Greetings!

In this month's issue, you will learn more about the Food and Drug Administration (FDA) and specifically how this organization works to include patient input in their decision-making process. IFFGD President, Ceciel Rooker, provides an update on legislative priorities in gastrointestinal (GI) illness that may impact you and your loved ones. This is important information to be aware of as every voice counts and makes a difference to ensure quality and accessible treatment and care. You can continue to view IFFGD's advocate training materials and education program online to educate yourselves on more aspects of advocating for yourself and others.

In this issue:

  • Patients as a Priority for the FDA - Patient Affairs Staff Director, Andrea Furia-Helms, discusses how patients are a priority in the FDA.

  • 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.

  • Advocate Spotlight - IFFGD Patient Advisory Committee member, Erin Slater, is an active advocate for those affected by GI conditions.

  • Legislative Priorities in GI Illness - Learn more about the legislative priorities that IFFGD supports on behalf of the GI community.

  • Who is the Food and Drug Administration? - Learn about this organization that works to ensure the health and safety of food, drugs, and more.

Be active. Be heard. Make a difference.

The Functional GI and Motility Disorders Research Enhancement Act

24 Cosponsors

H.R. 2501 - 75 Cosponsors
S. 3657 - 2 Cosponsors

H.R. 2279 - 150 Cosponsors
S. 2546 - 17 Cosponsors

H.R. 6971 - 8 Cosponsors

All legislation is preceded by either an H.R., standing for House of Representatives, or an S., representing the Senate

During IFFGD's 2020 Virtual Advocacy Event Education Program, Andrea Furia-Helms spoke about the many ways that the FDA makes patients a priority in the work they do. She is the Director of the Patient Affairs Staff within the U.S. Food and Drug Administration (FDA).

In her presentation, she discusses the importance of the patient voice, the role of Patient Affairs Staff, and multiple ways patients can be involved with the FDA. Engagement opportunities include the Patient Engagement Collaborative and Rare Disease Patient Listening Sessions.

View her presentation slides and biography here.
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.

October 1, 2020 - Legislators passed, and President Trump signed into law a stopgap spending measure to continue government funding. A stopgap measure is a temporary solution to a larger need. The short-term continuing resolution, H.R. 8337, keeps federal agencies operating through December 11th. This bill includes a provision that would extend the availability of funding for specific multiyear NIH research grants that were interrupted by COVID-19. The bill also includes several temporary extensions of health-related measures.

The House passed its updated $2.4 trillion HEROES legislation along party lines. The revised House HEROES (H.R. 8406) legislation is very similar to the previous HEROES bill but reduces the overall price by shortening the length of time for certain benefits and initiatives.

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 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 your story, please email advocacy@iffgd.org
The Advocates in Action web page highlights the experiences and impact of advocates throughout the digestive health community.

IFFGD Patient Advisory Committee member, Erin Slater, RDN, shares her experiences searching for an accurate diagnosis and treatment options to relieve her symptoms. Her journey guided her decision to become a dietitian and to continue advocating for herself and others.

Erin continues to advocate and make a difference for those affected by chronic GI conditions. Read her advocate story here.
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.

October 1, 2020 - The House passed sixteen health bills this week, ranging from school-based asthma management and health centers to improved mental/behavioral health and the FDA Pediatric Rare Disease Priority Review Voucher program.

Senator Patty Murray (D-WA) and several colleagues introduced the $4.5 billion Public Health Infrastructure Saves Lives Act. This bill is designed to provide grants to states and other jurisdictions to improve public health capabilities. The COVID-19 pandemic has highlighted the vulnerability of the nation’s public health infrastructure, and this bill seeks to provide resources to help make necessary improvements.

The Health Resources and Services Administration (HRSA) announced the availability of $20 billion in new funding for healthcare providers on the front lines of the coronavirus pandemic.

September 24, 2020 - President Trump issued new executive orders to solidify his administration’s commitment to coverage for individuals with pre-existing health conditions and preventing surprise medical billing.

Find more information on these health policy updates and here.
IFFGD works to educate regulators and lawmakers on the needs of the GI community. In each Congressional session, bills are introduced to improve access and quality of care for patients and community members. With the budget and appropriations measures that are finalized for each fiscal year, money is dedicated to agencies and programs that serve the GI community. IFFGD President, Ceciel Rooker, discusses these priorities in her presentation from our 2020 Virtual Advocacy Event.

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 their home states and districts to prepare for the 2020 November election. Despite being out of D.C., they may return if negotiations are made to advance COVID-19 response legislation.

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 U.S. Food and Drug Administration (FDA) is a regulatory agency within the U.S. government that works to protect Americans' health and safety. Learn about the FDA's broad reach and the positive impact this agency has on the safety and effectiveness of food, medicines, and devices that are used every day.
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