My Three Wishes for Clinical Research

The answers to human illness are emerging in research labs around the world. Casey Quinlan shares her three wishes for speeding up the process.

“One never notices what has been done; one can only see what remains to be done.” ~ Marie Curie

I am the first to admit that I’m not the most patient of humans. I don’t like waiting around for anything. This might be an aftereffect of a couple of decades in television production, which involves a whole lot of waiting around, punctuated by flurries of activity accomplished at what seems like fast-forward 32X.

My patience with science is a little more forgiving than my patience while waiting for my coffee at Starbucks (since I drink venti dark roast, no room, I wonder why I have to wait at all), I track science news with a combination of hope and disappointment. Hope, because every new discovery offers the opportunity to end, or limit, the impact of a disease; disappointment, because too many stories with breathless “big breakthrough!” headlines have “in mice” in the fifth or sixth paragraph.

My Three Wishes for Research
I’m not looking to fast-forward science, though. What I am working hard to do is to widen public support for science, including public participation, to help accelerate the opportunities for discovery. To that end, here are my Three Wishes:

  1. Funding. What’s the status on the Cancer Moonshot announced with much fanfare in January of 2016? And where’s the moonshot for diseases like Parkinson’s, diabetes, and Alzheimer’s? Funding for science, even at the most basic level, has fallen at the federal level to less than 50% of the total science budget for the first time in the post-WWII era. Public funding for science is important, but it seems to me that the average American doesn’t feel particularly connected to scientific research. Until, that is, they find themselves on the receiving end of a diagnosis that changes their life. We need to do a better job, as a society, of showing people how important science is to their daily lives, in order to build support for public money at least matching private cash spent in search of answers to human disease. Not that there’s anything wrong with private or corporate funding for scientific research. The risk is that if only private money funds the discovery, the price tag on the resulting treatment is likely to be astronomical. That’s become an established pattern in recent years on drugs like Solvadi (for hepatitis C) and CAR-T therapy (for types of leukemia).
  2. Education. This is a multi-armed wish, in that I want better K-12 science education, in addition to more postsecondary and graduate programs available to all students who want to learn, not just those who can attend a top university. Public education is also critical to widening support for science and research, which will help get Wish #1 filled, too. The more you know about science, the more you see how it impacts every part of human life. When you see how much hope science, and research, can deliver in understanding and curing human disease, you find yourself happy to both help pay for it (taxes) and to participate in it, either as trial participants or as citizen scientists forming the “farm team” to the major leagues at universities and the Centers for Disease Control and the National Institutes of Health.
  3. Participation. Scientific research into human health requires human participation. “In mice” only gets a scientist so far, discovering new disease processes and possible new treatments for disease, but when you want to end, or manage, a human illness, you need to run human trials. For those trials, you need participants. In research parlance, those human collaborators are called “trial subjects.” However, if you talk to any research scientist that works on clinical trials, you’ll see, and hear, the deep respect and gratitude those scientists have for the people who are subjects in their research.

If you’ve been paying attention, you’ll see that my Three Wishes require no genie, or fairy godmother, to be granted. All it’ll take is for enough of us to start working on making my Three Wishes real.

So … let’s get to work!

 

 

Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.

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