Canadians just like you choose to participate in clinical trials for different reasons. You can read below about Deedee and Maya and her family and their experiences and thoughts on clinical trials.
For many years, Deedee endured a life of pain and debilitation because of rheumatoid arthritis (RA). Chronic inflammation in her finger joints eroded the cartilage that made motion smooth and pain-free, leaving her finger joints bone on bone. She resolved needing at least 2 hours to get ready each morning and taking many different types of medicines that did not seem to be doing her much good. When Deedee moved to a new province, she and her new rheumatologist didn’t quite ‘click,’ so she made a choice to answer an ad in the local newspaper about participating in a clinical trial for a new RA drug. Deedee figured she had nothing to lose.
Deedee’s decision to join a clinical trial changed her life. Within 6 months a dramatic change in her RA symptoms – her inflamed joints had gone from 27 to only 11, her morning stiffness and pain had decreased significantly and it no longer took her hours to get ready for the day. She was more mobile and had more energy than she had in a long time.
She says that she received “excellent care” for the two years she was in the clinical trial – her clinical trial nurse was a source of information and readily available when she had a question, and the clinical trial rheumatologist became, and remains her rheumatologist, nearly 10 years later. As part of her clinical trial experience, Deedee had to fill out paperwork and go in for regular medication infusions and tests (more frequent at the beginning, and less frequent as time went on), however she feels this time commitment was not overbearing and that the benefits she has gained from being in a clinical trial far outweighed any risks she took.
Deedee’s take home message about clinical trials is that she is grateful for her experience and for the care she received. While she acknowledges that there are risks, she encourages you to “not be afraid of taking that risk – you have to weigh this against what the disease [RA] is going to do to you.” She realized once she went in to the clinical trial that “I wasn’t going to end up in a wheelchair,” and for her that was well worth any risk.
Imagine being the parent of a four-year old girl who has been complaining of aches and pains (as best she can) for a few months. You probably assume that once the doctor figures out the problem, things will be resolved shortly. Instead consider that your daughter is diagnosed with stage 4 neuroblastoma, the third most common pediatric cancer, and is sent to a major Canadian pediatric hospital for care. What thoughts are racing through your mind and what feelings do you have?
This was no imagined scenario for Kirby and Indira in the spring of 2010. They began to live this reality with their precious daughter, Maya, at the centre of this all. Instead of being told that there was a simple and effective treatment for Maya, they were provided with some options for consideration but no clear or guaranteed outcomes. They were told that children in Maya’s position have less than a 40% chance of survival (reference). Over the next two years, Kirby and Indira moved heaven and earth to save their daughter. Maya underwent major surgery, numerous rounds of chemotherapy, two bone marrow transplants, and suffered numerous complications along the way. Kirby and Indira became tireless advocates for their daughter and enrolled her in three clinical trials in different locations in Canada and the US.
Today Maya continues to recover, is back in school after a year and a half, and is a constant source of joy in her parents’ lives. Kirby says that one of the best parts of his day is hearing Maya’s belly laugh echo through their house. Kirby and Indira know that Maya’s participation in clinical trials saved her life and that many families who are not as fortunate as they are. Kirby respectfully recites the names of many children with whom Maya underwent treatment and who have since passed. Knowing that their family has beaten the odds make these parents passionate about the healthcare system, treatment options, and clinical trials. They believe it is key for people to understand how to access clinical trials and how to become their own advocates.