Advocacy from Home in Spring, 2020

There is no doubt that we are currently living in a time that is unprecedented! I hope that we all find ways to stay safe, comfortable, and optimistic during the COVID-19 pandemic that is happening across the world. We at the Foundation are thinking of you all!

Here in the US, we are seeing that the government continues to work on issues important to our community, including relief packages for COVID-19, home infusion, and research. Below, I outline some of the most recent and most relevant updates from Capitol Hill. The best part: we can help influence these efforts from the comfort of our homes! Visit our Advocacy Action Center and click the links below to help us make sure that the GBS|CIDP Community priorities are heard by the government during this trying time.

COVID-19 Relief Packages

There are many efforts from The White House, Congress, The Centers for Disease Control, The National Institutes of Health. All efforts have the goal of prioritizing public health while keeping America’s economy competitive. Below is a brief summary of the key efforts:

  • Early March – $8.3 billion package was passed by Congress and signed into law. This initial package was aimed at funding agencies that could help with prevention and research.
    • COMMUNITY BENEFIT: The CDC and NIH got some much needed funding to focus more intensely on prevention efforts (education campaigns, testing) and research (into vaccines, potential treatments).
  •  Mid-March – The House introduced the “Families First Coronavirus Response Act”. This bill is a more comprehensive effort at helping Americans who are impacted by COVID-19, either directly or indirectly. On March 18, The Senate passed this bill and it was signed into law by the president.
    • COMMUNITY BENEFIT: Paid sick leave programs, food bank flexibility programs, free COVID-19 testing, and Medicaid expansion.
  • PROPOSED Bill – The President and some Members of Congress have expressed an interest in an economic relief package that would help provide relief loans to small businesses, payroll tax cuts, and direct payments to taxpayers. More information coming soon!
  • Other Important Points to Remember:
    • On March 16th, The White House issued new guidelines, asking people to avoid crowds of more than 10 people.
    • The White House has also expressed strong interest in individual financial relief for Americans, though there is nothing official yet on methods for this approach.

HR 2905 & Home Infusion

By all accounts, Congress is doing what they can to keep essential work of lawmaking moving forward. There are two important updates for IG users that wish to have treatment at home:

  1. SubQ IG- The Foundation has been supportive of efforts by other organizations to help SubQ IG be covered by Medicare. Recently, HR 6218 and S 3457 were introduced in the House and the Senate. The purpose of these bills is to update the way that Medicare pays for durable medical equipment, such as the devices use to inject SubQ IG. We will keep you updated on the future of this initiative!
  2. IVIG – The recent pandemic of COVID-19 has made it obliviously clear how valuable home health care is for many communities, but especially the CIDP and MMN community. We are committed to continuing to ask for Medicare to cover home infusion IVIG for patient living with CIDP and MMN by promoting HR 2905 and asking for the language of HR 2905 to be included in any larger relevant legislative packages.
    • YOU CAN HELP US by visiting the HR 2905 specific Advocacy Action Center and sending a letter to your members of Congress – all done virtually!
      • BONUS– follow up with a phone call! Chelsey can help you find the phone number for your Congressional office (Chelsey.fix@gbs-cidp.org)

Research & GBS

Many patients have been asking about any associations between Guillain-Barre Syndrome and COVID-19. Unfortunately, because this is all new, we simply don’t yet know. That means that now, more than ever, research is extremely important! The Foundation will continue to advocate for increased research funding to the National Institutes of Health.

In addition, GBS is part of a special program through the Department of Defense that allows researchers to apply for grants. To be a part of this program, we need to ask our Senators to keep GBS on the DOD Peer-Reviewed Medical Research Program.

YOU CAN HELP US by visiting this specially designated Advocacy Action Center that will send a letter just to your Senators and ask them to keep GBS on the list for the DOD PRMRP!

We are very lucky that we are able to continue our advocacy efforts virtually! Help us keep the GBS|CIDP community’s priorities moving forward on Capitol Hill by visiting the Advocacy Action Center, making calls, and using social media to promote our agenda.

Miscellaneous Resources: