Democrat News
Dan Osborn is looking for ‘working-class heroes’ to shake up U.S. politics
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Omaha, NE — Dan Osborn, a mechanic by trade, has been rebuilding a 1988 Pontiac Firebird in his garage. He plans to drop in a fuel-injected V-8 engine at some point, but these days Osborn, whose tattoos tend toward the nautical, is spending much of his time trying to convince working-class candidates to break into politics.
He looked at the car, covered in dust, upholstery torn.
“I’m working on it with my son,” he said. “It’ll get done one day.”
Osborn became a political surprise last year when he ran for the U.S. Senate as an independent in Nebraska and lost a close race to Republican incumbent Deb Fischer. If he had won, it could have narrowed the balance of power in Congress and complicated President Trump’s agenda.
His mechanic versus the well-monied career politician narrative inspired his new Working Class Heroes Fund, a political action committee that has raised about $500,000 in donations since November to train unions to recruit and support local and national candidates. They include an electrician running for the Wisconsin state legislature and a Marine combat veteran and mechanic challenging Sen. Joni Ernst (R-Iowa), whose vote was key in confirming Pete Hegseth as Secretary of Defense.
Dan Osborn, center, speaks at an election night watch party on Nov. 5.
(Bonnie Ryan / Associated Press)
“We want to give working-class people a seat at the table,” said Osborn, 49, who in 2021 led hundreds of his fellow union members on a 77-day strike against the Kellogg cereal plant in Omaha. “We’re about to have our first trillionaire in this country. I was blown away: $50 trillion since 1980 has migrated from 90% of Americans to the top half of 1%. The super-uber wealthy class is taking advantage and they’re doing it through our elected officials.”
Osborn’s appeal is an everyman’s plainspokenness tuned into the anger and disenchantment not only of the Midwest factory worker and farmer but of the Silicon Valley gig worker, the Hollywood tradesperson and the Las Vegas waitress: “I don’t call it economic populism. I call it paycheck populism,” he said. “That’s what makes sense to me. The economy is a huge thing. I can’t pin what that means. But I know what a paycheck is. I live week to week on it. And it’s not stretching as far.”
The test his movement faces — he may run against wealthy Nebraska Sen. Pete Ricketts in 2026 — is winning over disgruntled Democrats and making deeper inroads into Trump’s base. Osborn favors workers’ rights and higher corporate taxes but leans conservative on immigration and China. He won 20% of Trump voters in his Senate race.
Support for his brand of politician could rise as the president moves to cut social programs and splits widen in the Republican Party between tech billionaire backers like Elon Musk and those like Vice President JD Vance, who has emphasized the concerns of the working class.
Dan Osborn sits in his garage beside the 1988 Pontiac Firebird that he and his son, Liam, have worked on together over the past year.
(Rebecca S. Gratz / For The Times)
“Dan was able to break through,” said Jane Kleeb, chair of the Nebraska Democratic Party. “He can walk into a bar or a union hall in a Carhartt jacket because that’s who he is. He has a very authentic connection to Nebraskans. Voters want people like Dan to represent them, more teachers, union leaders and cops. He shook things up for both parties.”
Danny Begley met Osborn when he handed out sandwiches and firewood along picket lines during the Kellogg strike. A member of the International Brotherhood of Electrical Workers and an Omaha city councilman, Begley said Osborn “stood up to corporations and became a Rocky Balboa long shot against a powerful senator. He’s transformational. He’s not [programmed] to say what some think tank in Washington, D.C., says. He says what he believes in, and that matters in post-pandemic America.”
::
On a recent day, as a winter dusk settled over fields behind his house, Osborn sat in his living room, wearing jeans, a flannel shirt and work boots. His wife, Megan, and their daughters — Georgia and Eve — were in the kitchen making salad and lasagna.
“It’s boyfriend night,” said Osborn, nodding toward the young man dating Georgia, a dancer who had recently returned home from Los Angeles. He listened to the chatter and recalled an evening not too many years ago when he and Megan were doing their taxes and discovered the consequences of his working a lot of Sunday double-shifts at Kellogg.
“I know what a paycheck is,” Dan Osborn says. “I live week to week on it. And it’s not stretching as far.”
(Rebecca S. Gratz / For The Times)
“I paid $30,000 in taxes that year, but then we found we owed another $10,000 because the overtime kicked us into a higher bracket,” said Osborn, who now works as a steamfitter at a mechanical firm. “Megan was sitting there crying in the kitchen. I was so mad, so angry at my government. How are you supposed to get ahead?”
A dog barked. Voices drifted in and out of the kitchen. Dinner was almost ready, and Eve, a high school junior, had to go upstairs soon to do homework. There was an empty place at the table for his son Liam, who was away at college studying aviation. Bread was cut and the scent of garlic and tomato lifted in the oven air.
The son of a railroad man and a seamstress, Osborn’s life is a portrait of a large swath of America: He played basketball in high school, bused tables and did a stint in the Navy, where he worked the flight deck on the USS Constellation (“she’s scrap metal now”). He joined the National Guard, enrolled at the University of Nebraska-Omaha, dropped out when Megan got pregnant, and went to work at Kellogg, where he carried a union card and wondered about what would come next.
While Osborn’s family grew, the nation’s politics shifted. Many Democrats embraced identity politics and Republicans fell in line with Donald Trump’s reinvention of the party with nationalist populism that spoke to working-class grievances against globalization and immigration. Osborn, like millions of others, including 300,000 independents in Nebraska, does not feel kinship with either camp, but his populist sentiments are not as extreme as those of Steve Bannon, Trump’s former advisor who blames tech oligarchs for destroying America.
Osborn lost to Fischer by about seven percentage points, but his candidacy showed what a political outsider in a polarized nation could accomplish.
“It was rough early in the campaign with grassroots field operations,” said Evan Schmeits, who managed Osborn’s campaign last year. “We were independent. No party backing. We went into these forgotten rural areas. We were able to get a lot of Trump voters because we concentrated on economic issues. We did well in the suburbs too. We were bringing people together in this era of divisiveness.”
Fischer and Republicans paid little mind to Osborn in the early days of the campaign. That changed when polls showed a tightening race and Osborn raised more than $30 million, catching the attention not only of the working class but of organizations such as the Patriotic Millionaires, a group of wealthy Americans seeking an equitable economy.
Hollywood also took notice. Producer Tom Ortenberg, whose company distibuted “The Apprentice” biopic about Trump, and Julia Louis-Dreyfus, who played a fictional vice president in “Veep,” hosted fundraisers for him.
Fischer portrayed her rival as a politically naive disciple of Bernie Sanders, calling Osborn “a lifelong far-left Democrat now masquerading as a moderate ‘Independent.’”
Osborn countered with ads suggesting he was closer to Trump than liberals on a number of issues, although his calls for immigration reform were directed toward restricting U.S. corporations from recruiting and exploiting migrant labor at the expense of working-class Americans. “Companies are paying migrants low wages to enrich themselves,” he said.
Dan Osborn chats with patrons of a brewery in Beatrice, Neb., in July.
(Margery Beck / Associated Press)
In one ad, Osborn held a blowtorch and said: “I’m where President Trump is on corruption, China, the border. If Trump needs help building the wall, well, I’m pretty handy.” Republicans then attacked Osborn for leading the Kellogg strike, which they claimed led to the company’s announcement that the Omaha plant was set to close in 2026.
The strike was pivotal to Osborn’s political ascent, coming at a time when unions, including the United Auto Workers, were pushing harder against companies for higher wages and benefits. (Kellogg fired him after the strike, saying he was watching Netflix during work. He said the charge was trumped up and his dismissal was retaliation.) His pro-labor philosophy echoed Nebraska’s legacy of prairie populism, notably the founding of the People’s Party in the 1890s, which criticized Republicans and Democrats for failing to protect workers and farmers.
“It wasn’t until corporate greed came knocking at my doorstep that I really started to observe the world in a different way,” said Osborn, who studied up on labor history and worked with other union members to raise $200,000 in strike funds. “I enjoyed fighting for working-class people at a time when Kellogg’s had profited greatly after COVID while everyone was working seven days a week, 12 hours a day that whole year as essential workers, no time off.”
