Trials, Lisa Bonchek Adams and Bill and Emma Keller
Emma Keller and Bill Keller both recently posted op ed pieces about Lisa Bonchek Adams – for the Guardian and NYT. Adams is a mom living with Stage 4 breast cancer, who has been tweeting and blogging about it – writing beautifully about things like trials and surgical procedures, and getting lots of followers as a result. Both op eds were crass and offensive – some of the reasons why have been discussed on The Nation, The Atlantic, Medium and on Twitter, and the Guardian article has been taken down “pending investigation”. One unpleasant aspect of Bill Keller’s piece that hasn’t had enough comment, though, is his passive aggressive snark about Adams’ choice to participate in clinical trials. Bill Keller seems to view volunteering for trials – something which can have really altruistic effects – as something it is negative for Adams to write about. However, we should be grateful to those who volunteer to participate in trials – future patients can and do benefit from their altruism. I wouldn’t be here to write this if it wasn’t for participants in past trials in different conditions.
Bill Keller’s article states that
There is always the prospect of another research trial to excite [Adams’] hopes
as if this is intrinsically a bad thing. Without knowing the detail of the trials Adams participated in, Bill Keller writes that
Whether or not this excellent care has added months or years to [Adams’] life, as she clearly believes, is a medical judgment, and her doctors, bound by privacy rules, won’t say. Most trials of new drugs aim to determine safety and calibrate dosages, and make no promise of slowing the disease in the participants.
Bill Keller appears to be complaining that Adams
has been an eager research subject…Adams has been a cheerleader for cancer research in general and Memorial Sloan-Kettering in particular.
Clearly, many patients choose not to participate in clinical trials – as is absolutely their right, and a decision that should very much be respected. I don’t know what decisions I might make myself if I became seriously ill in future and am given the option of trial participation. However, those who do participate in trials are doing a public good – what is learnt on these trials can improve or prolong the lives of others, whether or not it helps the trial participants. Indeed, I’d almost certainly have died several times by now if it hadn’t been for volunteers for previous clinical trials (on various different diseases); the same can be said of a number of people I care about. Snarking about a cancer patient’s use of social media is pretty low in itself, but writing in a way that makes trial participation seem like a bad thing for patients to do or to write about is particularly unpleasant.
Additional Conflict of Interest: I volunteered to participate in one trial myself, which stood almost no chance of benefiting me personally but will hopefully help the NHS and future patients a little (in case that seems particularly noble, it also involved pretty low risk to me and very little hassle!) I’m not going to say what the trial was – ironically, given the context, doing so would tell the internet more than I want to about my previous health…