UNC Online Chat:”Partner Burden” and Functional GI Disorders on April 3, 2012

March 27, 2012

The University of North Carolina Center for Functional Gastrointestinal and Motility Disorders has announced the next online chat in its “Evening with the Experts” series. It will take place Tuesday, April 3, 2012 from 8:00-10:00 p.m. Eastern time.  Reuben Wong, MD, of the National University Hospital in Singapore will present on the topic of “Partner Burden” and functional gastrointestinal disorders like IBS.

People with IBS, and/or their concerned family members and friends are encouraged to make time to attend and participate in this and other UNC chats, which are an excellent, unique opportunity to interact directly with leading researchers, ask questions and give them feedback about our needs and concerns.

To participate in this or any UNC chat, go to the Center home page about 10 minutes before the starting time, click on the chat icon and follow the instructions given there. Many past video presentations are archived on the Center website, but the actual chat sessions are conducted live and are not archived.

Those who are unfamiliar with UNC’s online chat series may also find this previous post by IBS Impact on July 29, 2011 to be of interest.

Readers who are interested in the topic of spouses/partners or other relatives of people with IBS may also find the family and friends page of the IBS main website to be helpful. It contains original articles written especially for IBS Impact by each author and is expected to be updated shortly with additional articles. We encourage new submissions for this section from a range of perspectives: people with IBS, family and friends and professionals in the IBS community. Please use the contact link in that section if you are interested in contributing an article or have other suggestions that may be useful to people with IBS and our families or friends.


The Financial Realities of Irritable Bowel Syndrome (IBS)

March 19, 2012

With the very specific niche of the IBS Impact site and blog, we are faced with the questions of why people with IBS and those who support us should become involved in awareness and self-advocacy efforts and why people without IBS should care. Why does IBS matter as a broader societal issue rather than as solely a personal and private health problem? There are many possible answers to that, but one major reason why it matters is that IBS is an astoundingly expensive disorder that is already affecting society in many countries.

Many people who have dealt with moderate to severe IBS, for times ranging from a few years to a few decades, have gained enough experience to realize some of the ongoing costs, as they go through diagnosis and the trial and error of available treatments:  perhaps opinions from and stints with multiple conventional, complementary and/or mental health care providers, prescriptions, over the counter medications, supplements, special food for various diets, extra personal hygiene items, IBS related books and CDs. The list of possibilities goes on. Some of these expenses are not covered by health insurance in the United States or by universal health systems in other countries, and are out of pocket for those of us with IBS or our families. Part of this common experience is described by the 2009 report of the comprehensive and ongoing Unmet Needs Survey conducted by IFFGD and the University of North Carolina Center for Functional Gastrointestinal and Motility Disorders. This group of results involves 1966 respondents, primarily from the U.S. and Canada, but also several other nations. The report lays out several categories of interventions and types of health providers that study participants have used, either currently or in the past. There have been many other published studies and reports, some dating as far back as over two decades ago, on health care usage and the economic impact of IBS.

According to IFFGD’s Reporter’s Guide to Irritable Bowel Syndrome (see page 2), IBS is the most common diagnosis made by gastroenterologists and the seventh most common by physicians overall. It’s also generally accepted among researchers that the vast majority of people with IBS are not even diagnosed (77% according to a  2007 publication by Anthony Lembo, MD of Beth Israel Deaconess Hospital in Boston, Massachusetts, and 90% according to the Gastrointestinal Society in Canada’s 2009 article on its website). But those known to have IBS still statistically use more medical care than the general population. Aside from citing various U.S. studies, Dr. Lembo provides a detailed analysis from a national survey in the Netherlands, suggesting that this is not just a North American phenomenon. Dr Lembo addresses both GI and non-GI symptoms of IBS.  In his December 2011 presentation on non-gastrointestinal symptoms in IBS, Olafur Palsson, PsyD of UNC states that about one-third of people with IBS experience significant non-GI symptoms and that that statistically, this subset uses twice as much health care as others with IBS, mostly not for bowel complaints. This, Dr Palsson says, may lead people to accumulate diagnoses, treatment, tests, unneeded surgery and side effects.

