Part 1: Kids with brain cancer were already in a life and death struggle. Then came Trump
The US president vowed to ‘end childhood cancer’. But his administration is dismantling the search for a cure and sending families scrambling for treatment.
By Ed Pilkington/The Guardian
Thu 15 Jan 2026 06.00 EST
For seven years, Jenn Janosko cared for children with cancer on the ninth floor of New York’s Memorial Sloan Kettering hospital.
It’s the happiest sad place she knows.
The walls of the pediatric inpatient unit are covered in colorful children’s artwork. The floor curves in a circle: older kids do laps pushing their IV poles, while the younger ones trundle around on wagons.
There’s a playroom in which they hold themed events – bingo nights, slime nights, candy-cart nights – to inject some fun into a space otherwise sated with illness and death. One year Janosko, who worked as a nurse, dressed up as a blow-up cow to make the kids laugh.
The floor has its own soundtrack. There’s the ubiquitous beeping of machines: low battery alert, air in line, infusion complete. On a good day, it echoes with laughter and the chirping of little voices. Many other days there is crying, and sometimes screaming, as kids are held down to change their dressings or mediport needles.
The worst are the silent days, when a patient is approaching death. It’s when you brace yourself for what follows: the wailing of parents who have lost their child.
Janosko knew all these sights and sounds so intimately that last August, when she returned to the ward holding four-year-old Izzy’s hand, it felt like a homecoming.
Except this time, her own daughter was the patient.
Izzy had been diagnosed with the cancer every nurse on the ninth floor fears most: diffuse intrinsic pontine glioma, or DIPG. There is no cure, and the cancer is almost universally fatal.
The tumor arises in the brainstem, which controls critical functions such as breathing and heart rate. Surgery is usually impossible given the location, and the disease progresses with brutal speed with a median survival of 11 months.
Janosko took her child to their allocated room. She passed former colleagues who recognised her, some giving her hugs, others looks of pity. As she settled Izzy in, she could picture the faces of the kids she had nursed in the exact same bed, some of whom had succumbed on her watch.
Most parents have no idea what a DIPG diagnosis means. Janosko knew exactly: she was all too aware that the standard treatment of radiation and chemotherapy ultimately does not work.
The only hope for Janosko was to find a clinical trial that would offer Izzy the prospect of a few more months or years of life, or – if she dared to dream – even a glimpse of that elusive cure.
For the past four months, Janosko has chased that vanishingly small hope relentlessly. She has tracked down the 10 medical centers in the US offering the most promising clinical trials, calling again and again until she had to restrain herself, worried about causing irritation. Most trials had a long waiting list, while others were not a good fit for Izzy’s condition.
One, however, could have been a match: a clinical trial run by Izzy’s own neurosurgeon at Memorial. But a new hurdle emerged: the trial, which was ready to launch in cancer centers across the country, was abruptly called off.
Politics had intervened, Janosko was told.
The Trump administration’s dismantling of federal agencies has hit cancer research hard. It has led to budgets being slashed, grants canceled or delayed, while clinical trials – often the final hope for children with terminal illness – have been suspended or closed. Laboratories have imposed a hiring freeze on researchers and postponed orders for new equipment, and world-class scientists are seeking jobs in the private sector or abroad.
Izzy and children like her are suffering the consequences.
For the families involved, this means so much more than the cold budgetary figures cited in congressional debates or across news headlines.
“I know what DIPG does to kids,” Janosko said. “Eventually they can’t move, they can’t talk or smile or eat, they can’t see or hear, but their minds are fully intact. That’s the urgency.”
She put the reality facing her daughter starkly: “If I don’t find a clinical trial for my child, she’ll be dead in a year.”
The big funding freeze
The paradox is hard to miss. Trump’s bid to “Make America great again” is undermining an area in which America is already great – at the global forefront of the search for a cure for this disease.
Over the past 15 years, US medical centers have pioneered breakthroughs in understanding the genetic makeup of child brain tumors. American scientists, working with colleagues around the world, have expanded knowledge of the mutations that cause the tumors to grow.