Widening class differences, he said, are reflected in Congress where many members, especially in the Senate, are rich. They wouldn’t relate, he said, to the fact that “debt collectors don’t care if you’re on strike.” Osborn, who mentioned during the campaign that he didn’t own a suit, alluded to the idea that Trump and the billionaires around him epitomize corporate America’s hold on politics.
“I don’t have a problem with the existence of billionaires,” he said. ”I have a problem with our elected officials being in that class. Somebody like me is going to approach a policy differently than Sen. Pete Ricketts, whose family founded TD Ameritrade and owns the Chicago Cubs. He’s not going to see the world like I do. The federal government should look more like its citizens.”
Osborn can sound like a factory man from a Bruce Springsteen song, a character whose youthful exuberance and restless sense of escape have been tempered by life’s hard awakenings. He made more than 200 campaign stops across the state last year. His stories of struggle resonated from farm fields to union halls: his dad riding the bus everyday to work, his mom hemming pants and cleaning houses to make extra money, and the way he felt before his Kellogg job when he temporarily relied on Medicaid after Megan became pregnant with Georgia.
“I didn’t like that,” said Osborn, who mowed yards and landscaped to support his wife and newborn. In a post on X during last year’s campaign, he wrote that he had to “kill my dream of hanging a diploma on the wall because my family needed health insurance, diapers, and food on the table.”
“I’m glad that program (Medicaid) was there,” he said in an interview, “or I would have started out life with huge medical debt.”
One of his favorite stories recalls the time actor Charlton Heston, who played Moses in the “Ten Commandments” and later was president of the National Rifle Assn., got him fired as a bus boy.
“I was in high school working in a restaurant in the old-money part of town,” he said. “Heston comes in by himself and starts reading a book. I knew him. My dad made me watch all his movies.” Heston didn’t want to talk, said Osborn, who found that rude. “I grabbed his glass and said, ‘Hey, Chuck, do you want your water regular or parted, like Moses.’”
Dan Osborn, second from right, helps serve lasagna as his family, including, from left, his daughters Georgia and Eve, Brad Walton, and his wife, Megan, sit down for dinner.
(Rebecca S. Gratz / For The Times)
Osborn, in the telling, smiled.
“I was putting dishes away later and the manager taps me on the shoulder,” he said. “He told me, ‘I gotta fire you because Charlton Heston wants you fired.’ I had to leave then and there. I got a job at Godfather’s Pizza.”
::
It was pushing toward 7 p.m. The moon shone over Osborn’s house and the workers on his street were home for the night. A bottle of wine was uncorked.
“Dinner,” someone yelled.
He sat at the table with Megan, his daughters and the boyfriend. They talked about school, homelessness, a vacation to Rome, the war in Ukraine, and how Megan felt uncomfortable when political ads attacking her husband flashed across the TV in the sports bar and grill she manages. Her way of seeing the world frames Osborn’s politics, that people are exhausted, overworked and often not heard, but most of them are good and only want what’s fair.
“There are so many amazing and gracious people out there,” she said.
The plates were cleared. Eve went to do her homework. Georgia and the boyfriend drove away. Osborn went to the garage. The big door was open to the cold sky. It was getting late. There would be no work on the car. The tools were stacked and put away neat.
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Column: Pick your battles or all-out opposition? Our columnists debate Trump vs. the Democratic resistance
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These are times that try Democratic souls.
Shut out of power in Washington and facing an unbridled president taking a sledgehammer to parts of the federal government and a chain saw to others, the existential question for the party and its leaders is how — and how hard — to fight back.
Mark Z. Barabak, a political columnist, and Sammy Roth, who writes about climate issues and helms The Times’ Boiling Point podcast and newsletter, have differing perspectives on the best way to respond to the chaos and past several weeks of upheaval, which have been unlike anything the country’s seen in living memory.
Here they hash things out.
Barabak: There’s a saying attributed to Mark Zuckerberg — “Move fast and break things” — that became a manifesto for the moon-shot innovators and buccaneering capitalists of Silicon Valley.
Now Trump has brought that mindset to the Oval Office which, I suppose, isn’t surprising given the subleasing of his presidency to the hyperactive and assertively transgressive Elon Musk.
Roth: Not surprising, but not smart to shrug and act like it’s normal or safe, either. Moving fast and breaking things is a fun way to make money in Silicon Valley, but it’s a recipe for disaster when you’re playing around with a federal government that employs millions of people and undergirds economic and social support systems for hundreds of millions more.
Barabak: Agreed. It’s hard to say which is the more appalling: the recklessness or the heartlessness with which Musk and his preternaturally powerful posse of 20-somethings are scything their way through Washington.
A great many people will suffer; we’ve already seen that with the cutoff of foreign aid, arguably one of the most effective and least understood of federal programs.
Polls routinely show Americans believing as much as a quarter of the federal budget goes to foreign aid when, in fact, it’s less than 1%. And we purchase an awful lot of good will with that relatively meager sum; as one military chief told Congress, we can spend a relative pittance now on food and medical relief or shell out a whole lot more later on weapons systems and anti-terrorism efforts.
But, alas, soft power is about as fashionable in Trump’s red-meat Washington as veganism and green energy. I know the latter is something particularly close to your heart.
But let’s get to our differences. You seem to favor a no-holds-barred resistance, while I favor what I’d call a more nuanced, choose-your-battles approach.
Roth: Well, it’s funny you say “green” energy is close to my heart. I’d say it’s close to everyone’s hearts, whether they know it or not. Scientists have found air pollution from coal, oil and gas combustion kills millions of people around the world every year, in large part by exacerbating heart disease. The less fossil fuel we burn, the fewer people die. That’s even before accounting for all the deaths from worsening heat waves, wildfires and storms spurred by climate change.
But, yes, to get back to your question, I don’t think “choosing their battles” is the right approach for Democrats. Partly it’s a question of morality. Who or what do you throw under the bus: Trans people? Immigrants? Journalists? Folks on the front lines of the climate crisis, including L.A. County wildfire victims? And who gets to make these decisions?
Given Trump’s track record, I don’t know how many folks are safe. Musk mimicked a “Heil Hitler” gesture on Inauguration Day.
I’m also thinking practically. The Democratic Party put up a hell of a lot more resistance to Trump eight years ago than they have so far this time around. Then they took back the House from Republicans in the 2018 midterms, and they beat Trump in 2020.
And it’s not like Trump won some resounding victory last year, either. He likes to talk about a mandate, and a lot of Democrats seem to have accepted that idea. But he won the popular vote by a mere 1.5 percentage points.
Barabak: No, not exactly a landslide. In fact, it’s a pretty middling performance by historical standards. That said, I don’t think Democratic pushback is an either/or proposition. And I don’t see the party as playing the patsy, either.
Democratic attorneys general and their political allies have already bombarded the Trump administration with a megaton of lawsuits, several of which have successfully halted Musk and his co-president’s flagrant overreach.
For the time being, anyway.
And then there is, to give just one example, Gavin Newsom, who’s taken what I consider to be a more deliberate and pragmatic approach.
California’s governor used to be among the loudest and fiercest critics of Trump and national Republicans — “Where the hell is my party?” he demanded at one point, scolding fellow Democrats for being too timorous in response to the Supreme Court erasure of federal abortion rights.
But lately Newsom has largely muzzled himself. In fact, he’s gone out of his way to make nice with Trump — flattery seemingly getting you just about anywhere with our most vain president — to see to it those wiped out by wildfire get the federal relief they need.
It may be personally unpalatable, but it helps the people Newsom was elected to serve.
Also, I think it’s important to note we’re not even a month into Trump’s presidency. I wouldn’t exactly call it a honeymoon. His mediocre approval ratings pale compared to past presidents. But I do think he’s being given a grace period by voters.
Let’s see how things look a few months from now, or by the time the 2026 midterm election rolls around. By then Trump’s actions will have had a meaningful effect on the lives of voters — and, crucially, not just people residing overseas.
It’s one thing to cheer the firing of federal employees if you consider them a bunch of slothful layabouts. It’s another when your Social Security check doesn’t get delivered on time, or you go to the VA and it takes three hours to check in at the understaffed front desk.
Roth: I don’t think waiting until 2026 to see how bad things get is a good idea.
