By: Sarah Miretti Cassidy – Director of External Affairs at Cancer Hope Network
This post has been entered in the Patients Have Power Writing Contest run by Clara Health. It is a tribute to the alchemy of patients’ necessity, bravery and hope that make medical breakthroughs possible. The contest, like so much of Clara’s work, is focused on raising awareness of and access to clinical trials. Helping patients access the power of breakthrough research is a critical need.
From Galileo peering through his telescope (about the same magnification as a decent pair of binoculars, according to the guide at Kitt’s Peak National Observatory), or the Wright brothers launching themselves skyward, there’s magic in science, hope in discovery. Today, the fear of polio doesn’t haunt every mother and measles no longer kill millions each year. Cancer patients are living longer than ever after diagnosis.
Behind the headlines, there are people. Dedicated researchers searching for answers, advocacy groups fundraising to look for cures. And there are clinical trial participants.
“I encourage the patients I talk with to hold on to hope,” says CHN Support Volunteer Ann, a bladder cancer survivor and caregiver. “Don’t lose faith. They’re coming out with new research, new information and new drugs every day.” That hope is becoming a reality because of patients participating in trials. Lung cancer survivor Ellen feels fortunate to have been diagnosed now. “We’ve made more headway in the past five years than we’ve made in the previous 20.” Ellen and Ann are not alone in their passion for the hope research provides. Cancer Hope Network’s 400+ Support Volunteers have participated in clinical trials at more than twice the national rate. (Learn more about clinical trials by visiting our friends at Clara Health.
Clinicaltrials.gov tells us more than 350,000 trials are active today. Some will succeed, and some will head back to the lab for further study.Thanks to researchers and patients in search of discovery’s magic, many of those trials will chart a path to new gold standards of treatment.
As with Edison’s “10,000 ways that don’t work,” some trials end without reaching their intended endpoint. But there’s magic along the way. Support Volunteer David, a glioblastoma survivor, participated in a double-blind study. When the study ended, he discovered he’d been in the placebo group – but that the organic carrier (included to mimic the side effects of the active drug) may have been helpful in keeping him alive. There are always reasons not to explore, to wait until the magic is tested and accessible. For scientists, discovery sometimes means challenging long-held beliefs (see also: Galileo). For pioneers venturing into the great unknown, there was certain hardship. For patients facing cancer, there are reasons too – including not knowing about available trials and fear.
But each of those reasons is balanced against possibilities. For Support Volunteer Paul, it was the possibility of more time spent with loved ones. His clinical trial lowered his blast score enough to make him a candidate for a life-saving transplant to treat his Acute Myeloid Leukemia and allowed him to attend his 55th college class reunion. Support Volunteer Hank began taking experimental treatments when his deep-seated melanoma metastasized. That treatment helped him “hold on as along as possible so they could develop something that could work” over the long term. Today, he’s actively volunteering to help others.
For others, the magic is in the possibility of helping others – like colon cancer survivor Support Volunteer Michael. “The empathetic nature and persuasiveness of my oncologist convinced me to take part in a study. I wasn’t promised it would be the greatest thing since sliced bread, but I’d be helping others.” Breast cancer survivor and caregiver Support Volunteer Linda agrees. “The studies are wonderful. You’re saying ‘yes, I’d be happy to be a guinea pig’ because it might help someone else. I would do the study again.”
Support Volunteer Kent’s participation in a clinical trial saw him through aggressive prostate cancer – and the launch of the drug whose efficacy he’d been helping to test. At CHN, we’re staunch believers that patients and their loved ones must be champions of their own health. For some patients, that may mean participation in a clinical trial. Our volunteers stand ready to help as possible participants navigate the decision-making process and treatment (Request a Talking About Clinical Trials match HERE or visit our friends at Clara Health to learn more about trials that may be right for you.)
We are indebted to the brave women and men who have ventured into the unknown – and created magic. Thank you.
Cancer Hope Network provides free one-on-one peer support to adult cancer patients and their loved ones.
Our 400+ survivor Support Volunteers have faced more than 80 types of cancer. (More than 98% of the cancers that will be diagnosed this year.) Together with our caregiver volunteers, they provide support from diagnosis, through treatment and into survivorship. All volunteer and client matches are overseen by a team of nursing/social work and certified tele-health professionals.
About the author
Sarah Miretti Cassidy is the Director of External Affairs for Cancer Hope Network. She has spent more than 20 years in nonprofit work – as an ally and advocate, marshalling volunteers and resources to change the world. She was a cancer caregiver and is trained as a hospice and Support Volunteer.