IFFGD Virtual Advocacy Day, September 26, 2018, Needs U.S Citizens to Advocate for Functional GI Research

The International Foundation for Functional Gastrointestinal Disorders (IFFGD) has announced that Virtual Advocacy Day 2018 is coming soon on September 26, 2018. Virtual Advocacy Day is IFFGD’s annual day on which it encourages U.S. citizens to contact their members of the federal House of Representatives in support of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act. (HR 1187)

For this year, IFFGD is trying an additional strategy and asking for adults and children with functional gastrointestinal and motility disorders, families, friends, and other supporters to write letters and draw pictures about the experiences of living with FGIMDs and the need to support FGIMD research through the Act. Please send them by Friday, September 21, 2018 to IFFGD’s Washington, DC liaison, Peter Herzog at herzog@hmcw.org or mail them to 507 Capitol Court NE, Suite 200, Washington DC 20002. Each letter or picture will be hand-delivered to the senders’ individual Member of the House of Representatives to ask for co-sponsorship of HR 1187 in time for Virtual Advocacy Day on September 26. Self-advocates and family members and friends are also encouraged to follow up with a phone call to the Representative on that day. See IFFGD’s Virtual Advocacy Day 2018 page for more information and sample letters and phone calls. If your Representative already supports HR 1187– see a list later in this post– then please consider writing and/or calling to say thank you.

According to IFFGD and the official Congressional legislative database Congress.gov, Representative Brian Fitzpatrick (R-PA-8) is the latest representative to sign on in early September 2018 as a co-sponsor of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Fitzpatrick is serving his first term as a member of the House of Representatives. He represents Pennsylvania’s 8th district which encompasses Bucks County and parts of Montgomery Country. According to Representative Fitzpatrick’s official House website, he currently is a member of several caucuses for other health conditions and disabilities.IBS Impact thanks Representative Fitzpatrick for adding his support for FGIMDs.

In officially supporting HR 1187, Representative Fitzpatrick joins Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, and co-sponsors, Representative Mark Pocan (D-WI-2), Representative Eliot Engel (D-NY-16), Representative Dave Loebsack (D-IA-2),  Representative Alcee Hastings (D-FL-20), Representative Tom Suozzi (D-NY-3), Representative Ron Kind (D-WI-3),  Representative Gwen Moore (D-WI-4),  Representative Andre Carson (D-IN-7), Representative Donald Payne, Jr. (D-NJ-10), Representative Zoe Lofgren (D-CA-19), Representative John Faso (R-NY-19), and Representative David Price (D-NC-4), Representative Gerald (Gerry) Connolly (D-VA-11), and Representative Ed Perlmutter (D-CO-7) If you are a constituent of any of these legislators, please take a few minutes in connection with Virtual Advocacy Day to call, write, or contact him or her on social media to thank him or her for his support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 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 2016 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 1187 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 1187.

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 1187 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 115th, the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 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, HR 842 in 2014 and HR 2311 in 2016. 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.

As irritable bowel syndrome (IBS), is the most common functional gastrointestinal and motility disorder, IBS Impact strongly encourages readers to join with self-advocates with other FGIMDs for Virtual Advocacy Day. Amplifying our voices as FGIMD-affected people, along with others in similar situations, can increase awareness of HR 1187 and our needs to the public and to Congressional members with the power to help our community.

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