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

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance,  on June 6, 2013, one day after Digestive Health Congressional Call-In Day, Representative James (Jim) McGovern (D-MA-2)  signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative McGovern is serving his ninth term as a member of the House of Representatives. He currently represents Massachusetts’ 2nd district in the central part of the state, including large portions of Worcester, Hampshire and Franklin Counties and small sections of Hampden and Norfolk Counties. According to Representative McGovern’s official House website, he has a record of supporting many pieces of legislation on health or veterans’ issues.  As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk for functional gastrointestinal disorders like IBS, which are already very common in the general population.

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

In officially supporting HR 842, Representative McGovern 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), and Representative Peter Welch (D-VT). U.S. citizens residing in the districts of Representative McGovern’s colleagues listed here, please thank them as well. Although Congressional Call-In Day is over for this year, ongoing advocacy for HR 842 needs to continue every day.

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.

Representative Welch of Vermont Co-Sponsors HR 842. Congressional Call-In Day for Functional Gastrointestinal and Motility Disorders is June 5, 2013

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, as of mid-May 2013, Representative Peter Welch (D-VT) has signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Welch is serving his fourth term as a member of the House of Representatives. He is the single, at-large representative in the House for the entire state of Vermont. According to Representative Welch’s official House website,  he is a member of several health-related caucuses within Congress, and. has a record of supporting many pieces of legislation on health or veterans’ issues.  As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk for functional gastrointestinal disorders like IBS, which are already very common in the general population. Representative Welch was also the initial co-sponsor of H. Res 1309 for IBS awareness and research in the 111th Congress in 2010 and the previous version of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, HR 2239 in the 112th Congress in 2011-2012.

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

In officially supporting HR 842, Representative Welch 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), and Representative Susan Davis (D-CA-53). U.S. citizens residing in the districts of Representative Welch’s colleagues listed here, please thank them as well.

IFFGD/the Digestive Health Alliance’s upcoming annual Congressional Call-In Day is an excellent opportunity for constituents of current supporters to express their appreciation to their legislators, as well as  forU.S. citizens whose Representatives are not yet co-sponsors to advocate for their support. This year’s Call-In Day is scheduled for this coming Wednesday, June 5, 2013. On that day IFFGD/DHA and other IBS sites, including IBS Impact, strongly encourage all U.S. citizens with all functional gastrointestinal or motility disorders (for example, irritable bowel syndrome, GERD, gastroparesis, chronic idiopathic psuedo-obstruction, Hirschsprung’s disease,  functional (recurrent) abdominal pain, cyclic vomiting syndrome, functional dyspepsia and many others, which collectively affect at least 25% of the population), concerned family members, friends, co-workers or classmates, health and human service professionals who work with people with functional GI or motility disorders, to call their Representatives about HR 842 on that date. A strong, unified presence by many voices on the same day will make an impression that will pave the way for the IFFGD/DHA’s delegation of self-advocates with functional GI or motility disorders and functional GI professionals who will travel to Washington, DC to advocate in person later this month on IFFGD/DHA Advocacy Day 2013.

If you know the member of the federal House of Representatives who represents you, the direct telephone number for his or her Washington, DC office can usually be found on his or her official website, which can be located by an Internet search of his or her name. 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. If you are not sure who is your Representative, you can look up this information at  http://www.house.gov/representatives/find/ or call the U.S. Capitol switchboard at (202) 225-3121.

During business hours Eastern time on June 5, call your Representative’s office. Identify yourself as a constituent and give your name and the town or city in which you reside and ask to speak to the staff member who deals with health issues. You may be asked for your street address or phone number. This is to confirm that you do live in the Representative’s district and/or to allow the office to contact you to follow up. If you are nervous, in advance of calling, write down notes for yourself or a short presentation to read. You do not have to be an excellent speaker, just a person that the legislator and his or her staff will see as a real person with real needs. Be polite, keep the conversation on topic and limited to a few minutes, and thank the staff person for his or her time. Ask for the Representative to support HR 842 (or express your thanks for if he or she has already signed on).

