I sent this message out recently when I learned that my friend Sara had died of metastatic colon cancer. Like so many others, Sara fought the hard fight: driving her cancer into remission for nearly seven years before a recurrence got the upper hand.
In the 18 months before her death, we started visiting every other Tuesday night before chemo the next day. Together we researched dozens of options – with clinical trials at the top of the list. Narrowing it down to eight to 10 potential studies, she then started aggressively pursuing these opportunities. She was driven to find something that would extend her life with some quality, yet equally interested in contributing her experience to the greater body of clinical research on colon cancer.
Somewhat ironically, the oncology researchers determined that though she might be eligible now, she should wait until things got a bit worse. By the time she got to this point, her priorities had shifted. This was the time to spend traveling to favorite places, visiting family and friends, squeezing every moment out of the time she had left.
My friend’s son died of neuroblastoma at 7.
My aunt is battling adenocarcinoma of the face.
Another friend’s cancer has metastacized to her brain.
Today, five of my friends and neighbors are in treatment for breast cancer.
Shockingly, sadly, this is not just my story, but the story of people around the world. It’s no surprise then that a recent survey by the Pharmaceutical Research and Manufacturers Association (PhRMA) shows 86 percent of Americans believe developing cures for more forms of cancer should be one of the top national health priorities, followed by developing effective treatments for heart disease (78 percent) and more intensive medical care for seniors (76 percent). These findings are the result of a new annual “From Hope to Cures” survey, which explores Americans’ attitudes on personal health and medical concerns.
At BBK, our social media and mobile app development teams are working with patient advocacy groups to help close the gap between Americans’ clinical research priorities and their opportunities to advance their own contributions to this effort. There has been good progress as the PhRMA survey demonstrates. Today, 65 percent of Americans are aware of the role and importance of clinical research studies. Although only 20 percent report having personal experience with clinical trials, that’s nearly double the number BBK reported in the Will & Why Survey of 2004.
Like Sara, not every eligible patient will end up in a clinical study, but we all benefit from the participation of each individual who makes the effort.