Representative Moore of Wisconsin Co-Sponsors HR 1187 for Functional Gastrointestinal and Motility Disorders

November 26, 2017

According to IFFGD and the official Congressional legislative database Congress.gov, Representative Gwen Moore (D-WI-4) signed on earlier this month as a co-sponsor of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Moore is serving her seventh term 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. 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. Approximately two-thirds of adults with IBS are female. Representative Moore was also a co-sponsor of the previous versions of this legislation, HR 2239, in the 112th Congress (2011-2012), HR 842 in the 113th Congress (2013-2014) and HR 2311 in the 114th Congress (2015-2016) which did not pass. IBS Impact thanks her for her long support of the functional gastrointestinal disorders community for four consecutive Congresses since the inception of the legislative effort for this Act.

In officially supporting HR 1187, Representative Moore joins Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, and co-sponsors, Representatives Mark Pocan (D-WI-2), Eliot Engel (D-NY-16), Dave Loebsack (D-IA-2), Alcee Hastings (D-FL-20) Tom Suozzi (D-NY-3), and Ron Kind (D-WI-3)  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 1187, please see the previous post from March 21, 2017 for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2016 elections, district boundaries that may have been re-drawn, or if you have moved.

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

HR 1187 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 1187.

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

It is IBS Impact’s understanding that HR 1187 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 115th,  the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012, HR 842 in 2014 and HR 2311 in 2016. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 1187 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


Veterans with IBS and Functional Gastrointestinal Disorders 2017

November 11, 2017

Today, November 11, is Veterans Day in the U.S., and a good time to 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 six years ago by the U.S. Department of Veterans Affairs of irritable bowel syndrome and functional gastrointestinal disorders as presumptive service connected disabilities for Gulf War veterans. Service in Afghanistan was not originally included in the 2011 regulations, but has since been added.

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

As this blog reported on January 20, 2014, the depth of need for further awareness, services, support, and research in the veteran community is not necessarily well known even within the Department of Defense or other military entities, the media or the general public. The post linked in the second paragraph of this post about the recognition of IBS and other functional GI disorders as presumptive service-connected disabilities, more than six years after original publication, has continued to receive consistent hits from readers on most days. By an extremely wide margin, from the inception of this blog in mid-2011 through 2015, it was the #1 most read individual post, of over 200 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-to-date lists. 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.


Representatives Suozzi of New York and Kind of Wisconsin Co-Sponsor HR 1187 for Functional Gastrointestinal and Motility Disorders

November 2, 2017

According to IFFGD and the official Congressional legislative database Congress.gov, Representative Tom Suozzi (D-NY-3) and Representative Ron Kind (D-WI-3) signed on recently as  co-sponsors of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Suozzi is serving his first term in  the House of Representatives. His district, the 3rd Congressional District of New York, currently encompasses most of the North Shore of Long Island in  northern Nassau and northwestern  Suffolk Counties,  including Huntington, Northport, Commack, Dix Hills, Plainview, Hicksville, Syosset, Glen Cove, Roslyn, Port Washington, and Great Neck, as well as a northeastern portion of the New York City borough of Queens, including the Little Neck, Whitestone, Glen Oaks, and Floral Park communities. Representative Suozzi supports a range of health and veterans’ issues and is currently a member of the Congressional caucuses and bipartisan task forces for several other specific chronic medical conditions, including the Military Mental Health Caucus as seen on his official house website. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are also at disproportionately high risk for functional gastrointestinal disorders like IBS, which are already very common in the general population.

Representative Kind is serving his eleventh 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.  According to his official House website, 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. Representative Kind also previously co-sponsored HR 2239 in the 112th Congress (2011-2012) and HR 842 in the 113th Congress (2013-2014), and HR 2311 in the 114th Congress (2015-2016), which did not pass. IBS Impact thanks him for his long support of the functional gastrointestinal disorders community for four consecutive Congresses since the inception of the legislative effort for this Act.

In officially supporting HR 1187, Representatives Suozzi and Kind join Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, and co-sponsors, Representatives Mark Pocan (D-WI-2), Eliot Engel (D-NY-16), Dave Loebsack (D-IA-2), and Alcee Hastings (D-FL-20).  If you are a constituent of any of these legislators, please take a few minutes to call, write, or contact him on social media to thank him for his  support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2016 elections, district boundaries that may have been re-drawn, or if you have moved.

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

HR 1187 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 1187.

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

It is IBS Impact’s understanding that HR 1187 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 115th,  the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012, HR 842 in 2014 and HR 2311 in 2016. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 1187 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


Thoughts for Invisible Disabilities Week, October 15-21 2017

October 15, 2017

The Invisible Disabilities Association, a not-for-profit organization in Colorado founded two decades ago by the spouse of an invisibly disabled person,  has designated this week as its annual Invisible Disabilities Week. An invisible disability is any disability or ongoing medical condition that may have disabling effects that may not be readily apparent to casual observers. While any disability, visible or invisible, may present physical, psychological or societal barriers at least some of the time,  there often are specific challenges to others’ awareness and understanding when invisible disabilities cannot be seen.

