2014 Bladder, Bowel and Digestive Health Clinic, which takes the form of an online forum, is currently open and accepting questions in advance and through the dates of the clinic.  Readers can access it by clicking the above link.

Some past clinic topics for various health conditions, including the July 2013 bladder, bowel and IBS clinic, and the August 2013 clinic for chronic fatigue syndrome (also known as myalgic encephalomyelitis) or fibromyalgia, both of which commonly overlap with IBS, are archived on the TalkHealth website, although they no longer accept questions

IBS Impact hopes TalkHealth provides another source of reputable information and support to our U.K. readers. In addition to the clinic this month, please browse the rest of the TalkHealth website, including the new online forums for IBS, and feel free to leave comments on this post for the benefit of other IBS Impact readers as to if you find the resources useful.


Representative Neal of Massachusetts Co-Sponsors HR 842 for Functional Gastrointestinal and Motility Disorders

July 3, 2014

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

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, Representative Richard Neal (D-MA-1) has recently signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Neal is currently serving his thirteenth term in Congress, his first term representing Massachusetts’ recently redrawn 1st district,  which encompasses western and part of central Massachusetts, including all of Berkshire County, most of  Hampden Counties and parts of Franklin, Hampshire and Worcester Counties, including the cities and towns of Springfield, West Springfield, Holyoke, Pittsfield and  Westfield. According to Representative Neal’s official House website, he has a record of supporting health issues.

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

In officially supporting HR 842, Representative Neal  joins the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8), Representative Julia Brownley (D-CA-26), Representative Bobby Rush (D-IL-1),  Representative Gwen Moore (D-WI-5), Representative Ron Kind (D-WI-3), Representative Susan Davis (D-CA-53),  Representative Peter Welch (D-VT), Representative James McGovern (D-MA-2), Representative Gerald Connolly (D-VA-11), Representative Louise Slaughter (D-NY-25), Representative Bill Posey (R-FL-8), and Representative Ed Perlmutter (D-C0-7), Representative Jim Himes (D-CT-4), Representative André Carson (D-IN-7), and Representative Mo Brooks (R-AL-5). U.S. citizens residing in the districts of Representative Neal’s colleagues listed here, please thank them as well.

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

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 842 and you have not contacted him or her recently to ask for his or her support, please see the previous post from March 2, 2013  for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2012 elections, district boundaries that may have been re-drawn, or if you have moved.

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

HR 842 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 842.

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

It is IBS Impact’s understanding that HR 842 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 113th,  the necessary number of sponsor/cosponsors must be reached by December 2014. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 842 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 842 as they occur. Links to the social media sites can be found on the right sidebar of the blog.