Those advances have spawned new treatments targeting the cancers’ weak spots at a cellular level. The resulting clinical trials – many of them customized to target the vulnerabilities of each child’s own tumor – do not yet amount to a cure. But they do point towards the path forward. A very small, but potentially significant, number of children with DIPG are still alive several years into treatment.
Many of the greatest innovators in this space have been shaped by the American medical system, or have made their way here from across the world, drawn by its cutting-edge medical research. Despite their disparate roots, they share a common desire to save the lives of children. Neuro-oncologists and surgeons, microbiologists and biostatisticians have joined forces in a team effort that is the envy of other countries.
But science, even at its most altruistic, still needs funding. These cancers are so rare – about 5,000 children are diagnosed with brain tumors in the US each year, including about 300 with the deadly DIPG – that there is little profit incentive to lure big pharma. Federal money is therefore vital, but government support has been limited even during normal administrations.
Pediatric cancers are now the leading cause of death by disease for children in the US, with brain tumors being the most common. Yet child cancers get only 4-8% of the federal pie set aside for medical research into cancer generally.
Donald Trump has promised to “defeat childhood cancer once and for all”. On the frontlines of the disease, scientists and families say the opposite is unfolding.
How the country arrived here is no secret. The blueprint for the administration’s approach to scientific research was set out by Project 2025, a 920-page report compiled by the rightwing Heritage Foundation. It called for, in effect, the dismantling of the federal National Institutes of Health (NIH) as the world’s largest funder of medical research.
“The NIH monopoly on directing research should be broken,” the document says on page 462.
Trump appointed the architect of Project 2025, Russell Vought, as the government’s top budget official. In that role, he spearheaded the assault on the NIH, announced the “dramatic overhaul” of the agency, and blocked the release of billions of dollars of cancer research funding.
Then there was Elon Musk. Even before Trump’s inauguration, the tech billionaire was intervening in ways that would profoundly affect children with brain tumors.
A month before Trump returned to the White House, Musk used his own platform, X, to push a stream of falsehoods and help sink a bipartisan spending bill in Congress. A number of provisions that would have boosted funding for child cancer research were scrapped, including a voucher system that would have injected millions of dollars into experimental trials.
Cancer experts are alarmed over ‘gut-wrenching’ Trump plan to cut research spending by billions.
Within days of Trump’s inauguration, the White House imposed a funding freeze on all federal agencies, including the NIH. Hundreds of medical grants were cancelled, disrupting clinical trials for brain cancer, heart disease and other conditions that had been treating 74,000 patients.
The administration then shifted the goalposts on how federal research grants were distributed. Instead of the top 9% of peer-reviewed applications being approved, from now on only 4% would go ahead.
And in August, the Trump administration said it would withdraw support from North America’s oldest and most productive pediatric brain cancer research network – a group that has led the search for a cure for 25 years. All funding for the Pediatric Brain Tumor Consortium (PBTC), an alliance of 16 leading children’s hospitals in the US and Canada, will end in March.
Almost overnight, the decision brought many of the continent’s most promising clinical trials to a halt.
Children who were already participating in those trials would continue to receive care. But families like Izzy’s had a bitter pill to swallow: the experiments on which they had pinned their last hope would henceforth be closed to new patients.
A raft of closing trials
The Janoskos live in an idyllic lakeside house an hour’s drive north of New York City. When I visited last month, it looked like a holiday postcard: a light dusting of snow on the lawn, a large American flag flapping over the front porch. Inside, model trains and furry animals were scattered liberally over the living room floor.
Yet here was Janosko, amid this idealized vision of American family life, talking to me with tears rolling down her cheeks.
Occasionally, her face would betray a look of total and utter bewilderment. How was it possible, after so many years nursing children with brain cancer, that her own daughter had been hit by the disease?
“I just can’t make sense of it,” she said. “Was this my destiny forever?”
Years spent caring for gravely ill children had left Janosko so anxious about one of her own falling sick that, long before Izzy was diagnosed, she sought therapy.