Many of us with irritable bowel syndrome (IBS) know this well. Almost all of us can relate to one or more of the following questions or considerations at some point in our journey with IBS. Do we tell family members, friends, acquaintances, employers, teachers and classmates about IBS? How much and how often do we discuss it if we do? Do they believe us? Do they– and medical professionals– believe IBS pain, exhaustion, GI symptoms, stress, commonly co-occurring conditions like anxiety or depression and other non-GI symptoms are real and worthy of help? Why do they say things like, “You look good,” when we’re in bad shape? Do they really get it? If they do get it, will they continue to support us months or years later when IBS, as a chronic, incurable condition, doesn’t go away? If they don’t get it, is it worth trying to educate or not? Why are there not better medical options for our poorly understood condition?  Why don’t we have more resources related to X? Why doesn’t some celebrity come along and donate millions for a cure?

It is well-known in the IBS community, both anecdotally and through research, that many  people with IBS are isolated. Some do not have a diagnosis or support for years. Some withdraw from discussing IBS with others, inside or outside of the IBS community, because of negative interactions or  disappointing symptom management results. Still others seek information and help from various IBS forums, but unless they have other disabilities or medical conditions, some of which commonly overlap with IBS and others which are separate, they often are not aware of the common, similar experiences we share with groups affected by other invisible disabilities and health conditions. While gaining that knowledge may not help the medical situation per se, some people with IBS gain perspective and comfort in knowing that we are not alone and in finding a certain solidarity with other health communities.

According to the IDA, because there are so many types and levels of invisible disabilities and individual people are also affected quite differently, the organization chooses not to list or focus much on specific diagnostic labels. Most of their resources and awareness materials are applicable to a wide range of people with an equally wide range of invisible disabilities.

IBS Impact encourages readers to check out the site and see if anything is helpful to them. Also, for those so inclined, take on the challenge with which the IDA presents us this week, and talk to people or share something on social media about IBS.

 


IFFGD Advocacy TweetChat, September 5, 2017, Prepares for Virtual Advocacy Day 2017

August 30, 2017

The International Foundation for Functional Gastrointestinal Disorders (IFFGD) has announced that it will be holding a Tweet Chat beginning at 1:00 PM Eastern Time on Tuesday, September 5, 2017. This is an opportunity for people with functional gastrointestinal and motility disorders and those who support us to discuss advocacy goals for our community. This is in preparation for Virtual Advocacy Day 2017 the following week, Tuesday, September 12, 2017. Virtual Advocacy Day is IFFGD’s annual day on which it encourages U.S. citizens to contact their members of the federal House of Representatives in support of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act. (HR 1187). For information on HR 1187, see the March 21, 2017 and July 14, 2017 posts. For information on Virtual Advocacy Day, see IFFGD’s page linked here.

IFFGD’s Twitter handle is @IFFGD and the chat will be using the following hashtags #IFFGDCHAT, #HR1187 and FGIMD.

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


Representative Hastings of Florida Co-Sponsors HR 1187 for Functional Gastrointestinal and Motility Disorders

July 14, 2017

According to IFFGD and the official Congressional legislative database Congress.gov, Representative Alcee Hastings (D-FL-20) signed on yesterday as a co-sponsor of of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Hastings is serving his thirteenth term in the House of Representatives. His current district, the 20th Congressional District of Florida, encompasses parts of Broward and Palm Beach Counties, including parts of Miramar, Fort Lauderdale, and West Palm Beach.  Representative Hastings has a long record of supporting a wide range of health issues and is currently a member of the Congressional caucuses for numerous other specific chronic medical conditions and disabilities as seen on his official house website.

In officially supporting HR 1187, Representative Hastings joins Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, and co-sponsors, Representatives Mark Pocan (D-WI-2), Eliot Engel (D-NY-16),and Dave Loebsack (D-IA-2)  If you are a constituent of any of these legislators, please take a few minutes to call, write, or contact him on social media to thank him for his  support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2016 elections, district boundaries that may have been re-drawn, or if you have moved.

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

HR 1187 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 1187.

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

It is IBS Impact’s understanding that HR 1187 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 115th,  the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012, HR 842 in 2014 and HR 2311 in 2016. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 1187 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


Representatives Engel of New York and Loebsack of Iowa Co-Sponsor HR 1187 for Functional Gastrointestinal and Motility Disorders

June 28, 2017

According to IFFGD and the official Congressional legislative database Congress.gov, Representative Eliot Engel (D-NY-16) and Representative Dave Loebsack (D-IA-2)  signed on earlier this month as co-sponsors of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Engel is serving his sixteenth term in the House of Representatives. His current district, the 16th Congressional District of New York, encompasses the northern portion of the Bronx, which is one of the boroughs of New York City, as well as parts of suburban southern Westchester County. Representative Engel is also a current member of the Subcommittee on Health, where HR 1187 is  under consideration.  See the linked website for a list of all current members. Representative Engel has a long record of supporting  a wide range of veterans’ issues and health issues, as seen on his official house website. 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 Loebsack is serving his sixth 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.

In officially supporting HR 1187, Representatives Engel and Loebsack join Representative F. James Sensenbrenner, Jr. (R-WI-5) , who is the initial sponsor and Mark Pocan (D-WI-2) ,the initial co-sponsor. All of these Representatives also supported the previous version of this Act, HR 2311, in 2015-2016, and Representative Sensenbrenner has been the initial sponsor for all four versions of the Act since 2010. If you are a constituent of any of these legislators, please take a few minutes to call, write or contact him on social media to thank him for his continuing support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2016 elections, district boundaries that may have been re-drawn, or if you have moved.

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

HR 1187 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 1187.

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

It is IBS Impact’s understanding that HR 1187 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 115th,  the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012, HR 842 in 2014 and HR 2311 in 2016. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 1187 as they occur. Links to the social media sites can be found on the right sidebar of the blog.