Weighing Anecdotal Evidence Against the Studies

Larry Aiken took it upon himself to pull up sunken military equipment from the depths of a lagoon in Barrow, Alaska. Outfitted in the outdoor gear he’d purchased and working from a boat the community provided, each time he brought up a vehicle or a car battery or a barrel that once contained some mysterious substance he felt an injury to his soul. For many generations, his people used this lagoon to gather fish, birds and plants for food.

“I’m very concerned,” Aiken, an Inupiat Eskimo, said during a spring meeting of Alaska Natives looking to address contamination in their villages. “My people hunt from this lagoon.”

In 1963, an arctic storm sank about 18 ships in the Barrow lagoon. They had been loaded with 899,000 pounds of military equipment. At first, the military refused to salvage the wreckage, so members of the community were left to clean up the mess. Now the military provides small grants to assist this work, and to date Aiken estimates that about 10,000 pounds of material have been pulled out. He wonders if cancer and other illnesses popping up on the North Slope have been caused by contamination left by the wreckage. Across the state, other Alaska Natives wonder the same thing, and strongly suspect a link to cancer from contamination that is linked to actions and activities of either the military or other government or private entity.

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“Critical Tools for Medical Reporting”
– Ragnar Levi
“Helping Reporters Play the Medical Numbers Game”
– Lewis CopeA 30-year study from the Alaska Native Tumor Registry, funded by the National Cancer Institute, confirms cancer is the leading cause of death for Alaska Natives, who now have some of the highest mortality and incidence rates of this disease in the nation. But the registry does not provide overwhelming evidence of contamination-caused cancers. Instead, the leading culprit is tobacco: Lung cancer is responsible for 30 percent of Alaska Native cancer deaths, according to reports based on the registry. The second highest rates come from digestive cancers. Of that group, the highest is colorectal. The study’s authors suspect a low fruit and vegetable consumption and high alcohol use might be among the reasons.

Weighing the Evidence

Some of the pitfalls that Ragnar Levi and Lewis Cope suggest that reporters avoid while reporting on these medical stories have become tangible obstacles for me. As a reporter working on stories about Alaska Natives and cancer, I’m faced with weighing anecdotal evidence against medical investigations that don’t support what I see and hear. It’s hard to ignore the stories of so much sickness. It’s also hard to ignore the belief among a growing number of Alaska Natives that their illnesses are caused by something sinister and unnatural in the land and water of their communities. But it is hard to ignore the weight of data that contradict that belief.

I came to reporting this story because of Darlene Demientieff, a 37-year-old Athabascan wife and mother of two, who died of cervical cancer in 1997. She became one of many Alaska Natives I know who have had cancer or have died of cancer. When I started asking questions, I soon found myself overwhelmed with information but few answers. Many times native people from places scattered across Alaska have counted off to me the number of family members who’ve dealt with cancer. However, in many families, the cancers don’t exhibit any obvious pattern. For example, a mother might have experienced breast cancer, whereas her sibling or child might be dealing with lung, kidney, stomach or cervical cancer.

I knew early on that I couldn’t rely only on collecting the sad stories of families dealing with cancer. I would need to better understand the workings of public health agencies, the Alaska Native Tumor Registry, and state and federal studies. They are the official and authoritative sources that track the incidence of cancer. But I also knew I had to take concerns that Alaska Natives had about cancer seriously. I’d heard elders recount stories about never seeing the disease in their communities. (Tobacco was not used by Alaska Natives until Western culture made its way north.) Clearly, Alaska’s indigenous peoples are struggling with a changing lifestyle, but many of them still eat traditional foods as much as possible, especially those who live in remote communities. Alaska Native leaders have explained to me that with the loss of aspects of their traditional culture comes the loss of spirituality and connection to the land. These changes and disconnections contribute greatly to the deteriorating health of Alaska Native people.

Eyes and Ears of the Community

I don’t have a medical background, nor have I done much reporting on medical stories. I worked most recently as a business reporter for the Fairbanks Daily News-Miner, with a daily circulation of about 17,000 (21,000 on Sunday). Even though I might have begun work on this story without the skills I will need to fully report it, I have felt the responsibility to both report this story and tell it accurately. What keeps me chasing this story is my belief that people have a right to know what might be happening in their communities, especially when it involves health issues. Information is power, particularly for people who seemingly have little else. I take my role as a reporter seriously, and because of that I am the eyes and ears of the community on this story and the interpreter of information people might have a hard time understanding.

After I did several cancer stories, people began coming to me with alarming tales of sickness, making it impossible for me to not continue my investigation. That’s why I applied for and ultimately won the Alicia Patterson Journalism Fellowship, which will give me a year to further examine and write about aspects of this story.

I remember well what Seattle Times investigative reporter Byron V. Acohido told me when people asked him if he had an aviation background to help him pursue his Pulitzer Prize-winning stories about problems with Boeing 737’s rudder system. “No,” he said, “I’m a reporter.” It’s likely in my reporting that I will not entirely close the gap between anecdotal evidence and contrary data, but I can try to explain it and accept that that’s all I might be able to do, for now.

I can also wait and do more reporting on this story in the future. As reporters, what we learn now ought to be used to make us more alert to significant changes and enable us to report on them accurately when they occur. Meanwhile, public health officials, who are charged with developing programs to prevent illnesses and educate the public about the disease, will need to find ways to address the increasing disbelief that Alaska Natives appear to have in the reasons being offered for their cancers. How this situation is handled could well lead to more information and insights about the incidence of cancer among Alaska Natives.

There is a sense of urgency, too. According to the tumor registry study, high cancer rates among Alaska Natives are likely to continue. In the 1950’s, cancer was rare in natives. Now Alaska Natives face a 30 percent higher risk of dying from cancer than do U.S. whites, according to the most recent registry study. Yet the Indian Health Service, the federal agency that provides health care for American Indians and Alaska Natives, is underfunded by 40 percent, according to the Intercultural Cancer Council, a national tribal organization dedicated to addressing the causes of the disproportionate cancer burden of Native Americans and Alaska Natives.

In Barrow, Larry Aiken feels he is fighting against things bigger than his ability to conquer them. His father died of cancer. He was a man who never smoked and lived a traditional Inupiat Eskimo lifestyle. “My heart is so heavy toward the people dying of cancer,” he explained. “It’s so hard to talk about.” Perhaps the stories I report and the evidence I can bring to families like Aiken’s will give some relief by answering questions that right now seem unanswerable.

Diana Campbell is a 2003 Alicia Patterson Fellow who is spending her fellowship year investigating cancer among Alaska Natives. She is on leave as a reporter with the Fairbanks Daily News-Miner, and she is an Alaska Native.