In Uganda, "Cancer Is Death"

Breast Cancer Awareness Month in the U.S. is a fanfare of pink paraphernalia. But in developing nations like Uganda, cancer is stigmatized to the point that families often lie about their loved one's cause of death. Host Michel Martin speaks with journalist Joanne Silberner about her award-winning reporting on cancer around the world.

Copyright © 2013 NPR. For personal, noncommercial use only. See Terms of Use. For other uses, prior permission required.

MICHEL MARTIN, HOST:

I'm Michel Martin and this is TELL ME MORE from NPR News. Later, we will hear from singer-songwriter John Legend. He'll talk about his new album and new marriage and whatever else is on his mind. But first, we want to talk about a growing health threat in Africa. Now we're used to hearing about malaria, even HIV/AIDS when it comes to health concerns of Africa. But it might surprise you to know that cancer is growing as a leading cause of death.

But the disease continues to take a backseat as a public health priority there. To help us understand more, we've turned to Joanne Silberner. Joanne was an NPR reporter for many years. She's now a freelance journalist specializing in global health issues. Her recent reporting on cancer in the developing world won several awards, including one for the National Academy of Sciences. Joanne, thank you so much for joining us. Welcome back, I should say.

JOANNE SILBERNER: Thank you very much.

MARTIN: Why is cancer increasing as a cause of death? Is it diet? Is it atmosphere? Is it that people are living longer so cancers that would not have had time to develop in an earlier area now are?

SILBERNER: Yes, yes and yes. You know, people are living longer, but there are some cancers, including breast cancer, that hit people younger in places like Africa than they do here. There's some obesity link. You know, being a little bit obese can make you more prone to breast cancer. So as people are doing better financially, they put themselves at a little bit of a higher risk. There are also some cancers that are actually caused by viruses and other microorganisms, like hepatitis B causes liver cancer. And so those cancers - they were going up. They're going down now because there are vaccines against some of these cancers. So it's a combination of reasons.

MARTIN: And is there a genetic link - which we also should mention - because it is true that in the U.S., for example, African-American women are less likely to get breast cancer, but more likely to die from it. So is there any genetic...

SILBERNER: And they get it younger.

MARTIN: And get it younger. So is there either a genetic link, or is it an access to healthcare link?

SILBERNER: Nobody's really sure that - it's a very interesting area of study, and people are studying it now. I don't think there's any conclusions yet. But it's an important thing to look into.

MARTIN: So you're a breast cancer survivor yourself. Can you talk a little bit about maybe an experience you had or an experience of - a woman in the United States might have compared to the experience of a woman in Uganda?

SILBERNER: Well, I have to say, if you're going to have breast cancer, the place to have it is in the United States - and also to be fully insured. So I was in the U.S. I was fully insured. I got excellent care. I got excellent follow-up. I get a top-to-bottom exam every year. When I was in the hospital getting a mastectomy, I got fresh salmon for dinner. And there's also an - an enormous amount of social support here. I mean, you become an unwilling or a willing hero. You go outside and people are marching up and down with pink shirts and pink flags, and you're a hero, you know, if you're a survivor here. Now when I went to Uganda, I met a woman there named Gertrude Nakigudde, and I spent my afternoon talking with her about what happened to her and what happened to me. And her story was much, much different. Now Gertrude is an accountant by training. She is what you'd call middle-class. She's educated, but she didn't know what happened to her right away. She had a lump. She didn't know what to do. It was really tough on her.

MARTIN: This is your conversation with Gertrude. Here it is.

(SOUNDBITE OF ARCHIVAL RECORDING)

GERTRUDE NAKIGUDDE: When I heard that it was cancer, the feeling was terrible. I knew it was death. Here, people believe cancer is an untreatable disease - that once you have cancer, you can't survive.

MARTIN: How is it that Gertrude knew what to do?

SILBERNER: She didn't. You know, she had the lump. She looked around. She went to different places, and she went to Mulago Hospital and to the Uganda Cancer Institute. When she got there, they knew what they were doing. But it took her a long time to find it. And Gertrude looked, and that's an important differentiation. Many women in Uganda don't look at all. They feel the lump, and if they know what that is, they say to themselves - and many women said this to me - they said, why should I get this checked out? If I go in, they're going to cut my breast off. If they cut my breast off, my husband's going to leave me, and then I'm going to die anyway. And it's actually a self-fulfilling prophecy. That is what happens because they go in so late that even if they were in the U.S. they couldn't be saved.

MARTIN: Is it a lack of knowledge about cancer, or are there other reasons that people don't seek medical help?

