Soapbox Science

When science becomes personal: a role for personal life in advocacy

StephaniPagePhotoStephani Page is a PhD candidate at The University of North Carolina at Chapel Hill in the Department of Biochemistry & Biophysics.  She is a member of the Bourret/Silversmith Lab in the Department of Microbiology & Immunology.  

When a patient is diagnosed with a form of cancer which has the potential to significantly shorten his lifespan, his life takes on a different meaning.   He looks at himself in the mirror, small and frail, and decides to do what it takes to make it through this trial.  Not too long ago, this was my father.  I am the only scientist in my family and, as such, I know that cancer patients, even those who have treatment options, face difficult battles ahead.  Chemotherapy drugs, while potentially adding years to a prognosis, can ravage the body.  Research often focuses on finding new chemotherapy drugs, making current drugs more effective, and minimizing the side effects.

I am a PhD candidate in the Department of Biochemistry & Biophysics at the University of North Carolina at Chapel Hill.  One of the labs in my department actually assisted in the development of a chemotherapy drug prescribed for my father’s pancreatic cancer.  For many years I had struggled to explain to my family (made up of homemakers, lawyers, career military, teachers, nurses, etc.) what I do as a scientist and why what scientists do is important.  Suddenly, my family needed no further explanation.

A few weeks after my father has received news that his stage-3 pancreatic cancer was responding to treatment, I joined the American Society for Biochemistry and Molecular Biology (ASBMB) for one of its Capitol Hill Days.  I was looking for an opportunity to explore science policy through advocacy.   At the time, I did not know how the treatment would turn out for my father and by the time I sat face to face with the first Congressperson, I had talked myself out of the emotions that I had been feeling about the good news.

Instead, the data supporting the need to maintain the levels of federal funding for science research was lodged in my brain.  I knew numbers and figures on jobs, innovations, and boosts to local economies.  I was ready to describe my work and the other kinds of work happening at my institution.  I was also ready to describe the loss that my institution was already suffering due to funding cuts.

However, when it came to my time to talk, my mind went blank.  I took a deep breath hoping everything would come back to me.  When I could remember nothing, I looked my Congressman straight in the eye, smiled and began to tell him about how my father had an aggressive form of cancer, how the cancer had been responsive to treatment, and how people I knew had researched the drug.   I told him about my father being a man of faith who grew up in rural NC – two facts which I knew meant that my father has what it takes to continue his battle.

So although I didn’t walk in that day thinking that I would have anything to talk about other than numbers, I soon learned that I had an experience which provided a common ground. Most people have been touched by cancer.  There are cancer survivors in Congress.  I sat down with people with whom I would have never expected to find that common ground: conservatives, liberals, libertarians, moderates, Senators, Representatives, legislative assistants. Regardless of ideology, this common ground allowed us to have a real conversation about federal funding for scientific research.  I walked away from the experience with a sense of accomplishment.

A few months later, I went with my father to his hometown for a family gathering. Three generations of family members, ranging in careers and education, were sitting around talking about the importance of science funding: the benefits to healthcare in rural communities, the jobs that could be created, the education opportunities for their kids (grandkids, and great grandkids), and, of course, the health of people like my father.

Eventually, the conversation turned to my day on Capitol Hill.  I told them how surprised I was that the people I met were more interested in my personal experiences and the health of my father than in the data I had studied on science funding.  I was also surprised that they wanted to know who I am as a scientist and how the funding of science research impacts my training, my career goals, and my personal life as someone who has a family member battling a deadly disease.

“As scientists, we have the perspective of what our work means to us and the vision of what we will continue to work toward.”

Scientists have a voice that needs to be heard.  Most have experiences with illnesses in their families, whilst also having an awareness of the time and work that go into understanding diseases and developing treatments and cures.  As scientists, we have the perspective of what our work means to us and the vision of what we will continue to work toward.  Our stories are encompassing of many important aspects of the need for federal funding of scientific research.  Our stories need to be told, not only to save our research and careers, but to also save and improve the lives of those we care about.


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    Shonagh MacRae said:

    The personal connection to science is what is often missing from the science narrative. I love hearing stories about the passion behind science and as much as we like to think that policy is directed by facts, it’s often directed by emotion and story.

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    Tom Hennessy said:

    Dr. Jerome Sullivan used to work at Chapel Hill. If you look at his hypothesis, elevated iron levels, you may gain some insight as to why so many people get cancer. His work, thirty years later, has not been recognised for its importance.
    “Is Iron A Killer”

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    Steven Earl SALMONY said:

    “What’s wrong? Everybody on Earth is in denial about our biggest problem … population growth. Too many new babies, a net of 75 million a year. And we’re all closet deniers — leaders, investors, billionaires, the 99%, everybody. Yes, even Bill McKibben’s global team. The U.N.’s 2,000 scientists know overpopulation is Earth’s only real problem.
    Get it? Earth has only one real problem, there’s the one main dependent variable in the scientific equation. But we refuse to focus on it. So, yes, even scientists are science deniers too. They know population growth is the killer issue, but are avoiding it too. Thousands of scientists have brilliant technical solutions to reducing the impact of global warming. But avoid the root cause. They keep solving the dependent variables in their climate-change science equation. But population growth is the cause of the Earth’s problem, not the result.” Paul Farrell

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