Two people who inspire me
Two people who inspire me
And how they inspired Congress, too.
Good morning! It’s Friday, September 27, 2024. Election Day is 39 days away. The vice presidential debate is four days away.
If it’s Friday, it’s time for our weekly look at what Congress is actually getting done. Paging through the Congressional Record — as I do every week to put this feature together — it can sometimes be easy to forget that there are real people behind all the dry legalese of a piece of legislation
So this morning, instead of our usual focus looking inside the institutions — at lawmakers, committee chairs, etc.— I want to cast your gaze outwards, and tell you about two bipartisan bills that passed this week by introducing you to two everyday Americans who played a critical role in crafting them.
It’s not every week you get to speak with a person who inspires you. This week, I spoke with two. Let me tell you about them.
Nancy Goodman didn’t set out to be a pediatric cancer advocate. By training, she was an international trade lawyer; after her children were born, she became a stay-at-home mom. But, in 2007, her life took a sudden turn when her eight-year-old son, Jacob, was diagnosed with medulloblastoma, a rare brain cancer.
There were few treatments available for the disease, which primarily affects children. “The drugs used to treat Jacob’s tumor were all 40 years old,” she told me. “There was no theory they would work. And Jacob had 20 terrible, terrible months, and then he died.”
“And the question I had was, ‘Why is it that in this world we live in, with the pharmaceutical and biotech industries so well-resourced, with very bright people and brilliant scientists working with them, with tremendous fundraising capacity and infrastructure — why is it that we have no drugs for kids? What the heck?”
The next morning, Goodman founded the nonprofit Kids v. Cancer. Like countless students of the legislative process before her, the first thing she did was watch “I’m Just a Bill,” the classic song by Schoolhouse Rock. “I’m a lawyer, but I’d never written a bill before,” she told me. “That’s not what they teach you in law school.”
Goodman spent the next year interviewing economists, biotech CEOs, and venture capitalists, trying to figure out a way to incentivize more research into pediatric cancer, which accounts for a small percentage of overall cancer research and drug development. Then, she spent another year drafting a piece of legislation. The product was the Creating Hope Act, which was eventually signed into law in 2012. (It didn’t hurt, she said, that had a built-in army of difficult-to-deny lobbyists. “Whenever I had a really tough visit on Capitol Hill and I was trying to figure out what to do, I’d take [my son Ben] out of school, and he’d say, ‘Mom, do you want to make this person cry?’ And I’d say, ‘Yes, please.’”)
Under the bill, whenever companies receive FDA approval for a new pediatric cancer drug, they also receive a voucher promising priority review for a future (presumably more profitable) drug. The vouchers can also be sold to other companies, and — just to give you an idea of how sought-after these vouchers are — one was sold for $108 million earlier this year. So, that tells you just how big a prize these companies are getting when they develop rare disease drugs for children, which otherwise wouldn’t be a very profitable endeavor.
Since its enactment, the program has spurred the approval of more than 60 new drugs treating 39 rare pediatric diseases — 36 of which previously had no approved treatments. More than 200,000 patients have benefited.
Goodman continued her crusade with the RACE for Children Act, a 2017 law empowering the FDA to require companies study whether their new adult cancer drugs would also work for children. “The RACE for Children Act has been transformational,” she said. “It used be that no newly approved cancer drugs were studied in kids. And now, of the ones relevant in children, 80% are studying kids.”
But, Goodman told me, there’s a catch: “Now, scientists tell us, the best odds of finding a new cure is [finding] a new combination of targeted therapies.” This practice of prescribing two drugs at the same time has been found to be much more effective than just giving patients a single drug — but in the last four years, while 40 new cancer drug combinations have been approved for adults, only two have been approved for children.
Goodman’s latest bill, the Give Kids a Chance Act, would seek to close that gap by giving the FDA the power to direct companies not only to explore whether their new adult drugs could be used for kids — but also whether the new drug can be combined with other drugs the company has developed in order to produce an effective combination for kids.
Three years after it was first introduced, the bipartisan measure passed the House unanimously this week. “With 235 cosponsors, this legislation is one of the most bipartisan bills in Congress,” Rep. Mike McCaul (R-TX), its sponsor, said on the floor before the vote. “Because there’s nothing partisan or political about a child with cancer.” The bill would also reauthorize the Creating Hope Act voucher program, which is set to expire at the end of the year.
