Each year, IFFGD sets forth its legislative priorities and works with legislators in Washington, D.C. to advance policies that impact the study and treatment of chronic gastrointestinal (GI) diseases. These policies are aimed at expanding and improving GI disease research, patient access to care, and prevention and public awareness of GI disease.
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Current Legislative Agenda
The Safe Step Act (Not yet introduced in 119th Congress)
Step therapy is common occurrence in health care. This practice can be a significant hurdle for both healthcare providers and patients. This is also known as fail first, a practice used by health insurance companies that requires patients to try and fail on one or more medications before the insurer will cover the medication originally prescribed by the patient’s healthcare provider. The medications that must be trialed first are decided upon by the health insurance company. For many patients, step therapy can delay needed treatment, and lead to using treatments that the healthcare provider feels is unnecessary or unsafe. Too often, this leads to worsened health outcomes, and contributes to higher healthcare costs.
This is a tool used by health insurance companies in an attempt to limit costs. Many patients are negatively impacted by this practice. Legislation is to be soon introduced in the 118th Congress to limit these practices. Learn more by viewing the previous Safe Step Act here.
The Safe Step Act would require insurers to implement a clear and transparent process for a patient or healthcare provider to request an exception to a step therapy protocol and requires group health plans to grant exceptions if certain protocol is met. Step therapy negatively affects many patients within chronic gastrointestinal and motility disorders.
The Help Ensure Lower Patient (HELP) CoPays Act (S.864)
Recently re-introduced in the 119th Congress by U.S. Senators Tim Kaine (D-VA) and Roger Marshall (R-KS). This legislation requires health insurance plans to apply certain payments made by, or on behalf of, a plan enrollee toward a plan’s cost-sharing requirements. Specifically, plans must apply third-party payments, financial assistance, discounts, product vouchers, and other reductions in out-of-pocket expenses toward the patient’s deductible and out-of-pocket maximum.
Functional GI Disorders and the Military Service Connection
The onset of a functional GI disorder can be triggered by severe stress and infections of the digestive tract. Deployed military personnel face an elevated chance of experiencing these risk factors and developing a functional GI disorder due to their service. As a result, the VA recognizes a “presumption of service” connection for Gulf War veterans applying for disability who suffer with functional GI disorders. The DOD conducts important research into medical conditions that impact veterans and active duty military personnel through its Congressionally Directed Medical Research Program (CDMRP).
The House and Senate Defense Appropriations Subcommittees fund the DOD CDMRP’s Gulf War Illness Research Program (GWIRP), which provides an excellent source of funding for functional GI disorders research.
The Medical Nutrition Equity Act (Not yet re-introduced in the 119th Congress)
Medical foods are physician-directed foods intended for the dietary management of a disease or condition that has distinctive nutritional needs that cannot be met by normal diet alone and are used under medical supervision. Many individuals with FGIMDs benefit from medical foods. This bill seeks to provide coverage, under Medicare, Medicaid, other specified federal health-care programs and private health insurance, of foods and vitamins that are medically necessary for the management of certain metabolic and digestive disorders. This legislation has not been reintroduced in the 119th Congress, yet. Visit congress.gov to see if your Representative supports this legislation.
National Institutes of Health
The National Institutes of Health (NIH) forms the cornerstone of this nation’s biotechnology industry. NIH supports basic, translational, and clinical research into various diseases and disorders such as irritable bowel syndrome, gastroparesis, and others. This federally funded research often serves as a catalyst with industry turning medical breakthroughs and scientific advancements into innovative therapies and cutting-edge diagnostic tools. NIH research has seen modest increases over the past few years, but more funding is needed.
These increases need to continue moving forward, and the entire research community is asking Congress to continue prioritizing this important research.