Sure, Social Security checks are going out. But Trump’s actions are already hurting people. Federal prosecutors are being fired for defending democracy against violent insurrection. The dismantling of health and science agencies will have long-lasting consequences for our physical well-being. And who knows what Musk will do with all the sensitive personal information he’s gotten access to?
The list goes on. Immigrants are being deported en masse. The Federal Communications Commission is working hard to intimidate the free press. In the private sector, companies are abandoning people of color by dismantling their DEI policies to appease Trump. And, oh yeah, we’ll be living with a lot of additional climate pollution for centuries.
I’m sympathetic to Newsom for wanting to secure wildfire aid. Hopefully his strategy works.
But how can anyone believe stoking Trump’s ego is more than a loose-fitting bandage on a hemorrhaging democracy? Trump never admitted he lost the 2020 election. His administration is openly defying court orders. His advisors are questioning the judiciary’s authority to check his powers.
Democrats should ditch their normal routine of worrying about whether they’re reading the room right. They should stop acting like these are normal times and start acting like the coming months and years will determine the course of American democracy.
Otherwise, they’re sending voters the message that Trump is a loud, obnoxious but essentially legitimate leader who happens to be wrong on how to lower the price of eggs.
Barabak: I agree with all you say about a clear and present danger. But a lot of what Trump is doing are things he threatened, er, promised to do while running for reinstatement to the White House.
And he won.
As unfortunate as I found it, the price of eggs, bacon and gasoline seemed to matter a whole lot more to voters than, say, condoning an attempted insurrection and undermining faith in our democracy by lying about the 2020 election.
The fact is Trump is president and will be for the next four years, barring some extraordinary development. I fear a lot of pain and misery as a result. I certainly hope I’m wrong.
I do know plenty of folks will quite gladly wag a finger in my face and tell me if I am.
Roth: I hope you’re wrong, too. But all the evidence suggests otherwise. And I don’t think the fact that Trump won on a platform of subverting democracy and inflicting harm on lots of Americans means Democrats have an obligation or a strategic imperative to stay quiet while he does so. If anything, the opposite.
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California officials detail Trump funding freeze ‘chaos,’ warn another could cripple state
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Maricela Ramirez was at an education conference in Washington, D.C., at the end of January when she and other attendees heard the startling news: Federal funding for Head Start programs, which provide early-learning and nutritional support for low-income children nationwide, had been frozen.
Ramirez, chief education officer for the Los Angeles County Office of Education, quickly contacted colleagues and realized it was true. They had tried to make a routine withdrawal of millions of dollars in funding the day prior, but it hadn’t arrived overnight as expected.
Ramirez said “stress and panic” quickly began to set in, both in her office and among the conference attendees all around her.
“Our team had to assess whether LACOE would have to shut down its programs and to determine where LACOE could find funding to pay its employees if the system continued to be down,” Ramirez recently wrote in a legal filing. Pauses in federal funding could disrupt mental health services, counseling, health screening and nutritional support for up to 8,000 children, she added.
Ramirez’s account of the fallout and ongoing fear caused by the Trump administration’s sudden decision to halt billions of dollars in federal financial aid last month was one of more than 125 declarations of harm filed as part of a multi-state lawsuit challenging the freeze in U.S. District Court. At least 16 declarations came from California.
Together, the declarations paint a picture of alarm and chaos in the hours and days after the White House budget office announced the freeze in a Jan. 27 memo, and of lingering fear and uncertainty as the Trump administration continues to fight for such budget authority in court.
While the administration rescinded the Office of Management and Budget memo two days after it was issued amid substantial public uproar, some funds remained frozen in the days that followed. And in response to the states’ lawsuit, the Trump administration argued that Trump and OMB “plainly have authority to direct agencies to fully implement the President’s agenda.”
U.S. District Judge John J. McConnell Jr. ordered Jan. 31 that the freeze be temporarily lifted while the litigation plays out. He further blocked it on Feb. 10, in part on the strength of the declarations — writing that the administration’s “categorical and sweeping freeze” was “likely unconstitutional and has caused and continues to cause irreparable harm to a vast portion of this country.”
The Trump administration accused McConnell of “intolerable judicial overreach,” but has backed off an appeal as the litigation continues.
In one declaration, Mary Halterman, an assistant program budget manager at the California Department of Finance, wrote that federal funding “typically comprises about a third” of the state’s budget. In fiscal 2024-25, the state’s $500-billion budget anticipates $168 billion in federal funds, not including funding for the state’s public college and university system.
The largest chunk, some $107.5 billion, is for payments under Medi-Cal, California’s version of Medicaid, which provides healthcare to nearly 15 million low-income Californians, or more than a third of the state’s population, Halterman wrote.
That includes about 5 million children — more than half of the kids in the state.
Congress also has allocated California $63 billion under the Infrastructure Investment and Jobs Act of 2021, and nearly $5 billion under the Inflation Reduction Act of 2022, “for programs related to public transportation, roads and bridges, water infrastructure, and broadband infrastructure, among others,” Halterman wrote.
The Office of Management and Budget’s funding freeze memo immediately created “confusion and doubt” as to California’s ability to continue providing such services, Halterman wrote. And that uncertainty was “ongoing,” she wrote.
Sen. Bernie Sanders (I-Vt.) protests against the policies of President Trump and Elon Musk at the U.S. Capitol on Wednesday.
(Jose Luis Magana / Associated Press)
“Without knowing whether and when federal dollars will be disbursed, state agencies may not be able to outlay those funds, causing immediate pause or potential termination of government services in some sectors,” Halterman wrote.
The freeze set off similar alarm bells among state officials overseeing Medi-Cal and other federally funded health programs, especially after they realized Jan. 28 that a $200-million payment hadn’t been received, wrote Lindy Harrington, an assistant state Medicaid director.
The department “managed to continue operations” that day, but “did not have sufficient funds to meet future financial obligations,” she wrote, and she now fears the “budgetary chaos” of a longer disruption — under which “health care services could be drastically curtailed or even cease altogether.”
California officials overseeing other public health and safety programs raised similar fears after being locked out of funding for a range of environmental and infrastructure projects, including to clean up contaminated industrial sites, monitor air quality in low-income and disadvantaged communities and reduce dangerous and potentially deadly pollution along the busy freight corridor between Los Angeles and the Inland Empire.
Eric Lau, acting deputy director of the division of administrative services at the California State Water Resources Control Board, said his agency since 2021 has received hundreds of millions of dollars in federal grants for projects related to safe drinking water and overflow and stormwater management.
About 8 a.m. on Jan. 28, Lau staff found only 31 of the board’s 45 grants were visible in its federal payment system, and searches for the 14 others produced an alarming message: “ERROR 839: No accounts found matching criteria.”
It took days for some of the accounts to come back online, Lau wrote, warning that longer disruptions could be catastrophic.
“The design, construction, and maintenance of critical water facilities will be stalled, risking continued water contamination, supply disruptions and severe threats to public health and the environment,” he wrote. “Ultimately, Californians’ right to safe, clean, affordable, and accessible water will be threatened.”
Federal funding also was temporarily blocked for researchers at California State University and University of California campuses, homeowners and contractors retrofitting homes to be more energy efficient, regulators overseeing workplace safety violations and job search assistance, career services, and training programs at dozens of local workforce development centers statewide.
Both state and local officials warned that any cuts to federal funding that aren’t carefully considered by Congress and articulated in advance — giving localities time to draft new budgets of their own — are deeply unwise and potentially dangerous.
California Supt. of Public Instruction Tony Thurmond wrote that the state receives $7.9 billion in annual funding from the U.S. Department of Education, which supports 5.8 million students. The temporary freeze on funding last month did not disrupt school programs, in part because the state did not have any major draw on federal funds scheduled.
However, any interference to those funds moving forward would “do immeasurable harm” to educators and students, particularly low-income students and students with disabilities, he wrote.
For the current school year, the state is receiving $1.5 billion in direct funding for special education students, Thurmond wrote. In addition, public schools draw heavily on Medi-Cal — to the tune of millions of dollars per school per year — to provide additional therapies and mental and physical health services, Thurmond wrote.