What I found striking about Goodman was her precise, lawyerly approach to legislation, even despite the unimaginable tragedy she has experienced. On the Hill, the higher-profile activists tend to be the ones who throng to sweeping proposals, plans that are as expansive as they are unlikely to be passed. But the more successful activists tend to be more like Goodman, who spends months — even years — studying an issue from all sides, consulting scientists and bureaucrats, and zeroing in on what she calls “one-change solutions.”
Companies aren’t developing enough pediatric cancer drugs? Voucher program. Adult drugs aren’t being studied for how they might help kids? Empower the FDA to direct that. Single drugs aren’t enough? Do the same for combinations. “We try to find a problem for which a narrow solution would have a really dramatic effect” and at least a “two-thirds chance of passing,” Goodman explained.
She also approaches the major stakeholder in the arena — pharmaceutical companies — more as a partner than an enemy. “A company is a for-profit institution that has a fiduciary duty to their shareholders,” she acknowledged. “I mean, given those constraints, how is a company going to go and do a combination study for pediatric populations, when the increased revenue from the study is de minimis or maybe even zero?”
But, she said, “within the companies, scientists love this stuff. They want to [develop drugs] for kids.” So a bill like the Give Kids a Chance Act allows the government to step in and solve what she compared to a Prisoner’s Dilemma for the companies. “For one company to go in and undertake pediatric studies, when none of the other companies are, puts them at a slight disadvantage competitively,” Goodman said. “But if everyone has to do it, then suddenly everyone gets to.” (All of her proposals, she also noted, come at no cost to taxpayers and minimal cost to the companies.)
Goodman said she is hopeful about passage in the Senate, where a companion bill has already attracted bipartisan support. If the bill becomes law, she said, “kids are going to have close to the same chances that adults have to benefit from new science… When Jacob was sick, [the newest ideas in cancer research] only benefited adults, right? And now they’re going to benefit both adults and children.”
Over the past 15 years, Goodman has thrown herself into finding these “one-change” solutions — innovative fixes that use the levers of government to solve a narrow problem — and lobbying for them, which isn’t always easy work. “When I have a really hard day,” she said, “I just think, there’s some kid, and I don’t know that kid, but that kid’s gonna have a better life because I had a really hard day. And so it’s totally worth it.”
This week, the House passed another bill advancing a “one-change solution” — tackling a narrow problem that isn’t so narrow for many Americans.
Under the Americans with Disabilities Act, the landmark bipartisan law, it has been illegal since 1990 for hospitals to discriminate against people with disabilities. And yet, a 2019 report by the National Council on Disability found, “organ transplant centers and medical professionals are often unaware that this prohibition applies to the organ transplant process.”
As a result, the report said, disabled Americans are routinely denied organ transplants based on a “subjective analysis” of their “quality of life” rather than an objective analysis of their medical need. According to another study, 85% of organ transplant centers consider a patient’s disabilities when deciding whether to add them to the transplant list.
That can be often be a life-or-death consideration for people with Down syndrome, about 50% of whom are also born with heart conditions. Charlotte Woodward is one of them; luckily, in 2012, she was able to receive a heart transplant. When she learned that others with Down syndrome are often denied transplants because of their disability, “it made me so sad and angry and mad — and righteously so — that I had to do something,” she told me. “So I channeled my emotion into a campaign for organ transplantation equality.”
Woodward started out in her native Virginia, where she was instrumental in advocating for a bill to prohibit organ transplant discrimination, which passed the state legislature in 2020.
In our interview, Woodward choked up as she shared the story of four-month-old Zion Sarmiento, a Florida boy who died the next year after doctors declined to give him a heart transplant because of his Down syndrome. “I cannot describe the emotion I feel when it comes to this story,” she said. “It’s heartbreaking.” So, she took her campaign national. Woodward brought her lobbying to Congress, where a bill was eventually introduced by Rep. Kat Cammack (R-FL), who counted baby Zion as as constituent.
