Interview: Barak Goodman of “Cancer: The Emperor of All Maladies”

Director Barak Goodman talked to me about his superb series for PBS, Cancer: The Emperor of All Maladies, now available on DVD. The series is produced by Ken Burns, based on the book by book by Siddhartha Mukherjee.

Everybody who worked on the show had some direct or very close experience with cancer. How does that affect the way the show is made?

It certainly made it very personal for all of us. In my case it was my grandmother. When she died when I was in my early 20’s. I didn’t even know what she had died of. My parents thought it was better not to actually tell me. Even then, which wasn’t that long ago, it shows how much stigma there was still around this word “cancer” and this whole set of diseases. And I think that’s persisted to some degree up to today.  When we started this project we did so knowing that somebody in the own production team was going to be diagnosed or have someone very close to them diagnosed with cancer during the project.  Sure enough there were three separate episodes during the two years we were working on this film.  Edward Herman, our narrator, received a diagnosis and or died from the disease so it was very personal from the very beginning.

The series really comes at cancer in several different ways.  There is a historical part, there are the individual stories, there is a science story. How do you keep that presented in an accessible way?

This is a bold experiment in filmmaking. We were not sure at all if these three strands that you just identified would work together. I’m not aware of it ever having being really tried on this scale before. Essentially we have been working in historical film which Ken Burns and I are very familiar with doing.  We have pieces following patients through their journeys, being with them every day, letting the cameras roll.  Then we have a very heavily scientific story in which the we are trying to explain to people and what we found to our delight was that each strand kind of resonated with the other and sort of vibrated with the other and you have almost a kind of music coming out as a result.

And when you see for example a contemporary story of Terrence deciding whether or not to roll their child in a clinical trial agonizing over the pluses and minuses and all the unknowns, we get a deep insight into what the parents must have been going through the 1950s when the first multidrug clinical trials were happening at the National Cancer Institute and children were literally being almost sacrificed for science, for the knowledge that was coming out of these trials to with very little benefits to them. Those parents must have faced an even more intense decision to make about whether to go forward with this. So the only way to understand that historical time is to see it with your own eyes, happening right now.

What were some of the challenges that you had to convey the scientific material and did you use animation? Did you do microscopic photography? 

All of the above and many more things. That was in some way the most challenging part of the film itself. In the first place we had to satisfy ourselves that we understood it. So my litmus test is always, if I can understand it simply and clearly I can get it across to our viewers. So it was really about not pretending that we understood something that we didn’t understand, really asking these world-class researchers and Nobel prize-winning scientists to try to talk as if they were talking to their grandchildren. And they were remarkably successful at that.

They were able to simplify these concepts so that it really does become comprehensible and then we availed ourselves of some really, really beautiful animation. And we kind of had a worldwide search to find an animator who could do this and we actually ended up working with a woman who lives about three blocks away from me in Brooklyn. And she just happened to be really an artist not so much kind of trying to literally show what is going on but almost create a world that the viewers can kind of sink into and that way really the science became much more accessible to people, much more interesting to people.

One of the things that I think is frustrating to non-medical people is that it seems that every day there is a headline that something either does or does not cause cancer or reversing what we were told last time.  What is the reason for that and what is the best way to understand it?

I think that it’s born of frustration. I mean it is still the case that some half of all cancers have no known cause at all and maybe, it’s very possible are the result simply of random copying errors inside our always dividing cells. I think this is partly especially for Americans who want an identifiable cause, something that we can stop and so we won’t ever get this disease in the first place. And while certainly true that there probably are carcinogens that we probably haven’t yet identified certainly many of these so-called causes whether it’s power lines or cell phones or sugar or whatever it is, really there’s no serious scientific evidence showing that these are carcinogenic.

The number of known carcinogens once you get past tobacco, obesity, sunlight, some viruses, there are very few that have been identified solidly. I think that is just tremendously frustrating for people so there’s that vacuum into which is poured all sorts of half-baked theories that I think do a real disservice. People running around not knowing what to eat or what to drink or where to stand on where to live and it is really, really a problem and I think one of the most important and promising areas of cancer research are in kind of honing our understanding of what is preventable and what is not preventable.

You show in the series how just a few decades ago the word “cancer” was spoken in whispers, if at all.  Now Angelina Jolie writes about her surgery in the newspaper.  How have we changed in the way that we talk about cancer?

I think we have made a lot of progress in that area. Cancer isn’t quite the taboo subject it was even 30 years ago when my grandmother died. And we owe a debt to people like Angelina Jolie or Betty Ford or Nancy Reagan or people who have publicly shared their particular stories. And I think in the case of Angelina Jolie there are some people who criticize her because she has taken these what seems like drastic steps for perhaps very little medical reason but that is a very dangerous thing to do, is to criticize another person’s choices. The service that she’s giving us is that she’s willing to talk about it and she’s willing to say, “I have a gene that may well give rise to cancer and this is what I’m going to do personally to try to prevent that from happening. You don’t have to follow my lead but this is one option.” And I think it is less what she has chosen to do than the fact that she has discussed it at all openly that is a real achievement and service she has given us.

What do you think is the most promising avenue that you have discovered for either prevention or treatment in the course of working on the series?

Just since this book came out five years ago, there is a whole new sort of frontier in how cancer research has developed. Immunotherapy is setting the cancer world on fire. It’s not just us, our decision to focus on it, it’s really universally thought of as being the most exciting new area of cancer research. And the reason for that is that for centuries people wondered why the human immune system couldn’t, didn’t fight cancer the way it fought every other infection. Why can’t our immune system help us? So (a), it does help us we probably have cancer all the time in our bodies and the immune system is part of the defense mechanisms that are fighting the cancer but more importantly even there are very specific reasons that the immune system as it turns out doesn’t fight cancer mostly because it doesn’t see it, it doesn’t recognize it as ‘other’ and that’s partly because cancer is so close to our cells, it really is our cells.

So what’s so exciting about this is that they have devised ways to basically unblind the immune system, to take the restraints off the immune system and that means a possibly non-toxic therapy, a therapy against which the cancer cannot form a resistance. All the defense mechanisms that cancer has are rendered useless when the immune system is unleashed against it. This isn’t even hypothetical, there is a billion-dollar industry already, and there are approved drugs out there that are working remarkably well against certain types of cancer. And every month it seems there is a new clinical trial for a different kind of cancer. You rarely see scientists in this field jumping up and down and getting giddy and childishly giggling but you do see that when you talk to them about immunotherapy. With all the caveats about where we’ve been before and had all these promising sort of moments before it in history cancer research there is still a lot of optimism about this new field.