California schools also receive huge amounts of federal funding under the Every Student Succeeds Act. This fiscal year, California was allocated $2 billion in ESSA funds to “meet the needs of some of its most vulnerable students,” and to ensure that they meet certain proficiency standards, Thurmond wrote. Among other things, it was allocated $120 million for the education of “migratory children,” $232 million to strengthen the quality and effectiveness of school staff, $157 million for English language acquisition and enhancement programs, and $152 million for improving school conditions and technology, Thurmond wrote.
California schools also spend $40 million to $50 million in federal funds per week to feed students through nutrition programs.
Another freeze “could cause layoffs, suspension of services to needy students and disruption of student learning supports,” Thurmond wrote.
State programs completely unrelated to education would also be put at risk, he wrote, given that many education programs are mandatory under state and federal law and the state would be forced to shuffle its resources around to provide them no matter what.
Mason Matthews, chief budget and financial officer in L.A. County Chief Executive Fesia Davenport’s office, shared those wider budget concerns. The county is the most populated in the nation with about 10 million residents and a budget of about $49 billion, with an estimated $5.3 billion in federal funding.
Matthews wrote that the “exact ramifications” of the recent pause on federal funding “remain unknown,” but the risks posed by another freeze are high — threatening “a range of vital commitments to [county] residents including, but not limited to, healthcare, public safety operations, public benefits, workforce development, foster care, child support, housing and emergency management.”
One affected group would be needy families who receive cash assistance, employment services and child care through the state’s CalWORKS program, through which the county receives more than $2 billion in federal funds annually, Matthews wrote. Also at risk would be abused children, he wrote, as the county’s Department of Children and Family Services relies on $604.5 million in federal funding annually to investigate abuse and neglect and provide “supportive and therapeutic services” for such children.
More broadly, because federal funding amounts to about 10% of the county budget, another freeze would cause “significant budget and administrative burdens” for the county and “irreparably harm the day-to-day lives” of all county residents, Matthews wrote. That’s especially true given the budget strain already being felt from the devastating wildfires that incinerated parts of the county last month.
“The withholding of federal funding, coupled with the ambiguity and uncertainty regarding which funds will be withheld and for how long, will cause irreparable harm and jeopardize critical response and recovery efforts,” Matthews wrote. “Though the County will take appropriate actions to respond to the LA County Fires, without reimbursement from federal funding, other County crucial programs may be impacted such as housing options for homeless families and veterans.”
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C&L’s Late Nite Music Club: Howard Jones ‘Things Can Only Get Better’
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I loved many of Jones’ songs and many others that came out during this era. It was another British explosion in America.
I know the 80’s faced criticism, but those pop classics had great melodies. I played in a corporate band in the 80’s to make money so we played many of them for parties, weddings, and corporate events.
Howard Jones’s music career started when his family moved to Canada when he was a teenager. You may, or may not, be surprised to hear that his first band was Warrior, a progressive rock group who released an album in 1972 called Invasion, described as having shades of Genesis and ELP. As a keyboard player he cites Keith Emerson amongst his influences, but when he returned to England the Prog world’s loss ultimately became Pop’s gain. In 1983 he even hired the Marquee Club, during the early neo-prog years no less, to showcase his more fashionable synth pop talents, and later in that year his first single, New Song, was released reaching the Top 5 in the UK.
Jones was a one man synthesizer orchestra.
Many believe Howard was an overnight success, hitting the charts with his first single and his debut album “Human’s Lib” doing double platinum in England and giving him a foothold in America. But not many got to see Howard spending many years perfecting his one-man electronic show and building a following around where he lived in High Wycombe, about 30 miles northwest of London.
Practically surrounded by keyboards and drum machines, Howard knew that the people coming to his show were experiencing something that they had never before. He said he was always writing and then playing new material for his fans at his gigs to get a sense of how they responded to them.
—-“My goal was always to have my songs on the radio,” he said. “I grew up listening to the radio and all those songs that I listened to meant so much to me.”
I was intrigued by this release: ’80s Symphonic’ Gives Fresh Take on Iconic ’80s Singles
Do you have any favorites from the era?
GOP Keeps UN Ambassador Seat Vacant Because They Need Her Vote
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Republicans have failed to schedule a confirmation vote for Rep. Elise Stefanik as the U.S. ambassador to the United Nations because her vote is needed as House Republicans cut the social safety net.
The Trump team announced that Stefanik would go to the U.N. soon after he won the election, but they have needed her in the House because Republicans only have a three-vote majority over the Democrats. After their success in the 2024 election, Trump picked multiple House members to fill his Cabinet (including failed Attorney General nominee Matt Gaetz) that eroded their already small majority.
So now Republicans are sitting on her nomination until they can figure a way out of the mess they created for themselves.
“The concern is … obviously the situation in the House and how narrow the majority is,” Senate Majority Leader John Thune told Politico. “I think they’re trying to figure out how to coordinate and time it all.”
At the moment, there are several international crises—some triggered by Donald Trump’s actions and rhetoric—that would benefit from a unified American response at the U.N. There is the war in Gaza (and Trump’s plan for ethnic cleansing), the war in Ukraine, and the international feuds that Trump has set off with Canada, Mexico, Denmark, and much of the European Union.
When other senior members of Trump’s team have spoken up it has created more of a mess. Defense Secretary Pete Hegseth triggered anger from America’s NATO allies when he suggested Ukraine should capitulate to Russian invaders. Then a day later Vice President JD Vance flip-flopped and said American troops could be deployed in the region.
The agenda that Stefanik’s nomination is being held in limbo for would create domestic chaos as well.
Republicans have begun formulating legislation to make permanent the tax cuts Trump signed into law in 2017 that assisted the ultra-wealthy (like Elon Musk) far more than the average taxpayer. The party intends to get there by cutting programs that are in place to assist working families: food stamps and Medicaid.
The party needs Stefanik—or another Republican in her seat—so they can cut $880 billion from Medicaid alongside a 20% cut to food stamps. There is also a concern that Social Security cuts are an option.
The state of paralysis once again shows that Republicans have prioritized the well-being of the wealthiest above everything else, even America’s role on the world stage.
Republished with permission from Daily Kos.
What A $2 Million Per Dose Gene Therapy Reveals About Drug Pricing
This post was originally published on this site
ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.
Reporting Highlights
- A Record Price: The gene therapy Zolgensma helped children born with a fatal disease, spinal muscular atrophy, grow up to run and play. But the cost was stunning: $2 million per dose.
- Cashing In: While taxpayers and small charities funded the drug’s early development, executives, venture-capital backers and a pharma giant have reaped the profits.
- Priced Out: The drug’s cost adds to the nation’s ballooning bill for prescription drugs and puts Zolgensma out of reach for kids in many low- and middle-income countries.
These highlights were written by the reporters and editors who worked on this story.
Vincent Gaynor remembers, almost to the minute, when he realized his part in birthing the breakthrough gene therapy Zolgensma had ended and the forces that turned it into the world’s most expensive drug had taken over.
It was May 2014. He and his wife were sitting in the cafeteria at Nationwide Children’s Hospital in Columbus, Ohio.
Elsewhere in the hospital, an infant — patient No. 1 in a landmark clinical trial — was receiving an IV infusion that, if it worked, would fix the genetic mutation that caused spinal muscular atrophy, a rare, incurable disease. At the time, children born with the most severe form of SMA swiftly lost their ability to move, to swallow, to breathe. Depending on the disease’s progression, most didn’t live to their second birthdays.
The Gaynors’ daughter Sophia had been diagnosed with SMA five years earlier. Since then, they’d raced to fund research to save her. Their charity, Sophia’s Cure, was covering a substantial portion of the costs of the trial.
They’d helped raise about $2 million for a program at Nationwide run by Brian Kaspar, a leading researcher. Gaynor, a New York City construction worker, had forged a tight bond with Kaspar, speaking frequently with him by phone, sometimes deep into the night.
But their relationship had started to fray when — with success in sight — Kaspar became part owner of AveXis, a biotech startup that had snapped up the rights to his SMA drug. Billions of dollars were at stake.
When Kaspar walked into the cafeteria that day, Gaynor said, the scientist didn’t acknowledge him or his wife before sitting down a short distance away. Neither did the man with him, the startup’s CEO.
“It was like they didn’t know us,” Gaynor recalled.