Whenever a dark thought about her child contracting a terminal illness entered her head, she was encouraged to look at a square and think of something positive.
It didn’t work.
She continued having dire ideations for months before the discovery of Izzy’s tumor. She even found herself agreeing with other pediatric nurses that when you formed a family, it was best to have three children. That way, if one of them died, the survivor wouldn’t be an only child.
Janosko has three children, of whom Izzy is the eldest.
Then one day Izzy’s eyes began crossing themselves, and Janosko’s world imploded. Tests revealed a growing mass on her brainstem.
Dr Mark Souweidane, Izzy’s neurosurgeon at Memorial, designed a clinical trial during which tiny catheters are inserted directly into the brain tissue to channel high concentrations of therapeutic agents slowly into the tumor.
Early tests have been promising. Several children on the trial lived longer than three years, and three patients are long-term survivors. One of them is still alive 12 years on.
I don’t consider it optional to offer research to these kids – I think every one of them should have that option
Sarah Leary
When Izzy was first diagnosed, it appeared that she would be a candidate for this novel drug delivery technique. Through the Pediatric Brain Tumor Consortium, Souweidane was only weeks away from launching an expanded trial across 12 medical centers nationwide.
Then the Trump administration closed the consortium, forcing Souweidane to call off the launch.
The other groundbreaking new treatment Janosko hoped to secure is called Car T-cell therapy. It works by extracting T-cells from a patient’s blood.
T-cells – the foot soldiers of the immune system – are then trained to recognise and attack specific proteins on the surface of the cancer cells. The repurposed Car T-cells are put back into the body and dispatched to the battlefield.
Janosko herself nursed the first children who had received Car T-cells for leukemia. She knows several of those pioneer kids who are still alive today.
Spurred on by the hope that the success of Car T-cell therapy in childhood leukemia might be transferable, Janosko has lobbied several leading medical centers that are applying it to DIPG.
At the time of my visit, however, every door remained closed to her.
A clinical trial at Texas Children’s Cancer Center has been suspended as a result of the consortium’s closure. She tried Stanford Medicine in California, and was told that the trial was taking only one new patient each month. And at Seattle Children’s hospital, she learned more than 50 kids were already on the waiting list.
Professor Sarah Leary, who runs the program in Seattle, said the hardest part of her job was turning frantic parents like Janosko away.
“I don’t consider it optional to offer research to these kids – I think every one of them should have that option,” she said.
She paused, tearing up. “I’ve been doing this for 20 years, and I still get emotional.”
After our interview, Janosko took me with her to pick up Izzy from school. The child emerged carrying a pink backpack. She hugged her mother, leaning heavily against her legs.
Izzy had a shock of golden curls cascading to her shoulders, tied with a red ribbon.
“That’s a pretty red ribbon,” I said.
“No, it’s not pretty,” she fired back, tired and annoyed by the presence of a stranger.
“No, I don’t want to say hello,” she corrected her mother.
Later that day, Janosko texted me a short phone video. In it Izzy, red ribbon still in her hair, looked into the camera and said: “Sorry I was grumpy. It was nice to meet you.”
Soon after I left, Izzy’s spirits had lifted. “I think her meds are making her more irritable,” her mom said. “I just wanted you to experience her cute side. But she’s four …”
The countercurrent against a cure
The back of Dr Eugene Hwang’s office door is covered in a montage of children’s photos. It’s the first thing he sees when he looks up from his desk – about 40 smiling faces beaming back at him.
“Every one of those kids is one of my patients who has passed away,” he said. “It’s a constant reminder. I want to be pushed to remember so I know how urgent this is.”
That urgency has inspired Hwang, a pediatric neuro-oncologist at George Washington University cancer center in Washington DC, to devote the past 15 years caring for children with brain tumors. He approaches every new child he sees with the ambition to cure them, or at least to prolong their life.
“Even when I think the chances of a patient being cured are low, the chances of them having more time than they would without treatment are high. That is the space in which we function,” he said.
Hwang led the PBTC’s working group on immunotherapy, and relished its power to move science rapidly forward thanks to “active critical discussion and collaboration”.
