Sometimes I hear people say “I don’t want to be a guinea pig”, “They are not going to experiment on me!”, or similar sentiments regarding medical trials.
On the one hand, a nurse I know who was diagnosed with stage IV cancer de novo, has been in five clinical trials. She said, “ I know what stage IV means, so given that, I thought why not push science forward for the next generation- maybe even my own daughter?” But what about clinical trials for people who have rare diseases which are not fatal, or at least not imminently so? After all, life is ultimately fatal. Why should someone consider a trial? What are the true pros and cons?
The Potential Cons:
- Trials take time and consistency: you have to be prepared for long appointments and a lot of them.
- You may have to travel: there are limited sites for every trial. Many trials provide some financial assistance for the travel, but travel in itself can be difficult and time consuming if you don’t feel well. If the person participating cannot travel alone, then two people are facing the inconvenience of travel.
- Some trials, like some treatments, may then preclude you from a future trial or treatment.
- Some trials may not be offering anything very unique, but is rather just an “extended release” formula. For instance of a medication you are already taking, that then requires a lot of “poking” and “testing”.
- There may be undiscovered safety issues with the treatment, even if it is a phase III trial. Everyone is different and as a medication is used in larger and larger populations, individuals with different backgrounds may experience adverse reactions. However, individuals in clinical trials are very carefully monitored and have access to health professionals very quickly.
The Potential Pros:
- You have long and frequent appointments where you are monitored very carefully and get very good care, often from an academic medical center. You often develop a close relationship with a clinical trial nurse, who can answer your questions and provide lots of support.
- You may “get to travel”- one patient I knew just loved this! His trial days were like “mini vacations” for him and his wife. They loved staying in the hotel by the medical center. “Everything was lovely, the softest sheets we’d ever slept on, better cable and internet than we have at home, and such lovely people to talk to at the medical center. Each time we went, it was like a visit to family .”
- You may have early access to a new and effective treatment which can make a world of difference in a disease. You may avoid progressive damage, or start feeling better right away.
- All currently approved treatments may not be well tolerated or effective for you, and the trial drug may then offer an alternative.
- You may get a very, very costly medication with no charge and no co-pay. Perhaps you have wanted this medication but your insurance would not cover it. This may be a way to access it. This can be a very good option for those with limited insurance.
- Some trials, after an initial double blind phase, may allow everyone access to the medication.
- Participation gives you an active role in contributing to medical research, and this can give you a great sense of satisfaction. You are helping mankind. And if this disease runs in your family, you may also be helping your progeny. The disease you have may still not be well understood, and your participation may help move this understanding to a new level.
The Always:
All federally supported clinical trials are reviewed by an independent board of physicians, statisticians and others to see if it is being conducted ethically, and if the risks seem reasonable for the potential benefit. But not all trials are federally funded, so ask if the study you are considering has been approved by an Institutional Review Board (IRB).
