Speaker Series Webinar: “Guide to an Election Year for the GBS|CIDP Community”

HR 5818 is a bill that could expand Medicare part B’s access to include home infusion of IVIG for patients with CIDP and MMN.

We have been successful in moving forward with our bill during the 118th Congress. We have strong commitments from Congressman Adrian Smith, who is the lead Republican of the bill in this Congress. The Foundation’s advocacy team has met with numerous members of the Ways and Means Committee, which is a committee of jurisdiction on the bill. We even had Congressman Adrian Smith at a hearing earlier this year specifically reference the bill and his desire to see it enacted into law as part of a larger package that Congress may be working on.

At this moment, the House is in recess for the summer and is going through holding patterns before the election. So we will not see any big changes, because healthcare spending differs after the election. We do have a strong champion in our corner, Congressman Adrian Smith, who again is on the Committee of Jurisdiction. We do know that the Congressman and his staff are very determined to see our bill be enacted into law. It’s just a question of timing that unfortunately is out of our control.

One of the basic functions that Congress does on an annual basis is fund the government. The appropriations bill that funds the government is the only bill that absolutely must be considered and passed no matter what. HMC looks at the suggested funding levels outlined in the appropriations bills from the government’s 12 agencies such as the FDA, Department of Defense, Labor Health and Human Services, CDC, etc.

Every year, we advocate for GBS to be included in the Department of Defense’s $370 million Peer-Reviewed medical research program, which includes a list of conditions that are eligible for funding and directly related to military service. Because of our advocacy efforts, GBS is eligible for researchers to apply for grant funding. Participating in this process helps us be on record for what we are hoping to accomplish and nudge federal agencies in the direction of our goals. We are often lending our voice to a collective group of like-minded organizations so that we are all advocating for similar levels of funding with a similar message of how it benefits many patient communities.

Members of the House of Representatives are elected every two years and each state’s number of seats depends on its population. Senators are elected every 6 years and each state has only two seats. Now during this year’s election cycle, all Representatives are up for reelection, a third of senators are “up”, and the presidency is up for election. So, the House and presidential candidates have been more responsive to current issues, unlike the Senate. This is important for turning a bill into law because a bill has to go through the House, Senate, and President.

So when there is a new president, the cabinets shifts with new officials. Additionally, there can be a shift in the majority between Democrats and Republicans that can control either the House or Senate. As of right now, Republicans are in majority of the House and Democrats are in control of the Senate. The Executive branch does not interfere with Congress, unless there is tie vote in the Senate, which would require the Vice President to cast a tiebreaking vote in the Senate.

Much of what Members of the House and Senate focus on is, “How does a specific item benefit my constituency? How does it affect my community, my state?” Being able to localize the issue you are advocating on is always important. Whether or not the president’s administration or the House and Senate Leadership leans Democrat or Republican, we are not likely to see an attack on healthcare in terms of protections for patients with chronic diseases because of the strong support of many patient groups and constituents across on the country on these issues. I do not foresee any cuts to the National Institute of Health (NIH), Food and Drug Administration (FDA), Center for Disease Control (CDC), or any other government agency.

No, I think we saw back in 2017 and 2018, how strong the patient community was to come out in support of the four pillars of the patient protections part of the ACA: ensuring access to care, that pre-existing condition discrimination wasn’t allowed, allowing young folks to stay on their parents’ insurance until they are 26, and eliminating lifetime and annual caps. Healthcare is one of those interesting subject areas where it affects everybody, and the strong support for these issues will make any elected official hesitant to threaten those protections.

In January, the appropriations cycle will begin once the new Congress is sworn in or when officials come back for the new session. Then, in February, the administration releases the president’s budget request, or a large document of the recommended funding for each federal agency.

In a perfect world, Committees in the House and Senate work on creating bills during May and release it in June. In July, both the House and Senate try to pass their 12 bills and use August to work out any issues. By September 30th all 12 appropriation bills should be passed before their recess. Yet, what has been happening recently – the past few years – is that Congress has been passing Continuing Resolutions, or keeping the current level of funding for an extend amount of time and putting off an official appropriations bill until absolutely necessary.

I don’t think there’s any threat to it. I think what we’d be looking at is sort of a 2.0 version to address what is different now than when the bill was originally passed. So I wouldn’t see a situation where Congress says we’re going to completely gut this bill or this law and we’re going to change it drastically.

I think you may see additions to bring it up to date in certain aspects where folks may see it necessary. But I do know that the advocacy community around this issue is so large that Congress would never go in and propose gutting the law because they know what would happen. There would be so many stakeholders who come to them and share their frustration or disappointment.

I just encourage folks to go out there and learn what you can from the candidates and listen to what they say. Again, with Congress being home for the month of August, it gives you opportunities to participate in town halls that they may have or different events where you can ask them, where do you stand on these key issues that are important to me?

In terms of our advocacy efforts and what’s important for our communities, I strongly encourage you to stay current with Foundation news in terms of the bill moving forward or appropriations or things like that. Of course, the Foundation will not endorse any candidates or put their finger on the scale for anything, but we’re just giving you facts. So however you want to make your decision, I always recommend to always follow your instincts and have conversations.

Chelsey and I have been on the Hill for years and we can go into every single House office and say I need your support for these priorities. Most will say that is very reasonable but there’s always one caveat; “Is there someone in my district or somebody in my state who can connect with me to share how this affects them locally and what effect it has on our constituency?”

It is easy to be an advocate. Every time you share your story or experience, you educate someone on your condition or the condition of a loved one. You give them that perspective, that’s advocating. You give government officials a reason to change with your story. This is the one thing I can say without speculating; you can make a difference by participating in August Advocacy. We strongly encourage your participation. It may not mean coming to DC. It may mean sending a note, connecting with an office, but please do volunteer to be an advocate because it really does help to make a difference in the lives of everybody in the communities.