Connecting ALS

This week, Jeremy is joined by Denise Bailin, Director of Congressional Affairs at The ALS Association for a deep dive into the role federal funding plays in the fight against ALS and how advocates can help expand existing funding on ALS.
 
Learn more about The ALS Association’s public policy priorities at https://www.als.org/advocacy/our-priorities/federal-public-policy-priorities
 
Become an advocate at https://als.quorum.us/register/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

What is Connecting ALS?

Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.

Denise Bailin:
We need FDA to be a part of this process in supporting new technology and new ideas because they're in charge of approving future ALS therapy. So we want them to be in involved from the beginning to support a new therapy, to move it faster and to get it to people living with ALS faster.

Jeremey Holden:
Hello everyone and welcome to Connecting ALS. I'm your host, Jeremy Holden. It's budget season in Washington, DC, and that means advocates will be meeting with lawmakers in the coming weeks to press for spending on critical programs. That includes ALS advocates. In recent years, we have successfully fought for increased federal spending for the fight against ALS, including a doubling of research supported by the Department of Defense up to $40 million. But our work is not done.
Increased federal funding on ALS research is important because the federal government spends more than $10 for every $1 the ALS Association funds, and that means we need to fight to make sure the federal government expands funding on ALS research even more as it puts together its next fiscal budget. Joining me to talk about what advocates will be seeking this year is Denise Bailin, Director of Congressional Affairs at the ALS Association. Denise, thank you so much for being with us this week on Connecting ALS.

Denise Bailin:
Good to see you again.

Jeremey Holden:
Yeah. We're here to talk about an important topic. Seems like one that comes up often this time of year, but that is the federal appropriations process. I want to start with a basic of what appropriations are and why is now a good time for us to be thinking about, talking about, acting on appropriations?

Denise Bailin:
Well, I always love the holiday season, but appropriation season is my second favorite time of year because we're in the thick of it. We're in the thick of appropriations right now. It usually starts when the president has his State of the Union address and he lays out his priorities for the year. And then what Congress will do is set their own priorities for the year. So right now, that is exactly what both of them are doing. The president released his budget on March 9th and sending his priorities in this funding that he wants to support for the next year. And then Congress is going to do the same thing. Congress is going to share how much they're going to spend for the next fiscal year, and that's what they call a budget of resolution and House and Senate does both of that.
So what we here do here at the ALS Association is make our requests to every senator and representative that sits on appropriations committee. They decide how to spend the money that the government sets aside. So the appropriators are a very important part of this process. There are 12 appropriations bills that Congress has to debate and resolve differences before September 30th. This is March, but September 30th is right around the corner because the new fiscal year starts on October 1st of 2023. They need to work all these monetary figures out before they move forward. So this is the time we get involved. We put forth our priorities at the association for ALS research and have them fund them.

Jeremey Holden:
You mentioned the 12 appropriations committees in Congress. How many of those directly impact the work or the requests that we're going to be making? Are we in front of all 12 or are there specific ones that we focus on that listeners need to maybe pay close attention to in the coming months?

Denise Bailin:
Well, luckily we only have to worry about three of those 12 bills. We focus a lot on the Labor, Health and Human Services appropriations bill. We also focus a lot on the defense bill. I'll get into that later. Why is ALS and defense related? But it is very much so. And then we also work ourselves into the agriculture bill because that's where the Food and Drug Administration lives and gets funded from. So there are three of the 12 that we focus on.

Jeremey Holden:
Before we get into that focus, appropriations is part of the spending process. Appropriating then allocating and then that money gets spent. So for folks who are maybe new to the fight or don't pay super close attention to government public policy issues, what role does federal spending play in the fight for ALS?

Denise Bailin:
Well, we need that money. We need that money to find new treatments and cures to make ALS a livable disease. But we need science to do that. Science and money, how is that related? Because researchers who do the science on ALS are part of the cycle. They look to see how ALS affects the body and how to stop that from happening. But they need that funding in order to take a look at what they have found there might be a connection to. So we need them to be supported in order for them to come up with a great idea that a drug company will then test that theory and create a new drug that can cure the disease. So we need more than philanthropy with the ALS Association. We need government to fund that work on ALS research so that we can get news therapies and a cure.

Jeremey Holden:
So you mentioned the three bills that are front and center for the ALS community. What is the Association, what is the broader ALS community going to be asking for during this appropriations process, and again, looking ahead to the next fiscal year?

