Cancer Not Just a Disease of Richer Countries

Joanne Silberner covered health policy, global health and other health-related issues at NPR for 18 years. Now she’s a freelance public radio reporter and artist-in-residence at the University of Washington. When she discovered a “huge” misconception she had about cancer in the developing world, Silberner traveled to three countries – Uganda, Haiti and India – with a grant from the Pulitzer Center on Crisis Reporting to shed light on the subject through a series of stories for PRI’s The World. Here are excerpts from an interview with her this week that have been edited for brevity.

Q: You’ve said that many people believe that cancer is a disease of rich countries and older people, when in fact that is not the case. You even had that same misperception yourself.  Why?

A:I was at the Fred Hutchinson Cancer Research Center in Seattle, and I saw a poster up about cancer in developing countries.  I thought, “This is ridiculous.  Everybody is trying to get onto the developing country bandwagon. It’s HIV, TB and malaria, there, and people don’t live long enough to get cancer. Plus, they couldn’t afford the treatments anyway.”

I went to the symposium. After a day, I just wanted to kick myself. Cancer in the developing world hits young, hits hard and people die in big numbers. So then I figured, if I don’t know this, I’ll be a lot of other people didn’t know this, so maybe I should do some stories. I tell my students this all the time: where your misconceptions are, that’s where the stories are.  And my misconception was huge. 

Q: In light of your extensive reporting on cancer in the developing world, what was your first reaction to Angelina Jolie’s article in the New York Times about her preventive double mastectomy?

A:I think most women with breast cancer, as I’ve had, had the same reaction, “How incredibly brave.” With full descriptions, full disclosure, she said, “Here I am world as a woman who is looked upon as a great beauty and guess what, I changed my body around to confront the threat of cancer.” 

I was really relieved and happy to hear her talk about cancer in developing countries. She talked about how women all over the world should have access to care. And as much as I don’t consider myself an advocate, I consider myself a journalist, I have to agree with that one. The idea that women in other countries are dying of something that I’ve been treated for is upsetting. 

Q: How was it to report on these stories as a cancer survivor yourself?

A:Oh, it was hard. Not even just as a cancer survivor, but as an American with enough money in her pocket to take care of the people I was seeing in front of me. 

Q: Is preventive care for cancer accessible in the developing world?

A:Mostly no. It is possible and it is cheap, but no body is doing it. Preventive care is pretty much non-existent. Here and there you’ll see something. India, for example, is rolling out this big cervical cancer-screening program. Thailand has done the same. India is also looking to HPV vaccination to protect against cervical cancer. It’s been a little controversial, but they are trying to get online with that. And India is one of those interesting countries where it is both rich and poor, so it can do things that purely poor countries cannot.  But, overall, prevention is rare in developing countries. 

Q: Many developing country health care systems are already struggling without proper infrastructure all while dealing with infectious diseases like malaria, tuberculosis and HIV. Did you find some programs that were successfully able to treat cancer? 

A:Not enough. Uganda is just starting. They’ve got a very interesting project that is going on with the Fred Hutchinson.  About 10 years ago, Uganda had only one oncologist. They’ve now got at least nine. If the funding continues, I think it is going to work. They are trying to be a center of excellence in the middle of Africa.  And there’s not much in that area. In fact, it is my understanding that Rwanda has zero oncologists. So that’s a tough one.

Haiti has an interesting program that is being done by Paul Farmer and Partners in Health. They have a really good primary care center with a long history in Haiti, but they can’t afford to bring an oncologist in. An internist runs the program, and once a week she calls Harvard after sending them the records of the people she wants to discuss. The internist and the local oncology nurse sit and talk to the Dana-Farber Cancer Institute at Harvard and find out what is the best approach -- chart by chart.  How sustainable is that? I don’t know. You can’t always call Harvard. Given how common cancer is, this isn’t going to work all around the world. 

Q: How do cancer survival rates in the developing world compare with those of richer countries?

A:They are awful. At the Uganda Cancer Institute not too many years ago, if you walked in there with cancer you had a 10 percent chance of being alive at the end of the year. U.S. cancer survival rates are much better than that. Things are getting better in Uganda, but again that is one program in the middle of an awfully big continent. 

The developing world doesn’t have national registries like we have in the U.S. where you can look over time. Here and there where a university has taken interest, there will be a hospital cancer registry, like Uganda. There’s also the Institute for Health Metrics and Evaluation and GLOBOCAN collecting data. But trends are difficult to determine. It is hard to compare numbers in a country 10 years ago when there was no screening and now when there is a little screening in a country. But overall the comparison to developed countries is awful. 

Q: How do poverty and lack of education exacerbate people’s struggle with cancer in the developing world?

A:Most people with cancer don’t come in at all. In Uganda, there are a lot of tribal languages where there is no word for cancer.  They don’t have a concept of cancer as a disease. The ones who do come in, come in when they are in incredible pain, some with tumors that have popped through the skin. I saw that more times than I care to remember. They don’t appreciate it as a single disease or as a treatable disease. They think, “We’ll I hit my head a few weeks ago and that’s why I have this swelling on my leg.” Or they think that the witch doctor or a neighbor wished them ill and it caused this swelling. So why would you go to the doctor for that?

If they do think it is cancer, they believe it is a death sentence, so they avoid it like you would avoid unpleasant things until it is too late. So then they come in and they are in stage 3 or stage 4, and even in the U.S. they couldn’t be saved. It is a self-perpetuating problem because no one will go in early because they think are going to die.

There’s also a bit of social stigma against cancer. You’ll be ostracized. Women worry their husbands will leave them if their breasts get removed. And they are right on a large part of that. It’s not like the U.S. where if you get breast cancer everyone puts on a pink shirt and marches in a parade. There, they hide it, and husbands do leave wives if they get it.

The poverty issue is that they can’t afford it. In most, places cancer care costs money and people have to pay out of pocket.  

Q: Are there some parallels here in the U.S. with poverty and lack of education?

A:There is a challenge with poverty and lack of education in the U.S., but I think the problem here is more of access. I think people here have a general idea of cancer. They have a general idea that some people get treated. There are a lot of charitable programs in this country. The issue is getting to those charitable programs - not everyone knows to find them or how to get into them. 

And on the poverty issue, cancer itself impoverishes people. There was just a study out last week showing that if you have cancer you are two and a half times more likely to file for bankruptcy. Poverty might not be an issue at the beginning of your treatment, but it may be an issue at the end of your treatment because for some people cancer makes them poorer – people who aren’t fully insured or whose insurance doesn’t pay for full services. 

Q: You did radio and print stories about how a research center in Seattle and a cancer ward in Uganda partnered to improve the availability of treatment for African children with cancer.  What kind of reader/listener feedback did you get?   

A: My favorite response was, “Wow. I didn’t know there was cancer in the developing world.” These are people who came to it with the same idea I did that cancer can’t be a big deal because they have so many other things to worry about. So, I was happy that they came to see what I came to see, which is cancer is a big deal and it does hit hard. 

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