ACTION ALERT: Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017 (HR 1187)

In early March 2017,  the International Foundation for Functional Gastrointestinal Disorders (IFFGD) publicly made known that the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017, also known as HR 1187 was introduced in the United States House of Representatives on February 16, 2017.  HR 1187 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, in the 113th Congress in 2013-2014 as HR 842 and in the 114th Congress as HR 2311. 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.

IBS Impact thanks IFFGD  for its ongoing work of many years 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 versions of the Act, HR 1187, was introduced by Representative F. James Sensenbrenner, Jr. (R-WI-5) as the initial sponsor. On March 13, 2017, Representative Mark Pocan (D-WI-2), a co-sponsor of HR 2311 in the previous Congress, became the first co-sponsor of HR 1187.

Past versions of the Act have been supported by both political parties and it 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.

In order to pass the House of Representatives in this Congress, HR 1187 needs support from 218 Representatives, a majority of the House, by the end of the current 115th Congress in December 2018. During 2011-2012, the previous bill received sponsorship or co-sponsorship from 17 Representatives in 12 states and both political parties, in 2013-2014, 20 Representatives from 13 states and both political parties, and in 2015-2016, 13 Representatives from 7 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: https://iffgd.org/advocacy-activities/congressional-bill.html
The text of the bill, the current status and cosponsors can also be accessed directly at any time through its official Congressional database entry at Congress.gov. If you do not know who your Representative is, you can look up this information by entering your zipcode in the “Find Your Representative” search box with the white U.S. map graphic near the top right corner of your screen at house.gov. In some zipcodes, different areas fall into two or more different Congressional districts, in which case you will then be prompted to enter your exact street address to determine the correct district.

Clicking on your Representative’s name will take you to his or her official House website, which will have contact forms, links or details. If you already know who your Representative is, you can generally find the website by typing his or her name into any Internet search engine. Because modern security procedures for postal mail may result in significant delays, legislators generally prefer to hear from constituents through email/website contact forms or telephone. If you choose to call, it is preferable to ask for the staff person in charge of health issues, but if he or she is not available, you may leave a message or speak to the person who answers your call. Many legislators also have social media accounts.

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 1187 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.

When writing and/or calling, 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 1187 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. The IFFGD link above has some suggested talking points.  Familiarity with your Representative’s record on or interest in other health issues may also help,  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 2016 elections and redistricting, you may have a different Representative than before, even if you have not changed your residence.

Please sign your real full name, physical address and email address if you choose to write,  or give this information to the staff member you speak to you choose to call on the telephone. Most offices will request it near the end of the call so that they have a record of callers and issues discussed. 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. 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.

You do not have to be an excellent writer or speaker, 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 conversation 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.

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