AACR 2014

Impact of culture, sociology and psychology on cancer and the role of AORTIC

Dr Jimmie Holland - Memorial Sloan Kettering Cancer Center, New York, USA

Could you tell us a little about your work surrounding cancer and psychology?

I started the first mental health services at Memorial Sloan Kettering in 1977 when there were no mental health services in any cancer centre in the world, as a matter of fact. My background is psychiatry but my interest has always been how psychologically healthy people face catastrophic illness, catastrophic problems in their life. I happen to have met Dr James Holland and he was working in the fascinating area of cancer research in which the psychological part of how people dealt with cancer really had not been explored, in part because the stigma was so great that people weren’t given their diagnosis. So around the mid-seventies that began to change, at least in this country and most of the Western world; people were told their diagnosis, cancer became a little less frightening. So we’ve been able since that time to study how people respond, have come to test new interventions to help them, medications, talk therapies.

So when Jim began to work with AORTIC I was very interested in the impact of culture – how do people in different cultures deal with cancer, how do they cope? What we found in Africa is that it’s still a pretty primitive idea about cancer because there’s so much… they’re ignorant about cancer and when you don’t have knowledge you tend to believe things that aren’t true. For example, I’ve just been dealing with a study that was done in Kenya showing how children with cancer are treated and so very often the family and the grandparents and the community were saying the child is bewitched, somebody has laid a spell on her. So that meant you have to go to the traditional healer and get some kind of potion so that they get rid of the fix on the child. But the idea of going and putting the child in the hospital is expensive, they don’t have the money. So one runs immediately into the need for education because we didn’t know much about cancer either as a public and today we know a lot and the fear goes away as you get a little better understanding of it.

So I’ve been able to have a little subgroup within AORTIC interested in these psychological, social, cultural issues. Very important, one of the things that’s happening there is people who have had cancer who have some social status are now willing to talk about it. Just like we’ve had Reach to Recovery, which is a big international effort of women who have had breast cancer helping other women, that’s really taken off. I see the advocates as being a big, big group who are going to teach and get people to move in the direction of being proactive to get other people to get treated. It’s happening, we see things changing very fast. I work with a wonderful psychologist, a woman from Nigeria, from Ibadan, and she got a little grant through AORTIC to study traditional healers. How could we understand better their role and how could we get them to refer patients who were treatable? As it is now they often will tell a patient, ‘I’m going to cure you, don’t worry,’ and then when it goes sour and the patient is clearly not doing well then they refer to the Western doctor and it’s too late. So she’s done some interviewing of the patients, why did you go, interviewing of the traditional healers, how they feel about it. They have their own organisations and they’re very open to collaboration. So it can’t be adversarial because people are very spiritual and they’re very religious and that kind of healing, traditional, is very much a part of them. Religious way beyond the levels of what we see in our world.

So it’s fascinating to look at these issues and to look at how the social issues really change the ability to get patients in, to get treated, to help them to stay with the treatment, deal with the side effects. One of the aspects I’ve worked with also is palliative care because people do come in so late they can’t be cured. The palliative care is improving there too with hospice units in several countries. However, it’s still very hard to get morphine and to get drugs in. So there are countries that have nothing but aspirin to treat pain. So there’s an enormous need for input in the palliative care, better treatment of people who are dying. Again, survivors are now talking about it and getting active themselves and we’re hoping is the study Jim did of getting people in earlier, a little bit more infrastructure, a little bit more help for the healthcare system. Basically that’s what it needs. And again making things good enough in Africa that young people don’t all leave and leave nobody behind to do the… We need the smart people staying there, basically.

When’s the next meeting?

The next meeting is in 2015 in Marrakesh in Morocco and we’re expecting that that will be a very big meeting and we’re hoping we’ll be able to combine our psychosocial work with advocacy and begin to get a nidus of people who begin to change the cultural attitudes and deal with the stigma, a big, big issue. So it’s exciting and I’ve been privileged to be part of it.