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Stories save lives

NPCC uses creative models to spread cancer awareness

SEATTLE - Countless cancer prevention organizations are campaigning to spread awareness on a disease that the American Cancer Society says will take more than 550,000 lives this year and is the No. 2 killer of American Indians.

In order to reach Alaska Native and American Indian populations, the nonprofit group Native People for Cancer Control utilizes creative measures to provide cancer education within an eight-state region that includes Alaska, Washington, Oregon, Idaho, Montana, Wyoming, and North and South Dakota.

After all, cancer is the No. 1 killer of Alaska Natives and No. 2 killer of American Indians, making education and access to care imperative in order to lower those numbers, said NPCC Director Brenda Manuelito.

NPCC is based on the University of Washington campus, an arm of the Center for Clinical and Epidemiological Research. Dr. Dedra Buchwald utilized her grant-writing talents and genuine interest in Native health care to help launch NPCC in 2006.

Manuelito, Dine;, said the lag time between diagnosis and the start of treatment tops the reasons why cancer is a leading cause of death among Native people. She added that many Natives, especially those in rural areas, lack access to clinical trials.

A grant from the National Cancer Institute helped found the organization. Manuelito said the staff of six employees, including students, wanted to create culturally sensitive material to reach all Native age groups about all forms of cancer.

NPCC Research Coordinator Steve Charles, Haida/Tlingit, worked as a director at a contemporary Native art gallery prior to entering the health field. He decided to tap his connections in the art world to devise a creative platform to spread cancer awareness. Charles inherently knew the importance of art to Native people.

He was relieved that his concept was embraced by colleagues, and ecstatic when it took shape in the form of educational posters and brochures on their program and specific cancers.

The colorful posters feature the art of Chholing Taha and Roger Fernandes, among others.

''People are able to enjoy the art and read the important information included on the posters,'' Charles said.

For example, the latest release in the series of posters, ''Legend of Octopus Woman and Crow,'' painted by Taha, Cree/Iroquois, is based on a Coast Salish story. It was the perfect piece to spread awareness about the dangers of tobacco use.

The octopus represents cancer and the crows represent potential cancer victims. The one yellow crow wrapped in the octopus' tentacles represents the crow that fell to the seduction of the octopus.

''The posters express feelings that words can't capture,'' Charles said.

The posters and brochures are distributed to assorted Native health clinics and facilities within the service region, and are distributed for free at health fairs.

Charles said NPCC has plans to take the Art for Cancer campaign to the theater within the next two years. They are currently planning to adapt ''The Crow and Octopus'' story into a children's play.

''Art for cancer is kind of the springboard to many other projects, including other forms of art.''

Red Eagle Soaring, a local Native youth theater group, has expressed interest in the project. If and when the program comes together, the ensemble plans to tour public schools and venues.

Meanwhile, Manuelito has introduced digital storytelling to her staff as a cost-effective, sustainable medium that merges the human experience and technology with cancer education.

Alongside art, she said storytelling is the lifeline to Native cultures, and digital storytelling allows Native people to share their experiences with cancer on a three- to five-minute CD. The storyteller must also attach their favorite photo to put a face with their story.

Manuelito explained that most people are able to create digital storytelling on a computer with a little training and free, user-friendly software. And now that the staff has gone through a three-day training program, they are ready to launch the same training to tribes in their service region.

''We really try to draw on the beauty and strengths of our culture.''

Each tribal health clinic can use the CDs for educational purposes, including continuing education for non-Native physicians, and even attach the stories to grant applications.

First, the storyteller must write a two-page narrative on whatever story they want to tell in relation to cancer, then record and edit their story to their exact preferences.

''Within a lot of our communities and families, we can name one, two or three people who had a cancer diagnosis, or have gone through treatment, or have known someone who died from cancer,'' she said.

Manuelito said Joe Lambert first introduced the digital storytelling in 1994. He founded the Center for Digital Storytelling in Berkeley, Calif.

As for the future of innovation, she wants to eradicate what she deems a 20-year lag in the delivery of cancer research and technologies that could save the lives of Native people.

''We don't have 20 years,'' she said.

To further reach young people, Manuelito said her staff is currently entertaining the concept of creating Native comic books.

NPCC's overall goals are to increase cancer education in both rural and urban populations, form partnerships with tribal colleges and universities to enhance research opportunities, create community-based access and research to cancer education, and much more.

The small staff depends on health care co-leaders throughout the region to reach Native populations with their materials, and receive feedback and ideas to further bolster cancer education.

To learn more about NPCC, visit http://depts.washington.edu/uwccer.