The idea behind the consortium was quite simple: “Get some of the best minds in the world, put them in a room together, and tell them you don’t leave until you’ve fixed it.”
The wind-down of the consortium leaves him deeply concerned about the future of science itself. So many potentially transformative experiments are ending.
“Where and how are we going to do this kind of science and research?” he asked.
Hwang’s own research has been grinding to a halt. He and Elias Sayour, a pediatric oncologist at the University of Florida Health, were working on devising a new treatment for DIPG.
Their approach involves an mRNA vaccine using similar technology to the Covid vaccine. It fires up the body’s immune system – it’s like hitting the nitro button on a racing car, Hwang said – then educates it to be able to recognise and attack a key mutation in the tumor.
Planning for the study was already showing exciting results. Tests on mice did not only shrink the tumor, they destroyed it altogether. A separate mRNA vaccine trial with adults had such a massive inflammatory immune response that it made patients sick, but there, too, no viable tumor cells remained.
There is no guarantee that the technology will work for children with DIPG. But in Hwang’s view, it is certainly worth trying.
A rigorous peer-reviewed process thought the same. It placed Hwang and Sayour’s proposal within the top 7% of grant applications – well within the 9% that had been the federal government’s official cutoff.
When the qualifying band was reduced to 4%, their hopes and ambitions were set back.
“It’s such a major task to walk these families through their darkest times,” Hwang said. “There’s so much uncertainty for them already, and now we have additional uncertainty causing a flight of talent from the research world, slowing the pace of discovery.”
Dr Souweidane, the neurosurgeon at Memorial Sloan Kettering in New York, whose groundbreaking catheter delivery trial Janosko hoped Izzy might join, has also been forced to postpone his plans. It’s one of seven cutting-edge clinical trials that have been closed to new patients as a result of the consortium’s demise.
A catheter delivery clinical trial, conducted in collaboration with Memorial Sloan Kettering Cancer Center was among seven cutting-edge clinical trials that have been closed to new patients as a result of recent research funding cuts.
Souweidane is baffled about what is happening to the march of science in the US. The search for a cure had been moving forward, now it’s receding.
“This goes against evolution. It’s like watching a countercurrent flowing against the evolutionary maturity of cancer therapy and cooperative group trials,” he said.
Leary, the Seattle children’s hospital doctor, helps lead several nationwide collaborative bodies for childhood brain cancer. She has noticed that several research laboratories across the country are facing hiring freezes.
Labs are where much of the heavy lifting is done to analyse the results of clinical trials. They are where some of the big questions are being tackled: why does a particular trial do wonders for 20% of kids, and not the other 80%? How can you tell in advance which kids will be in either cohort?
Federal funding cuts are eating into the capability of labs to answer such critical questions.
One of the stranger consequences of Trump’s new regime is that researchers now contort their language to avoid antagonizing the health secretary, Robert F Kennedy Jr, over his hostility to childhood vaccinations.
Both childhood vaccines and the experimental cancer vaccines rely on mRNA, a molecule that carries genetic instructions inside cells. But in human terms they are apples and oranges: one is designed to protect healthy children from viruses; the other is a last-ditch effort to keep dying children alive.
Advice is now circulating privately among top scientists working in many different cancer settings, urging them to avoid using the term “mRNA” in federal applications. Find other ways to say the same thing, the advice goes, so that you don’t risk being blacklisted.
I approached both the White House and the US Department of Health and Human Services. I asked them if they wished to comment about the apparent stark contrast between Trump’s pledge to defeat childhood cancer and the reality on the ground.
The HHS responded with a statement. “NIH continues to invest significantly in bold and innovative cancer research,” it said. “Ending the scourge of cancer is one of our highest priorities, as reflected in the National Cancer Institute’s (NCI’s) budget of more than $7 billion – the largest of any NIH institute or center.”
The director of the NCI, Dr Anthony Letai, also commented. He said that the NCI, which leads most US cancer research, spent more last year in extramural grants than in any previous year, and that “pediatric brain cancer research remains a high priority”.
