Bulwark Takes - Pediatric Cancer Bill is Good News That Still Hurts

Episode Date: December 6, 2025

Sam Stein highlights 16-year-old cancer patient Mikaela Naylon, who spent her final days lobbying Congress for the Give Kids a Chance Act, helping revive the long-stalled pediatric cancer research bill, with her story inspiring new momentum and raising cautious optimism it could finally pass. Sam's piece from September 2025, "Elon Musk Torpedoed a Beloved Pediatric Cancer Bill. It’s Yet to Recover.": https://www.thebulwark.com/p/elon-musk-pediatric-cancer-bill-congressional-inertia-give-kids-a-chance Sam's piece from December 2024, "Elon Killed the Budget Deal. Cancer Research for Kids Was Collateral Damage.": https://www.thebulwark.com/p/elon-musk-killed-budget-deal-children-cancer-funding-collateral-damage

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Learn more at BP.com slash investing in America. Hey, everyone. It's me, Sam Stein. It's Friday afternoon when I'm recording this, and I wanted to do this because there's a piece of video I want to provide you guys that is, like, incredibly complex. It's complex because it's both deeply, deeply sad, and I'm going to try to hold it together through the video, but also one of the rarest signs of positive movement that I can recall over the past year. You might be wondering what the hell are you talking about. But let me start back a year ago, because I've told this story before. About a year ago, before Donald Trump took office, the United States Congress was passing a end of the year funding bill. And if you remember, there was a lot of commotion because at the time, even though Donald Trump wasn't in office, Elon Musk railed against that funding bill because he thought it was deeply wasteful. And at the last minute, Republicans in Congress decided to essentially yank the bill, even though

it had been in agreement. And they cut out all these provisions to make it just this kind of finite continuing resolution. Among the provisions that we focused on at the time were a series of reforms and investments in pediatric cancer treatments and research. One of those provisions got saved, and I did a video, God, it must have been almost 12 months ago celebrating that moment because it was a remarkable thing to see even that stuff get saved. But a couple of the other provisions did not get saved. One of those was called the Give Kids a Chance Act. So the Give Kids a Chance Act. So the Give Kids a Chance Act, and look, I'm not a doctor, so I don't want to, like, pretend to be. But basically,

it changed a bunch of the regulations around how the FDA authorizes treatments for pediatric cancer research, combination drug therapies. It gives the agency the authority to compel pharmaceutical companies to study the efficacy of those combination therapies. Among the people in the field, and this is what's most important to know, among the people in the field, this is like a big deal. Kids cancer treatments are not something that gets a lot of investment money because, to be blunt about it, not many kids get cancer. And so it's not a big moneymaker for pharmaceutical companies. And one of the ways that you can actually compel more research is to loosen the regulations. And one of the ways to loosen the regulations is legislation like if kids a chance

act. But it didn't pass. It was pushed at the last minute after the funding deal was passed. It was pushed as a separate bill, but Rand Paul, senator from Kentucky, said no, and he was able to block it because time was so short and compressed, and you had to make sure that every single senator was willing to vote for it. Otherwise, they'd have to engage in like 60 hours of debate, and they just didn't have the time. The argument from people like Elon Musk back then was, well, if it's so important, Congress will consider it on its own merits. And it didn't. The act was widely beloved. It had well enough co-sponsors in the House to pass very quickly. It didn't have the same number of co-sponsors in the Senate,

but that was not because people didn't support it. It's just that they hadn't gotten around to putting their name on it. It was well understood that if this thing just got a vote, it would pass. But it lingered. And frankly, it's been lingering for years well before what happened in 2024. It nearly passed in 2022, but Congress can work in these cryptic Byzantine ways and good ideas often just languish and inertia. And that's why that missed opportunity in 2024 was so frustrating for the advocates. They were so close to tasting it and then it was gone.

And it just sort of stayed that way through the summer and into the fall. And then something really miraculous happened. And it wasn't even on my radar. I'd written about it a couple months ago, and I just kind of forgot about it. And then one day I kind of looked up, and I got a text from someone who works on this stuff. And like, the Give Kids a Chance Act just passed the house. The hell? It didn't make any sense to me.

But it did. It passed the house. It passed the house last week. And I'm going to get into the story about how that happened because it's a remarkable story. And now it could pass the Senate. It could pass the Senate. I'm saying could for a reason because it's not guaranteed. People are optimistic that it will pass the Senate.

