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

March 25, 2013

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

March 18, 2013

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 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.

 


Irritable Bowel Syndrome (IBS) and Coexisting Conditions or Non-GI Symptoms Revisited

March 11, 2013

March is Endometriosis Awareness Month and this past week was National Sleep Awareness Week, so it seems a good time to remind readers that irritable bowel syndrome is not necessarily just about abdominal pain or discomfort, constipation, diarrhea, bloating, excess gas or any other commonly mentioned digestive symptom. As IBS Impact wrote on September 6. 2011, in a post that remains frequently viewed by blog visitors, many people with IBS also have one or more medical conditions known to commonly overlap with IBS and/or related non-gastrointestinal symptoms that may or may not indicate a specific diagnosable disorder.

For example, an article on the IFFGD website adapted from their Publication#207  by Ami Sperber, MD of Ben-Gurion University of the Negev in Israel, notes several additional overlapping conditions and cites the overlap with IBS and fibromyalgia to be around 35-70% and the percentage of people with chronic fatigue syndrome (also known as chronic fatigue immune dysfunction syndrome or myalgic encephalomyelitis), studied who also have irritable bowel syndrome ranges from 58-92%  Also, in the December 2011 University of North Carolina Center for Functional GI and Motility Disorders “Evening with the Experts” online chat entitled, “Beyond the Bowel,” Olafur Palsson, PsyD, states that studies show that people with IBS report consistently higher numbers of non-GI symptoms compared to healthy controls, that about one-third of people with IBS report a significant number, and that they visit doctors about twice as often, mostly not for bowel complaints.

Endometriosis and sleep disturbances are just two of many conditions or symptoms that can coexist with the gastrointestinal symptoms of IBS in some affected people. Endometriosis is a disorder in which endometrial tissue, or the uterine lining, is found outside the uterus, frequently attached to other organs. As the tissue responds to the different stages of a woman or girl’s menstrual cycle in a similar way to the endometrium in the uterus, this can cause chronic pelvic pain, fatigue, painful menstruation, urination or intercourse,  possible infertility, gastrointestinal disturbances and other symptoms. According to“Endometriosis and IBS” by the Gastrointestinal Society in Canada, endometriosis is frequently misdiagnosed as IBS or can coexist with IBS. The Endometriosis Association in the U.S. estimates that there are at least 6.3 million women and girls with endometriosis in the U.S. and 1 million in Canada, Endometriosis UK cites 1.5 million in the UK, Endometriosis New Zealand cites “more than one in 10” among secondary school girls, and the Endometriosis Association of Ireland cites 176  million worldwide. The Jean Hailes Foundation for Women’s Health also provides information on endometriosis in Australia, although no statistics for that country were readily found. Perhaps some readers of this blog will find useful information, support or assistance from these resources.

As for sleep disturbances in IBS, Dr. Sperber’s commentary linked above details some similar characteristics found among functional disorders like IBS. IBS is the most common functional disorder in the gastrointestinal category. According to him, those affected by this group of conditions frequently report poor quality of sleep, and objective research has shown evidence of fatigue and “non-restorative”sleep, meaning individuals not feeling rested despite having slept. In his video linked above, Dr. Palsson states that about 67% of people with IBS studied reported sleep difficulties of some sort. About.com IBS Guide, Barbara Bradley Bolen, PhD’s  recent post for National Sleep Awareness Week  links to some of her past discussions of sleep research and IBS and invites reader feedback in polls.

The IBS Impact founder is a person with IBS who happens to experience many non-GI symptoms apparently related to IBS, and has found resources to deal with them even more limited than those for IBS in general, cumulatively increasing the burden of IBS. Thus, from IBS Impact’s inception, we committed to increasing awareness of this less well-known aspect of IBS as well. IBS Impact urges people with IBS to report all symptoms to their health care providers, not just the well-known “textbook” ones. An overlapping diagnosis and treatment may be available. Even if this is not the case, some physicians may become more aware of the range of symptoms and issues that people with IBS may experience. IBS Impact also calls on clinicians and researchers to ask their patients about non-Rome criteria or extraintestinal symptoms, to design their studies and surveys in ways that accommodate such responses, and to strengthen their collaboration with researchers of overlapping conditions in order to accelerate better scientific answers, treatments and social supports for all who are affected by these often debilitating disorders.

For reputable resources for some overlapping conditions, please see the links page on the IBS Impact main website.


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

March 2, 2013

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.

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.