The other day I met Roger Gruss from near Seattle. He’s 54 and has been fighting a subtype of Sarcoma, a rare cancer to begin with. There are only 150 in the U.S. diagnosed with this cancer type each year. So, not surprisingly, his cancer was first misdiagnosed and then later became quite interesting to university doctors who had hardly ever seen it before.
Its rarity also means there are no great treatments. But fortunately there are doctors who have made it the subject of research. Roger found out about this by searching on the Internet and consulting with his doctors for their opinion on what he was finding. Working together, Roger first enrolled in one trial, and then later a second and a third. The good news is he is now doing better, although certainly not cured.
Roger understands that, in his case, the “standard of care” isn’t very good and by participating in trials he might have 1) the chance of getting “tomorrow’s medicine today” and 2) he can help science move forward to benefit others.
Chances are you will not be diagnosed with Roger’s rare cancer. But you will have other “Rogers” to thank when you need advanced medicine for what ailment does strike you. They helped find answers that led to approved treatments.
So what if you are offered participation in a trial. Is it risky? Would you be a “guinea pig?” Should you turn your back on it and leave being a pioneer to others? I say NO! If you don’t step up who will? Not just for you but for your children and your children’s children?
The tragedy is many clinical trials for promising new medicines languish because Americans, especially, are reluctant to enroll. That’s why you hear ads on the radio trying to attract you to trials. The story behind all this is that too often medical research is slowed or stymied. Millions of dollars are squandered and people remain sick or die because of the delay. That’s the truth and we all share the blame.
In another blog I’ll comment on how we are also letting people die by not being organ donors. But for today let’s make an agreement to consider a trial as a treatment option – even seek them out – the next time treatment seems necessary. It may make a big difference for you and it could very well make a big difference for others – even your own kin.
Andrew