When Zolgensma hit the market five years later, it was hailed as a miracle drug. Some babies treated with it grew up able to run and play. It helped reduce U.S. death rates from SMA, long the leading genetic cause of infant mortality, by two-thirds.
That leap forward came at a sky-high price: more than $2 million per dose, making Zolgensma then the costliest one-time treatment ever.
How did a drug rooted, like many, in seed money from the U.S. government — that is, American taxpayers — and spurred by the grassroots fundraising of desperate parents, end up with such a price tag?
The story of Zolgensma lays bare a confounding reality about modern drug development, in which revolutionary new treatments are becoming available only to be priced out of reach for many. It’s a story that upends commonly held conceptions that high drug prices reflect huge industry investments in innovation. Most of all, it’s a story that prompts, again and again, an increasingly urgent question: Do medical advances really have to be this expensive?
ProPublica traced Zolgensma’s journey from lab to market, from the supporters there at the beginning to the hired guns brought in at the end to construct a rationale for its unprecedented price.
We found that taxpayers and private charities like Sophia’s Cure subsidized much of the science that yielded Zolgensma, providing research grants and opening the door to federal tax credits and other benefits that sped its path to approval.
Yet that support came with no conditions — financial or otherwise — for the for-profit companies that brought the drug over the finish line, particularly when it came to pricing.
Once Zolgensma’s potential was clear, early champions like the Gaynors were left behind as the private sector rushed in. AveXis’ top executives and venture-capital backers made tens or hundreds of millions of dollars apiece when the startup was swallowed by the pharmaceutical giant Novartis AG in 2018.
Wall Street analysts predicted Novartis’ new prize drug would be the first therapy to smash the million-dollar-a-dose mark. The Swiss colossus crafted a sophisticated campaign to justify more than double that amount, enlisting a team of respected academics, data-modelers and pricing strategists to help make its case.
“This was a case where the charities and the government did everything to get this thing commercialized, and then it just became an opportunity for a bunch of people to make transformative, generational wealth,” said James Love, director of the public advocacy group Knowledge Ecology International.
In a statement to ProPublica, Novartis said Zolgensma’s price reflects its benefits to children with SMA and to society more broadly.
“Zolgensma is consistently priced based on the value it provides to patients, caregivers and health systems,” the company said, adding that the drug may reduce the burden of SMA by replacing “repeat, lifelong therapies with a single treatment.”
Zolgensma’s price quickly became the standard for gene therapies. Nine of them cost more than $2 million. A tenth, approved in November, is predicted to run about $3.8 million, just shy of the most expensive, also approved last year, which costs $4.25 million a dose.
“Drug companies charge whatever they think they can get away with,” said David Mitchell, the founder of Patients For Affordable Drugs. “And every time the benchmark moves up, they think, ‘Well, we can get away with more.’”
Parents of children with SMA say their concerns about costs pale in comparison to the hope offered by such cutting-edge therapies. “I mean, it’s a child’s life,” said Hailey Weihs, who battled her health plan to get Zolgensma for her daughter. “Anybody would want that for their own child.”
The seven-figure costs of Zolgensma and other gene therapies add to the nation’s ballooning bill for prescription drugs, absorbed by all Americans in the form of rising insurance premiums and taxes for public programs like Medicaid.
Breakthroughs like Zolgensma are often framed as wins for all: Patients get life-saving new therapies. Drug companies and biotech investors make enough money to incentivize even more breakthroughs.
But not everyone’s a winner, Gaynor noted.
No one wanted Zolgensma to succeed more than he did, or understands better what it has meant for families like his. Yet his years behind the scenes of the drug’s development left him and his family disillusioned.
“I learned it’s all about money,” Gaynor said. “It’s not about saving people.”
When Vincent and Catherine Gaynor started their married life in 2006, they knew one thing for certain: They wanted children.
They learned well into Catherine’s 2008 pregnancy that they were both carriers for SMA, meaning there was a 25% chance their child would be born with the muscle-wasting disorder.
They were concerned but clung to the larger chance the baby would be born healthy.
When Sophia was born in late February 2009, at first they just marveled at her sweet disposition and bright, expressive eyes. How she loved being snuggled. How she sighed after she burped.
But it didn’t take long for Vincent, who’d grown up with younger siblings, to sense something was off. Sophia didn’t lift her legs. They flopped outward like a frog’s when he changed her diaper.
Their pediatrician assured them Sophia was fine. Then a different doctor suggested testing her for SMA. While they waited for the results, the family went to a nearby park, and Catherine pushed Sophia’s stroller around a pond. “I remember walking behind her with the video camera and knowing in my heart this was the last day we were all going to be happy,” Vincent recalled.
After Sophia’s diagnosis, Catherine quit her office job to care for the baby full time. Vincent started gulping down studies and going to conferences, desperate to find a way to save his daughter.
At the time, there were no treatments to slow or stop SMA. By the time Sophia was 4 months old, she needed a machine to help her breathe overnight. At 6 months, she could no longer take a bottle and needed a feeding tube. Each time she lost ground, their urgency to find a treatment grew.
The Gaynors didn’t have deep pockets or wealthy friends. He was a steamfitter with Local 638, from a family of steamfitters. They began raising small amounts of money by hosting golf tournaments and throwing Zumba parties. As the volume of donations grew, they founded Sophia’s Cure, emerging as serious players in the small world of SMA charities.
Vincent met Brian Kaspar at a cocktail hour for high-yield fundraisers. Kaspar was among the small group of top researchers working to find treatments for SMA, competing fiercely for recognition and funds. (Kaspar declined an interview request from ProPublica and didn’t respond to written questions.)
Because his drug was a gene therapy, public grant money and private philanthropy played an especially central role, with the National Institutes of Health alone putting over $450 million into science related to SMA. Drug companies at the time approached these treatments with more skepticism, waiting longer to invest and letting universities and academic hospitals do the heavy lifting, said Ameet Sarpatwari, an assistant professor at Harvard Medical School who studies the pharmaceutical industry.
Drug companies sponsored only 40% of the U.S. gene therapy trials active in January 2019, according to a study Sarpatwari co-authored.
“The narrative of industry is, ‘We’re doing the hard, expensive part of drug development,’ and, at least for cell and gene therapies, the most risky part is actually being done by public or federally supported labs,” Sarpatwari said, calling Zolgensma a “poster child” for the study’s findings.
By the time of the cocktail party, Kaspar had turned early research into a promising drug therapy that he was beginning to test on animals — the precursor to a human trial. Gaynor remembered him as humble and almost classically nerdy, happy to spend hours on the phone explaining how motor neurons work.
More established SMA charities tended to hedge their bets, spreading money around to multiple programs. But Sophia was already around 18 months old, and Gaynor had no time for that. In September 2010, when Sophia’s Cure won a $250,000 grant from the Pepsi Refresh Project by amassing votes online, he steered the money to Kaspar’s program. The following June, the charity signed an agreement promising Kaspar up to $1 million more, for which it had launched a drive to recruit 200 people to raise $5,000 apiece.
As the money flowed in, Gaynor and Kaspar became close friends. The Gaynors stayed overnight at Kaspar’s house on their drive to an annual charity event. Kaspar did a Q&A for the Sophia’s Cure YouTube channel from the Gaynors’ dining room and proofread posts Vincent wrote for the charity’s website.
Gaynor said they often talked about how getting the drug through the development process would require way more money and muscle than the various SMA charities could muster. Kaspar shared his conversations with venture capital firms and even asked Gaynor to talk to a potential investor.
Yet Gaynor said he was blindsided when Kaspar told him he’d formed a relationship with a Dallas startup called BioLife Cell Bank that had been focused on stem cell research.
The CEO, John Carbona, then 54, had run medical device and equipment companies, but he had no background in drug development. In an interview, Carbona told ProPublica that he took the reins at BioLife in the aftermath of his mother’s death, determined to do something “significant” to fulfill her hopes for him. After an associate’s twins were born with SMA, he said he became convinced that Kaspar’s gene therapy was the answer.
Carbona remade BioLife into AveXis: Av for adeno-associated virus serotype 9, the engine of Kaspar’s drug; ve for vector; X for the DNA helix; and Is for Isis, the goddess of children, nature and magic.
