Olivia Vitello is 13 and a student at Hamilton International Middle School in Wallingford. She likes baking, reading, hanging out with friends. Her favorite class is Spanish.
And without the hundreds of billions of dollars that the National Institutes of Health have spent on medical research over the years, Olivia might not be here today.
Olivia has a rare genetic disorder, mucopolysaccharidosis type IVA, affecting the skeletal system and other functions. She was diagnosed when she was 6 and soon began weekly treatment, with a new drug that had been approved just a couple years before.
“Without this innovation and all the work and the research that is being put into rare genetics, we wouldn’t be where we are right now, which is Olivia is almost 14 and an eighth grader,” said Alisa Vitello, Olivia’s mother, talking through tears. “It gives us a lifeline.”
Olivia and Alisa were among the Seattle-area patients, researchers, doctors and advocates at Seattle Children’s Research Institute on Friday to speak against the Trump administration’s multifront attack on the National Institutes of Health.
President Donald Trump, since the earliest days of his second term, has pushed to trim the NIH, the world’s premier funder of medical research. The administration has pushed out or fired 5,000 NIH employees, according to Sen. Patty Murray’s office. It has tried to withhold billions in funding for researchers’ “indirect costs,” money that funds things like lab building maintenance, equipment and support staff. It has canceled 800 grants, Murray said, studying things like HIV, breast cancer and pregnancy, as it seeks to halt all funding that it says is related to gender or diversity, equity and inclusion. And it has delayed or withheld payments on an untold number of other grants, leaving researchers in limbo, unsure if their projects can continue.
Trump’s proposed budget, released Friday, said NIH is “too big and unfocused” and that the agency “has broken the trust of the American people with wasteful spending, misleading information, risky research, and the promotion of dangerous ideologies that undermine public health.”
The proposed budget would cut NIH funding by 40% next year, or roughly $18 billion.
NIH sends funding to universities and institutions all over the country, including more than $1 billion annually to local organizations like the University of Washington, Seattle Children’s and Fred Hutch.
“Speak up, being silent doesn’t help us,” Murray said Friday at Seattle Children’s. “We want funding for the hope and the cures and the research that goes on here, at this research institute and across the country, because any one of our families will likely need it.”
NIH-funded research contributed to 354 of the 356 new drugs that were approved in the U.S. between 2010 and 2019, according to a 2023 study in the Journal of the American Medical Association. That is 99.5% of all new drugs.
Among those new drugs is the enzyme replacement therapy Olivia takes once a week. It is a four- to six-hour process each time, involving a numbing cream and medicine that is pumped from a backpack into her body.
“I usually just lay down because I get really tired,” Olivia said. “But I’m very grateful and lucky to get the medicine, and I really hope other researchers can find treatments for patients with MPS.”
At Seattle Children’s, NIH funding accounted for about 60% of research programs last year, said Vittorio Gallo, the chief scientific officer at Seattle Children’s Research Institute. That includes research into things like pediatric brain tumors, cystic fibrosis, intractable epilepsies and a range of behavioral health issues.
The hospital’s research arm currently has 200 ongoing clinical trials that would be at risk without sustained NIH funding, Gallo said.
“These cuts in NIH funding are not just budget decisions, they have real and immediate impact on real children and on their families,” Gallo said.
Among the researchers whose funding has vanished is Mary-Claire King, a professor of genetics and genome sciences at the University of Washington.
King is a giant in her field, a 2016 recipient of the National Medal of Science, the nation’s highest recognition for scientific achievement.
She discovered the BRCA1 gene, showing that inherited genetic mutations can drastically increase the risk of breast cancer.
“Every single American should be grateful for Mary-Claire King’s path,” former President Barack Obama once said.
She calls herself a “child of NIH” and said this is the 50th consecutive year that her research has been supported by the agency.
But King’s UW lab has now been waiting for four months for $1.8 million in already authorized NIH funding that she says has simply not shown up.
Her grant has not been canceled. But the money has not arrived. Her calls and emails to NIH have gone unreturned.
“It’s just in limbo, somehow it is frozen, no reason has been given,” she said. “It’s preposterous. I don’t know why it’s happening. I’m being ghosted.”
The project, she said, is the “capstone” of 15 years of genomic work, all of which “is lost if I can’t do the sequencing, can’t do the biochemistry.”
Four researchers in her lab, she said, are currently being paid out of her own salary and from past gifts, as they wait on the already allocated funding to be sent.
King shared a letter she received years ago, from a woman whose mother had died of breast cancer.
“She missed my high school graduation,” the woman wrote. “She missed my college graduation, she missed my marriage, she missed the birth of her granddaughter.”
When the woman learned that it was possible to do genetic testing to see if her BRCA1 gene was predisposed to cancer, she did it immediately. She had the same mutation that “surely is what killed” her mother. But she was then able to have preventive surgery. She is fine.
“My daughter graduates from high school this June,” the woman wrote. “Just thought you’d like to know.”
The opinions expressed in reader comments are those of the author only and do not reflect the opinions of The Seattle Times.