He added that the decision to “pivot” away from the consortium had been made for “good logistical reasons”. PBTC trials would
By Ed Pilkington/The Guardian
Thu 15 Jan 2026 06.00 EST
For seven years, Jenn Janosko cared for children with cancer on the ninth floor of New York’s Memorial Sloan Kettering hospital.
It’s the happiest sad place she knows.
The walls of the pediatric inpatient unit are covered in colorful children’s artwork. The floor curves in a circle: older kids do laps pushing their IV poles, while the younger ones trundle around on wagons.
There’s a playroom in which they hold themed events – bingo nights, slime nights, candy-cart nights – to inject some fun into a space otherwise sated with illness and death. One year Janosko, who worked as a nurse, dressed up as a blow-up cow to make the kids laugh.
The floor has its own soundtrack. There’s the ubiquitous beeping of machines: low battery alert, air in line, infusion complete. On a good day, it echoes with laughter and the chirping of little voices. Many other days there is crying, and sometimes screaming, as kids are held down to change their dressings or mediport needles.
The worst are the silent days, when a patient is approaching death. It’s when you brace yourself for what follows: the wailing of parents who have lost their child.
Janosko knew all these sights and sounds so intimately that last August, when she returned to the ward holding four-year-old Izzy’s hand, it felt like a homecoming.
Except this time, her own daughter was the patient.
Izzy had been diagnosed with the cancer every nurse on the ninth floor fears most: diffuse intrinsic pontine glioma, or DIPG. There is no cure, and the cancer is almost universally fatal.
The tumor arises in the brainstem, which controls critical functions such as breathing and heart rate. Surgery is usually impossible given the location, and the disease progresses with brutal speed with a median survival of 11 months.
Janosko took her child to their allocated room. She passed former colleagues who recognised her, some giving her hugs, others looks of pity. As she settled Izzy in, she could picture the faces of the kids she had nursed in the exact same bed, some of whom had succumbed on her watch.
Most parents have no idea what a DIPG diagnosis means. Janosko knew exactly: she was all too aware that the standard treatment of radiation and chemotherapy ultimately does not work.
The only hope for Janosko was to find a clinical trial that would offer Izzy the prospect of a few more months or years of life, or – if she dared to dream – even a glimpse of that elusive cure.
For the past four months, Janosko has chased that vanishingly small hope relentlessly. She has tracked down the 10 medical centers in the US offering the most promising clinical trials, calling again and again until she had to restrain herself, worried about causing irritation. Most trials had a long waiting list, while others were not a good fit for Izzy’s condition.
One, however, could have been a match: a clinical trial run by Izzy’s own neurosurgeon at Memorial. But a new hurdle emerged: the trial, which was ready to launch in cancer centers across the country, was abruptly called off.
Politics had intervened, Janosko was told.
The Trump administration’s dismantling of federal agencies has hit cancer research hard. It has led to budgets being slashed, grants canceled or delayed, while clinical trials – often the final hope for children with terminal illness – have been suspended or closed. Laboratories have imposed a hiring freeze on researchers and postponed orders for new equipment, and world-class scientists are seeking jobs in the private sector or abroad.
Izzy and children like her are suffering the consequences.
For the families involved, this means so much more than the cold budgetary figures cited in congressional debates or across news headlines.
“I know what DIPG does to kids,” Janosko said. “Eventually they can’t move, they can’t talk or smile or eat, they can’t see or hear, but their minds are fully intact. That’s the urgency.”
She put the reality facing her daughter starkly: “If I don’t find a clinical trial for my child, she’ll be dead in a year.”
The big funding freeze
The paradox is hard to miss. Trump’s bid to “Make America great again” is undermining an area in which America is already great – at the global forefront of the search for a cure for this disease.
Over the past 15 years, US medical centers have pioneered breakthroughs in understanding the genetic makeup of child brain tumors. American scientists, working with colleagues around the world, have expanded knowledge of the mutations that cause the tumors to grow.