Still, for much of the next year and a half, money from charities and more than $2.5 million from the National Institutes of Health remained Kaspar’s bread and butter. In late 2012, Sophia’s Cure agreed to provide another $550,000 for a Phase 1 clinical trial. The Nationwide Children’s Hospital Foundation, an affiliate of the hospital, agreed to match it.
Kaspar singled out Sophia’s Cure for the extent of its support in a Nationwide press release.
“Sophia’s Cure Foundation has been the lead funder of this program and their incredible investment in this lab has accelerated our program by many years,” he said.
The trial protocol called for Kaspar’s therapy to be tested on infants up to 9 months old. It was a pragmatic decision: The company had limited funds and capacity to produce the test doses, which would be smaller for children who weighed less. Plus, the youngest children were likely to show the most dramatic results since they’d be treated before SMA inflicted its worst damage.
That left out Sophia, as well as most of the kids whose parents made up Gaynor’s fundraising network.
Gaynor’s dream of saving his daughter had tapered into determination to stop the disease’s progression and preserve the strength she had left. Sophia could no longer move her whole hand, but she could still tap with her right pointer finger. She could use an eye-gaze computer to click open screens and attend school remotely. She could communicate a bit, blinking once for yes and twice for no.
Early on, Gaynor said, Kaspar had promised a trial for older kids. But Gaynor felt Kaspar’s commitment wavered as his ties to AveXis grew and his reliance on funding from Sophia’s Cure diminished.
Carbona struck a deal with Nationwide Children’s in late 2013, getting AveXis the exclusive right to develop an SMA treatment using the hospital’s inventions, including Kaspar’s, in exchange for stock. A few months later, Kaspar signed a contract that granted him an even larger stake in the company. The company also landed its first major investor, Paul Manning of PBM Capital.
Over this period, Gaynor said, the phone calls and updates from Kaspar slowed. The Gaynors were invited to Nationwide Children’s for the start of the clinical trial by the family of the child receiving the first dose.
After the initial awkwardness in the cafeteria, the Gaynors said, Kaspar and Carbona eventually came over and sat with them. Carbona remembers it differently, saying that he recalled seeing the Gaynors that day and the mood was friendly, even celebratory.
Tension surfaced two months later when they all converged in Lancaster, Wisconsin, for Avery’s Race, an annual SMA fundraiser benefiting Sophia’s Cure.
The event brought together dozens of families from across the country for an awareness walk, an auction and a rubber ducky race in a nearby creek. In the finale, parents posed questions to Kaspar, Gaynor and Carbona, almost all of them about the clinical trial.
In video footage captured by a documentary filmmaker, Catherine Gaynor asked bluntly whether testing the drug only on infants meant the FDA would approve the treatment only for the youngest patients while “everyone else is left hanging out to dry.”
Kaspar acknowledged this was possible. He described expanding the treatment to older children as “step two” but made clear that funds for testing would have to come from Sophia’s Cure.
That’s what the money raised at Avery’s Race would support, Vincent Gaynor said, adding pointedly that his nonprofit would focus on the work others would avoid “because it’s not going to push stock prices up.”
Neither Kaspar nor Carbona responded directly to the dig. Carbona, noting the company had other funding needs, said they would expand testing when they had proof the drug worked.
By early 2015, AveXis had raised millions from deep-pocketed biotech investors, adding members of several venture-capital funds to its board. Their participation would be critical in bringing the drug to market, paying for licenses to patented technology needed to make and administer it, for example. It also meant that Zolgensma had to do more than save lives — its promise had to make AveXis’ investors a profit.
Almost immediately, Carbona said, the board pushed to take the company public.
“I mean, they all have their hearts in the right place, but they’re being run by people who are looking for a return on investment,” he said.
As AveXis moved toward an initial public offering, some on the board questioned whether Carbona should continue running it, he said. He’d been accused years earlier of fraud and breach of fiduciary duty by a former employer, who won a $2.2 million court judgment against him. Carbona had denied any wrongdoing and the judgment was reversed in part and reduced on appeal, but the case left lasting damage. “It hurt me immensely,” he said.
Later that year, the board replaced Carbona with a new chief executive, Sean P. Nolan, who had a decadeslong record at pharmaceutical and biotech companies.
In September, a company representative offered the Gaynors a meeting with Nolan, saying Kaspar had stressed how instrumental Sophia’s Cure had been to the work on the drug. The Gaynors traveled into Manhattan for the meeting at a hotel bar. They told Nolan about their concerns, including that older kids wouldn’t have access to Kaspar’s drug since it hadn’t been tested on them. They said Nolan was cordial but never followed up. (Nolan didn’t respond to emailed questions from ProPublica.)
Early the following year, AveXis went public. Nolan celebrated by ringing the NASDAQ opening bell as Kaspar, other company executives and members of the board whooped and clapped.
The IPO and subsequent stock sales raised hundreds of millions of dollars, but little of the money went toward additional trials on Zolgensma, an analysis by KEI, the public advocacy group, concluded.
The drug’s trials were small, often involving two dozen patients or fewer. AveXis, and later Novartis, spent less than $12 million up to the point of the drug’s approval — surprisingly little — to prove the therapy was safe and effective, the group estimated, based on information obtained through Freedom of Information Act requests, from studies and in Securities and Exchange Commission filings. (Novartis did not respond to questions from ProPublica about trial costs.)
The companies spent more than 10 times that amount to license intellectual property from others, KEI found. It’s not the clinical trials, Love, the director, said, that “makes developing gene therapies more expensive than it has to be.”
By the time of AveXis’ IPO, the Gaynors had decided to wind down Sophia’s Cure and step back from the SMA community. In 2015, Sophia began having seizures that became more frequent over time. She was 6 years old and growing weaker. Her SMA had progressed too far for Kaspar’s drug to help her.
Vincent’s sense of failure was crushing. In September 2016, after years of pent-up anger, he took a last stab at getting Kaspar and AveXis to acknowledge that the charity and its donors had essentially been a partner in developing Zolgensma.
Sophia’s Cure sued Kaspar, Carbona, Nolan, AveXis, Nationwide Children’s Hospital and its affiliated research institute and foundation for breach of contract. They’d relied on the charity’s money to advance the treatment, the lawsuit alleged, then violated the terms of donation agreements by cutting it out of credit and ownership rights once the drug was headed for success. The suit sought damages of $500 million.
Many larger disease foundations have launched venture philanthropy programs that invest in biotech companies and projects, getting royalties and other financial considerations if their gifts help fund new treatments. In court filings, Nationwide Children’s called the notion that the tiny Sophia’s Cure had any right to the drug “simply not true, or even plausible,” and AveXis called it “wholly unsupported.”
Carbona said he was “disappointed and surprised” by the lawsuit. Nationwide didn’t respond to questions about the matter.
In November 2017, as the litigation went on, the results of the clinical trial that the charity helped fund were published.
They were remarkable. At 20 months, all 15 children who’d been treated remained alive, and none relied on a ventilator to breathe. Eleven of 12 infants who received a higher dose of the therapy were able to sit unassisted, speak and be fed orally. Two could walk on their own.
Based on preliminary trial data, the FDA had designated Zolgensma a breakthrough therapy, one of three special designations that helped it race from human trials to regulatory approval in five years. Once the full trial results came out, AveXis became a red-hot acquisition target.
In April 2018, Novartis beat out another bidder, agreeing to buy the company for $8.7 billion.
The sale delivered massive windfalls to those with the biggest stakes in AveXis.
Kaspar alone took in more than $400 million. He swapped his longtime family home in New Albany, Ohio, for a 9-acre estate in San Diego County, California, that had been listed for just over $8 million. It featured a dine-in stone wine cellar, a horse ring and stables.
Nolan, who’d led AveXis for less than three years, walked away with over $190 million; according to a financial filing, his payout included a golden parachute worth almost $65 million. Manning, the startup’s first big investor, made more than $315 million, multiplying his original investment by about 60. (Manning didn’t respond to calls or emailed questions from ProPublica.)
Carbona, too, made a bundle — he declined to say how much. Since he’d already left the company, his payout wasn’t disclosed in SEC filings. “It didn’t matter,” he said of the money. The 20-hour days he’d put into AveXis had helped advance a lifesaving drug. “This was a significant impact on humanity.”