Overall Investment in NIH: We support increasing funding for NIH to a level of at least $50.924 billion in FY24. The bulk of federally supported FGIMDs research is conducted through the National Institute of Diabetes, and Digestive, and Kidney Diseases (NIDDK). Increased support for NIH will enable NIDDK and other Institutes and Centers to continue to expand the FGIMD research portfolio and initiate critical new research activities focused on improving our understanding of these conditions and leading to the development of innovative treatment options.
GI Issues and Military Personnel
The onset of a functional gastrointestinal disorder (FGID) can be triggered by severe stress and infections of the digestive tract. Deployed military personnel face an elevated chance of experiencing these risk factors and developing FGIDs as a result of their service. The challenges of deployment and combat situations can be incredibly stressful, and digestive tract infections are common in areas outside the U.S. where living conditions may be less than ideal. The service connection of these conditions has been extensively studied and, most recently, a 2010 Institute of Medicine report, entitled Gulf War and Health: Health Effects of Serving in the Gulf War, identified Functional GI Disorders along with 3 other multi-symptom illnesses present in veterans as related to their service during the Gulf War.
Past Legislation
The Functional Gastrointestinal & Motility Disorders Research Enhancement Act
The Functional GI and Motility Disorders Research Enhancement Act: This piece of legislation was created and advocated for by the International Foundation for Gastrointestinal Disorders (IFFGD) to advance our scientific understanding of FGIMDs and improve treatment options for patients by encouraging and bolstering research. This bill called on NIH to adopt and implement the FGIMD-related research recommendations outlined by the National Commission on Digestive Diseases. In addition, this bill called on NIH to partner with the Department of Defense (DOD) and the Department of Veterans Affairs (VA) to increase research activities. This legislation has not been introduced since the 116th Congress. However, many key asks of this legislation are currently being implemented by Congress and Federal Agencies. The continued advocacy efforts of the gastrointestinal community are encouraging the government to improve and continue these efforts.
2024 Policy Priorities
Medical Research
- Please provide the National Institutes of Health (NIH) $51.3 billion Fiscal Year (FY) 2025
- Please provide a proportional increase for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) with an increased emphasis on nutritional research and motility disorders such as gastroparesis
- Funding increases for the Department of Defense (DoD) Peer-Reviewed Medical Research Program
- Funding increases for the Department of Veterans Affairs (VA) and Prosthetics Research Program with an ongoing emphasis on Gulf War Illness and functional GI disorders.
- Continued FY 2025 support for digestive disease programs at the Centers for Disease Control and
Prevention (CDC).- $11 billion for FY 2025 and encourage collaboration with stakeholders
- $6 million for the CDC’s Chronic Disease Education and Awareness program
Patient Access to Treatments
IFFGD urges legislators and federal agency officials to implement policy and regulations that benefit patient access to care by strengthening the patient provider decision-making relationship, limiting patient out-of-pocket spending, and curbing the ability of third-party payers to shift overly burdensome costs onto patients.
- Safe Step Act (S 652/H.R. 2630): This legislation implements a clear and transparent process for a patient or healthcare provider to request an exception to a step therapy protocol and requires group health plans to grant exceptions if a certain protocol is met.
• The Food Labeling Modernization Act (S 1289/H.R. 2901): This legislation strengthens requirements related to nutrient information on food labels. It also requires that food allergens, such as gluten and medicines derived from gluten-based products, be clearly labeled.
• The Liver Illness Visibility, Education, and Research (LIVER) Act (S. 3041/H.R. 5675-117th Congress) – This legislation would amend the Public Health Service Act to support liver illness visibility, education, and research. Additional investment in research will benefit individuals affected by advanced fibrosis and non-alcoholic steatohepatitis (NASH).
• HELP Copays Act (S. 1375/H.R. 830): This legislation requires health insurance plans to apply certain payments made by, or on behalf of, a plan enrollee toward a plan’s cost-sharing requirements. Specifically, plans must apply third-party payments, financial assistance, discounts, product vouchers, and other reductions in out-of-pocket expenses toward the patient’s deductible and out-of-pocket maximum.
