Volunteers and Healthcare
Do you ever wonder what it takes to create new medical knowledge? Behind every advance or development in healthcare treatment there is normally a lot of research that takes place. Then there are the trials and further studies to make sure these new medical improvements actually do what the research and development in the laboratories suggests will happen. But even more significant than the research process are the people who volunteer to be a part of the testing.
Clinical trials are nothing new. Experimenting on humans to find new ways to treat disease has been around for millennia but trials comparing one approach to another under a controlled environment using human subjects didn’t take place until 1747. Dr. James Lind, a physician from Scotland, was in the British navy and interested in hygiene, and it was during one lengthy voyage that he conducted his first trial looking at how to prevent and cure scurvy among the sailors on his ship. He split a small number of scurvy stricken sailors into groups and applied different treatments and then recorded which one worked best. Dr. Lind is recognized as the first physician to conduct a controlled clinical trial and it’s noteworthy that his work also focused on wellness and not just curing illness.
Let’s fast forward over two centuries later to the year I was born. Another significant clinical trial took place that year and I have a personal connection with that one – my oldest sister Donna was one of the 1.8 million children across the country who were enrolled in national tests of the first polio vaccine.
While sorting through papers from our parents’ home, she even found her Polio Pioneer card from 1954, securing her place in clinical trial history. Thanks to Dr. Jonas Salk and the children who took part in the testing of this vaccine through one of the first double blind trials (half of the children got the vaccine while the others got a placebo), poliomyelitis is no longer creating disability in children. This trial and the subsequent polio vaccine is so effective that the World Health Organization estimates polio will be eradicated from Earth by 2018. Polio is a clear example of the power of trials and then the widespread use of vaccines to fight infectious diseases.
Jump forward about 40 years to 1993, and we reach the time when the first MS disease modifying therapy drug was approved after volunteers stepped up and participated in the clinical trials for Betaseron. The introduction of disease modifying therapy drugs would not take place if we didn’t have people willing to volunteer for trials to study the long term effects of these treatments. The treatment options for multiple sclerosis began with this one lone drug, but has since been expanded to include over a dozen drug options and that number continues to grow, thanks to volunteers who are willing to participate in clinical trials. Without willing volunteers, the drugs most of us depend on would not have made it out of the laboratory.
Not everyone, though, can help with the drug trials but would still like to help to advance treatments for multiple sclerosis. I want to ask each of you to consider making your own contribution to research and join us at iConquerMS™, a patient led, patient driven MS data collection research project. The process is simple – enroll, complete some basic surveys and then be willing to answer further surveys about your life with MS. There are no drugs to take and no blood to collect – we just want your information and your ideas. Members of iConquerMS™ also have the opportunity to submit their own research questions for consideration. All of this is done with the help of some of the best data scientists in the world who help keep your personal identity and health information protected and confidential.
Whether it’s treating scurvy, polio or MS … none of these drug treatment options would be understood and available to us if it weren’t for the trials, studies and the selfless volunteers. I’m thankful to those sailors, my sister and the people affected by MS who all helped to advance medical science in one way or another. I am also thankful to the almost 3,000 people affected by MS who have already joined me at iConquerMS™ and are helping to find answers to our questions about living with multiple sclerosis. If you haven’t already, please visit iConquerMS.org and join us in this important work.
Wishing you well,
How well do people around you understand MS?