Greetings!

Thank you to all who participated in IFFGD's 2020 Virtual Advocacy Event on July 26th and 27th. If you contacted Congress, please email advocacy@iffgd.org, allowing us to follow-up with those offices. Advocacy efforts by patients, families, medical professionals and beyond are vitally important to ensuring positive changes are made in the care, treatment, and research for gastrointestinal disorders. Our advocate training materials and education program are available online for you to access and watch at your convenience. Advocate training provides education on contacting Congress, legislative priorities in GI illness, and self-advocacy. The education program includes updates on research and drug development in Federal agencies, advocating for yourself in healthcare, creating a healthcare team, and treatment beyond traditional medicine in GI illness

In recognition of August as gastroparesis awareness month, the advocacy efforts of three of IFFGD's Patient Advisory Committee (PAC) members are highlighted throughout this newsletter. View our Advocate in Action Spotlight and featured Advocate Training videos to learn more about the impact of gastroparesis on these PAC members, and their actions to influence positive change. Please email us at advocacy@iffgd.org to share your advocate story.

Be active. Be heard. Make a difference. We hope this eNewsletter will inform and assist you as you advocate for yourself and/or loved ones.

The Functional GI and Motility Disorders Research Enhancement Act

22 Cosponsors

H.R. 2501 - 72 Cosponsors
S. 3657 - 2 Cosponsors

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

H.R. 6971 - 4 Cosponsors

All legislation is preceded by either an H.R., standing for House of Representatives, or an S., representing the Senate
The Advocates in Action web page highlights the experiences and impact of advocates throughout the digestive health community.

IFFGD Patient Advisory Committee member, Cate, shares her family's experience during her sister Madeline's journey from symptom onset to diagnosis of gastroparesis and coexisting GI illnesses. She describes the actions she has taken to make a difference for all those impacted by gastrointestinal disorders. Cate expresses that "social awareness is the strongest solution" to improving the lives of patients and families.

Since sharing this experience with IFFGD, she has continued to advocate and make a difference for those affected by chronic GI conditions. We appreciate the impact that Cate, and all advocates, have in raising awareness and implementing positive change.
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 FY 2021. Each fiscal year (FY) runs from October 1st through September 30th of the following year.

Senate Republicans issued the HEALS Act—the $1 trillion alternative to the House-passed $3 trillion HEROES legislation addressing COVID-19. The HEALS Act takes a more limited approach, but does contain important economic stimulus, spending, and healthcare access provisions.

House Appropriations Committee Chairwoman Nita Lowey (D-NY) worked another major spending bill through the full House of Representatives the week of July 27th, rolling six annual FY 2021 appropriations measures into one package that cleared the House on July 31st. The minibus includes the annual funding bills for 1) Labor-HHS-Education; 2) Defense; 3) Energy and Water; 4) Commerce, Justice and Science; 5) Financial Services; and 6) Transportation, Housing, and Urban Development.

House and Senate appropriators are poised to begin negotiations on the spending details of the COVID-19 stimulus bill. Scientific, patient, provider, and academic groups are encouraging the House and Senate leadership to adopt a funding level of $15.5 billion for National Institutes of Health in the upcoming COVID-19 spending package. This funding would support coronavirus research and support research that was halted or otherwise negatively impacted by the pandemic situation.

Find more information on these budget and appropriation updates here.
Thank you for viewing our live-streamed Advocacy Event Education Program on July 26th.

This full-day education program is now available to be viewed online. Visit our Education Program web page to view all presentations and guest speaker biographies. Each presentation is available as an individual link to IFFGD's YouTube channel, making it simple to watch all or portions of the video series.

Topics include:
  • Update on Research and Drug Development in Federal Agencies
  • Advocating for Yourself in Healthcare
  • Creating a Healthcare Team
  • Going Beyond Traditional Medicine in GI Illness
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.

President Trump has issued a series of executive orders that brought attention to surprise medical billing, drug pricing, and access to healthcare in rural areas. The orders call for:

  • Federally qualified health centers to pass along discounts on insulin to low-income consumers.
  • Establishment of state plans for safe importation of certain drugs and authorization of the re-importation of insulin products made in the U.S.
  • Prohibiting of undisclosed discount deals between drug manufacturers and pharmacy benefit managers and directing discounts to patients.
  • Lowering the reimbursement amount for Medicare Part B drugs.
  • Continuing flexibility and covered access to telehealth benefits, particularly in rural areas.

The HHS Secretary’s Report on Addressing Surprise Medical Billing was released. This outlines the critical steps needed to implement the Administration’s principles on surprise billing, including Congressional action. Sound surprise billing legislation will protect patients and encourage a fairer, more transparent, patient-centered healthcare system that benefits all Americans. Find the press release and full report here.

  • Bipartisan/bicameral congressional leaders responded to the surprise billing report and its call on Congress to act by urging swift action on comprehensive legislation to end surprise billing.

Find more information on these health policy updates and here.
Advocate training materials will continue to be available online, providing current and future advocates with the opportunity to learn how to begin or strengthen their advocacy efforts. You can learn more about legislative priorities in GI illness, self-advocacy, and contacting Congress.

Two of these training videos were provided by gastroparesis patients and members of IFFGD's Patient Advisory Committee, who are active advocates and patient leaders.
  • View Effective Self Advocacy, by Melissa Adams VanHouten, to gain understanding of how to best advocate for yourself and your loved ones.
  • Despite the hardships of disease burden and the current public health emergency, Advocating on the National Level from Home is an important way to make your voice heard, learn more about this topic from Debbie Popp.
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 begun the August recess. A time in which legislators dedicate to spending in their home states and districts with constituents. The current public health pandemic may limit face-to-face meetings, but legislators are still highly focused on their local communities' needs.

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.


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