The Americans With Disabilities Act (ADA) and Irritable Bowel Syndrome (IBS)

July 30, 2012

July 26, 2012 marked the 22nd anniversary of the signing of the Americans with Disabilities Act of 1990 (ADA). This law was the result of years of advocacy and collaboration by numerous individuals, grassroots groups and organizations representing people with all types of disabilities, their family members, educators, health and human service professionals in the disability field, as well as prominent legislators and government officials from both major political parties, many of whom identified themselves or close family members as people with disabilities. At the time the ADA was originally signed, it was estimated, in the text of the law itself, that there were 43 million people with disabilities in the United States.  Figures released just this month from the most recent national census in 2010 now put the estimate at 56.7 million. (see page 4) The ADA was not the first national disability rights law in the U.S, nor has it been the last, but more than two decades later, it remains one of the more comprehensive ones.

Contrary to some popular misconceptions, the ADA does not include an exhaustive list of eligible disabilities.  A person with a disability is intentionally defined broadly as a person who has a “physical or mental impairment that substantially limits one or more major life activities” or who has “a record of such an impairment,”  in the past,  or who may experience potential discrimination because of being “regarded as having such an impairment,” whether the person actually has one or not.

In 2008, after 18 additional years of sustained advocacy throughout the U.S., the ADA Amendments Act was signed, in order to clarify the intent of the original law, as its protections had since been narrowed and eroded by court decisions. Among other points, these amendments made it clearer that the ADA also covers potentially disabling conditions that may come and go episodically, as well as conditions that impair major bodily functions, such as digestion and bowel function. The amendments also state that the extent of disability is to be determined by when it is active without regard to mitigating measures like medication or other types of assistance that might appear to improve or resolve the disability. All of these provisions in the amendments reinforce that conditions like IBS are potential disabilities under the law.

The law prohibits discrimination against “qualified individuals with disabilities” in five broad areas known as “titles.” Title I is for employment, covering all employers with 15 or more employees; state or local disability laws sometimes set lower numbers. Title II is for public services on the state or local government level, such as libraries or motor vehicle departments, police or other emergency services, courthouses and so on, including most public transportation.  Title III is for public accommodations or services owned by private entities such as stores, restaurants, hotels, banks, theaters and other recreational venues, hospitals, doctors, lawyers and so on. Title IV is for telecommunications access for those with hearing or speech impairments, and Title V is composed of miscellaneous minor provisions. The law requires that covered employers or other entities make “reasonable accommodations,” if necessary, for people with disabilities if doing so would not pose an “undue hardship” to the employer or entity. What is considered “reasonable” or “undue hardship” is also meant to be flexible enough to encompass a wide variety of individual situations. A large corporate employer or chain of retail stores would generally be expected to have more resources to provide accommodations or to remove barriers that make a physical premises or service inaccessible than a smaller employer or business.

The law presumes that the person with the disability is the one with the right to decide whether or not to disclose the disability and the responsibility to ask for any needed accommodations. Employers are only allowed to require medical exams after hiring if these are directly related to the “essential functions” of a position and are uniformly asked of all employees in a similar class of positions. Any disability information disclosed is considered confidential, to be shared only with those with a legitimate need to know, but obviously, individuals who choose not to self-identify as people with disabilities in the first place or to indicate any accommodations that may or may not be needed cannot claim legal protection under the ADA.

The following link is the full text of the Americans with Disabilities Act, as amended. Another article on work and school, disability benefits and the ADA is on the advocacy page of the IBS Impact main site, which also contains  links to articles on the subject by Dr. Barbara Bradley Bolen, the About.com IBS Guide. Scroll down on the linked page to find it.

Please note that disability-related access to federal government entities, airlines, housing, communications and video, and the education of children with disabilities from preschool through high school are primarily covered by different U.S. laws, though there may be some overlap in a given situation. The ADA also does not affect eligibility for disability benefits. Please see the August 12, 2011 post for more information on U.S. veteran disability compensation for IBS and other functional GI disorders and the January 17, 2012 post for a brief discussion of U.S. Social Security and IBS.

For our readers outside the U.S., links to disability information in several English-speaking countries are available on the links page of the main IBS Impact site.  Some of these nations also have their own disability rights laws and IBS Impact encourages your input on your experiences, as well as resources and issues of concern specific to your countries.

Some members of IBS Impact, including its founder, have personal and/or professional experience with the broader cross-disability advocacy community and would be pleased to share further information and resources and to answer general questions on this blog,  although for those with actual current legal situations of concern, please consult an attorney experienced in disability law in your locality. IBS Impact was founded with the hope that the IBS community will one day emulate the cross-disability, bipartisan coalitions, stretching back to as early as the 1960s,  that made legislative and social advances like the Americans with Disabilities Act possible. May people with IBS become strong and visible advocacy voices for ourselves and our needs around the globe.


Representative Boren of Oklahoma Co-Sponsors HR 2239 for Functional Gastrointestinal and Motility Disorders

July 23, 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.

