Pediatric Cancer Bill is Good News That Still Hurts

Summary

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Bulwark Takes — “Pediatric Cancer Bill is Good News That Still Hurts”

Date: December 6, 2025
Host: Sam Stein (Bulwark Team)

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Episode Overview

This episode centers on the recent movement of the “Give Kids a Chance Act,” a piece of legislation aiming to address pediatric cancer research and improve treatment options for children. Host Sam Stein walks listeners through the bill’s tumultuous journey, its near-passage and setbacks, and the deeply personal story of Michaela Nayland, a young cancer patient and advocate, whose fight and tragic passing played a pivotal role in pressing lawmakers to act. The episode reflects on the mix of optimism and heartbreak that accompanies progress in a gridlocked Congress.

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Key Discussion Points & Insights

1. Legislative Background & Obstacles

• The Give Kids a Chance Act seeks to reform FDA regulations and compel pharmaceutical companies to study combination drug therapies for pediatric cancers.
  • Why it matters: Pediatric cancer is rare, so drug companies have little financial incentive to invest in research; this legislation seeks to push forward innovation for treatments “not a big money maker for pharmaceutical companies.” (D, 03:48)
• The bill was almost included in an end-of-year funding deal in 2024 but was blocked by Senator Rand Paul, leading to a lost legislative opportunity despite broad support.
  • “Congress can work in these cryptic, Byzantine ways, and good ideas often just languish in inertia.” (D, 05:08)
• For months, the bill stalled—widely supported but trapped by procedural hurdles and Congressional inertia.

2. A Miraculous Turn

• Unexpectedly, the Give Kids a Chance Act passed the House in late 2025, reigniting hope it could clear the Senate, thanks to a procedural maneuver (the “hotline”).
  • “And now it could pass the Senate. I’m saying ‘could’ for a reason, because it’s not guaranteed.” (D, 06:17)

3. Personal Advocacy: Michaela Nayland’s Story

• Advocacy groups brought pediatric cancer patients themselves to Capitol Hill in September, amplifying the emotional case for the bill.
• Michaela Nayland, a 16-year-old with osteosarcoma, spent the final weeks of her life lobbying lawmakers.
  • Her story—diagnosed at 10, enduring years of treatment trials and surgeries—was relayed in her own words:
    • “With all these experiences under my belt, I’ve learned that the little things never matter that much and they shouldn’t interfere with living your life to the fullest.” (Michaela, quoted by D, 09:38)
  • Sam Stein shares the wrenching reality: “She asked her parents to spend the last days of her life lobbying lawmakers for this bill.” (D, 08:26)
• Michaela died October 29, just after a final Zoom call with Senator Hickenlooper. A few weeks later, the bill passed the House—now renamed after Michaela.

4. Bipartisan Lawmaker Support

• Key sponsors and champions:
  • Senator Markwayne Mullin (pushed for renaming after Michaela)
  • Rep. Debbie Dingell
  • Rep. Michael McCaul (whose statement on the House floor highlighted Michaela’s legacy)
  • Senator Hickenlooper and Senator Michael Bennet (of Colorado)
• Michael McCaul on the House floor:
  • “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...” (E, 13:21)

5. A Bittersweet Victory & Ongoing Uncertainty

• The episode underscores continued uncertainty—Senate passage not guaranteed, presidential signature not final.
• Sam Stein’s tone is emotional but hopeful, reflecting collective frustration at Congressional delay:
  • “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.” (D, 14:50)

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Notable Quotes & Memorable Moments

• On Congressional Inertia:
  • “But Congress can work in these cryptic, Byzantine ways, and good ideas often just languish in inertia.” (D, 05:08)
• On Pediatric Cancer Research Challenges:
  • “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 money maker for pharmaceutical companies.” (D, 03:48)
• Michaela’s Words:
  • “With all these experiences under my belt, I’ve learned that the little things never matter that much and they shouldn’t interfere with living your life to the fullest.” (D quoting Michaela, 09:38)
  • “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.” (Michaela, 10:36)
• Rep. Michael McCaul on Michaela’s Legacy:
  • “I wanted her to know her impact would outlive all of us. And so today, in her honor, the United States Congress will vote on the Michaela Nayland Give Kids a Chance Act.” (E, 13:39)
• Sam Stein’s Reflection:
  • “I guess cautiously optimistic is a way to put it...” (D, 14:31)
  • “Thank you for letting me open up about this... I’ll stay on top of this for you.” (D, 15:13)

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Timeline & Timestamps

| Timestamp | Segment | Content | |-----------|---------|---------| | 01:29 | [Start] Sam Stein’s introduction | Contextualizes why the news is “bittersweet” and sets up story | | 02:10 | Legislative background | Reviews failed attempts to pass bill, unique barriers for pediatric research | | 06:17 | Bill unexpectedly advances | House surprise passage, possible Senate “hotline” maneuver | | 07:00 | The lobby day | Cancer kids on the Hill, focused on Michaela’s story | | 08:40 | Michaela’s journey | Michaela’s advocacy and Facebook post | | 10:36 | Michaela’s own words | Emotive testimony about her experience and hopes | | 11:32 | Michaela passes away | Just after call with Hickenlooper; emotional impact | | 12:21 | Lawmaker tributes | Bill’s sponsors, floor speeches honoring Michaela | | 13:21 | Rep. Michael McCaul’s remarks | Direct tribute highlighting Michaela’s courage and legacy | | 14:31 | Sam Stein’s closing thoughts | Frustration with Congressional delay, cautious optimism |

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Final Thoughts

“Pediatric Cancer Bill is Good News That Still Hurts” is a poignant reflection on resilience—in advocacy, in a grieving family, and (finally) in a Congress moved to action by young lives lost. Sam Stein’s delivery is raw, heartfelt, and cautiously hopeful: the bill’s story remains unfinished, and he pledges to continue reporting on its fate.

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For more updates, stay tuned to Bulwark Takes.

Transcript

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[D]

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 an 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. And look, I'm not a doctor, so I don't want to 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 money maker 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 than 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 in 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 hurdles. 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.

Like, 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 they did the same thing. And I'm told that the meetings were just gut wrenching.

And one in particular appears to have really stood out. And it's A young girl named Michaela Nayland. I had no idea about her story up until very recently. She was on the Hill. She 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 says, hi, my name is Michaela Nayland. I'm 15 years old and I was diagnosed on July 1, 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 belt, I've learned that the little things never matter that much and they shouldn't interfere with living your life to the fullest.

She was 15 at the time she wrote that. She was 16 at the time that she was on the Hill. And 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 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 29, and she was 16. So awful.

It takes a lot of courage to do something like that for your end of life. And I. 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 Dingell has also been an incredible champion of this legislation, and Representative Michael McCall as well. I'm gonna 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.

[E]

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 Naylon. 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 McHale and Allen give Kids a Chance Act.

[D]

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 file 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 gotta be honest, I didn't think it was going to pass.

I'm hopeful. I guess cautiously optimistic is 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.

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