Acts of Congress aren’t usually named for anyone — and, when they are, it is often for the lawmakers who wrote it (the Dodd-Frank Act) or other prominent Americans (the Muhammad Ali Act). Cammack named her bill the Charlotte Woodward Organ Transplant Discrimination Prevention Act, an acknowledgement of Woodward’s advocacy for an issue few others were paying attention to.
It also passed the House unanimously this week.
The bipartisan measure would explicitly prohibit hospitals or transplant centers from denying anyone an organ transplant “solely on the basis of a qualified individual’s disability.” It also includes an enforcement mechanism, setting up an expedited review process for individuals who believe their rights under the legislation have been violated.
“It’s quite an honor,” Woodward said, when asked how it felt to have a House-passed piece of legislation named for her. “I’m proud to have had a hand in advocating for what’s right.”
What else Congress got done this week
This was Congress’ last week in session until Election Day, which means a lot of last-minute legislation got passed, in addition to the Give Kids a Chance Act and the Charlotte Woodward Organ Transplant Discrimination Prevention Act. Here’s a sampling:
💰 Most notably, both chambers passed (and the president signed into law) a continuing resolution that will extend government funding through December 20, averting a shutdown. The measure — which passed 341-82 in the House and 78-18 in the Senate — also includes more than $230 million in emergency funding for the Secret Service.
🚔 Speaking of the Secret Service, the Senate unanimously passed the Enhanced Presidential Security Act, which also passed the House unanimously last week. The bill would require that the Secret Service use the same standards when determining security levels for presidents, vice presidents, and major presidential and vice presidential candidates. (The bipartisan task force investigating the Trump assassination attempt also held its first hearing, while a Senate committee released their bipartisan report on the incident.)
⚡️ The House approved a slew of bipartisan bills to accelerate the permitting process, including for geothermal energy projects (passed unanimously), forest management projects (passed 268-151), and semiconductor manufacturing (passed 257-125). The semiconductor bill (which will accelerate the process for projects to receive approval under the CHIPS and Science Act) previously passed the Senate unanimously. President Biden has said he will sign it, despite concerns from some environmentalists.
🎖️The Senate unanimously approved a pair of House-passed bills to implement a cost-of-living increase for veterans benefits and pay back veterans who were defrauded out of their benefits, sending them to the president’s desk. The House unanimously approved a pair of Senate-passed bills on Alzheimer’s research, sending them to the president’s desk.
🍼 The Senate unanimously passed bills allowing passengers to take breast milk and baby formula through TSA screening and boosting rural broadband access. The chamber also unanimously approved a range of resolutions, including one honoring Wadee Alfayoumi, a six-year-old Palestinian-American boy who was killed in a hate crime in Chicago, and another holding a health care CEO in contempt. It was the first time in more than 50 years that the Senate has held anyone in criminal contempt.
📱The House unanimously passed the Online Dating Safety Act, which would require dating apps to notify users if they had conversations with a user who has been banned from the app for fraud, and the Stop Campus Hazing Act, which would require colleges to increase reporting of hazing incidents.
More news to know
NYT: Cheap Flights and Deleted Texts: 10 Takeaways From the Adams Indictment (gift link)
Fox News: Multiple people with ties to Iran indicted in relation to Trump campaign hacking plot
WSJ: Harris Tiptoes Away From Electric Vehicle Stance as Trump Seizes an Opening in Michigan
The day ahead
All times Eastern
President Biden will travel to Rehoboth Beach, Delaware, where he will spend the weekend.
VP Harris will travel to Douglas, Arizona, for her first trip to the U.S.-Mexico border in more than three years. She will receive a briefing on the flow of fentanyl across the border and deliver remarks calling for increased border security measures. (Watch at 7:45pm)
Former President Trump met this morning with Ukrainian president Volodymyr Zelensky in New York City. Later, he will campaign in Michigan, holding events in Walker (watch at 2pm) and Warren (watch at 6pm).
The House and Senate are off until Election Day.
Thank you Gabe, as always you teach me so much about government. When I finished this article I thought, "I'm subscribing to this for life." Best subscription I have.
Mainstream news channels never report on the more ordinary legislation making is way through Congress thus leaving most of us thinking they never do anything at all. Thanks for reporting on this so those of us that read your reporting are aware of these important bills.