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Title: Rare Cancer Patients Are Running Out of Options—and Time

Alternate titles:
Every Delay Costs Lives—Restore Rare Cancer Research Now
Cutting Research Leaves Rare Cancer Patients With Even Fewer Options

If the federal government keeps cutting funding for medical research, people will die. That’s not hyperbole. It’s the reality that thousands of Americans living with rare cancers, like [ME/MY LOVED ONE], are facing as we watch our already few chances for new, effective treatments slipping away.

Cancer doesn’t care how you vote, where you live, or what you earn. It’s a relentless enemy—and science has always been our most powerful weapon against it. Over the last three decades, government-funded research has offered rare cancer patients like [ME/MY LOVED ONE] hope where there was once none—extending lives, opening doors to clinical trials, and slowly building a future we could be part of. But this administration’s sweeping, short-sighted cuts are tearing down that progress—and with it, our chances for survival.

I was first diagnosed with [CANCER TYPE], a rare cancer that affects only [X in Y people / total U.S. cases annually], in [YEAR]. At the time, I was a [AGE]-year-old [ADD DESCRIPTION (e.g., parent, teacher, student, etc.)] with hopes and plans for the future. Like so many rare cancer patients, I was hit with a wave of devastating news: there were no treatments. No roadmap. No proven path forward. But I wasn’t ready to give up. I searched relentlessly for answers—enrolling in [NUMBER] clinical trial(s), consulting experts at [NAMES OF HOSPITALS OR RESEARCHERS], and doing everything I could to stay one step ahead of a disease the medical world barely understands. Every step forward was powered by science—by research backed by the federal government.

Over the past 30 years, federally funded cancer research has saved an estimated 4.1 million lives. But since the start of 2025, the government has slashed cancer research budgets as part of overarching cuts to our national scientific infrastructure. The Congressionally Directed Medical Research Program (CDMRP) saw a 57% cut overall—including $185 million from cancer programs alone. Additionally, more than 2,600 grants supporting research across a range of diseases, including cancer, have been terminated at the National Institutes of Health, eliminating $3.3 billion in promised funds and threatening the nation’s position as the world leader in biomedical research. These are not “waste reduction” efforts. They’re life-threatening decisions.

More than 1 in 4 cancers is considered rare, and there are over 200 rare cancer types. Rare cancers were already under-resourced and under-researched. But today, with more than 1,500 NIH staff eliminated through DOGE’s reduction in force (RIF) efforts, including hundreds at the National Cancer Institute, we’re losing the scientists and data capable of finding cures. When scientists’ jobs are eliminated, their research stops. And all the data that was carefully collected in partnership and trust with patients across the country is abandoned.

According to the American Association for Cancer Research, 25% of cancer researchers have already reported delays or outright cancellations of clinical trials. That means people [LIKE ME/MY LOVED ONE] are being removed from studies that are their best, and often only, shot at survival. [ADD PERSONAL DETAILS]

If not for research, I might not be here to write this. Sustained investments in [CANCER TYPE] research from [NIH and FOUNDATION, if applicable] made it possible for science to catch up to my cancer before it was too late.

New treatment options mean everything to families like mine. They mean more birthdays. More milestones. More time together. For me, it’s meant [INSERT A MEMORY OR MILESTONE TREATMENTS ENABLED YOU TO REACH. (e.g., a birthday, a graduation, the birth of a child or grandchild, etc.)]