Those advances have spawned new treatments targeting the cancers’ weak spots at a cellular level. The resulting clinical trials – many of them customized to target the vulnerabilities of each child’s own tumor – do not yet amount to a cure. But they do point towards the path forward. A very small, but potentially significant, number of children with DIPG are still alive several years into treatment.
Many of the greatest innovators in this space have been shaped by the American medical system, or have made their way here from across the world, drawn by its cutting-edge medical research. Despite their disparate roots, they share a common desire to save the lives of children. Neuro-oncologists and surgeons, microbiologists and biostatisticians have joined forces in a team effort that is the envy of other countries.
But science, even at its most altruistic, still needs funding. These cancers are so rare – about 5,000 children are diagnosed with brain tumors in the US each year, including about 300 with the deadly DIPG – that there is little profit incentive to lure big pharma. Federal money is therefore vital, but government support has been limited even during normal administrations.
Pediatric cancers are now the leading cause of death by disease for children in the US, with brain tumors being the most common. Yet child cancers get only 4-8% of the federal pie set aside for medical research into cancer generally.
Donald Trump has promised to “defeat childhood cancer once and for all”. On the frontlines of the disease, scientists and families say the opposite is unfolding.
How the country arrived here is no secret. The blueprint for the administration’s approach to scientific research was set out by Project 2025, a 920-page report compiled by the rightwing Heritage Foundation. It called for, in effect, the dismantling of the federal National Institutes of Health (NIH) as the world’s largest funder of medical research.
“The NIH monopoly on directing research should be broken,” the document says on page 462.
Trump appointed the architect of Project 2025, Russell Vought, as the government’s top budget official. In that role, he spearheaded the assault on the NIH, announced the “dramatic overhaul” of the agency, and blocked the release of billions of dollars of cancer research funding.
Then there was Elon Musk. Even before Trump’s inauguration, the tech billionaire was intervening in ways that would profoundly affect children with brain tumors.
A month before Trump returned to the White House, Musk used his own platform, X, to push a stream of falsehoods and help sink a bipartisan spending bill in Congress. A number of provisions that would have boosted funding for child cancer research were scrapped, including a voucher system that would have injected millions of dollars into experimental trials.
Cancer experts are alarmed over ‘gut-wrenching’ Trump plan to cut research spending by billions.
Within days of Trump’s inauguration, the White House imposed a funding freeze on all federal agencies, including the NIH. Hundreds of medical grants were cancelled, disrupting clinical trials for brain cancer, heart disease and other conditions that had been treating 74,000 patients.
The administration then shifted the goalposts on how federal research grants were distributed. Instead of the top 9% of peer-reviewed applications being approved, from now on only 4% would go ahead.
And in August, the Trump administration said it would withdraw support from North America’s oldest and most productive pediatric brain cancer research network – a group that has led the search for a cure for 25 years. All funding for the Pediatric Brain Tumor Consortium (PBTC), an alliance of 16 leading children’s hospitals in the US and Canada, will end in March.
Almost overnight, the decision brought many of the continent’s most promising clinical trials to a halt.
Children who were already participating in those trials would continue to receive care. But families like Izzy’s had a bitter pill to swallow: the experiments on which they had pinned their last hope would henceforth be closed to new patients.
A raft of closing trials
The Janoskos live in an idyllic lakeside house an hour’s drive north of New York City. When I visited last month, it looked like a holiday postcard: a light dusting of snow on the lawn, a large American flag flapping over the front porch. Inside, model trains and furry animals were scattered liberally over the living room floor.
Yet here was Janosko, amid this idealized vision of American family life, talking to me with tears rolling down her cheeks.
Occasionally, her face would betray a look of total and utter bewilderment. How was it possible, after so many years nursing children with brain cancer, that her own daughter had been hit by the disease?
“I just can’t make sense of it,” she said. “Was this my destiny forever?”
Years spent caring for gravely ill children had left Janosko so anxious about one of her own falling sick that, long before Izzy was diagnosed, she sought therapy.
Whenever a dark thought about her child contracting a terminal illness entered her head, she was encouraged to look at a square and think of something positive.
It didn’t work.