Briefly explain your personal interest and/or experience with functional GI or motility disorders (for example, have had/family member has had irritable bowel syndrome for X years and has had difficulty finding appropriate treatment) and/or why functional GI and motility research and education provided for in HR 842 are important in general such as briefly what a functional GI or motility disorder or  your specific one of interest, like IBS,  is, how many people it affects, usually affects both genders, all ages, all ethnic groups  that IBS/functional GI disorders are usually chronic. often misdiagnosed or mistreated and effective treatments, providers and local community services are limited. Thank the staff member again before ending your call. If the staff member who deals with health issues is not available, leave a brief message with the above details on voice mail or with the staff member who answers the phone. It is rare for such advocacy calls to result in an immediate commitment to a particular bill, but one purpose of Call-In Day is to create awareness of the needs that affect large numbers of people and momentum for increasing Congressional support.

For more information on HR 842 and advocacy strategies, including links to the bill see the previous post from March 2, 2013 or click on the HR 842 category in the right sidebar of this blog to see all posts on this topic. Click the following link for  DHA’s page on Call In Day 2013.

IBS Impact urges all U.S. citizen readers of this blog to participate in the important and easy advocacy effort and to spread the word among your supportive relatives, friends and functional GI and motility disorder groups.  The progress of HR 842 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.

Representative Davis of California Co-Sponsors HR 842 for Functional Gastrointestinal and Motility Disorders

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, as of early May 2013, Representative Susan Davis (D-CA-53) has signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Davis is serving her seventh term as a member of the House of Representatives. Her district, the 53rd Congressional District of California, currently represents the central and eastern San Diego region, as far south as parts of Chula Vista and as far east as El Cajon. According to Representative Davis’ official website, she is ranking member of the House Subcommittee on Military Personnel, and has a past history of supporting much legislation on behalf of 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 for functional gastrointestinal disorders like IBS, which are already very common in the general population. She also has supported health care legislation, including medical research budgets for the National Institutes of Health, as well as women’s issues. In most countries, women comprise approximately two-thirds of adults with IBS. Representative Davis was also a co-sponsor of the previous version of this bill, HR 2239, in 2011-2012.

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

In officially supporting HR 842, Representative Davis 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), and Representative Ron Kind (D-WI-3).  U.S. citizens residing in the districts of Representative Davis’ 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.

Restroom Access Act (Ally’s Law) Updates in Maryland and Maine

As of last month, April 2013, there are positive updates to report in two more U.S. states regarding Restroom Access Acts, popularly known as Ally’s Law. This brings the number of states with known restroom access laws, allowing people with medical conditions to use employee-only restrooms in retail establishments, to fifteen.

In Maryland, according to this April 11, 2013 article in the Maryland Reporter,  state legislation HB 1183 was signed into law by the governor. and is now known as Chapter 148. It will take effect on October 1, 2013. Unfortunately, there do not appear to be additional publicly available sources to confirm or elaborate on the linked information, but as far as IBS Impact is able to determine, the current law amends previously existing law to reduce the minimum number of employees a retail establishment must have in order to be covered by the law from twenty to three. This is more consistent with similar restroom access laws in other states and considerably expands the number of businesses that would be required to comply. The amended Chapter 148 also provides for the Maryland Department of Health and Mental Hygiene to create an identification card that can be downloaded and printed from its website and signed by a physician to verify an individual’s medical condition that may require immediate access to a toilet. Please note that unlike similar laws in most other states that currently have them, Maryland does not specifically mention irritable bowel syndrome in the text. However, IBS is covered by the phrase, “other medical condition.”

Also last month, Team Challenge Maine, an inflammatory bowel disease advocacy and awareness Facebook group we highlighted on this blog on December 23, 2012 for its efforts to pass similar legislation in that state, reported that to their surprise, Maine has already had such a law since 2009. The text of Maine statute Title 22, Section 1672-B is linked here. It specifically mentions irritable bowel syndrome among other eligible conditions. Team Challenge Maine now encourages people to report on their experiences of using the law now that they are aware of it.

