LOCAL COLUMN
OPINION: Cancer doesn't care about politics
When our son Sebasti谩n was diagnosed with metastatic myoepithelial carcinoma at age 2, he was given a very poor prognosis. We also learned that we were not only facing cancer. We were facing the absence of research and no effective treatment options.
We were suddenly expected to make life-and-death decisions with very little scientific information to guide us.
Sebas is now 7 years old. He has endured chemotherapy, surgeries, scans, endless uncertainty and years of living with metastatic cancer. Just weeks ago, his story was featured in the American Association for Cancer Research鈥檚 2026 Cancer Disparities Progress Report, released at a congressional briefing on Capitol Hill.
We were honored that Sebas鈥� story was included. But we also know why it was included: because rare pediatric cancer families face a profound disparity. There are too few experts, too few studies, too few clinical trials and too little research funding.
That is why we are deeply concerned about a proposed rule from the federal Office of Management and Budget that would rewrite government-wide rules for federal grants. Among other changes, the proposal would require a new pre-award review by senior political appointees, including consideration of whether a grant advances the president鈥檚 policy priorities. It would also expand the government鈥檚 ability to suspend or terminate grants after they have been awarded if priorities change and would restrict or chill international scientific collaboration that is essential for rare disease research.
Major cancer and medical research organizations, including AACR and the American Cancer Society Cancer Action Network, have warned that these changes would politicize scientific grantmaking, destabilize research and create new barriers for biomedical science.
For families like ours, the danger is obvious: Critical research could be delayed, denied, disrupted or ended for reasons that have little to do with the quality of the science or the needs of patients.
Federal research grants help build the science that children with rare cancers desperately need. They support researchers who study diseases that private markets often ignore. They allow scientists to ask hard questions, follow evidence and build knowledge over time.
That work cannot depend on political priorities that change from one administration to the next. Cancer research must be guided by scientific merit, expert peer review, public health need and the urgent realities facing patients.
Rare pediatric cancers are already severely underfunded and understudied. For ultrarare cancers like Sebas鈥�, no single hospital, state or even country has enough patients, samples, data or expertise to solve these diseases alone. Progress depends on collaboration across institutions, states and borders.
After Sebas was diagnosed, we co-founded cureMEC: The Myoepithelial Carcinoma Project because we could not accept that so little research existed for his disease. Families like ours must raise money, recruit researchers and fight every day for progress. But family led advocacy and philanthropy cannot replace the National Institutes of Health, the National Cancer Institute or the federal government鈥檚 responsibility to support lifesaving biomedical research.
No parent should have to make uninformed decisions for their child. If this proposal slows or disrupts lifesaving research, children and families will pay the price. For rare pediatric cancer families, delays are not abstract. They can mean the difference between whether a child lives or dies.
Although the public comment period has closed, it is not too late for the administration to withdraw this proposal. The integrity of our nation鈥檚 cancer research system 鈥� and the lives that depend on it 鈥� are too important to subject to politics. Our son鈥檚 future should not depend on whether a research project aligns with political priorities.
Cancer does not care about politics. Federal cancer research should be guided by science, public health and the lives of patients waiting for answers.
Michael Casaus and Naomi Natale are parents to Sebasti谩n and his brother, Santiago. They co-founded the nonprofit, cureMEC.org, whose mission is to raise funds to support research to find new treatments and ultimately a cure for Myoepithelial Carcinoma.