Medical Nutrition Legislation
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- Medical Nutrition Equity Act of 2023 (H.R.6892): This legislation, only introduced in the House so far, ensures both public and private insurance coverage of medically necessary foods as a treatment option, which are required to support proper growth and development and to prevent medical complications, severe disabilities, and death.
• Medical Nutrition Therapy Act of 2023 (S. 3297/H.R. 407): This legislation provides Medicare Part B coverage of outpatient Medical Nutrition Therapy (MNT) for prediabetes, obesity, high blood pressure, high cholesterol, malnutrition, eating disorders, and cancer.
- Medical Nutrition Equity Act of 2023 (H.R.6892): This legislation, only introduced in the House so far, ensures both public and private insurance coverage of medically necessary foods as a treatment option, which are required to support proper growth and development and to prevent medical complications, severe disabilities, and death.
2023 Policy Priorities
Medical Research
For Fiscal Year (FY) 2024 IFFGD supports additional funding for digestive diseases research.
- Please provide the National Institutes of Health (NIH) $50.924 billion
- Please provide a proportional increase for the National Institute of Diabetes and Digestive and Kidney
Diseases (NIDDK) with an increased emphasis on nutritional research and functional GI disorders such as gastroparesis
- Please provide a proportional increase for the National Institute of Diabetes and Digestive and Kidney
- Department of Defense (DOD) & Department of Veterans Affairs: Please support Gulf War Illness research at the Department of Defense (DoD) and the Department of Veterans Affairs (VA). Gulf War Medically Unexplained Illnesses are characterized by multiple diverse symptoms, including gastrointestinal problems that could not be explained by established medical diagnoses or standard lab tests.
- Inclusion of Gulf War Illness and Food Allergies priorities
Patient Access to Treatments
- Safe Step Act (S. 652) and soon to be introduced legislation in the House that implements a clear and transparent process for a patient or healthcare provider to request an exception to a step therapy protocol
and requires group health plans to grant exceptions if certain protocol is met. - HELP Copays Act (HR 830). This bill requires health insurance plans to apply certain payments made by, or on behalf of, a plan enrollee toward a plan’s cost-sharing requirements. Specifically, plans must apply third-party payments, financial assistance, discounts, product vouchers, and other reductions in out-of-pocket expenses toward the requirements. This bill will require all private plans to count all cost sharing for covered services to accrue to a patient’s deductible and out-of-pocket maximum.
- Access to Prescription Digital Therapeutics Act (S. 723 and H.R. 1458). This bill will enable public coverage of prescription digital therapeutics by establishing a payment methodology for manufacturers of prescription digital therapeutics, product-specific Healthcare Common Procedure Coding System (HCPCS) codes, and a digital therapeutics manufacturer reporting process to the Centers for Medicare and Medicaid Services (CMS).
Education and Awareness
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- Please provide $6 for the Chronic Diseases Education and Awareness Program at the Centers for Disease Control and Prevention (CDC). Patients with functional gastrointestinal and motility disorders (FGIMDs) frequently suffer for years before receiving an accurate diagnosis, exposing them to unnecessary and costly tests and procedures including surgeries, as well as needless suffering and expense. Functional GI and motility disorders are among the
most common digestive disorders in the general population. They affect an estimated 1 in 4 people in the U.S. and account for 40% of GI problems seen by medical providers. A CDC program focused on surveillance, provider education, and public awareness would increase diagnoses and improve patient outcomes
- Please provide $6 for the Chronic Diseases Education and Awareness Program at the Centers for Disease Control and Prevention (CDC). Patients with functional gastrointestinal and motility disorders (FGIMDs) frequently suffer for years before receiving an accurate diagnosis, exposing them to unnecessary and costly tests and procedures including surgeries, as well as needless suffering and expense. Functional GI and motility disorders are among the
2022 Policy Priorities
Medical Research
- Please provide the National Institutes of Health (NIH) with $49 billion in funding for fiscal year (FY) 2023. Strengthening the nation’s biomedical research enterprise through NIH fosters economic growth and sustains innovations that enhance the health and well-being of the American people. NIH sponsors groundbreaking initiatives like the Stimulating Peripheral Activity to Relieve Conditions (SPARC) Initiative that is having a powerful impact on new treatments for GI disorders. Please also ensure proportional funding increases for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which supports basic, clinical, and translational research on aspects of gut physiology regulating motility and clinical trials through the Motility and Functional GI Disorders Program.
- Please support Gulf War Illness research at the Department of Defense (DoD) and the
Department of Veterans Affairs (VA). Gulf War Medically Unexplained Illnesses are characterized by multiple diverse symptoms, including gastrointestinal problems that could not be explained by established medical diagnoses or standard lab tests. Approximately 25-32% of Gulf War Veterans continue to experience symptoms associated with their deployment. The DoD Gulf War Illness Research Program (GWIRP) and the VA Gulf War Research Program allow talented researchers to work at finding the reasons behind this high prevalence and seek ways to reduce these challenges during future conflicts.
Education and Awareness
- Please provide $6,000,000 for the Chronic Diseases Education and Awareness Program at the Centers for Disease Control and Prevention (CDC). Patients with FGIMDs frequently suffer for years before receiving an accurate diagnosis, exposing them to unnecessary and costly tests and procedures including surgeries, as well as needless suffering and expense. Functional GI and motility disorders are among the most common digestive disorders in the general population. They affect an estimated 1 in 4 people in the U.S. and account for 40% of GI problems seen by medical providers. A CDC program focused on surveillance, provider education, and public awareness would increase diagnoses and improve patient outcomes.
Patient Access to Treatments
Please work to limit patient out-of-pocket costs and curb current and future payer tactics to shift costs onto patients. Many patients face financial barriers to obtaining quality care and innovative treatments. IFFGD supports policy and regulations that facilitate patient access to care by strengthening the patient-provider decision-making relationship, limiting patient outof-pocket spending, and curbing cost-shifting practices by third-party payers, including step therapy, non-medical switching, and co-pay accumulator adjustment programs.
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- Safe Step Act (S 464/HR 2163) – This bipartisan bill would establish common sense guidelines for appealing step therapy protocols under ERISA health plans. IFFGD urges legislators to pass the Safe Step Act in the 117th Congress. Safe Step Act Fact Sheet and Summary. Step therapy is one of many “utilization management” or “costshifting” tactics employed by third parties to shift costs away from themselves and to the patient, which increases patient out-of-pocket costs and drives a wedge between a patient and their health care provider’s decision-making. Other cost-shifting tactics include non-medical switching, co-pay accumulators, and prior authorization.
• The Help Ensure Lower Patient (HELP) copays Act (H.R 5801) seeks to end the discriminatory practice of copay accumulator programs by ensuring all copays count. By requiring health plans to count copay assistance towards cost-sharing requirements, the HELP Copays Act brings imperative relief to vulnerable patients by guaranteeing that all payments—no matter the source—count towards their out-of-pocket costs.
• Medical Nutrition Equity Act (S 2013/HR 3783) – This bill would provide coverage, under federal and private health plans, for foods and vitamins that are medically necessary for the management of certain digestive and metabolic disorders and conditions.
• The Food Labeling Modernization Act of 2021 (S 2594/HR 4917) and the Gluten in Medicine Disclosure Act (HR 2435) – This legislation would strengthen requirements related to nutrient information on food labels, and require food allergens, such as gluten and medicines derived from gluten-based products, to be clearly labeled.
- Safe Step Act (S 464/HR 2163) – This bipartisan bill would establish common sense guidelines for appealing step therapy protocols under ERISA health plans. IFFGD urges legislators to pass the Safe Step Act in the 117th Congress. Safe Step Act Fact Sheet and Summary. Step therapy is one of many “utilization management” or “costshifting” tactics employed by third parties to shift costs away from themselves and to the patient, which increases patient out-of-pocket costs and drives a wedge between a patient and their health care provider’s decision-making. Other cost-shifting tactics include non-medical switching, co-pay accumulators, and prior authorization.
