As the ALS disease that will one day claim her life progressed, Barbara Johnson enrolled in a clinical trial at the University of Colorado Anschutz Medical Campus funded by the federal National Institutes of Health.
The trial did not prove successful, and now she can no longer participate in others because the disease has taken away her ability to swallow pills, her ability to eat, her ability to speak.
“I know I will not survive to see a cure,” Johnson, who uses a voice assistant device, said during a visit to the campus Tuesday.
But her participation in that trial — and the existence of other NIH-funded studies and experimental therapies — continues to bring her hope. Johnson, who holds a Ph.D. and lives in Laporte, spent her career studying diseases for the U.S. Centers for Disease Control and Prevention. She knows that science isn’t always about breakthroughs but buildups, one study lifting up another lifting up another.
A wave, she calls it.
“It has been my life’s work and that of many, many colleagues around the world to improve the health of all people, to be the wave to lift all boats,” she said. “Even though I won’t survive this disease, I want to be part of that wave, to contribute toward an ALS cure.”
Then, in the statement recorded by her daughter and played through her voice assistant, she directed a message to the man sitting on the other end of a long conference table from her, U.S. Sen. John Hickenlooper, a Colorado Democrat.
“Does NIH really want to cut loose these years of research, one study building on the results of another, and all those lifesaving waves?”
During a visit to a cancer lab at the University of Colorado Anschutz Medical Campus by U.S. Sen. John Hickenlooper on March 18, 2025, Barbara Johnson, Ph.D., second from left, discusses the importance research funding with the use of voice assistant from her laptop and phone. Johnson uses the assistant because she has ALS and can no longer speak. (Kathryn Scott, Special to The Colorado Sun)
Hickenlooper toured a lab and participated in a panel discussion Tuesday at the Anschutz Campus as part of an effort to understand how proposed cuts to NIH funding would impact research on the campus — and, in fact, already are.
CU-Anschutz is the largest recipient of NIH funding in Colorado. The agency awarded labs and organizations on the campus more than $360 million in grants in 2024, out of more than $560 million awarded statewide. Don Elliman, the campus’s chancellor, said the research funding supports roughly $1.6 billion in economic activity in Colorado annually and 40,000 jobs.
Proposed NIH cuts just to so-called indirect funding — portions of grants that help pay for the infrastructure and administrative costs to conduct research — could cost institutions around the state more than $90 million, including approximately $74 million at CU-Anschutz.
A federal judge has blocked those cuts to indirect funding from taking place, for now. But researchers nationwide also fear deeper cuts to NIH funding, especially as new U.S. Department of Health and Human Services Secretary Robert F. Kennedy, Jr. looks to remake the agency’s focus.
According to CU-Anschutz campus officials, two grants where the Colorado School of Public Health was a subcontractor have been canceled so far. One grant focused on vaccine hesitancy among Alaska Native communities. Another studied the link between Alzheimer’s disease and diabetes. Combined, the grants totaled about $1.7 million.
“These issues that we’re currently facing, obviously, will have an impact on Coloradans and on people around the world, threatening, potentially, life-changing cures and treatment for diseases such as cancer, Alzheimer’s and chronic lung diseases,” Elliman said Tuesday.
Inside the Ford Lab, Sheera Rosenbaum, Ph.D., working with mouse breast cancer cells, looks at proteins moving into the nucleus at the CU Anschutz Medical Campus in Aurora on March 18, 2025. (Kathryn Scott, Special to The Colorado Sun)
Researchers who participated in the panel discussion with Hickenlooper talked of the worry coursing through their labs and weighing on the long-term planning of their graduate students.
“There’s a lot of stress in academia right now,” Heide Ford told Hickenlooper during a tour of her lab, which studies cancer cells.
Researchers talked about fearing that their grants could be canceled at any moment, especially if their research involves work on possibly politically charged topics like women’s health, climate change or vaccines. Some, including Ford, said they were reluctant to hire new students for their labs, worried they might not be able to sustain them if funding is cut.
Greg Ebel, who studies West Nile virus and other mosquito-transmitted diseases at Colorado State University, talked about how having strong research institutions can provide the country a vital pool of resources during an emergency. He mentioned his own lab, which during the COVID pandemic quickly pivoted to providing testing for the virus.
“These are the kind of things you lose, but you don’t lose them right away,” he said. “You lose them over time.”
But, mostly, they talked about their fears that momentum on research into deadly diseases and important treatments will be lost. To use Johnson’s metaphor, the wave will dissipate. Studies could dry up, they said. New scientists will choose to work in different industries or different professions.
Dr. Lia Gore, who studies and treats cancer in children, said funding cuts that limit opportunity for young researchers could lead to a loss of a generation of scientists, leaving fewer to pick up where the previous generation’s work left off.
“We are so fragile right now,” she said.
U.S. Senator John Hickenlooper, addresses a gathering of health industry experts and researchers at the CU Anschutz Medical Campus on March 18, 2025 in Aurora, Colorado. (Kathryn Scott, Special to The Colorado Sun)
Hickenlooper vowed to take these stories back to Washington, D.C., with him in the hopes of persuading Senate colleagues to oppose the funding cuts.
He rejected a more confrontational approach, saying that he believes many Republicans in Congress support science and believes a number are “getable” by finding common ground.
“Telling someone why they’re wrong and why you think you’re right never works,” he said. “Our country needs to figure out how we’re going to get unified around science again.”
The most powerful way to do that, he said, is by sharing the stories of researchers and the work they do — and the risk that funding cuts could derail it.
“I think as more people in Colorado or across the country hear about these setbacks in terms of consistent funding for real medical research that changes the world, I think people are going to be pissed off,” Hickenlooper said. “I think we’re going to hear from them, and we should. This is irresponsible.”
Type of Story: News
Based on facts, either observed and verified directly by the reporter, or reported and verified from knowledgeable sources.