Who do you admire most – an organ donor, a blood donor or a clinical trial volunteer?
Research* tells us that the vast majority of people would say the organ donor, then the blood donor, but few would say they admire the clinical trial volunteer the most. That’s possibly due to a misunderstanding about clinical trials and the fact that until we find ourselves with a serious illness and looking to medical research for hope, we rarely consider how new treatments are developed and what it takes to get them approved and into the market.
At a family lunch a few weeks ago I told my family I had signed up for a clinical trial to test an ebola vaccine as a healthy volunteer. My sister-in-law was horrified. She implored me not to do it. “You’re a mother. You have responsibilities. You don’t need to do this.”
Common belief paints clinical trial volunteers as guinea pigs with no rights – and nothing could be further from the truth. Jamie, a fellow healthy volunteer has participated in a number of clinical trials over the past two and a half years. He agrees that the idea of participating in a clinical trial may be confronting for family and friends. “They sometimes think it’s dangerous and harmful, that it might cause irreversible damage.”
Signing up for a clinical trial means putting volunteers through a series of health checks and a detailed consent process. “I know I can pull out at any time – no questions asked”, said Jamie. “I always ask loads of questions, we are told about any adverse events from previous studies. There is a duty of care ensuring you are well looked after during and after the trial.” Clinical trials aren’t all about injections, drugs and painful interventions. Healthy volunteers can contribute in many different ways.
Adrienne a mother of two boys enrolled her son Max in a clinical trial when he was 3 years old. He’s now twelve and is still involved in the trial. The trial requires him to have his height, weight, cognitive progress and a range of other skills recorded every two years in mapping a range of public health interventions associated with child and maternal health centres. “We will be doing this for another two years until he’s fifteen. We’re happy to help. I’m really curious to know what the results of the study are and if the interventions have delivered a significant benefit.” Clinical trials are an essential part of the development of new interventions, medicines and diagnostics that may improve your health care, alleviate the symptoms of your disease or condition or improve the health care of others.
Athina is 48 years old with Stage 4 melanoma. “I was so happy when my oncologist suggested I was eligible to participate in a trial of a new radiation treatment,” she said. “It means I am able to access the latest in treatment for melanoma and the cost to me is zero. I have had two treatments to date and now moving onto a drug therapy that has only just come off a Phase III (final stage) clinical trial. I’m very aware that others before me have participated in a trial for this drug to be available to me now.” Participating in a clinical trial can give people who are suffering from serious diseases a feeling of being able to give back, giving them control when it seems like everything is out of their control. “I’d love to know that others who come after me with Melanoma may benefit from my contribution. I don’t want others to have to go through what I’m going through,” Athina offered. “I also appreciate the tremendous hard work that medical research has done to get these new drugs and treatments to this stage. I feel like I’m doing my bit.” *Research America, Public Opinion Poll 2013