There's a thing called a hotline where you can basically move the legislation pretty quickly through the procedures. And it will pass the chamber, provided no one objects to it. And the expectation is hopefully that it happens next week. But there are some hurdle. I think. There's some hurdles, and we'll see. So how did it get even to the place where it's possible that it's going to pass? This is where the story goes from really optimistic and happy to devastation, honestly. So what happened is that pediatric cancer research advocates in September do this thing where they bring everyone in the community up to Capitol Hill to effectively

lobby lawmakers for their pet issues, or in this case, the Give Kids a Chance Act. And they did this thing this year, and I think they might do it every year, but they definitely did it this year, where the only ones who are lobbying are kids with cancer, and they just go around on the hill, and they meet with lawmakers, and they talk to them about what the hell is going on, and how their lives are affected by these horrific diseases that they're suffering. from and what it means to support legislation like give kids chance right and this year uh they did the same thing um and i'm told that the meetings were just gut wrenching um and one in particular appears to have really stood out and it's a young girl named macaela nalen i had no idea about her

story up until very recently. She was on the hill. At the time that she was on the hill, I'm told that she only had a few weeks to live. The doctors had told her that. And she asked her parents to spend the last days of her life lobbying lawmakers for this bill. And so she went around with friends and fellow cancer patients. And she started talking to lawmakers. And her story is awful. I mean, it's uplifting to a degree, but it's just awful, too. So she is osteosarcoma.

It's a rare bone cancer. She was diagnosed when she was 10. I'm going to read you one of the posts that she had made on Facebook. She wrote this when she was 15. She was actually 16 when she went to the hill. I'll try to get through this. She's hi, my name is Michaela Nalen. I'm 15 years old and I was diagnosed on July 1st, 2020. During COVID, I enjoyed walking my dog who saw a cat and ran, causing me to sprain my ankle. After two months of waiting, it didn't get any better. My local doctor referred me to the Children's Hospital, Denver, where I received most of my treatment. I had a below knee.

amputation in October and then multiple lung surgeries following it. After relapsing four different times, the Colorado doctors didn't have any other choices for me. Thus, I started a trial at MD Anderson. When that trial didn't work, we finally decided to take a trip to the Cleveland Clinic where I started treatment with Dr. Anderson. I've done radiation and radioactive treatments. And now I'm finishing up my final treatment, hopefully. With all these experiences under my Well, I've learned that the little things never matter that much, and they shouldn't interfere with living your life to the fullest. So, yeah, she was 15 at the time. She wrote that.

She was 16 at the time that she was on the hill. And I want to play a little bit of the clip of a video she made in and around this time. This is not her on the hill. This is her talking to members of the community about what her life was like, suffering from this disease, and still taking chemo, knowing that. her, you know, longevity was just not in the cards for her. The thought of making it to the end of the day isn't in the cards for me right now. I'm still taking chemo in hopes that it will kill this thing that keeps taking everything away from me. I'm 16. I have dreams and aspirations.

And I want to make sure that others receive a better standard of care. So a bunch of long. lawmakers talked with her. I'm told that a number of them zoomed her and sent her videos. I'm told that Senator Higginlooper of Colorado zoomed

her family. And then three hours later, she died. Michaela died on October 29th and she was 16. So, awful. It takes a lot of courage to do something like

that for your end of life. And I don't know if I have that in me. But she did. And lo and behold, a few weeks later, this bill passed the House. And right now, as I'm speaking, the Senate is considering whether to move it on hotline. And if they do, it could go to President Trump's desk and it could become law. And it would be just sort of a minor glimmer of positive news and productivity in a sea of dysfunction, discord, and controversy and inertia. Hickenlooper is not the only one who deserves credit for this. Senator Mark Wayne Mullen actually is the senator in the main senator who's on this bill and who has been pushing it, renaming the bill after Michaela. He was instrumental in that. Representative Debbie Dingle has also been an incredible champion of this legislation

and Representative Michael McCall as well. I'm going to play a little segment of what he said on the floor about this legislation. I'm told that he has been just instrumental in moving this at this time. Each year, I meet a child who impacts me in a very strong way. And this year, I was blessed to get to know this beautiful, beautiful young woman by the name Michaela Nalen. And I could see in her eyes that she was at the height of her struggle with cancer. It took so much strength for her to come to the summit, but she believed that she was meant to be there. And she wanted her presence and her voice to help shape our policies and change our world, for the better. In her final moments on this earth, I reached out to her and told her that

her story would not be forgotten and that her legacy would continue to help thousands of other children. I wanted her to know that her impact would outlive all of us. And so today in her honor, the United States Congress will vote on the Michaela Nalen Give Kitschance Act. And then Senator Michael Bennett, Hickenlooper's Colorado colleague, has also played a really important role here. There are others, too. I'm missing their names. But, yeah, I'm going to keep tabs of this. I'm going to follow this until we see its fate in the Senate.

And then if it passes, if we get a signature from Donald Trump. But because I covered this last December and because I had written about this a few months ago, I wanted to just keep following it. And I got to be honest, I didn't think it was going to pass. I'm hopeful, I guess cautiously optimistic as a way to put it, that it will pass. I still look back at the fact that it didn't pass in December 2024 as a cruel, cruel, cruel development. It wouldn't have necessarily mattered at all for Michaela, probably not at all. But it could have mattered for someone like her.

We don't know. We wasted 12 months on a piece of legislation that everyone seems to support, but Congress can't figure out how to get through its chambers until now, hopefully. So anyways, thank you for letting me open up about this. And I appreciate your attention to this. And I'll stay on top of this for you. Take care.