Advocacy Policies
The GBS|CIDP Foundation International is committed to advocating for policies that enhance the lives of individuals affected by Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN) and related conditions. Our policy engagement focuses on key areas that directly impact our community.
Policy Priorities
- Ensuring Patient Access to Necessary Treatment
- Advocate for policies that guarantee timely access to lifesaving and life-improving treatments, including intravenous immunoglobulin (IVIG), plasmapheresis, and emerging therapies.
- Oppose barriers that restrict access, such as excessive prior authorization requirements, step therapy protocols, or non-medical switching practices.
- Support and champion policies that give patients and their physicians freedom to choose their treatment plan at all sites of care; especially enhancing coverage for home-infusion with Medicare coverage.
- Improving Accessibility for People Living with Disabilities
- Advocate for stronger enforcement of disability rights protections, including the Americans with Disabilities Act (ADA) and international disability standards.
- Educating lawmakers about timely issues affecting our communities.
- Advancing Rare Disease Research and Drug Development
- Advocate for increased funding for research into GBS, CIDP, MMN, and related neuropathies.
- Support policies that accelerate drug development.
- Engage with policymakers to ensure that clinical trials are designed with patient needs in mind, including equitable access and representation of a broad range of patient experiences.
To achieve these goals, we will:
- Continue to meet with key congressional decision-makers and members to educate them about our priorities and utilize existing bipartisan relationships to amplify our community goals.
- Continue working collaboratively with patient advocacy groups, medical professionals, and research institutions to amplify our impact.
- Provide education and resources to empower patients and caregivers to advocate for themselves.
- Monitor and respond to legislative and regulatory developments that affect our community, taking action as necessary to protect patient rights.
The GBS|CIDP Foundation International is committed to engaging with policymakers, healthcare stakeholders, legislators, and industry leaders to advance our mission. We will support policies and legislative efforts that align with our priorities to ensure the best possible outcomes for our community.
Visit our advocacy page for more information on the Foundation’s advocacy.