Greetings!

This issue of IFFGD's Advocacy Connection focuses on the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which is a part of the National Institutes of Health (NIH). You will also find information about important opportunities to share your story and help to make an impact for patients everywhere. We hope this eNewsletter will inform and assist you as you advocate for yourself and/or loved ones.

Congress has completed their August recess and returns to session with a full plate. They will begin working on fiscal year 2021 budget and appropriation measures and resume negotiations on COVID-19 response legislation. The House of Representatives quickly moved multiple health-related bills through the House Energy & Commerce Committee after their return.

In this issue:

  • Research Supported by the NIH - NIDDK Director, Dr. Rodgers discusses Neurogastroenterology research within the NIDDK.
  • Call to Action for Patient Stories - We are seeking input from patients and advocates who are affected by step therapy and/or have experienced limited access to medical foods.

  • Bringing the Patient Voice to the NIDDK - IFFGD President, Ceciel Rooker, has recently been appointed to two prominent opportunities within the NIDDK.

  • H.R. 3396 Overview - Learn more about the Functional GI and Motility Disorders Research Enhancement Act in this video presentation.

  • Who are the National Institutes of Health? - Learn more about the agency that leads Federal research efforts for the health of Americans. 

Be active. Be heard. Make a difference.

The Functional GI and Motility Disorders Research Enhancement Act

24 Cosponsors

Thank you to our recent Cosponsors
  • Congressman James P. McGovern [D-MA-2]
  • Congressman G. K. Butterfield [D-NC-1]

H.R. 2501 - 74 Cosponsors
S. 3657 - 2 Cosponsors

H.R. 2279 - 147 Cosponsors
S. 2546 - 17 Cosponsors

H.R. 6971 - 5 Cosponsors
During IFFGD's 2020 Virtual Advocacy Event Education Program, Dr. Rodgers spoke about neurogastroenterology research supported by the NIH. Dr. Griffin P. Rodgers is the Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), one of the National Institutes of Health (NIH).

The NIDDK is the leading institute within the NIH for gastroenterology research, including the SPARC initiative,* gastroparesis research consortium and more. Watch Dr. Rodgers presentation to learn more about these research efforts. View his presentation slides and biography here.

*The Stimulating Peripheral Activity to Relieve Conditions (SPARC) program seeks to encourage development of therapeutic devices that use electrical activity to improve organ function.
Keeping informed on the federal budget process is important for all of us as constituents. IFFGD works diligently to stay versed on the appropriations process each year. We will keep you updated as the appropriations process continues for fiscal year (FY) 2021. Each FY runs from October 1st through September 30th of the following year.

As September 30th marks the end of FY 2020, a continuing appropriations resolution (CR) is expected. This will provide funding for government agencies through the fall, until regular appropriations measures can be enacted.

House and Senate appropriators are resuming negotiations on spending details of the next COVID-19 stimulus bill. The Senate HEALS Act and House of Representatives HEROS Act contain varying spending measures that will require significant negotiation with the Senate proposing $1 trillion and the House $3 trillion in spending for this 4th COVID-19 package. This funding would support both coronavirus research and support research that was halted or otherwise negatively impacted by the pandemic.

Find more information on these budget and appropriation updates here.
Call to Action: Patient Stories

Patient stories are vitally important to other patients and advocates everywhere. Patient input is especially important as legislators and government agencies are considering legislative and research needs. IFFGD is specifically seeking stories of patients in the following areas:
  • Advocacy efforts and experience: Share why you became an advocate to help encourage and inspire others while sharing your personal journey.
  • Step Therapy: As we are seeking legislative changes to limit step therapy practices, patient stories are necessary.
  • Medical Foods: Share how medical foods, and the need for insurance coverage, have impacted you.

If you are interested in sharing you story, please email advocacy@iffgd.org
Bringing the Patient Voice to the NIDDK
IFFGD President, Ceciel Rooker, has been invited to participate in two prominent opportunities within the NIDDK. This is an important step as we continually work towards raising awareness for all gastrointestinal and motility disorders.

Ms. Rooker has been selected by the Secretary of Health and Human Services, Alex Azar, to serve on the National Digestive, Diabetes and Kidney Diseases Advisory Council (DKNAC). Her term as a fully appointed member will continue through 2023.

Ms. Rooker has been selected as a member of a Working Group by the NIDDK to provide input on patient participation and engagement in the research process. Their goal is to keep the research process efficient while increasing patient involvement and understanding.
Policies and priorities related to healthcare, research, treatment, guidelines, and much more are continually changing. We will provide monthly updates on items relevant to the GI community.

On August 21st, the Department of Health and Human Services (HHS) released Healthy People 2030, the fifth iteration of the Healthy People initiative. Building on knowledge gained over the past 4 decades, Healthy People 2030 sets national objectives to address the nation’s most critical public health challenges. New objectives for this decade address emerging health issues like opioid use disorder and adolescents’ use of e-cigarettes and flavored tobacco. Health conditions specifically evaluated include chronic pain, diabetes, food-borne illnesses, and many others.

On September 9th, the House Energy & Commerce Committee advanced 26 health-related bills focusing on a variety of topics and conditions including mental health coverage and school-based health centers. Find more information about these pieces of legislation that have been passed through the Committee here.

Find more information on these health policy updates here.
H.R. 3396 is The Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019. IFFGD has led efforts to gain awareness and research funding for Functional Gastrointestinal and Motility Disorders (FGIMD's) since 2011 and we are proud to continue to do so on behalf of the patient community.

IFFGD's Washington Representative, Philip Goglas II, discussed this important piece of legislation during our 2020 Virtual Advocacy Event. View his presentation and learn more about H.R. 3396 here.

You can view this and other advocate training materials on the Advocate Training webpage.
Washington Update
We are actively working in Washington to advocate on behalf of the gastrointestinal illness community. We will continually update you on professional events, written comment submissions, and other opportunities that provide IFFGD the ability to engage with Washington.

Congress has returned to session following the August recess. Congress is expected to resume measures to conclude budget and appropriations for FY 2021 and continue discussion of another COVID-19 response package.

To learn more about what is happening in Washington D.C. concerning COVID-19, please visit our Legislative Updates page. On this page, you will also find information on how industry members are expanding assistance to patients.

The National Institutes of Health (NIH) is a division of the United States Department of Health and Human Services (HHS). The NIH is the focal point for Federal health research, and seeks to encourage and support innovative research to protect and improve the health and quality of life for Americans. Click here to learn more about the agency.
International Foundation for Gastrointestinal Disorders (IFFGD)
414-964-1799 | iffgd@iffgd.org | www.iffgd.org
IFFGD is a nonprofit organization.
We rely on donor support to fund research and to provide reliable information and support to those affected by chronic gastrointestinal disorders