These laws and the advocacy movement to enact them are popularly named for Ally Bain, who has Crohn’s disease, a type of inflammatory bowel disease (IBD). Several years ago, as a young teenager, Ally had an accident in a store after her request to use the employee restroom was refused, despite her explaining repeatedly that she had an urgent medical need. After that humiliating experience, Ally successfully worked with legislators in her then-home state of Illinois to enact a law to address similar situations in 2005. Since then, with continued public advocacy by Ally and others, in addition to Illinois, Maryland and Maine, there are currently known existing laws in Colorado, Connecticut, Kentucky, Massachusetts, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Washington State and Wisconsin. As these are individual state laws, they each vary in certain details, but most say that a “retail establishment” must give a person with an “eligible medical condition” access to an employee restroom if there is no public restroom immediately available, there are at least three employees (in one case, two) working at the time, and the facility itself or its location will not pose a safety hazard to the person or security risk to the business. Please see IBS Impact’s previous posts on February 21, 2012 and August 20, 2012 for links to text of the law in other states where one currently exists. In most of these states, irritable bowel syndrome (IBS) is specifically mentioned in each law. In Massachusetts, similar to Maryland,  IBS is covered broadly under “any other medical condition requires immediate access to a restroom facility.”

In past years, similar bills been introduced in several additional states, but have not yet passed, requiring continuing advocacy and reintroduction in subsequent legislative sessions.  IBS Impact has reached out to Ally and other self-advocates in the inflammatory bowel disease community in an effort to increase public awareness of the similar concerns of many people with IBS, as well as to offer support toward this common goal. While their diagnosis of IBD is different from IBS in several ways, the experience of gastrointestinal pain, unpredictable, urgent or frequent trips to the bathroom and feeling embarrassed and alone is shared by many people with IBS. The IBD community has generally been much more publicly visible and active in these advocacy efforts relative to people with IBS.  Please see IBS Impact’s previous post on November 2, 2012 for commentary on why it is in the interests of the IBS community to join our IBD-affected peers in pressing for these laws.

IBS Impact is pleased to learn that restroom access laws do exist in Maryland and Maine. However, there appears to be a lack of widespread coverage of the previous Maryland law and the recently signed amendments by journalists, as well as by websites, blogs and organizations in both the IBD and IBS communities. This news was not reported on this blog earlier than now,  precisely because of the difficulty in confirming accurate details through IBS Impact’s many sources, contacts and research efforts. Also, it is ironic that advocacy activities in Maine were publicly launched for several months before they were able to discover that a law already is on the books.

All this seems to point to a major lack of awareness in constituencies that might benefit from these laws, as well as the need for a centralized source for the status of laws, pending legislation, and advocacy efforts in each state. While IBS Impact does not currently have the resources to be as comprehensive a source for this as would be ideal, over time, this blog has striven to report on as much information on the subject as is readily available. When possible, we have also included links to the laws and to grassroots groups concerned with these issues in certain states.  We encourage readers and followers, both in the IBS and the IBD community, to comment here or to contact IBS Impact privately with additional information or corrections in the future, so that all people with medical conditions causing urgent restroom needs can benefit from this knowledge.

Representative Kind of Wisconsin Co-Sponsors HR 842 for Functional Gastrointestinal and Motility Disorders

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, as of late April 2013, Representative Ron Kind (D-WI-3) has signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Kind is serving his ninth term as a member of the House of Representatives. His district, the 3rd Congressional District of Wisconsin, represents the western part of the state, including La Crosse, Eau Claire and Platteville. He is a member of the Subcommittee on Health of the House Committee of Ways and Means.  He also has a record of supporting legislation of concern to 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 for functional gastrointestinal disorders like IBS, which are already very common in the general population. Representative Kind was also a co-sponsor of the previous version of this bill, HR 2239 in the 112th Congress in 2011-2011.

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

In officially supporting HR 842, Representative Kind 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), and Representative Gwen Moore (D-WI-5).  U.S. citizens residing in the districts of Representative Kind’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.

A Perspective of 5 Years and 6 IBS Awareness Months

by Nina Pan, IBS Impact founder and primary blogger for IBS Impact

In late 2007, very abruptly after decades of excellent physical and mental health, I became a person with severe pain-predominant IBS and numerous extraintestinal symptoms. Despite immediate and correct diagnosis by two physicians within days of onset, prompt treatment across the spectrum of reputable conventional and complementary IBS interventions  and proactive, unceasing self-education and self-advocacy, it has been over five years of a long, continuing road and, thankfully, some slow physical progress and regained quality of life, but never simple answers and certainly no mythical miracle cure.  IBS and its many unpredictable effects, physically, emotionally, socially, professionally,  and financially, remain with me to some extent every waking hour, and it’s only with the passage of time that it’s possible to realize how far I’ve come.