On the heels of two other new co-sponsors the previous week, Representative Dan Boren (D-OK-2) has become a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011. The recent momentum in new support is gratifying.

Representative Boren represents Oklahoma’s 2nd Congressional District, covering about a quarter of the state in eastern Oklahoma. This large district includes part of Rogers County and all of Adair, Atoka, Bryan, Cherokee, Choctaw, Coal, Craig, Delaware, Haskell, Hughes, Johnston, Latimer, LeFlore, Mayes , McCurtain, McIntosh, Muskogee, Nowata, Okfuskee, Okmulgee, Ottawa, Pittsburg, Pushmataha, and Sequoyah Counties.

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

In officially supporting HR 2239, Representative Boren joins 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),  Representative Maurice Hinchey (D-NY-22),  Representative Nan Hayworth (R-NY-19), Representative Gwen Moore (D-WI-4), Representative Ed Perlmutter (D-CO-7), Representative David Price (D-NC-4), Representative Mazie Hirono (D-HI-2) and Representative Ron Kind (D-WI-3). U.S. citizens residing in the districts of Representative Boren’s colleagues listed here, please thank them as well.

According to the information on THOMAS, the Library of Congress legislative database, 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.


Representatives Hirono of Hawai’i and Kind of Wisconsin Co-Sponsor HR 2239 for Functional Gastrointestinal and Motility Disorders

July 16, 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.

Last week IFFGD reported that Representative Mazie Hirono (D-HI-2) and Representative Ron Kind (D-WI-3) have signed on as cosponsors to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011.

Representative Hirono’s district, the 2nd Congressional District of Hawai’i, encompasses the northern and western parts of the island of Oahu, and the islands of Hawai‘i,  Kaua‘i, Lana‘i, Maui, Molokai, and Kaho‘olawe, and the Northwestern Hawaiian Islands. She is a member of the House Rural Health Care Coalition. Representative Kind’s 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. Both also have 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

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

In officially supporting HR 2239, Representative Hirono and Representative Kind 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),  Representative Maurice Hinchey (D-NY-22),  Representative Nan Hayworth (R-NY-19), Representative Gwen Moore (D-WI-4), Representative Ed Perlmutter (D-CO-7), and Representative David Price (D-NC-4). U.S. citizens residing in the districts of Representative Hirono and 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. 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.


Clinical Trial: Lexicon Pharmaceuticals Investigational Medication for IBS-D

July 11, 2012

UPDATE: As of November 2012, there is an additional dedicated site to inquire about participating in this study at http://www.ibsdstudy.com Thank you to Western States Clinical Research for this updated information.

 This study is posted at the request of Western States Clinical Research, Inc. in Wheat Ridge, Colorado, one of many participating study sites throughout the U.S.

This Phase II study for Lexicon Pharmaceuticals investigational medication, LX-1033, (3 doses over 4 weeks or placebo) is seeking men and women ages 18-70 who have had IBS symptoms for at least 6 months, diarrhea predominant at least 75% of the time symptoms are active, and moderate abdominal pain. Potential volunteers near Western States Clinical Research may call 303-940-0909 or contact at  http://www.wscrinc.com  Accepted participants will receive relevant medical exams and study medication free of charge and be compensated for time  and travel. Interested people in other U.S. locations, see Clinical Trials.gov Lexicon Phase II LX-1033  for other sites involved in this study.

Previous posts on open clinical trials for IBS can be found by clicking the clinical trials category in the blog archives on the upper right sidebar of this blog. We also have a page for IBS studies on the main IBS Impact site, which has just been updated as of July 2012 The research and links pages and the July 26, 2011  post provide additional general resources.

We welcome researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies they wish to be considered for posting. Contact links for the founder/listowner and the webmaster can be found on the home page of the main IBS Impact website.

IBS Impact makes these study announcements available for general information,  and encourages its members and site visitors to make their own individual, informed choices about their potential participation in any study.  IBS Impact, as an entity, is not directly affiliated with any research sponsor and receives no funding from any source for studies or links we feature on this blog, the main site or social media.


Non-Partisan Information on U.S. Health Reform

July 3, 2012

As many readers are undoubtedly already aware, last week, in a 5-4 decision, the United States Supreme Court upheld the majority of the provisions of the Patient Protection and Affordable Care Act of 2010. Based on information from the Digestive Disease National Coalition (DDNC), IFFGD has posted a brief, understandable summary of the law. This includes a timeline of parts of the law that are already in effect, those that have been put on hold by the current administration or struck down by the Supreme Court, and those that will be coming in to effect in stages over the next few years unless amendments are introduced and passed by Congress in the interim.

The information can currently be found at the top of the linked page under Legislative Issues on the IFFGD website and is dated June 2012. Patient Protection and Affordable Care Act of 2010 status as of June 2012.  DDNC, IFFGD and IBS Impact are all not connected with any political party, and are highlighting this summary for informational purposes only.