She continued having dire ideations for months before the discovery of Izzy’s tumor. She even found herself agreeing with other pediatric nurses that when you formed a family, it was best to have three children. That way, if one of them died, the survivor wouldn’t be an only child.
Janosko has three children, of whom Izzy is the eldest.
Then one day Izzy’s eyes began crossing themselves, and Janosko’s world imploded. Tests revealed a growing mass on her brainstem.
Dr Mark Souweidane, Izzy’s neurosurgeon at Memorial, designed a clinical trial during which tiny catheters are inserted directly into the brain tissue to channel high concentrations of therapeutic agents slowly into the tumor.
Early tests have been promising. Several children on the trial lived longer than three years, and three patients are long-term survivors. One of them is still alive 12 years on.
I don’t consider it optional to offer research to these kids – I think every one of them should have that option
Sarah Leary
When Izzy was first diagnosed, it appeared that she would be a candidate for this novel drug delivery technique. Through the Pediatric Brain Tumor Consortium, Souweidane was only weeks away from launching an expanded trial across 12 medical centers nationwide.
Then the Trump administration closed the consortium, forcing Souweidane to call off the launch.
The other groundbreaking new treatment Janosko hoped to secure is called Car T-cell therapy. It works by extracting T-cells from a patient’s blood.
T-cells – the foot soldiers of the immune system – are then trained to recognise and attack specific proteins on the surface of the cancer cells. The repurposed Car T-cells are put back into the body and dispatched to the battlefield.
Janosko herself nursed the first children who had received Car T-cells for leukemia. She knows several of those pioneer kids who are still alive today.
Spurred on by the hope that the success of Car T-cell therapy in childhood leukemia might be transferable, Janosko has lobbied several leading medical centers that are applying it to DIPG.
At the time of my visit, however, every door remained closed to her.
A clinical trial at Texas Children’s Cancer Center has been suspended as a result of the consortium’s closure. She tried Stanford Medicine in California, and was told that the trial was taking only one new patient each month. And at Seattle Children’s hospital, she learned more than 50 kids were already on the waiting list.
Professor Sarah Leary, who runs the program in Seattle, said the hardest part of her job was turning frantic parents like Janosko away.
“I don’t consider it optional to offer research to these kids – I think every one of them should have that option,” she said.
She paused, tearing up. “I’ve been doing this for 20 years, and I still get emotional.”
After our interview, Janosko took me with her to pick up Izzy from school. The child emerged carrying a pink backpack. She hugged her mother, leaning heavily against her legs.
Izzy had a shock of golden curls cascading to her shoulders, tied with a red ribbon.
“That’s a pretty red ribbon,” I said.
“No, it’s not pretty,” she fired back, tired and annoyed by the presence of a stranger.
“No, I don’t want to say hello,” she corrected her mother.
Later that day, Janosko texted me a short phone video. In it Izzy, red ribbon still in her hair, looked into the camera and said: “Sorry I was grumpy. It was nice to meet you.”
Soon after I left, Izzy’s spirits had lifted. “I think her meds are making her more irritable,” her mom said. “I just wanted you to experience her cute side. But she’s four …”
The countercurrent against a cure
The back of Dr Eugene Hwang’s office door is covered in a montage of children’s photos. It’s the first thing he sees when he looks up from his desk – about 40 smiling faces beaming back at him.
“Every one of those kids is one of my patients who has passed away,” he said. “It’s a constant reminder. I want to be pushed to remember so I know how urgent this is.”
That urgency has inspired Hwang, a pediatric neuro-oncologist at George Washington University cancer center in Washington DC, to devote the past 15 years caring for children with brain tumors. He approaches every new child he sees with the ambition to cure them, or at least to prolong their life.
“Even when I think the chances of a patient being cured are low, the chances of them having more time than they would without treatment are high. That is the space in which we function,” he said.
Hwang led the PBTC’s working group on immunotherapy, and relished its power to move science rapidly forward thanks to “active critical discussion and collaboration”.
The idea behind the consortium was quite simple: “Get some of the best minds in the world, put them in a room together, and tell them you don’t leave until you’ve fixed it.”
