Has the leukemia changed what you want to happen in breast cancer research?
It makes me more in a hurry and more impatient with the status quo. We've been doing this breast cancer advocacy work for over 20 years. I think we achieved awareness and we've raised a load of money, but we really haven't made a major dent in the disease. Research should be finding the cause, not the cure. The cure implies you're going to get it, and then you're going to do some horrible [procedures] and live with the consequences. Why can't we not get it in the first place?
I went to the American Assn. of Cancer Researchers [meeting] last year, and a woman got up to talk about the HPV vaccine, half the audience walked out.
Because that's not interesting to these scientists. They want to get the Nobel Prize — their goal is different. [Vaccines] are done, they're boring. Public health issues that might have a more immediate effect are not funded and not pursued and are not sexy.
There's more than one kind of breast cancer, and there's been speculation that some of them are influenced by things like diet and exercise and stress.
We focus a lot on cancer cells. We all have cancer cells in us. [The question is] the environment for them to grow, the neighborhood. If you clean up the neighborhood, you can actually keep the cancer cells dormant.
It sounds like the "broken windows" theory of policing.
Exactly. It's the broken windows theory of medicine. We see studies saying exercise decreases breast cancer recurrence. Losing weight, stress reduction — that's the neighborhood.
What do you think of the Susan G. Komen Foundation controversy, when it pulled funding for breast cancer screenings from Planned Parenthood?
These things sometimes happen when you get big and lose touch a little bit with your constituency. The credible thing is how they recover, and that's what everybody's watching right now.
Does it bother you that the word "boobies" has been used for breast cancer awareness?
It's generational. Younger people react differently.
What I do worry about is that we've become so aware that people are so afraid of getting breast cancer, more than is warranted. We went from one extreme almost to the other. We need to refocus. Awareness, we've done that. We can check it off. To spend money on having the NFL wear pink or lighting buildings in pink — I don't think that's the wisest use of money anymore. Now it's actually doing something about it.
You're marshaling women through social media to become one big case study.
To go back to my idea that we're all patients and in this together, we have the Army of Women now over 300,000 women who've signed up to hear about research studies. And researchers can come to us with their study and we can e-blast it to everybody in the army. It's a way of crowd-sourcing research — matching volunteer study subjects, with and without breast cancer, with researchers. The bigger the study, the more it becomes self-correcting. Researchers are amazed at how eagerly women are signing up for these things. We also have healthofwomen.org.
Women say, "My friend had chemotherapy — why wouldn't I do this?" Most know someone who's been through this. My goal was to move more research out of the lab and the rats and Petri dishes and more to women. If the problem was curing rats, we'd have done it a long time ago.
And what about you?
Leukemia is pretty aggressive; I don't think about it in that way. I really think that it's a reminder that we have a finite term. Being raised a good Catholic girl, now an Episcopalian, I was raised to make the world a better place. I've got to do that.
Follow Patt Morrison on Twitter @pattmlatimes
This interview was edited and excerpted from a taped transcript. An archive of Morrison's interviews can be found at latimes.com/pattasks.