SILBERNER: It's a lack of knowledge, certainly. It's a fear that, if it is cancer, they're going to be in a lot of trouble. And there's also very few places to go for the help, or certainly very few places that know what they're doing.

MARTIN: You know, it used to be in this country - I know that in my parents generation, they didn't even speak about cancer. I mean, they used all these euphemisms like the big C and things like that. And it was always spoken about in these hushed tones, which I never even really think about until later, now that, as you've mentioned earlier, that cancer has become the kind of thing that people are active around, that they advocate around, are very public about. So is there still that sense of cancer is not to be spoken about - a stigma?

SILBERNER: Absolutely. There's a very strong stigma. I mean, in this country - I don't know whether you remember this - but the obituaries would say someone died after a long illness. They wouldn't even say cancer. So in Uganda, it's a little bit different. There's a shunning. There's a fear among people who have at least a little understanding of it. There's a fear that if they marry somebody with cancer, that they'll get infected or the children will have problems.

So stigma is just a really huge problem. In fact, my translator in Uganda, she kept translating - when I was talking to folks who only spoke tribal languages - my translator would answer me by saying the swellings instead of saying cancer. And she kept saying the swellings. And I finally said to her, why do keep saying the swellings when we're talking about cancer? And she looked at me and she said, because in many of these languages, there's not even a word for it. It's not recognized as a single - you know, what cancer is is it's an uncontrolled growth of cells. She said it's not recognized. People think they've bumped their head or they did something bad. They don't recognize it as a disease.

MARTIN: In fact, you talked to Gertrude about that - the woman whom we were speaking about earlier - and I'll just play a short clip from that conversation.

(SOUNDBITE OF ARCHIVAL RECORDING)

NAKIGUDDE: There is a lot of stigma because they don't want the neighbors to know that so-and-so died of cancer. And traditionally, people still think it's a curse in the family or somebody was bewitched. So people feel if you have it, member of the family will have caught the cancer. Probably, your daughters or sons will not marry because people will be scared about that family.

SILBERNER: Yeah, and what Gertrude's decided to do with her life is she's now working with a group called the Uganda Women's Cancer Support Organization, and they're trying to reduce the stigma by talking out loud about it, which really takes a lot of courage on her part.

MARTIN: Are there any hopeful signs here? Are we seeing perhaps any indicators that things are moving in a different direction, as we have seen previously with activism and advocacy around HIV/AID and also in, you know, malaria, too, and a number of other things. Are we seeing any hopeful signs?

SILBERNER: In Uganda, yes. Although, you know, it's small. The Fred Hutchinson Cancer Research Center is working on a project with the Uganda Cancer Institute. Together they are building a new research lab, and the government is giving them a new hospital which is really big news. Uganda's going to go back to where it once was before Idi Amin in terms of being a leader in cancer care in Africa. But there are still countries that have no oncologists in the entire country. There's still countries where there's just no care at all. And even in Uganda, you have to get yourself to Kampala, and that's not necessarily an easy thing to do. You know, people don't have the money to go back and forth. They can't leave their kids.

Globally, there's a lot more interest around. There's a number of groups from the U.S. - American Cancer Society, The Susan G. Komen Foundation, American Society of Clinical Oncology - they all have projects going on now in less developed countries. And there are international groups who are getting involved, as well. There's a big movement now to promote the noncommunicable diseases. I mean, we all know HIV, TB, and malaria - these are communicable diseases. But there are noncommunicable diseases - not just cancer, but also diabetes, high blood pressure, pulmonary disease - that have really big numbers attached to them. Now I don't want to say this is a war. Nobody wants to take money away from the other guy. I think the cancer people, though, want some additional - additional money and some attention to what's going on.

MARTIN: Joanne Silberner reports on global health issues. She just received the Keck Futures Initiative Award from the National Academy of Sciences for her work on cancer in the developing world and she joined us from member station KUOW in Seattle. Joanne, congratulations on the award. Thank you so much for speaking with us.

SILBERNER: Well, thank you.

Copyright © 2013 NPR. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to NPR. This transcript is provided for personal, noncommercial use only, pursuant to our Terms of Use. Any other use requires NPR's prior permission. Visit our permissions page for further information.

NPR transcripts are created on a rush deadline by a contractor for NPR, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of NPR's programming is the audio.

Comments

 

Please keep your community civil. All comments must follow the NPR.org Community rules and terms of use, and will be moderated prior to posting. NPR reserves the right to use the comments we receive, in whole or in part, and to use the commenter's name and location, in any medium. See also the Terms of Use, Privacy Policy and Community FAQ.

Support comes from: