As a nurse at a respected hospital pierced my skin with a needle not long ago, she remarked that the instructions for my blood draw were "unusual." I explained that I was there for a study.
"I'm just another lab rat," I joked.
With an edge, she said, "As long as you know that's what you are."
"Oh, I was kidding," I said, raising my eyebrows. "I'm proud to take part in it."
Unimpressed, she made it clear that she saw me as a patsy for Big Pharma.
Nor was she the first. I have Autosomal Dominant Polycystic Kidney Disease, or ADPKD. A cousin who shares my genetic disease—and who might therefore appreciate my willingness to test a treatment that could help her, too—used to make the same joke whenever I mentioned an earlier trial: "Have you grown a third nipple?"
(For the record: No. For a treatment that added many healthy years to my life, though, would not a third nipple be a small price to pay?)
When I tried to encourage the members of a Facebook group devoted to my disease to sign up for a study in which I had safely participated, the group admins blocked my post. They said the group was solely for "support."
"Wouldn't a new treatment offer wonderful support?" I asked. "Without enough participants, we won't get one."
The admins did not reply.
If a nurse at a good hospital, a college-educated relative who shares my disease, and the leaders of a group focused on that disease see only danger in medical trials, then we're all in trouble. That misguided view delays medical treatment every bit as much as, if less visibly than, an SUV failing to yield to a speeding ambulance.
That's a particular shame today, when so many new treatments are tantalizingly close. The messenger RNA research by Katalin Karikó and Drew Weissman, which won first a Lasker Award and then a Nobel Prize, has opened up thrilling opportunities.
Koch Institute Director Matthew Vander Heiden reported in August that there are "more than a dozen ongoing clinical trials of mRNA cancer vaccines." Scientists are testing mRNA on many other afflictions, too, including malaria, influenza, and herpes.
The faster people volunteer for trials, the sooner great treatments will reach those most in need.
Yet a recent study found that "younger adults, males, minorities, and people with lower education, less clinical trial knowledge ... were less likely to participate" in clinical trials. Each of those groups is missing an opportunity to contribute to treatments that could improve and extend their own lives.
When we volunteer for a medical trial, is Big Pharma using us? Or are we using Big Pharma? The answer, of course, is: "Yes."
Without enough human volunteers, pharma companies won't get the Food and Drug Administration to approve their medicines, therefore can't sell them as medicines, and consequently have no hope of earning back their investments.
You may have heard that time is money. In this case, time is also health. Patient recruitment is slow and expensive. It costs more to recruit volunteers from a frightened public.
The longer it takes to attract human subjects, the longer the wait for patients who need that treatment. Some will die waiting.
Without Pharma's willingness to invest as much as $2 billion per new medication—enduring the myriad failures that occur between an idea in the lab and an effective new treatment, and recruiting patients to test them along the way—people like me will suffer and die as early as our ancestors did.
Pharma needs us, and we need Pharma.
A drug trial transformed my life, and led to the existence of at least three other lives.
Because the disease I inherited had taken the lives of many of my relatives in their mid-40s—my cousin Mike was just 35—I doubted it would be ethical for me to marry or have children. I was likely to leave a young widow and young, fatherless children, who would grow up dreading the same fate to which they had seen me succumb.
As I participated in a promising trial, though, I realized that my days might not be so short. Today I'm happily married with three lovely daughters. If one or all of them turn out to have inherited my disease, my having volunteered for studies will improve their futures. That means a lot to me.
Are there risks to medical trials? Of course. But the doctors monitored us closely, and the risk of waiting for my health to deteriorate was far greater. Fear can make you brave.
If you can join a trial, please do so—not just for yourself, but for those you love, and for those you may never meet.
And if you can't or simply don't want to join one, but you meet someone who has: Please don't view them as a chump. They're doing you a favor. If you're feeling generous, you might even thank them.
Bill Brazell, who is currently volunteering for his third medication trial, is a happily married father of three girls, a member of the Millburn, NJ Environmental Commission, and a strategic public relations consultant with WIT Strategy.
All views expressed are the author's own.
Do you have a unique experience or personal story to share? Email the My Turn team at myturn@newsweek.com.
Uncommon Knowledge
Newsweek is committed to challenging conventional wisdom and finding connections in the search for common ground.
Newsweek is committed to challenging conventional wisdom and finding connections in the search for common ground.
About the writer
Bill Brazell, who is currently volunteering for his third medication trial, is a happily married father of three girls, a ... Read more
