The Hydrocephalus Scoop on Capitol Hill for September-October 2020

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In addition to celebrating Hydrocephalus Awareness month, the Hydrocephalus Association has been tracking the ins and outs of what’s happening on Capitol Hill. As is always the case in politics, there’s good and bad news.

The Good News

Rep. Lloyd Doggett and Rep. Chris Smith, the co-chairs of the Congressional Hydrocephalus Caucus, helped us celebrate Hydrocephalus Awareness Month by submitting statements to the Congressional Record! You can read Rep. Doggett’s statement here and Rep. Smith’s statement here. Take a moment to thank them for their support on Facebook or Twitter. You’ll find them at @RepLloydDoggett and @RepChrisSmith on both platforms.

And they weren’t the only ones who supported our community. Several states and cities also passed Hydrocephalus Awareness Month proclamations, including Pennsylvania, North Carolina, South Carolina, Indiana, Colorado, Arkansas, Kentucky, Louisiana, Columbia, S.C., and Bergen County, N.J. We would like to thank Bergen County Commissioner Steve Tanelli for both hosting a podcast and participating in a video interview with our CEO Diana Gray to raise awareness during September. You can give Commissioner Tanelli a shout out on Facebook @ComissionerSteveTanelli and on Twitter @SteveTanelli.

It gets better

This month, Representatives Ron Kind (D-WI), Abigail Spanberger (D-VA), and Josh Gottheimer (NJ-5) have joined the caucus. The Congressional Hydrocephalus Caucus has been instrumental in helping the hydrocephalus community advocate for substantive changes for patients, opening doors to new research opportunities that could result in alternative treatment options, forms of prevention, and a cure. Please thank the new members of the Caucus on Facebook and Twitter. You’ll find them on both platforms at @RepRonKind @RepSpanberger @RepJoshG.

Any other good news?

No government shutdown. In the absence of an agreement on government funding levels for FY 2021 (which started October 30th), Congress passed what’s known as a “Continuing Resolution,” or “CR” to keep the government going past September 30th. The CR will be in effect until December 11th, allowing members of Congress time to come to an agreement. Fortunately, all of HA’s funding priorities, which center around research at the Department of Defense and National Institutes of Health, look to be in good shape for whatever final deal emerges. Leaders in both the House and Senate are signaling an agreement on appropriation levels equal to or even higher than our request.

The Bad News

Congress is unlikely to come to an agreement on legislation to address surprise billing and prescription drug pricing—at least before the election.

Wait. Didn’t President Trump issue some rules about those things…

That’s true. President Trump did issue several healthcare-related executive orders (or “EO”s) focused on lowering prescription drug prices, protecting people with pre-existing conditions, and preventing surprise medical bills. That said, EOs do not have the same statutory authority as bills from Congress. As a result, these orders aren’t likely to have any immediate, or even long-term, impact. If these issues are important to you, see where you elected representatives stand and send them a message!

What else is going on? Wasn’t there something about a new COVID-relief bill?

Kinda. While the parties remain at an impasse over funding levels for another COVID-relief package, some are hopeful they’ll be able to do something before the election. But that won’t be easy. The Democrat-led House of Representatives is looking for about $2 billion. The Republican-led Senate is looking more in the $1 to $1.5 billion range. 

I’m hearing a lot about the new nominee for the Supreme Court. Does that have anything to do with us?

Yes. Starting November 10th, the Supreme Court will be hearing arguments on a case challenging the constitutionality of the Affordable Care Act, with a decision likely in the next few months. Whomever is appointed to the court may be the deciding voice in this verdict, and many are concerned that the President is nominating someone who will favor striking down the law. Should that happen, President Trump has indicated his support for protecting coverage for those with pre-existing conditions. That said, it’s not likely he would be able to do that without Congressional involvement, which would take some time.

How can my voice be heard on the issues important to me?

Glad you asked. You’re not powerless, and you have an opportunity to prove that on November 3rd by voting. In these contentious times, it’s more important than ever for every citizen to exercise their right to participate in our democracy. Don’t let anyone tell you your vote doesn’t matter. It’s one of the most important tools you have to express your opinion. To register or check your registration, go to

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