All About Advocacy

Capital Hill

One of our key partners in the effort to improve health outcomes for individuals affected by GBS, CIDP, and variants is the federal government. There are numerous meaningful programs devoted to advancing medical research and conducting public health activities. Further, the Members of Congress who oversee these programs regularly make decisions on legislative and policy issues that impact access to therapy and the quality of healthcare.

What is Advocacy?

Meeting the staff elected officials at their offices on Capitol Hill
Executive Director Lisa Butler with Board President Jim Crone and Vice President Matt LaRocco

Your journey matters, and you have the power to use your voice and tell your story to empower informed decisions by federal, state, and local government officials!

Advocacy is when a person or a group of people communicates with a government official or their staff to influence bills and laws that reflect the needs, wishes, or wants of a community. Advocacy involves bringing the community voice into the lawmaking process by:

  • Writing letters to Senators, Congresspersons, and state legislators to educate them about a particular topic.
  • Calling the offices of your elected officials and making your opinion known on a particular bill, law, or proposal.
  • Meeting the staff of elected officials at their offices on Capitol Hill or in their home state to share your story and ask for the elected official to take a particular stance on an issue.

The GBS|CIDP Foundation International works with the community to make positive policy changes for patients affected by GBS, CIDP, or related syndromes. We work to ensure that patients will have access to appropriate healthcare, treatment, and insurance, that research at the National Institutes of Health and other government agencies is appropriately funded, and that lawmakers are educated about what it is like to live with a rare disease. To accomplish these goals, we participate in the following advocacy activities:

    • Action Alerts

      • Where we ask members of the GBS|CIDP community to contact their elected officials and inform them of a current issue. If you get our emails or follow us on social media, you will receive Action Alerts!
    • Hill Day

      • Where we bring members of the community to Capitol Hill and schedule meetings with Members of Congress to discuss current policy issues and raise awareness of GBS, CIDP, and related syndromes (by invitation only! If you are interested in learning more about Hill Day, email Advocacy@GBS-CIDP.org).
    • The Advocacy Action Center

      • Where we help you write a letter to your elected officials to educate them on your current situation and concerns. Be sure to check out our Advocacy Priorities and our Advocacy Toolkit before heading to the Action Center!

Why Do We Advocate?

How do healthcare laws impact patients with GBS, CIDP, or related syndromes?

Congress and the states work together to oversee innovation in healthcare, payment structures for healthcare providers, and insurance coverage for patients. To create the best system, the federal and state governments have divided what they oversee, and that means we have to advocate to both Congress and State Governments to ensure protections for the GBS, CIDP, and variants community.


Federal Government’s Role in Healthcare

Innovation in Healthcare

The federal government determines the budget for agencies that may have some impact on healthcare delivery, innovation, or payment. Specifically, the patient community is impacted by the budget of the National Institutes of Health (NIH), which is currently doing research on which cells in the immune system attack the nervous system. The budget for the Department of Defense is also important because GBS is part of a program called the Peer Reviewed Medical Research Program (PRMRP), giving researchers another opportunity to apply for grant funding to do research.

The GBS|CIDP Foundation monitors the budgets of these agencies closely, and we activate the community to contact law-makers when a budget change may negatively impact the community!

Office of Congresswoman Cheri Bustos
GBS|CIDP Advocates on Capitol Hill

Payment Structures for Healthcare Providers / Insurance Coverage for Patients

The US healthcare system is made up of a patchwork of systems and programs that create a payment system for healthcare providers, which ensures that patients are able to receive medical care. The federal government is responsible for funding and overseeing some of those programs, most notably Medicare and Medicaid.

Medicare is a national health insurance program; patients over age 65 and some younger patients with specific conditions or disabilities are eligible to receive Medicare. Medicare is divided into four parts, and each part covers a different broad topic of medical care. Currently, the GBS|CIDP Foundation International is working on a bill to establish a demonstration project that will help evaluate the cost of home IVIG infusions for CIDP patients using Medicare Part B. This bill is a step toward ensuring that every patient has access to the appropriate treatment in the appropriate setting, no matter their health insurance. To learn more about the bill, click here.

Office of Representative Scott Perry
GBS|CIDP Advocates on Capitol Hill

Medicaid is a program that requires the cooperation of both the federal government and each states’ government. Medicaid helps with medical costs for people with limited income or for people with certain disabilities. Medicaid is funded jointly by the federal government and each state’s government. The federal government provides each state with a grant and provides general guidelines on how the states should spend the money. The state government then determines the specifics on how Medicaid gets distributed to residents in the state. The GBS|CIDP Foundation International will continue to monitor each state’s Medicaid policy and will engage in advocacy activities when necessary.

Insurance Coverage for Patients

The federal government has recently started to increase its role in healthcare and insurance coverage. No matter the policies that are proposed at the federal level, the Foundation will continue to advocate for the following insurance-based patient protections:

 

  1. No discrimination or denial of health insurance based on pre-existing conditions.
  2. The elimination of lifetime and/or annual caps on what an insurance company contributes towards an individual’s healthcare.
  3. The option to keep young adults on their parent’s insurance policy until age 26.
  4. The reduction of out-of-pocket costs for patients.

States’ Role in Healthcare

Each state determines how Medicaid is distributed to individuals. States also set up screening and surveillance programs for certain diseases and provide licensing for healthcare professionals. Lastly, states are responsible for setting guidelines around insurance coverage. This means that state governments collect issues or complaints from patients about any issues that may occur.

If you experienced an issue with your health insurance, contact Advocacy@GBS-CIDP.org or visit NORD’s website for information about who to contact.


Take Action Now!

To get involved with Advocacy, read more about our Advocacy Priorities, then head over to the Action Center to write a letter to your Senators and Representative. If you have any questions, contact Chelsey at Chelsey.Fix@GBS-CIDP.org.