New Updates to IBS for August 2012

August 27, 2012

Updates to some pages of the IBS Impact main website have been completed during July and August. These changes include the most current information on the progress of advocacy for the Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 2239). There have also been additions to and corrections for various resources on the links page. On the IBS studies page, a few newer studies to come to our attention recently have been added, and other studies that are no longer recruiting have been removed. We welcome researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to alert us to additional studies they wish to be considered for posting, or any updates that need to be made to existing listings, which are compiled from a variety of sources.

Please feel free to check out the site here. Our goal with the website, blog and social media is to provide a varied range of current, reputable information and resources to people with IBS and their families and friends and to encourage informed choices, proactive self-advocacy and public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.  IBS Impact, as an entity, is not directly affiliated with any other organization, site or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites and organizations who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy.

Comments, suggestions, corrections of outdated links, and article submissions are welcome and will be thoughtfully considered. Contact links for the IBS Impact founder and webmaster can be found on the home page of the main site, or comments can be left on this blog.  Thank you to all of our readers for your interest and participation.

Massachusetts Enacts Restroom Access Act

August 20, 2012

UPDATE 5/10/2013: In addition to the links and information listed in the original post for states other than Massachusetts, please see the May 10, 2013 post if you are interested in new restroom access law information for Maryland or Maine.

On August 2, 2012, Governor Deval Patrick signed Chapter 191 into law. Chapter 191 amends Chapter 270 of the General Laws to require that a “retail establishment” in the Commonwealth of Massachusetts must give a customer with an “eligible medical condition” or who uses an ostomy device access to an employee restroom upon request during normal business hours if there is no public restroom immediately available, there are at least three employees working at the time, the facility’s location will not pose a health or safety hazard  to the customer or a security risk to the business. The law states that a customer must provide written proof of an eligible condition from a physician. Unlike the other twelve U.S. states that have similar laws, the Massachusetts law does not specifically mention irritable bowel syndrome, but it appears that IBS qualifies as “any other medical condition that requires immediate access to a restroom facility.”

The full text of the Massachusetts law is linked here. For an extensive earlier post discussing and linking full texts of restroom access laws in other states, as well as “can’t wait” cards and resources in the U.S., U.K, and Australia, see the February 21, 2012 post. These laws are known popularly as “Ally’s Law” after Ally Bain, a young woman with Crohn’s disease, who, as a young teenager,  inspired and advocated for the first such law in Illinois. Please note that each state law has minor differences, so it is important to read and familiarize oneself with the details that apply in a particular state.

Similar bills have been introduced over the years in more U.S. states, but as information isn’t centralized, the current status of each state is difficult to confirm. As of this date, legislation is known to be currently pending in New York. Readers who are aware of further details about states or countries not mentioned in this post are invited to comment on this blog.  The inflammatory bowel disease community has historically been fairly active in advocating for these laws. IBS Impact would like to encourage readers with IBS and those who support us to become more involved in this advocacy issue when there is pending legislation. Our interest and visibility as a community will help accelerate passage and perhaps ensure that IBS is specifically included in the wording of such laws. These small accommodations by businesses can improve quality of life, ability to complete daily errands in public places and participate in community activities for many with IBS and/or conditions with similar restroom access needs.

Representative Posey of Florida Co-Sponsors HR 2239 for Functional Gastrointestinal and Motility Disorders

August 12, 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.

Representative Bill Posey (R-FL-15) has recently become a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011.

Representative Posey represents Florida’s 15th District.  This includes most of Brevard County south of the city of Cocoa, Indian River County, most of Osceola County, and a small portion of Northern Polk County. Some notable cities in the district are Vero Beach, Kissimmee, St. Cloud, Merritt Island, The City of Cocoa, Cocoa Beach, Palm Bay and Melbourne.

If you are a constituent of Representative Posey, 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 Posey 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), Representative Ron Kind (D-WI-3), and Representative Dan Boren, (D-OK-2)  U.S. citizens residing in the districts of Representative Posey’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.

As of this writing, Congress is currently on recess until early September. Most legislators leave Washington, DC and return to their home districts during these breaks in legislative business, and often schedule local events or constituent appointments during part of that time. These may be opportunities to interact with your Representative in your own community or one nearby.

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.

UNC Online Chat: “Everything You Want to Know About Cognitive Behavioral Therapy and IBS” on August 14, 2012

August 6, 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, August 14, 2012 from 8:00-10:00 p.m. Eastern time.  Jeffrey Lackner, Psy.D., Director of the Behavioral Medicine Clinic and Associate Professor at the University of Buffalo School of Medicine will present on the topic of “Everything You Want to Know About Cognitive Behavioral Therapy and IBS.”

Dr. Lackner is also the author of a book geared toward people with IBS on the subject of self-help cognitive behavioral therapy methods for IBS. Its title is Controlling IBS the Drug Free Way: A 10 Step Plan for Symptom Relief.

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.