I knew there were going to be a lot of hard things about losing Mom to cancer: holidays and birthdays and events like my sister graduating from medical school. This was almost a given, in those panicked moments after hearing the diagnosis and knowing what it meant, that it was a matter of when and not if. I didn’t realize quite how pervasive it was going to be, though, or that it would create such a strange position to be in every time I read about a new treatment for lung cancer, or I read through clinicaltrials.gov for work and see something being tested, or hear about new drug approvals. Each time, I have that brief flash: this existed five years ago. This may have saved Mom.
Early on in treatment, a couple of colleagues pulled me aside and I got one of those lectures. The one that offered whatever help was possible, but – because they were bioethicists – the one that said we should go with established treatment protocols and avoid the clinical trials, especially if it would mean moving Mom out of her home and to somewhere strange. Comfort and palliation were a huge focus, and it’s something I still appreciate, because it did give me a bit of an external rock to lean on when we started getting the “helpful” suggestions. You know, the ones that ranged from legit clinical trials in another state to peach pit essence therapy in Mexico.
And when your mother is dying, you want hope. You will claw desperately for hope, even if it’s in a coffee bean or weed.
So I understand. I understand better than a lot of people when there are complaints about how slowly regulatory agencies move, and that requirements of animal testing slows things down. And I have the education to know that just because a drug works in one animal model doesn’t mean it will be successful in humans. But those regulations are also put in place to protect people, and hearing that researchers in Canada are complaining about stem cell trial regulations does not generate a patient response. In fact, I think my exact words were “you would assume someone who had made it through medical school and become a trial PI would have more patience than a toddler.”
But what really stood out to me was this:
It probably would have delayed the field by another 10 years,said the neurosurgeon. When you think about a condition as serious and life-threatening and damaging as spinal cord injury, is that a reasonable bar, or is that setting the bar at a level that is not appropriate?
Well, personally? I want that bar set high. I want to know that every possible precaution has been taken to make sure that what is being given to the public is safe. Yes, my mother died in part because the bar is set so high on testing novel drug therapies, and she didn’t have access to drugs that are certainly out there and potentially could have saved her life. But I also know that she died from cancer, and not from greed.
And I think that appeal to emotion made by that neurosurgeon is really what irritates me.1 Because that’s getting dangerously close to what the fraud-y stem cell clinics do, and the alternatural therapies – they offer hope and appeal to that emotional “let us skip all the things necessary to prove this is both safe and effective, and instead just jump right to miracles!” When someone advocates stepping outside an established scientific process, it needs to be for a reason that is stronger than “I don’t want to wait.”