After watching AveXis’ executives and investors cash in, the Gaynors were dealt another painful setback. In early 2019, a U.S. district court judge in Ohio dismissed Sophia’s Cure’s lawsuit against all parties, concluding there had been no breach of contract.
Their last hope for recognition of the charity’s role in bringing Zolgensma to the world was extinguished.
Once Novartis acquired AveXis, it turned to setting a price for its much-anticipated gene therapy.
Unlike other nations, the United States allows companies to charge whatever they want for new drugs. This often means Americans pay the world’s highest prices, particularly during the period when only the original manufacturer can market a drug. Research by PhRMA, the trade group for drug companies, suggests unfettered pricing buys Americans faster access, as long as insurers will pay: New medicines most often launch first in the U.S.
Novartis’ deliberations took place at the end of a decade in which launch prices of new drugs had risen exponentially, drawing ire from patient advocacy groups and Congress. The median annual launch price for a new drug jumped from about $2,000 in 2008 to about $180,000 in 2021, one study found.
In part, the increase reflected that a growing proportion of new drugs treated rare diseases. Drug companies have argued these therapies should cost more because their markets are smaller, making it harder to recoup expenses.
Cell and gene therapies also drove prices higher. The first three such treatments were approved in 2017, launching at prices of $370,000 or more. Luxturna, a gene therapy for a rare disorder that causes vision loss, costs $425,000 per eye.
Industry insiders assumed Zolgensma would cost more than Luxturna. But how much?
How drug companies pick prices for their products is among their most closely held secrets.
Beyond its statement, Novartis didn’t respond to questions from ProPublica about how it set or justified Zolgensma’s price. We reached out to more than three dozen people who were at the company or consulted for it at the time; most didn’t respond or declined to comment. A couple said they were bound by nondisclosure agreements.
The most visible portion of Novartis’ work was an effort to put a dollar value on how much Zolgensma would extend and improve SMA patients’ lives and offset the costs of caring for them.
This approach, known as value-based pricing, was originally championed by insurers and consumer watchdogs hoping to rein in drug prices. Other nations use economic assessments to decide whether to cover drugs and at what price, often paying far less than the U.S. for the same treatments.
But pharmaceutical companies have learned to use these techniques to their advantage.
Novartis brought together experts from academia and top consulting firms to work with its internal health economics team to publish research framing Zolgensma as a good value even at a high price.
One of the academics was Daniel Malone, then a professor at the University of Arizona’s College of Pharmacy. The target audience was mainly insurers, he said in an interview.
“We’re trying to influence the thousands of pharmacy and therapeutics committees around the country that are going to be looking at this therapy and whether they are going to provide it,” he said.
At the company’s direction, Malone said, their model mainly compared Zolgensma to the only other SMA treatment then on the market, a chronic treatment called Spinraza. It, too, was pricey, costing $750,000 in the first year and $375,000 every year after; over a decade, the tally would come to more than $4 million. (This was hypothetical; the FDA had approved Spinraza in December 2016, so no one had ever taken it for that long.)
A paper Malone co-authored concluded that Zolgensma, at prices up to $5 million, was a better buy than its rival, delivering more therapeutic benefit at a similar cost.
Company executives publicly floated multimillion-dollar prices for Zolgensma using data points from Malone and others.
“Four million dollars is a significant amount of money,” Dave Lennon, then president of Novartis’ AveXis unit, told Wall Street analysts on a call in November 2018. But “we’ve shown through other studies that we are cost-effective in the range of $4 million to $5 million.”
Such talk normalized “prices that would’ve been inconceivable a generation ago,” said Peter Maybarduk, director of access to medicines at the nonprofit consumer advocacy group Public Citizen. “It has a desensitizing effect.”
Novartis’ team of experts also helped the company prepare for Zolgensma’s evaluation by the Institute for Clinical and Economic Review, a nonprofit that assesses whether drugs are priced fairly.
Unlike agencies in Europe that do similar evaluations to set drug prices for national health systems, ICER’s recommendations aren’t binding, but they’ve become increasingly influential among public and private payers when it comes to coverage decisions.
Dr. Steven D. Pearson, the nonprofit’s founder, said that as ICER began its review, he was aware that investors were pushing for a big number.
“There was what I would call pressure from Wall Street,” he said. “This was going to set a precedent. Investors wanted to see a high price here.”
At first, it looked like ICER would resist. Its December 2018 draft report said Zolgensma would be overpriced at $2 million.
Novartis pushed back. Another consultant, University of Washington professor emeritus Louis Garrison, submitted public comments echoing a forthcoming AveXis-sponsored journal article he’d co-authored. It argued that drugs like Zolgensma, which treat rare, catastrophic conditions, deserved higher prices, in part to “incentivize appropriate risk taking and investments” by their developers.
Garrison said AveXis reviewed the article prior to publication, but he had the final say on its content. “I thought I could make a value-based argument that they would welcome and that I believe in,” he said. He said he was not directly involved in the company’s pricing decision.
Nonetheless, ICER’s final report in April 2019 concluded Zolgensma would need to be priced under $900,000 to be cost-effective, though it acknowledged the drug was still being tested on infants who hadn’t yet shown symptoms of SMA. If they also benefited, the report suggested the drug’s value might increase.
On May 24, the FDA approved Zolgensma to treat children under 2 with all forms of SMA.
Novartis finally revealed the treatment’s U.S. launch price, $2.125 million, framing this as a 50% discount on Spinraza and what the company’s research showed the gene therapy was worth.
It also pocketed yet another taxpayer-funded benefit: a voucher from the Food and Drug Administration redeemable for accelerated review of another drug. Such vouchers — designed to encourage companies to invest in pediatric rare-disease treatments — can be sold, typically bringing prices of around $100 million apiece.
That same day, ICER released an update. New data showing Zolgensma’s substantial benefits for presymptomatic children made the drug cost-effective at prices up to $1.9 million by one benchmark and up to $2.1 million by another, it said.
Pearson acknowledged the scale and timing of the switch were unusual, but said it was driven by the data, not outside pressure. “We weren’t trying to fit into somebody’s preexpectation of where the number would be, believe me,” he said.
He immediately caught flak from insurers.
“I got a lot of phone calls saying, ‘Why on earth did you say $2.1 million was a fair price? How could that possibly be the case? We’re going to get swamped with this,’” he recalled.
The Gaynors, linking to news coverage on Zolgensma’s launch, wrote on the Sophia’s Cure Facebook page that they were “ecstatic” for children newly born with SMA, but that helping create the world’s most expensive drug “is certainly not what we had in mind.”
Malone said he thought it was mostly the potential for blowback that had prevented Novartis from demanding even more for Zolgensma. He’d recommended charging the full $5 million.
“Obviously it didn’t stick,” he said. “They decided not to price the product there, I think, because of the political backlash they would’ve gotten being the first out of the gate at that price point.”
In the months after Zolgensma hit the market in the U.S., parents of children with SMA frequently ran into resistance from health insurers that refused to pay for it.
Between late 2019 and mid-2022, Chicago attorney Eamon Kelly represented at least seven parents battling health plans across the country, helping them appeal denied claims or representing them at state Medicaid hearings.
Hailey Weihs came to Kelly when her insurer, a Medicaid-managed care plan in Texas, wouldn’t pay for Zolgensma for her infant daughter Aniya. As the coverage dispute dragged on, Aniya developed tongue tremors and lost the ability to bear weight on her legs.
Kelly won the case, as he had all the others, but Aniya’s five-month wait to get the drug was terrifying. “Every day kids with this disease lose motor neurons,” Weihs said. “When you lose them, you cannot get them back.”
Now state Medicaid programs and most employer health plans cover Zolgensma, but they often limit which patients get access. Some require doctors to get approval in advance before providing the treatment or impose restrictions on who’s eligible that go beyond what’s on the drug’s label, such as requiring an SMA specialist to prescribe it.
Though fewer than 300 American children are born each year with SMA, treatments for the disease annually rank among the top 20 drug classes for Medicaid spending. From 2019 through 2022, Medicaid spent $309 million on 208 Zolgensma claims, an average of almost $1.5 million per claim. (Under federal law, Medicaid doesn’t pay list price for drugs, getting substantial rebates; other payers also negotiate discounts.)