The wind-down of the consortium leaves him deeply concerned about the future of science itself. So many potentially transformative experiments are ending.
“Where and how are we going to do this kind of science and research?” he asked.
Hwang’s own research has been grinding to a halt. He and Elias Sayour, a pediatric oncologist at the University of Florida Health, were working on devising a new treatment for DIPG.
Their approach involves an mRNA vaccine using similar technology to the Covid vaccine. It fires up the body’s immune system – it’s like hitting the nitro button on a racing car, Hwang said – then educates it to be able to recognise and attack a key mutation in the tumor.
Planning for the study was already showing exciting results. Tests on mice did not only shrink the tumor, they destroyed it altogether. A separate mRNA vaccine trial with adults had such a massive inflammatory immune response that it made patients sick, but there, too, no viable tumor cells remained.
There is no guarantee that the technology will work for children with DIPG. But in Hwang’s view, it is certainly worth trying.
A rigorous peer-reviewed process thought the same. It placed Hwang and Sayour’s proposal within the top 7% of grant applications – well within the 9% that had been the federal government’s official cutoff.
When the qualifying band was reduced to 4%, their hopes and ambitions were set back.
“It’s such a major task to walk these families through their darkest times,” Hwang said. “There’s so much uncertainty for them already, and now we have additional uncertainty causing a flight of talent from the research world, slowing the pace of discovery.”
Dr Souweidane, the neurosurgeon at Memorial Sloan Kettering in New York, whose groundbreaking catheter delivery trial Janosko hoped Izzy might join, has also been forced to postpone his plans. It’s one of seven cutting-edge clinical trials that have been closed to new patients as a result of the consortium’s demise.
A catheter delivery clinical trial, conducted in collaboration with Memorial Sloan Kettering Cancer Center was among seven cutting-edge clinical trials that have been closed to new patients as a result of recent research funding cuts.
Souweidane is baffled about what is happening to the march of science in the US. The search for a cure had been moving forward, now it’s receding.
“This goes against evolution. It’s like watching a countercurrent flowing against the evolutionary maturity of cancer therapy and cooperative group trials,” he said.
Leary, the Seattle children’s hospital doctor, helps lead several nationwide collaborative bodies for childhood brain cancer. She has noticed that several research laboratories across the country are facing hiring freezes.
Labs are where much of the heavy lifting is done to analyse the results of clinical trials. They are where some of the big questions are being tackled: why does a particular trial do wonders for 20% of kids, and not the other 80%? How can you tell in advance which kids will be in either cohort?
Federal funding cuts are eating into the capability of labs to answer such critical questions.
One of the stranger consequences of Trump’s new regime is that researchers now contort their language to avoid antagonizing the health secretary, Robert F Kennedy Jr, over his hostility to childhood vaccinations.
Both childhood vaccines and the experimental cancer vaccines rely on mRNA, a molecule that carries genetic instructions inside cells. But in human terms they are apples and oranges: one is designed to protect healthy children from viruses; the other is a last-ditch effort to keep dying children alive.
Advice is now circulating privately among top scientists working in many different cancer settings, urging them to avoid using the term “mRNA” in federal applications. Find other ways to say the same thing, the advice goes, so that you don’t risk being blacklisted.
I approached both the White House and the US Department of Health and Human Services. I asked them if they wished to comment about the apparent stark contrast between Trump’s pledge to defeat childhood cancer and the reality on the ground.
The HHS responded with a statement. “NIH continues to invest significantly in bold and innovative cancer research,” it said. “Ending the scourge of cancer is one of our highest priorities, as reflected in the National Cancer Institute’s (NCI’s) budget of more than $7 billion – the largest of any NIH institute or center.”
The director of the NCI, Dr Anthony Letai, also commented. He said that the NCI, which leads most US cancer research, spent more last year in extramural grants than in any previous year, and that “pediatric brain cancer research remains a high priority”.
He added that the decision to “pivot” away from the consortium had been made for “good logistical reasons”. PBTC trials would