Denise Bailin:
Well, last year we were very successful in securing $250 million for ALS research and we should all be thankful and grateful and excited to see how much research that's going to support to get us to a cure. So we are going to really focus on more money because we've 250, let's go for more because the need is still out there. So we're going to focus on, I'll give you the basics and I'll get into it, we are looking at $150 million at NIH, $100 million to support the Act for ALS, $80 million at the Defense Department, and $15 million at the CDC. So all this research will get us closer to making ALS a livable disease, but specifically we are asking Congress to fully fund Act for ALS. That's $100 million Congress says we can spend on it. So that's great.
So in that 100 million, we're asking for 75 million to go for expanded access. That's to support people who can't get into a clinical trial to try an experimental therapy and have that [inaudible 00:07:10] paid for as well because that's also a costly endeavor for people. So that's 75 million there. The other 25 million we're going to is to the FDA that has the FDA rare neurodegenerative disease grant program. They award grants for the development of new therapies, but more so tools to test these therapies and how to design a trial and what new technology will help measure the effectiveness of the new drug. We need FDA to be a part of this process in supporting new technology and new ideas because they're in charge of improving future ALS therapy. So we want them to be in involved from the beginning to support a new therapy, to move it faster and to get it to people living with ALS faster. So that's just what we're asking for for Act for ALS. A $100 million can go a long way.
We're also focused a lot on the Defense Department. Again, why are we going to the Defense Department for money? Because they have a program that is the only federal funding that is specific to ALS research. Everything else is related to neurological disorders, but this one at the Defense Department is just for ALS. Last year we got 40, we're asking for double. That's because they are doing such great work on preclinical research. That is the idea to almost drug faith. That's that middle ground from NIH to drug company. So we really want them to expand their work to get closer to clinical trials and support clinical trials, because we have to relate it to why the Defense Department, because ALS is the only disease that occurs at a higher rate in veterans regardless of their era of service. So we need more research to prevent, delay, treat and cure veterans and people living with ALS. So if Congress wants to support our heroes in the military, that means they need to fund more research on ALS for them.
I mentioned NIH. NIH is still the largest public funder of ALS research. Last year they got 120 million. This year we're asking for 150 million. That is because they really focus on the ideas that are out there. They support those ideas. What are those new treatments? What is the problem? What is the solution this researcher can really find out? Really helps accelerate the discovery of new treatment options. So that is very critical that we have that basic research done and funded at the NIH. You hear about the NIH a lot when you hear about the budget and the president's budget as well.
Our last ask is at the CDC. So the CDC has a national ALS registry and bio repository, and what they do is they collect biologic samples and they connect researchers with those samples. They also try to connect people living with ALS to clinical trials sites as well. But what they also do is, and this makes them a little bit unique, is that they focus on research on causes and risk factors. Think of who they are, the Centers for Disease Control. They want to control this disease. So what should they need to do in order to control it? So they do some research out there. Whatever's left that they have from not supporting the registry. So that's why we're asking for more money than we did last year because we really want them to focus on prevention strategies for our military, why it's happening.
Because it's been 80 years since Lou Gehrig and we still don't know why people develop ALS in 90% of the cases. And more than likely it happens to people who are veterans who served in the military. So like I said, we want more money. We're asking for over 250 million that we got last year. So we want money from the NIH to do their foundational research, Act for ALS to support those efforts, funding for the DOD and CDC. Like I said, more money into research will help us get closer to making ALS a livable disease.

Jeremey Holden:
Yeah, it sounds like a very ambitious agenda. And as you mentioned, the support that the federal spending in the past has been great, it's increased, still not enough to meet the need that's out there to look for treatments, cures, identify risk factors, and figure out ways to prevent and eventually cure cases of ALS. So we've talked about what the asks are. How does it happen? It's not as simple a function of posting something on Twitter or jumping on a call with the Speaker of the House or the heads of committees. What's the process like? I know dear colleague letters is something that we hear about quite often, but talk to me a little bit about what you and your team are going to be doing and what advocates that are listening in are going to be doing over the coming weeks and months.

Denise Bailin:
Well, the best part for anyone listening to this, you all can be involved. Everyone can be involved in the appropriations process by making your voice heard. So what we usually do at the ALS Association is make our voice heard by working with a lot of champions for ALS in the Senate and in the House. They will put together what you mentioned, a dear colleague letter. And a dear calling letter is a coalition of members of Congress who all get on this one letter saying, "We support this." We have a lot of support and we have had support and we continue to have a lot of support for this dear colleague letter that really outlines all the appropriations priorities we have for ALS research. I mean, last year we had 33 senators and I believe 138 representatives sign this letter. It's great.
We can get more because the need for research funding for ALS is so important. We need everyone. It's a bipartisan issue. It's an important issue that affects families every day. So we need members of Congress to hear that from people living with ALS who have been affected by ALS that more research dollars are needed in order to make this a livable disease. So we're launching the House dear colleague letter and a Senate dear colleague letter. Yes, they're a bicameral government, and they work separately but together on the same priorities for more funding for ALS. So we're looking forward to that, seeing how much support we get this year.

Jeremey Holden:
You mentioned the advocates across the country, that they have a role in this too. So what can folks listening who want to engage in this, who want to be part of increasing funding at the federal level for ALS research, what can they do?

Denise Bailin:
I know people who are probably listening to a podcast, if they're like me, you're doing something else. You're part of your daily life. You're putting away dishes, you're caring for someone. You're just trying to get through your day. But if you pause right now, you can get involved. If you have not gotten an email from the ALS Association, I want to direct you to our Facebook or Twitter. Everyone's got that. You have that on your phone. Look up the ALS Association. And from there, you can message your senator or member of the House or your representative to make this request for ALS research. You can share your experience about how your family has been impacted by ALS, and stress the impact that ALS has made on your life and stress that you want a cure, you want to make this a livable disease. And with that, we need more money for ALS research. So, please be an advocate. Get involved.

Jeremey Holden:
Yeah, absolutely. For folks who did not pause, or for those who unpaused and listened to the rest of this discussion, we will certainly share links in the show notes where people can get involved in that process. Denise, a lot of work ahead. We know we have the right people leading that fight. Thanks for carving out a little bit of time for us this week.

Denise Bailin:
Thanks for having me. I hope everyone gets involved in this fight for ALS appropriation.

Jeremey Holden:
I want to thank my guest this week, Denise Bailin. If you like this episode, please share it with a friend. And while you're at it, rate and review Connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners. Our production partner for this series is Citizen Race Car. Post-Production by Alex Brower, Production Management by Gabriela Montekeen, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.