In a 2003 abstract of a systemic literature review that has since been widely quoted elsewhere, researchers at the VA Center for Practice Management and Outcomes Research and  the University of Michigan write, “The mean direct costs of irritable bowel syndrome management were reported to be UK pound sterling90, Canadian$259 and US$619 per patient annually, with total annual direct costs related to irritable bowel syndrome of pound sterling45.6 million (UK) and $1.35 billion (USA). Direct resource consumption of all health care for irritable bowel syndrome patients ranged from US$742 to US$3166. Productivity costs ranged from US$335 to US$748, with total annual costs of $205 million estimated in the USA. Annual expenditure for all health care, in addition to expenditure limited to gastrointestinal disorders, was significantly higher in irritable bowel syndrome patients than in control populations.”  Direct costs, as explained by the Gastrointestinal Society at the link in the third paragraph of this post, includes expenses like diagnostic testing, prescriptions, referrals to other professionals, and emergency room visits, which are all itemized in the article. According to the Gastrointestinal Society’s 2003 source, this totals an estimated $131 million per year in the province of Ontario alone.  In Canada and other countries with publicly financed universal health care, direct costs are expenses to the system. In the U.S., with decentralized health care, the costs may variously fall on individuals, employers, private and/or government insurance.

Indirect costs include the economic impact on employers and communities of people who are not able to work or are less productive when doing so. According to the Unmet Needs Survey linked in the second paragraph of this post, 13% of all respondents are not employed because of health. For those with severe IBS, the figure is 30%.  The Gastrointestinal Society article is more specific, citing various studies that employee absenteeism is three times that of those without functional GI disorders, similar to rates for the common cold, and various types of negative impact on work, such as quitting or losing a job, changing schedules, reducing hours and/or turning down a promotion. These statistics range from 8-26% in the various categories, with most individual categories in the double digits. Dr. Lembo’s article includes similar issues and statistics.

From observation in IBS community, it appears that most people who are significantly hindered by IBS do wish to and make an effort to maintain or regain an active, constructive quality of life, but this is an ongoing challenge. As discussed on this blog on January 10, 2012, a Rome Foundation report from mid-2011 states that the percentages of moderate and severe IBS are actually somewhat higher than the same authors believed in the recent past.

All this is part of why IBS advocacy and awareness are important and why people with IBS and people without it should all care.  Investments of time, effort, funding and passion now will increase the chances of a payoff later through medical and social advances that will allow more of us with IBS  increased physical, emotional and social comfort and productivity in our families, schools, workplaces and communities. When we have reliably and widely effective treatment interventions and the community resources that many other health and disability groups can take for granted, perhaps more of us can stop draining our own bank accounts and those of society at large in our efforts to live well with IBS.


Online Clinical Trial: Self-Help Cognitive Behavioral Therapy for IBS

March 12, 2012

UPDATE July 2012: The specific study mentioned below is now closed. However please see the last paragraph of this post for additional resources on clinical trials and follow this blog, the IBS Impact main website and social media for new studies as we learn of them.

The following study is posted with the cooperation of and at the request of the University of Pennsylvania research team given below. Please contact them directly if you are interested in participating or have any questions.

If you have a current diagnosis of IBS, are 18 years of age or older, are not pregnant and are not currently diagnosed with any other gastro-intestinal disorder (e.g. Crohn’s disease, celiac disease, ulcerative colitis or gastro-esophageal reflux disease) you are eligible to participate in a University of Pennsylvania research study about the effectiveness of a self-help workbook for IBS. There is no cost for participation and no travel is necessary.

If you would be interested in enrolling in this treatment study, please go to this weblink to read the consent form and complete an initial set of questionnaires:

https://www.surveymonkey.com/s/RRHXS73

 If you have additional questions, please e-mail the study coordinator Elisabeth Ertel at Ertel@sas.upenn.edu, or contact the study PI, Dr. Melissa G. Hunt by phone: 215-898-6478  or e-mail: mhunt@psych.upenn.edu

Previous posts on open clinical trials for IBS can be found by clicking the clinical trials category in the blog archives in upper right sidebar of this blog. We also have a page for IBS studies on the main IBS Impact site.The research and links pages and the July 26, 2011 post provide additional general resources.


Representatives Hayworth of New York and Moore of Wisconsin Co-Sponsor HR 2239 for Functional Gastrointestinal and Motility Disorders

March 9, 2012

UPDATE: HR 2239 did not pass in the 112th Congress. In February 2013, the Act was reintroduced in the 113th Congress as HR 842. Please see the March 2, 2013 post or click on the HR 842 category on the blog sidebar for updated information.

According to THOMAS, the Library of Congress legislative database, and IFFGD, Representative Nan Hayworth (R- NY-19) and Representative Gwen Moore (D-WI-4) have signed on as cosponsors to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011.

Representative Hayworth’s district, the 19th Congressional District of New York, encompasses northern Westchester and northern Rockland Counties, as well as  parts of Orange and Dutchess Counties

According to her official House website, Representative Hayworth is a physician and businesswoman and a member of several Congressional committees and caucuses, including ones for Members of Congress who are doctors, who are women, and multiple ones concerned with military and military family issues. Approximately two-thirds of adults with IBS are 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.

