A 12-Year-Old Boy’s Future Is at Stake. So Is America’s Research Legacy.


Recently, a physician-scientist at my institute asked me a question:
"Do you know when a new clinical trial for synovial sarcoma will open? I'm treating a 12-year-old boy with a very large tumor in his elbow. If the orthopedic surgeon finds that it has infiltrated the joint, we may have to amputate his arm."
This boy plays baseball. The possibility of losing an arm is not just a medical crisis; it threatens his ability to continue doing something he loves.
Apart from surgery, which sometimes means amputation, there is no cure for this rare cancer. The lack of options for children and young adults with this disease is why I chose to study it.
Synovial sarcoma is caused by the fusion of two genes. Normally, these genes exist separately in our cells and produce two different proteins that do two different jobs. In synovial sarcoma, they are fused into a single gene that makes one abnormal protein. This fusion protein hijacks the cell's normal machinery, setting off a chain of events that turns a healthy cell into a cancerous one.
National Institutes of Health funding to labs like mine is crucial to helping this child and others like him live normal lives. Government grants pay for the research that tells us what this fusion protein does in cells, how to eliminate it, and how to develop new cures. The impact goes beyond the lab.
In cities across the country, NIH funding has fueled the growth of local economies. Federal Small Business Innovation Research grants have helped turn scientific breakthroughs in the lab into innovative technologies that improve everyday life. Companies ranging from genetic sequencing technology company Illumina, now worth billions of dollars, to countless two-person startups have flourished because of the money flowing from NIH and National Science Foundation grant systems.
This science-forward ecosystem is what made America great in the first place, and it remains the brightest gem in the world. It is worth preserving.
Over the past 21 months, the current administration has taken a wrecking ball to this ecosystem. Grants that should have been funded were not. Grants already awarded were not honored. Since January 2025, the Trump administration has frozen or terminated nearly 5,800 NIH research grants, according to an analysis by the Association of American Medical Colleges. Although some funding has since been restored, more than 1,100 grants have not been reinstated.
Trump now wants to put political appointees in charge of deciding which grants get funded. While they may not understand the science or technology they are reviewing, it’s clear their sole objective will be to judge grants on how well the research aligns with the administration's agenda—not on scientific merit.
Things are so out of control that measles—a disease declared eliminated more than a quarter century ago in the U.S.—has now caused six deaths in Pennsylvania this year, according to several news reports. (The state has confirmed five measles-related deaths and is investigating the sixth one.) Instead of reporting these deaths, the administration is trying to hide them by changing how deaths are counted. It has acknowledged only three of them so far. The measles upsurge is being deliberately fueled by the current administration, which keeps casting spurious doubts on the measles, mumps, and rubella (MMR) vaccine.
Although Health and Human Services Secretary Robert F. Kennedy Jr. has acknowledged the effectiveness of the MMR vaccine, his repeated questioning of vaccine safety and protection, along with his efforts to change federal vaccine guidance, has raised concerns among public-health experts. Moreover, he has failed to report hundreds of thousands of dollars he made from his anti-vaccine nonprofit, after claiming he never took a cent from it.
The Lancet, one of the world's leading medical journals, warned that his misleading, conspiratorial claims have already eroded public trust in vaccines and public health. The journal cautions that the damage could be deadly and could reach well beyond our borders. The poorest and most vulnerable will not be the only ones to suffer. Infants too young to be vaccinated, people with weakened immune systems, elderly people, and entire communities are at risk.
Why are we putting our lives and our economy at risk by voting for people who don't care about us, people who would rather enrich themselves than give common-sense advice to ease people's suffering? This is not what we signed up for. We all need to work to elect Democrats this upcoming election cycle.
As for me, I am going back to my lab to see what I can do, with the limited resources I have, to help this boy keep his arm and continue playing baseball—after I vote!
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