My first IBS Awareness Month, April 2008, passed in a blur of the steep learning curve of recent diagnosis and close to 20 severe GI and non-GI symptoms, including sleep disturbances, 24 hours a day, 7 days a week. My second IBS Awareness Month in April 2009 found me a bit improved, but still much the same overall. A few months later, realizing that I was quickly exhausting appropriate options for my own IBS management, I began to consider using my long personal and professional experience in disability and health communities and as an educator to advocate for the IBS cause. Shortly after my third IBS Awareness Month in 2010, IBS Impact came to fruition. Just before my fourth IBS Awareness Month in 2011, we launched the public website, and in 2012, around my fifth IBS Awareness Month, we made our first forays into social media.

2013 marks my sixth April as a person with IBS, and while IBS Impact is still far from the original vision of a large, active community of people with IBS focused on self-advocacy and awareness and, similar to symptom management, the results are rarely immediate or obvious, slow and steady work has made it a presence in the IBS and GI disorders community that has reached, at last count, 101 countries on every continent at some time in its existence. Our niche is intentionally distinct from the many existing forums that focus on emotional support and day to day management: reputable, evidence-based scientific information, personal experiences, useful news, clinical trial and advocacy opportunities, and food for thought about the broader medical and social issues facing many of us with IBS. Although my own experiences and interests as a person with IBS definitely motivate, inform and shape IBS Impact, I rarely write directly about them here, because the goal is not to have readers see this endeavor as about me and my personal problem. It’s about guiding both fellow people with IBS and others to recognize IBS as a global societal concern that affects not only those of us with the symptoms or diagnostic label, but everyone around us too.

Like individuals, as a community, people with IBS often have pessimistic phases. Enter any support forum at random, and some messages will be about how, “Nothing helps,” “Nobody understands,” “Nothing ever changes.” That often appears true in the heat of the moment, but again, looking back over the long term, what have six years of IBS Awareness Months brought for the IBS community?  Here are several actual examples, many of which have been discussed before on this blog.

Progress in the science of IBS:

 In 2010, a report of a decade-long study by McGill and McMaster Universities of Walkerton, Ontario, Canada was released. This community experienced contamination of its water supply in 2000, leading to over 2300 residents becoming ill. More than a third of these people later developed post-infectious IBS. This research contributed to the understanding of IBS-PI, as well as the possible genetics of IBS. (See the August 5, 2011 post)

Also in 2010, researchers at UCLA in the United States and McGill University in Canada, working jointly, discovered neurological changes in female study participants with IBS, opening the door to further research of possible biomarkers for IBS. This research interest in the neurology of IBS continues. Just this week, the State University of New York at Buffalo reported in a press release about the work of Jeffrey Lackner, PsyD and colleagues who are using brain imaging in an attempt to identify IBS biomarkers and possible changes as a result of psychological treatments like cognitive behavioral therapy.

In the past five years, there has been increasing interest, both in scholarly journals and mainstream media, in the role of gut bacteria in IBS as well as overall health. Besides many medical studies specific to IBS and other GI disorders, two separate international collaborations are currently working with gut microbiome samples recruited from thousands of ordinary members of the general public who volunteered over the Internet. (See the December 31, 2012 post.)

Progress in the treatment of IBS:

The NICE guidelines in the United Kingdom for treatment of IBS were updated in 2008. The American College of Gastroenterology guidelines were updated in 2009. (See the April 27, 2012 post.)

Linaclotide, approved in 2012, is already in use for IBS-C  in the U.S., and is soon forthcoming in Europe as Constella. Several other investigational medications for IBS are in the research pipeline. (See the September 1, 2012  and November 30, 2012 posts.)

The low-FODMAP diet, pioneered in Australia in 1999, wasn’t yet well known internationally as a possible intervention for some people with IBS in 2008, but has now received wider interest and evidence-based support.

Progress in understanding the impact of IBS and the barriers that remain:

In 2009, IFFGD released the first report of its ongoing and comprehensive Unmet Needs Survey of respondents with IBS.

In 2010, a team of researchers at UCLA published a study that showed that far more gastroenterologists, primary care physicians and nurse practitioners in local communities than functional GI experts still believe erroneously that IBS is a diagnosis of exclusion. (See the October 9, 2011 post.)

In 2011, a Rome Foundation Working Team Committee report acknowledged that the percentages of people with moderate and severe IBS are likely higher than the same researchers previously believed. (See the January 10, 2012 post.)

Progress in societal supports for people with IBS:

In 2011, the U.S. Department of Veterans Affairs officially recognized IBS as a presumptive, service connected disability for the purposes of disability compensation for veterans and service members who have served in the Persian Gulf/Southwest Asia region since 1990.  (See the August 12, 2011 post.)

Largely through the efforts of our peers in the inflammatory bowel disease community, most U.S. states with existing Restroom Access Acts/Ally’s Law, have adopted them sometime in the years since 2008. (See the February 20, 2012, August 21, 2012 and November 2, 2012 posts.)

Progress in advocacy:

IBS Impact did not exist in April 2008. Although IFFGD was founded in 1991, its grassroots arm, the Digestive Health Alliance, was not yet operating either six IBS Awareness Months ago. Among other things, DHA has now seen the IBS/functional GI community through a U.S. House of Representatives resolution on IBS awareness in 2010, has been an ongoing advocate on behalf of veterans who are disproportionately affected by functional GI disorders like IBS,  and is now shepherding the Functional GI and Motility Disorders Research Enhancement Act (HR 842) through its second attempt at Congressional passage, with the support of IBS Impact and other groups and individuals. (See the March 2, 2013 and March 18, 2013 posts for more information on HR 842.)

These are just a handful of positive steps forward for the IBS community on many levels over the past five years. There are many more. Obviously, we still have very far to go before all people with IBS have all the medical and social supports that we need for fully productive lives, with or without IBS,  but progress is being made. There are reasons for hope, especially if more of us do our part for self-advocacy and awareness in the years and IBS Awareness Months to come.

April is Irritable Bowel Syndrome Awareness Month 2013

April is Irritable Bowel Syndrome Awareness Month. IBS affects, depending on the source, at least 25 million and perhaps up to 58 million women, men and children in the United States and anywhere from 9-23% of the population in different countries on every continent of the world.  In the U.S, this prevalence exceeds that of diabetes, chronic kidney disease, asthma, adults with chronic heart disease, and, by far, inflammatory bowel disease (IBD), with which IBS is often confused.

Unlike awareness weeks and months for these and other common health conditions, it is often difficult to know this unless one follows certain IBS sites, but as time goes on, awareness gradually increases. In 2012, this blog published a post entitled “10 Things We Can Do for IBS Awareness This Month and Every Month,”  which remains the  third most viewed single post on this blog. Here, updated for 2013, are 10 possible strategies for how people with IBS in any country can increase awareness of IBS. Readers of this blog who are relatives and friends, with the permission of the person with IBS,  feel free to help the cause too.

1) If they do not already know, talk to your family, friends, coworkers, classmates and medical providers about IBS. Having IBS is often an isolating experience, and some people with IBS who have “come out of the closet” have found that the stress of hiding and worrying about who knew and how much they knew actually triggered worse symptoms.  No, not everyone will “get it” and that can be hurtful or tiring, but people without IBS will never learn to understand unless we are willing to tell them. Some of them will help you and it may be the people you least expect. Given that IBS is the most common functional gastrointestinal disorder with prevalence anywhere from 9-23% in different countries worldwide, it’s very likely that some people  you tell will also have IBS or loved ones with IBS. The IBS Impact main website has an entire page of articles specifically for family and friends. Many past posts on this blog are also tagged for this subject, and can be found by using the search box on the right sidebar.

2) If you find the IBS Impact website or blog or any other reputable IBS site useful and interesting, share it with your family and friends, other people with IBS and your health care providers, especially those not currently active in the IBS community.  Knowledge is power. The more people who have good information and resources rather than outdated misconceptions and quacks, the better off we will be as individuals and as a group.

3) If you’re not comfortable being public, you can still quietly distribute information in public places. IBS Impact has business cards with our logo available free  for the asking. IFFGD has  free downloadable awareness posters and other resources. The Irritable Bowel Syndrome Self Help and Support Group online forum based in Canada that draws visitors from many countries worldwide, has a downloadable brochure in English explaining IBS to those who do not have it, with translations in Simplified and Traditional Chinese, Swedish and German on the website. The Gastrointestinal Society, also in Canada, distributes free information packets and pamphlets that can be ordered online and mailed to addresses within Canada. A support group that has been recently formed in early 2013, IBS West Midlands in the United Kingdom, also has created downloadable posters. Leave these materials in public displays or bulletin boards in community centers, libraries, medical offices and hospitals, pharmacies, banks, post offices, college campuses, wherever many people go every day.

4) Volunteer to share your story on the IBS Impact sites by using the contact links on the main website. We welcome diverse perspectives from people with IBS and their families and friends, and hope to be adding more during this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name. IFFGD also accepts personal stories for its websites, anonymously or with names. IFFGD also occasionally quotes people with IBS in its publications.

5) Interact with the media. When there is coverage of IBS-related topics in mainstream print or broadcast stories or blogs, send or post your comments and corrections. This lets the media and other readers, viewers or listeners know we are out here as a community and that we care about how IBS is portrayed. IFFGD occasionally gets requests from the media to interview affected people. If you are interested, let IFFGD know that it can contact you. For a past discussion of the media and IBS, see the November 6, 2011  post.

6) Participate in a research study so that scientists become more aware of our needs. Some studies are online or through the mail or phone. We regularly list some open studies on this blog, and on the main website, and many of the resources we link do as well.

7) IBS Impact is not a charity, but consider donating to one of the GI-related organizations or research facilities in your country. Many are listed on our links and research pages of the main site. It is very important for all non-profits to show that they are supported by their own constituency when they approach other funding sources.  It is true that many IBSers don’t have a lot of money to spare, but even small amounts help. A few years ago, one person with IBS stated that if every person with IBS in just the U.S, the U.K. and Australia alone committed a dollar or pound a month, we’d have over a billion a year. If you’d like, have a fundraiser. IFFGD and other charitable organizations are generally glad to assist their supporters in these efforts. For more on why financial support to IBS entities is important, see this July 22, 2011  post.

8) If you absolutely cannot donate directly, use Goodsearch (in the U.S.)  or iGive  (in the U.S. or Canada) or Everyclick (in the U.K.) as your search engines or online shopping portals on behalf of the gastrointestinal charity of your choice. These sites all work slightly differently, but participating merchants designate percentages of each transaction to specific organizations you indicate. It doesn’t look like much each time, but the amount adds up if you use them consistently. Nothing extra comes out of your own pocket, and the charities do get the money.

9) Write to legislators or policy makers to support issues of importance to the IBS community. IFFGD can help U.S. citizens with current U.S. legislation of concern to functional GI and motility disorders. If you prefer not to go through that organization, you can do so yourself. IBS Impact is a place to talk about these things and get guidance from those of us who are more experienced in one area or another.

10) If you’re ambitious, organize an awareness event, especially those of you who are students or health professionals. Talk to a health professions class or go to a health fair. For another discussion of why IBS awareness is important, see this July 9, 2011 post.

There are many more than 10 possible ways to advance the cause of IBS awareness worldwide. IBS Impact was founded on the belief that awareness is an ongoing process that should not just happen one month a year, so don’t just restrict yourself to April. But every action, small or large, multiplied by many people with IBS and our supporters moves us closer to a time when IBS is widely understood by the general public and when the medical and social needs of people with IBS as a community can be more easily met.

IFFGD/DHA Advocacy Day 2013 For Functional GI and Motility Disorders

IFFGD’s grassroots arm, the Digestive Health Alliance, has announced Advocacy Day 2013, which will take place in Washington, DC on June 18-19, 2013. Participants will join IFFGD/DHA staff and functional GI and motility researchers in meeting directly with legislators regarding several issues of concern to the digestive health community. These include HR 842, the Functional Gastrointestinal and Motility Disorder Research Enhancement Act of 2013, currently in the U. S. House of Representatives, plus the Department of Defense fiscal 2013 funding for the Peer-Reviewed Gulf War Illness Research Program on behalf of veterans, who experience disproportionately high rates of functional gastrointestinal and motility disorders, the National Institutes of Health budget for fiscal year 2014, and S. 424, the National Pediatric Research Network Act, currently in the U. S. Senate on behalf of children and youth with a range of rare conditions, including some functional gastrointestinal or motility disorders.

The advocacy activities are free of charge and some meals will be provided. However, those traveling to Washington, DC from outside the area must pay for their own transportation and hotel accommodations. IFFGD has secured a group rate at an area hotel for the event if reservations are made by May 20.  Registration for Advocacy Day itself will be open until May 28 at the above link.

IBS Impact supports having as many options as possible for people to choose the advocacy issues that interest them. Add your voice to those in the IBS and functional gastrointestinal and motility disorder community who are already speaking out. U.S. citizens, if you have contacted your legislators before with no results, don’t stop, but try again. Every person, collectively, makes a difference.

