ADVOCACY

Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017 (H.R. 1187) Re-Introduced in U.S. House of Representatives, February 2017. 

New co-sponsor in October 2018. 

This is a similar bill to the one known in the 112th Congress (2011-2012) as HR 2239, in the 113th Congress (2013-2014) as HR 842, and in the 114th Congress (2015-2016) as HR 2311, which did not pass. IBS Impact thanks IFFGD for its consistent work over many years in bringing this historically bipartisan bill to fruition and urges U.S. citizen IBS Impact members and site visitors to advocate for this landmark legislation on behalf of people with IBS and related disorders.

IFFGD announced publicly on March 7, 2017 that HR 1187 was introduced into the 115th Congress (2017-2018) on February 16, 2017 by Rep. F. James Sensenbrenner (R-WI-5), who also was the initial sponsor of all previous versions. In March 2017, Rep. Mark Pocan (D-WI-2),  joined him as the first co-sponsor. They have since been joined in June 2017, Rep. Eliot Engel (D-NY-16) and Rep. Dave Loebsack (D-IA-2), in July 2017 by Rep. Alcee Hastings (D-FL-20), in October 2017 by Rep. Thomas Suozzi (D- NY-3), in November 2017 by Rep. Ron Kind (D-WI-3) and Rep. Gwen Moore (D-WI-4), in April 2018, Rep. Andre Carson (D-IN-7) and Rep. Donald Payne, Jr, (D-NJ-10), in May 2018 by Rep. Zoe Lofgren (D-CA-19),Rep. John Faso (R-NY-19) and Rep. David Price (D-NC-4),  Rep. Gerald (Gerry) Connolly (D-VA-11) in June 2018, Rep. Ed Perlmutter (D-CO-7) in July 2018, Rep. Brian Fitzpatrick (R-PA-8) in September 2018, and Congresswoman Eleanor Holmes Norton (D-DC-at large) in October 2018.  Reps. Pocan, Engel,Loebsack, and Lofgren were all co-sponsors of the most recent previous version, Rep, Connolly of one previous version, Rep. Perlmutter of two previous versions,  Rep. Carson and Rep.Price  of three versions, and Rep. Kind and Rep. Moore of all four versions, as well.

If you are a constituent of any of these representatives,  please write or call or post on their social media to thank them for their ongoing support of the functional gastrointestinal and motility disorders community.

U.S. citizens in other districts, please contact your own representatives to ask them to co-sponsor this act.The text and current status of the legislation can be found here:

https://www.congress.gov/bill/115th-congress/house-bill/1187

Check back on this site, our blog at http://ibsimpact.wordpress.com or IBS Impact on Facebook or Twitter for updates as they occur.

IFFGD’s annual Advocacy Day took place on September 26, 2018. While it is over for this year, read the link below to learn about the event and see how you can continue to advocate for HR 1187.

https://iffgd.org/advocate-for-digestive-health/taking-action-in-washington/capitol-hill-advocacy-day/virtual-advocacy-day-2018.html

IBS Impact supports the efforts of IFFGD on behalf of military veterans and service members, who are disproportionately affected by IBS and other functional gastrointestinal and motility disorders.

http://iffgd.org/advocate-for-digestive-health/legislative-issues/gi-issues-and-military-personnel.html

IBS Impact is concerned about the introduction of a new mental health diagnosis that may unfairly label some people with IBS or similarly complex or overlapping medical conditions.

http://ibsimpact.wordpress.com/2012/12/17/proposed-dsm-5-criteria-may-unfairly-label-physical-conditions-as-psychological-disorders/

For residents of the United Kingdom, see this page from The IBS Network, the U.K. national charity for IBS, for recent advocacy or awareness issues specific to the U.K.

https://www.theibsnetwork.org/news/campaigns/


Read a guest post by the IBS Impact founder, originally published on the Disruptive Women in Health Care blog in April 2011.

Breaking the Silence by Nina Pan

(opens in a subpage of IBS Impact.com.  Disruptive Women in Health Care has since been acquired  by HIMSS Media, and its website and blog no longer exist. Thank you to Disruptive Women in Health Care for accepting and hosting the guest post for many years.)

Nina is a longtime educator and disability advocate, person with IBS and founder of IBS Impact from the USA.

Read a guest post for IBS Awareness Month on the IBS Impact blog from April 2013

 A Lesson Learned From a Young Person With IBS by Lyndin Kane

Lyndin has IBS and lives in Halifax, Nova Scotia, Canada

Read a guest post for IBS Awareness Month on the IBS Impact blog from April 2015

We Should Be Able To Talk About This by Jay Thompson-Munn

Jay has IBS, as well as anxiety and endometriosis, two conditions that commonly coexist with IBS. She also has family members with IBS and other GI conditions. She lives in New Zealand and wrote this especially for IBS Impact.

Read a guest post for IBS Awareness Month on the IBS Impact blog from April 2017

Misinformation, Mystery and Muddling Through IBS by Kathy Kersmarki

Kathy has IBS and lives in Winter Park, Florida, USA. She wrote this post especially for IBS Impact.

Read a guest post for IBS Awareness Month on the IBS Impact blog from April 2018

Looking Back and Paying it Forward: A Life with IBS by Jeni Skukowski

Jeni has IBS, works as a Registered Dietitian, and lives in Connecticut, USA. She wrote this post especially for IBS Impact.


WHAT IS PERSON-CENTERED PHILOSOPHY AND WHY IS IT IMPORTANT?

Simply put, people with IBS should be the primary ones to determine our own needs and make our own choices about issues that concern us, both as individuals and as a community. While those without IBS who support this philosophy can be valuable and welcome allies in our quest,it is our right and responsibility as those most directly affected by IBS to speak for ourselves and to participate actively and openly in the process of constructive change. As is often said in many other advocacy communities, “Nothing about us without us.”

While there has been increasing recognition of IBS in recent years, much of the information about what “IBS patients” experience, need and want is filtered through the perspective of researchers, other professionals or organizations whose mission is not solely focused on IBS and who, sometimes, are not people with IBS. Meanwhile, people with IBS have often had difficulty consistently “amplifying the need,” in the words of one IBS Impact  member, from our individual daily concerns about our symptoms to the larger issues that could improve the lives of many: greater public awareness, greater access to expert medical care, IBS education and support systems in our own local communities, funding for research to better understand the causes of IBS and find more effective treatments, and the legislation and public policies to support all of the above.

It is time for people with IBS to see public awareness and self-advocacy as in our own interests and as natural parts of the dialogue about IBS. Let us be equal participants with the professionals and organizations that assist us, and let us work with them to communicate our needs and hopes to researchers, policy makers and the general public with honesty and dignity. IBS Impact specifically uses “person first” language to communicate that we are not merely theoretical “patients” whose sole place is in relation to medical providers who have given this diagnosis of IBS. We are real people with real lives and real relationships that have been greatly affected by IBS, and our honest, lived experiences and opinions are legitimate and important.

Some self-advocacy articles and resources that previously appeared on this page, such as on communicating with doctors, employment, education, and disability benefits, have been moved and added to the Resources page of this site.

Last update to Advocacy Page: October 2018. All links verified December 2018.