Sunday, July 4, 2010

The missing link in cancer treatment

There are thousands of clinical trials ongoing in the US and around the world each year but why do so few Americans participate in them? One school of thought is that it is the oncologists who are not suggesting the trials to their patients as they are unaware of them. I think that this is an area where there is room for growth. If oncologists are unaware of currently ongoing clinical trials they will not suggest them simply because they have no knowledge.

Another area which I could help in enrolling in trials is to make the process of finding a suitable trial made more user friendly. I was lucky that before my diagnosis I worked briefly for a company which provided software for managing the data that was captured in a clinical trial so I had spent some time, while healthy and not stressed over a cancer diagnosis, learning about the process. I understood the different phases and how to find out about new and ongoing trials. But if you aren't a medical professional decoding the lists available on line at can be a daunting task.

Finally finding a fitting clinical trial is made even more difficult by needing to fit in the narrow guidelines of a trial. I was actually offered two clinical trials by my oncologist but then was told I didn't fit the criteria. One of them had requirements along the lines of stage II breast cancer with no lymph node involvement within six weeks of lumpectomy and had not yet begun treatment. I had a tiny lymph node involvement that eliminated me from that one. The other one I think I was eliminated from because I had already had one cancer.

I am treated at a hospital with an affiliation with a medical school and who conducts a fair number of clinical trials just outside Boston which is a medical hub. I can imagine that in less urban areas or ones with fewer medical schools and teaching hospitals, there would be very few local clinical trials and less focus on enrolling patients.

How can the system be changed to enroll more patients in these valuable tools? Educate our oncologists and make the system more user friendly so patients can find the trials on their own? This is another area maybe where health care reform could integrate better with clinical trials.


WhiteStone said...

Yes, it's difficult to navigate the trials. The bad thing about trials is that sometimes a portion of the patients receive a placebo. You know that up front and hope you are getting the "real" thing, but in my case I got the placebo for six months (along with two standard chemo drugs). The two did their work but the trial drug would have added to their efficacy. Now I'm taking all three but I regret not getting it right off the bat. Not all trials are blind, however, so I would not hesitate to do another long as it was not blind and as long as I knew I was not getting a placebo.

Caroline said...

I was told that clinical trials offer the current standard of treatment vs. the standard plus additional medications so you are always getting at least the current standard.