Representatives Brownley of California, Rush of Illinois, and Moore of Wisconsin Co-Sponsor HR 842 for Functional Gastrointestinal and Motility Disorders

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, Representative Julia Brownley (D-CA-26), Representative Bobby Rush (D-IL-1), and Representative Gwen Moore (D-WI-4) have all signed on recently as co-sponsors to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Brownley is a first-term member of the House of Representatives. Her district encompasses much of the Central Coast of California, including Oxnard and Thousand Oaks, as well as Ventura, which includes a large Navy base and veteran community. According to her official House website, Representative Brownley is a member of the House Committee on Veterans Affairs and ranking member of that committee’s subcommittee on health, and has already sponsored or co-sponsored other legislation relating to veterans’ health. As discussed previously on this blog, veterans and service members deployed in the Persian Gulf region have been shown to be disproportionately affected by functional gastrointestinal disorders, of which IBS is the most common.

Representative Rush is serving his eleventh term in the House of Representatives. His district encompasses most of the South Side of Chicago and parts of many communities south and west of the city. According to his official House website, Representative Rush currently holds the position of assistant Democratic whip and has a record of supporting concerns related to various health conditions.

Representative Moore is serving her fifth term in the House of Representatives. Her district, the 4th Congressional District of Wisconsin includes Milwaukee and much of the surrounding area. According to her official House website, Representative Moore  is currently a member of the House Committee on Budget, and also has a record of supporting concerns related to health, veterans and women. Approximately two-thirds of adults with IBS are female. Representative Moore was also a co-sponsor of the previous version of this legislation, HR 2239, in the 112th Congress.

If you are a constituent of Representative Brownley, Representative Rush, or Representative Moore, please take a few minutes to write or call with your thanks for their support of HR 842.

In officially supporting HR 842, Representative Brownley, Representative Rush, and Representative Moore join the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8). U.S. citizens residing in the districts of Representative Brownley, Representative Rush and Representative Moore’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.

 

ACTION ALERT: Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013 (HR 842)

On February 26, 2013, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013, also known as HR 842, was introduced in the United States House of Representatives. HR 842 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. 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.

Like the previous bill, HR 842, is supported by members of both political parties and 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.

IBS Impact thanks IFFGD for its work 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 the previous bill, HR 842, was introduced by Representative F. James Sensenbrenner, Jr. (R-WI-5) and is currently cosponsored by Representative James Moran (D-VA-8)  In order to pass the House of Representatives in this Congress, it needs support from 218 Representatives, a majority of the House, by the end of the current 113th Congress in December 2014. During 2011-2012, the previous bill received sponsorship or cosponsorship from 17 Representatives in 12 states and both political parties. Some are no longer members of the House of Representatives, but IBS Impact hopes that previous cosponsors who are still in office will continue their support and encourage their colleagues to sign on as well. Now affected people and our supporters must show Congress that this is important enough to pass and enact.

For more information, see IFFGD’s link at

http://www.iffgd.org/hr842action

The text of the bill, the current status and cosponsors can also be accessed directly at any time through THOMAS, the Library of Congress database HR 842 (2013-2014).

IFFGD has set up a Capwiz alert on its page linked above. Capwiz is a software program commonly used by organizations and advocacy groups to mobilize support for legislation related to their causes. To use this tool, type in your zipcode. In some locations where parts of a single zipcode may fall in different districts, you will be prompted to type in the exact street address. Capwiz will automatically identify the correct Representative for that address and generate a partial form letter composed by IFFGD that explains HR 2239 and asks for the Representative’s support. You will have the opportunity to add comments of your own.

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 842 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.

Please sign your real full name, physical address and email address in the Capwiz form prior to submitting your email. A message on that screen states that contact information “will not be used for any purpose other than to identify you to the recipient,” your Representative’s office.  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. Capwiz is quick, easy and safe. However, if you prefer not to use IFFGD’s Capwiz link, you can find your Representative’s contact information on
http://www.congress.org
or his or her official website by searching his or her name in any Internet search engine. 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.

If writing or calling directly, 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 842, 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. So does familiarity with your Representative’s record on or interest in other health issues, 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 2012 elections and redistricting, you may have a different Representative than before.

You do not have to be an excellent writer, 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 conversaation 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.