The Human Cost of Defunding Science

Ben's story, haiku's and action items

This week, I had the opportunity to go to the U.S. Capitol to advocate for our country’s scientific research enterprise. I’ll write more on this later, but while I was there, I couldn’t stop thinking about Ben and the thousands of people like him.

Ben’s partner Beth reached out to me on Instagram a few weeks ago, desperate to share their story so that people could understand that the cuts happening to science have real consequences to everyday people. So this past weekend, I had the privilege of meeting Ben and Beth over zoom and hearing their story. They have given me permission to write this, and to share the video recording of our conversation (which I will be releasing as soon as I finish editing it)!

Ben’s Story

If you met Ben today, you probably wouldn’t guess that he’s living with cancer. But underneath his t-shirt is a port for infusions, and behind his easy smile is the reality of living every day with stage 4B metastatic colorectal cancer. The only thing keeping him alive right now is the research pipeline that has been built by decades of federally funded work through the National Institute of Health (NIH) and one of its institutions - the National Cancer Institute.

Ben didn’t feel sick when his cancer journey started. He didn’t have any obvious symptoms until one day he developed what seemed like an annoying bout of constipation that wouldn’t go away. Days passed and the usual remedies didn’t help. Finally, after being exhausted and unable to sit, stand, or lie down comfortably, he sought medical care.

There, he was told something that no one expects to hear in their thirties – he had a mass in his colon. Within days, it was confirmed that Ben has advanced colon cancer which has spread to his liver, officially known as stage 4B metastatic colorectal cancer. His world changed overnight.

“We went from thinking it was nothing, to being told I had stage 4 cancer,” Ben told me. “I didn’t even know what that meant at the time. I just kept thinking that this couldn’t be happening.”

It wasn’t long before doctors laid out the grim prognosis of an average survival of two years. Chemotherapy began immediately and did keep the cancer from progressing, but it left Ben physically drained and struggling with challenging side effects,

Ben’s cancer carries a genetic mutation known as KRAS G12C. This was a mutation that was long considered undruggable, which means there were limited treatment options for it. Then last year a breakthrough treatment targeting this mutation was developed and fast-tracked through clinical trials for colorectal cancer and is now FDA approved.

Today, Ben is part of a cutting-edge clinical trial using that drug, known as adagrasib, in combination with two other immunotherapies. This trial is helping extend Ben’s life by stopping the progression of his cancer and it is giving him a better quality of life.

“Before the trial, I spent most of my time recovering from chemotherapy,” Ben told me. “I’d get treatment on Friday and feel awful until Tuesday or Wednesday. Now, I have my treatment on Wednesday and I’m back at work on Thursday. I didn’t even know it was possible to feel this good again.”

But Ben’s fight has a new and terrifying adversary: politics.

The War on Science Is a War on People Like Ben

According to a recent report by the U.S. Senate HELP Committee Minority Staff, the current administration has already terminated $13.5 billion in health funding and at least 1,660 grants have been canceled. The amount of money NIH has committed to research between January and March is down by $2.7 billion compared to the same period last year, which is a 35% drop. Cancer research alone has seen a 31% reduction in funding since January.

From the HELP report linked above

Cancer doesn’t discriminate by political affiliation, and neither does any other health or science issue. The people impacted by these policies span all walks of life. They are sons and daughters. Mothers and fathers. Aunts and uncles. Friends. Co-workers. Republicans. Democrats.

“I pay taxes too,” Ben told me. “Please don't take away my research funding.”

These cuts and policy decisions mean that the research that has led to treatments like Ben’s are at risk. His doctors have already warned them that without continued funding, the trial may end abruptly. And if that happens he will lose his last hope for more time and better quality of life.

While the medications Ben’s is currently on in this trial is just preventing progression, this is a major accomplishment. By slowing progression and extending his lifespan, there is hope other new treatments or options will come out before it is too late for Ben. Beyond this, Ben has shared that participating in this clinical trial is helping him leave a permanent impact.

“Participating in this clinical trial was a big decision for me to consider with potentially not being here in a year or two years or three years. Whatever it is, knowing that my life has been cut short more than I ever thought.” Ben said. “I wanted to be a part of something that could give chances to to have a better quality of life and to prolong someone's life. I wanted to be a part of that. I wanted to leave something behind, a legacy.”

I carried the impact of Ben’s story on me into every office I visited on the Hill. It helped remind me of why these efforts are important. Science cuts just aren’t abstract numbers or money saved. These are lives. These are people like Ben, who just want the chance to celebrate another birthday and leave a legacy of helping the next generation of patients.

These cuts are also impacting future scientists who may help discover the next cancer treatment.

These are friends you know who may have, or will have, cancer. These are everyday people like you, me, Beth and Ben whose lives are being harmed.

This Isn’t Just About the Future. It’s About Right Now.

Ben’s story is a powerful example of what happens when we invest in science. Just a year ago, one of the drugs keeping him alive wasn’t an option. Now it’s giving him more time, better quality of life, and hope for the future. This change and advancent can happen quick, but as I have mentioned before, science doesn’t run on hope alone. It needs consistent, sustained federal investment to make these things possible.

If these cuts continue, the pipeline that brought Ben the scientists, doctors and treatment he is on will be gone for every patient waiting for a breakthrough. For every family hoping for one more day.

“We were prepared to lose him to cancer,” Beth said “We were not prepared to lose him to politics.”

Two Science Haiku’s

In honor of the conversation I had with Beth and Ben I wrote the two haiku’s below:

On clinical trial patients:

Trials offer hope.

Participants leave their mark.

We must guard this gift.

On science funding:

Science saves lives

but it requires funding.

Cutting it kills.

Here is how you can help

Call Your Representatives. Urge them to fully fund the NIH and to reverse the policies and cuts happening to the scientific enterprise in the U.S. Visit 5Calls.org for quick scripts and contact info. Here is a reference for talking points. Remind them this is not partisan. Cancer and other illnesses don't care who you vote for. Science should be a bipartisan priority.

Share Ben’s Story. Stories change hearts and minds. Share this article. Share your own stories about why you care. Talk to your friends and family. Post on social media.

We are at a tipping point. The decisions being made in Washington, D.C., right now will decide whether we continue to lead the world in scientific advancement or whether we abandon patients like Ben when they need us most.

This isn’t just a fight for research. It’s a fight for human life and for the future.

Let’s make sure Ben has a chance to see his 38th birthday. And let’s make sure the patients who come after him have even better options than he did.

Photo by Alex Shute on Unsplash