Globally, more than 4,000 children have been treated with Zolgensma, Novartis said. The drug topped $1 billion in annual sales in its second full year on the market. Through 2024, the company had reported over $6.4 billion in revenue from Zolgensma sales.
Novartis is working to expand use of the drug in older children, in part by seeking approval for a second version of the drug, administered by spinal injection, for children with less severe SMA.
“We are unwavering in our commitment to the SMA community and will continue to advance efforts to ensure access to Zolgensma for SMA patients who may benefit from this transformative, one-time gene therapy,” the company said in its statement.
Still, more than five years after Zolgensma’s approval in the U.S., the drug remains out of reach for children in many low- and middle-income countries.
Love, KEI’s director, said he’s heard from families in countries like India and South Africa, where it’s a struggle to obtain not only Zolgensma, but also other SMA treatments available in the U.S.
“It’s maddening to me,” he said.
After setting aside their charity work, the Gaynors refocused their energy on Sophia and her two younger siblings, who don’t have SMA.
They’ve taken the clan to Disney World and to the Bahamas to swim with dolphins. Their youngest, who’s 8, lies beside Sophia on her bed and watches movies with her.
Now 15, Sophia had her longest-ever hospitalization in early 2024 when a virus caused her blood sugar to plummet and triggered frequent seizures. She didn’t wake up for two weeks. Since then, she’s been weaker, her affect flatter.
Her parents say they don’t think about the future. “Our focus is that she’s happy, that there’s love all around her,” Catherine said. “It’s just day to day.”
The Gaynors have taken solace in the idea that, through Sophia’s Cure, their daughter has made a difference for all the children with SMA who came after her. “That was kind of our consolation prize,” Catherine said.
One of those kids turned out to be her cousin, Vincent’s sister’s son, who was diagnosed with SMA in 2023 and then treated with Zolgensma. He walked at 10 months and now races around. “That helped me, in part, feel better about what we did,” Vincent said.
He still bristles at the drug’s price, which he blames on the payouts hauled in by those at AveXis and now Novartis.
“All those people, they all came in at the 12th hour once the trial was funded and you had the breakthrough,” he said. “Once it was taken from us, it was all about greed.”
Kwik Trip’s EV Charging Stations Project Entering The FO Phase
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Kwik Trip, a popular gas station in the Midwest, is entering the FO phase of FAFO. They are pretty right wing, going so far as to donate $25,000 to a group that funded the insurrection.
Well, I wonder if they are regretting their support of the Republican Party right now. President Musk and Assistant-President Trump took a machete to the federal government and decided to stop funding pretty much everything, so of course electric vehicles and anything not related to Tesla are effectively defunded.
Kwik Trip had planned to install 24 electric vehicle charging stations across Wisconsin in 2025. That is on hold now due to a pause in the program that funded it, called the National Electric Vehicle Infrastructure (NEVI) program. It had allocated $23.3 million in 2024 – most of which actually went to Kwik Trip – to help pay for the installation of 53 EV charging stations across Wisconsin.
In a Feb. 6 letter, the U.S. Department of Transportation’s Federal Highway Administration said “the current NEVI formula program guidance dated June 11, 2024, and all prior versions of this guidance are rescinded.”
OOPSIE.
Wisconsin Gov. Tony Evers is unhappy, saying in a statement that the NEVI program would have helped “build infrastructure for the 21st century across Wisconsin.”
You know who would not have cut off funding for EV charging stations? Pete Buttigieg and Kamala Harris, In fact, they may have INCREASED the funding.
Oh well.
DOGE Fired Nuclear Bomb Specialists. Now They Need Them Back
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DOGE and President Musk are realizing that it is not so easy to replace nuclear energy specialists with a bunch of robots and 20 year old incels. I guess there IS something valuable in education and experience. Bloomberg is reporting that the Energy Department is “seeking to bring back nuclear energy specialists after abruptly telling hundreds of workers that their jobs were eliminated.”
These employees are “responsible for designing and maintaining the nation’s cache of nuclear weapons at the National Nuclear Safety Administration”, but were deemed expendable by DOGE. About 300-400 were let go, but that hasty decision was quickly reversed on Friday. They are now seeking to rehire the workers because “they deal with sensitive national security secrets.”
To be clear, people who work in these roles usually require the highest level of security clearance, which can take over a year and a half to obtain during a normally staffed and well functioning administration. It is unclear how much of a delay DOGE would cause to any background check process.
It is unclear how many of the fired specialists will even want to come back. The former NNSA administrator, Jill Hruby, told Bloomberg: “These people are likely never going to come back and work for the government. We’ve had a very active program requiring an increase to our staff so the indiscriminate layoffs of people will be really difficult for the coming years.”
These firings are a perfect example of the chaos DOGE and President Musk have unleashed on our country – and the world. And this is not the first 180 degree turnaround DOGE has had to make after realizing they made a terrible mistake in firings. Earlier this week they fired a bunch of people at the Small Business Administration, only to tell them that they weren’t being fired, and THEN telling them that they were actually being fired. Fired. Not fired. SIKE, you are fired. For real this time. WHAT?
For those unaware, NNSA is a smaller department in the Energy Department. They are “responsible for producing and dismantling nuclear weapons, providing the Navy with nuclear reactors for submarines and responding to radiological emergencies.” The also “plays a role a key role in counter-terrorism, transporting nuclear weapons around the country and responding to nuclear incidents around the world.” Kind of important work. They have also been researching how AI can be used to make nuclear bombs. Yikes.
God help us all if these people do not come back. I do not trust anyone Trump would install and trust President Musk even less.
Trump To Billionaires: Feel Free To Cheat On Your Taxes!
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Elon Musk is not taking any chances that Congress may not give him and his fellow billionaires the fat tax cuts Puppet Donald Trump promised. So Unelected President Musk is making dire cuts to the IRS that all but guarantee he and his billionaire bros can get away with cheating.
The Washington Post reports that thousands of Internal Revenue Service employees are about to be laid off “as billionaire Elon Musk’s team begins to target tax collections.” You don’t need to be a DOGE Bag to know who benefits from that. Spoiler alert: it’s not regular Americans.
Steve Rosenthal, a tax policy expert, told The Post that the Biden administration efforts to bolster enforcement are now in jeopardy. “Stripping the IRS of resources is a windfall for those who like to game the system, and those are the most sophisticated and richest taxpayers,” Rosenthal said.
Treasury Secretary Scott Bessent, a billionaire who reportedly has been accused of evading taxes and supports more tax cuts for guys like himself, reportedly told Bloomberg that the department would “limit changes” until after tax season ends.
But what about next year? Will there be anything left to fund the government services we all rely on after all the Musk, Trump and MAGA looting?
Report: Trump Wants To Pave Over The White House Rose Garden
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The White House Rose Garden is perhaps the most iconic area of the grounds and borders the Oval Office and the West Wing of the White House. Originally planned by First Lady Edith Roosevelt in 1902, it has seen renovations over the years, most notably with Jackie Kennedy in 1961, and controversially with Melania Trump in 2020, described as “sterile, bland, and devoid of any joy” and by presidential historian Micahel Beschloss as an “evisceration.”
Well, the Trumps are back and now they want to destroy it completely.
Source: New York Times
President Trump has been busy upending the federal government, reorienting U.S. foreign policy, threatening trade wars and winning confirmation for his Cabinet choices.
But he has managed to find time for a project closer to home: He has told associates that he wants to rip up the grass in the Rose Garden, one of the White House’s most iconic and meticulously maintained spots, and replace it with a hard surface to resemble a patio like the one he has at Mar-a-Lago.
Designers have drafted options for how to remake the surface of the Rose Garden, which sits just outside the Oval Office and the Cabinet Room. Mr. Trump has discussed whether it should be limestone or an easily interchangeable hard surface, with the possibility of installing hardwood floors for dancing, according to four people briefed on the discussions, who spoke on the condition of anonymity to describe private conversations.
The roses, apparently, will stay.
NEW
President Trump has been discussing plans to rip up the grass in the White House Rose Garden in order to have a patio like the one he has at Mar-a-Lago.
The White House Rose Garden was created at the direction of First Lady Jacqueline Kennedy.
Full Story:… pic.twitter.com/6lsF5fnWCk
— Yashar Ali 🐘 (@yashar) February 14, 2025