What fun to talk with Jennie Erin Smith, the author of Valley of Forgetting: Alzheimer’s Families And The Search For A Cure, which was Curious Reading Club’s book of the month for January. It’s a really fascinating book about a major research trial in Colombia which focused on a huge group of people who carry a particular gene linked to early-onset Alzheimer’s.

We chatted about all manner of things, including the complexity (or not!) of her reporting, the hubris and honesty of the people in her story, writing stories about “great men” … and how her view of the subject changed along the way.

One of the most interesting areas of our conversation, and the book, is wrestling with the ethics of trials by Western drug companies in less wealthy populations. If the drug works, what guarantees are there that the people on the trial can still get access to the medicine they’ve been given? And who can fight for those people?

The only reason they were allowed to do this trial in Colombia is because they’ve done enough research to say that this drug could reasonably be distributed in Colombia: Colombia has the capacity to market and distribute this drug. Well, yeah, but to whom, right?

I’m in Medellin right now and there’s awesome clinics and awesome hospitals here that serve the middle classes and up. But for the type of people who are participating in this study, most of them are on public insurance…

So the idea was that this was ethical, that we could go forward with this because this drug could be distributed in Colombia and therefore we’re not experimenting on people who could not reasonably benefit from this therapy. I challenged that, and the pharma companies want to do more and more of that. They do a lot of work in Brazil. They do a lot of work overseas. And I think it’s really imperative on people in these countries, and the regulators, to say “Hey, what’s your plan for this? Are you going to market this here? What price do you want to put on it? Is this really feasible?” I think more people need to ask that question.

I think the interview is worth your time.

(And if you’re interested in signing up for Curious Reading Club, it’s easy to join.)