2021 Policy Priorities
Medical Research
- Please provide the National Institutes of Health (NIH) with $46.1 billion in funding for fiscal year (FY) 2022, an increase of $3.2 billion. Strengthening the nation’s biomedical research enterprise through NIH fosters economic growth and sustains innovations that enhance the health and well-being of the American people. NIH sponsors groundbreaking initiatives like the Stimulating Peripheral Activity to Relieve Conditions (SPARC) Initiative that is having a powerful impact on new treatments for gastrointestinal disorders. Please also ensure proportional funding increases for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which supports basic, clinical, and translational research on aspects of gut physiology regulating motility and clinical trials through the Motility and Functional GI Disorders Program.
- Please support Gulf War Illness research at the Department of Defense (DoD) and the Department of Veterans Affairs (VA). Gulf War Medically Unexplained Illnesses are characterized by multiple diverse symptoms, including gastrointestinal problems that could not be explained by established medical diagnoses or standard lab tests. Approximately 25-32% of Gulf War veterans continue to experience symptoms associated with their deployment. The DoD Gulf War Illness Research Program (GWIRP) and the VA Gulf War Research Program allow talented researchers to work at finding the reasons behind this high prevalence and seek ways to reduce these challenges during future conflicts.
Patient Access to Treatments
- Please work to limit patient out-of-pocket costs and curb current and future payer tactics to shift costs onto patients. Many patients face financial barriers to obtaining quality care and innovative treatments. IFFGD supports policy and regulations that facilitate patient access to care by strengthening the patient-provider decision-making relationship, limiting patient out-of-pocket spending, and curbing cost-shifting practices by third-party payers, including step therapy, non-medical switching, and co-pay accumulator adjustment programs.
Education and Awareness
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- Please provide $5,000,000 for the Chronic Diseases Education and Awareness Program at the Centers for Disease Control and Prevention (CDC). Patients with FGIMDs frequently suffer for years before receiving an accurate diagnosis, exposing them to unnecessary and costly tests and procedures including surgeries, as well as needless suffering and expense. Functional GI and motility disorders are among the most common digestive disorders in the general population. They affect an estimated 1 in 4 people in the U.S. and account for 40% of GI problems seen by medical providers. A CDC program focused on surveillance, provider education, and public awareness would increase diagnoses and improve patient outcomes.
2020 Policy Priorities
Medical Research
- Work to advance The Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 3396). This legislation focuses on bolstering research and increasing awareness of functional GI disorders and seeks increased coordination on research across the federal government. This legislation was reintroduced by Rep. Jim Sensenbrenner (R-WI-05) and Rep. Gwen Moore (D-WI-04).
- Please provide the National Institutes of Health (NIH) with $44.7 billion in funding for fiscal year (FY) 2021, an increase of $3 billion. Strengthening the nation’s biomedical research enterprise through NIH fosters economic growth and sustains innovations that enhance the health and well-being of the American people. NIH sponsors groundbreaking initiatives like the Stimulating Peripheral Activity to Relieve Conditions (SPARC) Initiative that is having a powerful impact on new treatments for gastrointestinal disorders. Please also ensure proportional funding increases for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which supports basic, clinical, and translational research on aspects of gut physiology regulating motility and clinical trials through the Motility and Functional GI Disorders Program.
- Please support Gulf War Illness research at the Department of Defense (DoD) and the Department of Veterans Affairs (VA). Gulf War Medically Unexplained Illnesses are characterized by multiple diverse symptoms, including gastrointestinal problems that could not be explained by established medical diagnoses or standard lab tests. Approximately 25-32% of Gulf War veterans continue to experience symptoms associated with their deployment. The DoD Gulf War Illness Research Program (GWIRP) and the VA Gulf War Research Program allow talented researchers to work at finding the reasons behind this high prevalence and seek ways to reduce these challenges during future conflicts.
Patient Access to Treatments
- Please work to limit patient out-of-pocket costs and curb current and future payer tactics to shift costs onto patients. Many patients face financial barriers to obtaining quality care and innovative treatments. IFFGD supports policy and regulations that facilitate patient access to care by strengthening the patient-provider decision-making relationship, limiting patient out-of-pocket spending, and curbing cost-shifting practices by third-party payers, including step therapy, non-medical switching, and co-pay accumulator adjustment programs.
- Please work to advance the Safe Step Act (HR 2279/S.2546). This bill would establish guidelines for appealing step therapy protocols under ERISA health plans.
Education and Awareness
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- Please provide $5,000,000 for the Chronic Diseases Education and Awareness Program at the Centers for Disease Control and Prevention (CDC). Patients with FGIMDs frequently suffer for years before receiving an accurate diagnosis, exposing them to unnecessary and costly tests and procedures including surgeries, as well as needless suffering and expense. Functional GI and motility disorders are among the most common digestive disorders in the general population. They affect an estimated 1 in 4 people in the U.S. and account for 40% of GI problems seen by medical providers. A CDC program focused on surveillance, provider education, and public awareness would increase diagnoses and improve patient outcomes.
2019 Policy Priorities
Medical Research
- Work to advance The Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 3396). This legislation focuses on bolstering research and increasing awareness of functional GI disorders and seeks increased coordination on research across the federal government.
- Provide the National Institutes of Health (NIH) with $41.6 billion in funding for fiscal year (FY) 2020, an increase of $2.5 billion. Strengthening the nation’s biomedical research enterprise through NIH fosters economic growth and sustains innovations that enhance the health and well-being of the American people. NIH sponsors groundbreaking initiatives like the Stimulating Peripheral Activity to Relieve Conditions (SPARC) Initiative that is having a powerful impact on new treatments for gastrointestinal disorders. Please also ensure proportional funding increases for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which supports basic, clinical, and translational research on aspects of gut physiology regulating motility and clinical trials through the Motility and Functional GI Disorders Program.
- Support Gulf War Illness research at the Department of Defense (DoD) and the Department of Veterans Affairs (VA). Gulf War Medically Unexplained Illnesses are characterized by multiple diverse symptoms, including gastrointestinal problems that could not be explained by established medical diagnoses or standard lab tests. Approximately 25-32% of Gulf War veterans continue to experience symptoms associated with their deployment. The DoD Gulf War Illness Research Program (GWIRP) and the VA Gulf War Research Program allow talented researchers to work at finding the reasons behind this high prevalence and seek ways to reduce these challenges during future conflicts.
Patient Access to Treatments
- Work to limit patient out-of-pocket costs and curb current and future payer tactics to shift costs onto patients. Many patients face financial barriers to obtaining quality care and innovative treatments. IFFGD supports policy and regulations that facilitate patient access to care by strengthening the patient-provider decision-making relationship, limiting patient out-of-pocket spending, and curbing cost-shifting practices by third-party payers, including step therapy, non-medical switching, and co-pay accumulator adjustment programs.
- Work to advance the Safe Step Act (HR 2279, S 2546). This bill would establish guidelines for appealing step therapy protocols under ERISA health plans.
Education and Awareness
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- Provide $500,000 for a functional GI and motility disorders program at the Centers for Disease Control and Prevention (CDC). Patients with FGIMDs frequently suffer for years before receiving an accurate diagnosis, exposing them to unnecessary and costly tests and procedures including surgeries, as well as needless suffering and expense. Functional GI and motility disorders are among the most common digestive disorders in the general population. They affect an estimated 1 in 4 people in the U.S. and account for 40% of GI problems seen by medical providers. A CDC program focused on surveillance, provider education, and public awareness would increase diagnoses and improve patient outcomes.
