Life as an Extreme Sport

Pain Management & Pharma: Yeah, It’s Personal

It’s possible that you’ve heard about the Senate Investigation into pain treatment/control advocacy groups and the makers of narcotic medications; just the announcement of the investigation has had significant effect: The American Pain Foundation immediately dissolved, and the American Journal of Bioethics suddenly realized they had an awful lot of conflicts-of-interest that they had ‘accidentally’ not disclosed. (For a closer look at that, check out William Heisel’s coverage, here and here.)

Today, Deborah Blum posted a link to a 14-years later follow-up of the patients who served as testimonial voices for Perdue Pharma in a video promoting OxyContin (and, according to a doctor who was a paid specialist for Purdue Pharma at the time, to prescribe more opioids period). Of the seven patients, two were addicted to and abusing opioids when they died, a third became addicted, three maintain everything is fine, and the final refused to comment. Not a fantastic track record, especially given what we now know about Perdue Pharma lying about the addictive nature of OxyContin. The company was hit with large fines for their creative promotions and “misbranding” of OxyContin in 2007, but as the above links regarding the extensive financial support of pain management advocacy groups, doctors, and ethicists show, combined with the ProPublic exposé that started the ball rolling, the fines didn’t amount to much discouragement.

The thing is, I realize that a lot of people are outraged about this on the sheer principle of it: the people who are supposed to take care of the patient are making decisions based on money and incentives rather than what’s best for the patient. I share that principled outrage, of course, but for me, it’s also terribly personal.

I’m not shy about the fact that I have a chronic pain issue, although most of the writing I’ve done about that have been on now-defunct blogs.Mostly the Women’s Bioethics Blog, but I may have mentioned it a time or two on Daniel Goldberg’s Medical Humanities blog. I’m lucky enough that I had very good care when I was first diagnosed with having these issues, in part because my doctor’s partner suffered from the same thing. And my background is such that I’m not exactly the kind of patient who is going to be controlled by a doctor, or just do what I’m told.My anesthesiologist referred to me as his favorite contrarian, and he loved to throw new residents at me, just to see how they dealt with a medically literate patient. Typically? Not well. When I ended up in an area of the country not known for believing in the validity of chronic pain, I was able to advocate for myself enough to get the therapy/medication I needed at the time, and these days I’m doing relatively well with a non-prescription regimen.Of course, the irony there is that I’m one of those patients pharma would love to trumpet – once we found the correct dose of medications, I didn’t need increases and had no dependency issues. Stopping the opioids I was on was as simple as shrugging and not refilling the prescription one day.

So I’m a patient as well as someone somewhat qualified to talk in more academic and professional terms on this; I too could be a late night commercial. But it goes even further than that, because I knew some of the folks who are at least implicated in the things in that first paragraph, and that just horrifies me, because it’s not abstract. I knew them, they knew me. There was conversation about the struggle to be treated, to be taken seriously; long discussions held over months about stigma and hidden illness and my direct experiences with the power of naming as well as the frustrations of cure-focused medicine. As not all of them were even interested in chronic pain when I knew them, there’s this weird feeling of having my discussions used to further completely unethical behavior for the benefit of pharma – and at the possible expense of people like me, if not actually me.

It creates a situation where it’s difficult to remain neutral or objective; it’s personal because it affects me-as-patient, but also because there’s a deeper sense of trust betrayed, and the outraged sense (despite already existing proof to the contrary) of “shouldn’t they have cared that it was dangerous to a real live person they knew and not just theory?”

I suppose that’s because we have this pervasive idea in society right now that if you know someone who is Other – someone who is gay, or disabled, or otherwise not Standard Normative White Model – you are more likely to sympathize with and advocate for that Other. And this? All of this? Just flies right in the face of that idea.