Representative Moore’s 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 the Democratic co-chair of the Congressional Women’s Caucus and also has a record of supporting concerns related to women, health and veterans.

If you are a constituent of Representative Hayworth or Representative Moore, please take a few minutes to write or call her with your thanks for her support of HR 2239.

In officially supporting HR 2239, Representative Hayworth and Representative Moore join the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8), Representative Peter Welch (D-VT), Representative Elton Gallegly (R-CA-24), and Representative Jesse Jackson, Jr. (D-IL-2), Representative Tammy Baldwin, (D-WI-2) and Representative Maurice Hinchey (D-NY-22). U.S. citizens residing in the districts of Representative Hayworth 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. If you would like to see a list of the members of that Subcommittee, click here and scroll down to the fourth subcommittee listing.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 2239 and you have not contacted him or her recently to ask for his or her support,  please see these previous posts from July 6, 2011 and March 6, 2012 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.

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 2239 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 2239.

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 2239 will most likely not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 219 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 112th,  the necessary number of sponsor/cosponsors must be reached by December 2012. Beginning in January 2013, the Congressional membership will be different as a result of the upcoming 2012 elections. Thus, a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering cosponsors anew. 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 Yahoo discussion group for further updates on HR 2239 as they occur.


New Advocacy Tools and IFFGD/DHA Advocacy Day 2012 For Functional GI and Motility Disorders

March 6, 2012

IFFGD has let us know that new online tools have been installed on its website to make it quicker and easier for U.S. citizens to email Congress to advocate for HR 2239, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act. HR 2239 is currently under consideration in the U.S. House of Representatives.

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, go to the Capwiz link on the IFFGD website and type in your zipcode. In some geographical areas 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 some brief 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 2239 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/potential voter in the district and they have a means to reply, although a response may take a while. Legislators generally do not accept communications from those outside their own districts. However, IBS Impact encourages readers to spread the word to U.S. citizen relatives, friends, coworkers and others who have been supportive about IBS needs and ask them to contact their own Representatives. Using Capwiz is very quick and easy.

For a real life example of a concerned parent’s efforts to spread awareness of functional gastrointestinal disorders and HR 2239, see the February 14, 2012 post. For the latest status update on the progress of HR 2239, see the December 18, 2011 post. For background information on HR 2239, including links to the full text of the legislation, see the July 6, 2011 post.

For readers who are interested in becoming more deeply involved in efforts to pass HR 2239, IFFGD’s grassroots arm, the Digestive Health Alliance, has also announced Advocacy Day 2012, which will take place in Washington, DC on June 19-20. Participants will join IFFGD/DHA staff and functional GI and motility researchers in meeting directly with legislators regarding HR 2239 and/or other important digestive health issues The advocacy activities are free of charge and two 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. Registration for the event 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 and methods that interest them. Add your voice to those in the IBS and functional gastrointestinal and motility disorder community who are already speaking out. If you have contacted your Representative before with no results, don’t stop, but try again. Every person, collectively, makes a difference, on HR 2239 and other issues of concern to our community.


UNC Online Chat:”Answers to Your Questions About IBS and Functional GI Disorders” on March 6, 2012

March 1, 2012

The University of North Carolina Center for Functional Gastrointestinal and Motility Disorders has announced the next online chat in its “Evening with the Experts” series. It will take place Tuesday March 6, 2012 from 8:00-10:00 p.m. Eastern time.

Douglas Drossman, MD, FACG,  will be available for an open discussion of “Answers to Your Questions About IBS and Functional GI Disorders.” Dr. Drossman, who co-founded the Center and recently retired as its co-director, is currently President of the Rome Foundation, the Drossman Center for the Education and Practice of Integrated Care, and Drossman Gastroenterology PLLC.

This month’s chat announcement makes a special note that, unlike the usual practice for most UNC chats, there will not be an introductory video this month. Dr. Drossman will take questions for the entire session. Therefore, the Center encourages attenders to log in to the chat promptly. Many past video presentations are archived on the Center website, but the actual chat sessions are conducted live and not archived.

People with IBS, and/or their concerned family members and friends are encouraged to make time to attend and participate in this and other UNC chats, which are an excellent, unique opportunity to interact directly with leading researchers, ask questions and give them feedback about our needs and concerns.

To participate in this or any UNC chat, go to the Center home page about 10 minutes before the starting time, click on the chat icon and follow the instructions given there.

Those who are unfamiliar with UNC’s online chat series may also find this previous post by IBS Impact on July 29 to be of interest.