Judges’ comments:
This story delved into one narrow problem – epilepsy among Native Americans – as a lens into the much broader issue of health disparities, and it showed us how multiple factors – from cultural bias to economics – can lead the health care system to fail certain populations. The story is well-written and includes thorough research and numbers so it doesn’t rely on emotion for its impact, and yet there’s still a palpable sense of outrage.
1. Provide the title of your story or series and the names of the journalists involved.
Closing the Distance: Native Americans and Epilepsy by Aliyah Baruchin
2. List date(s) this work was published or aired.
Published in Issue 2 (Spring 2010) of EpilepsyUSA, the national magazine of the Epilepsy Foundation.
3. Provide a brief synopsis of the story or stories, including any significant findings.
The fourth in a series on epilepsy in cultural context, “Closing the Distance” looks at the state of epilepsy care among Native Americans, focusing on the often significant geographic and access-related barriers to care that affect Native Americans living in rural areas.
4. Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
This story did not utilize FOI or public records acts requests. The primary documents used were reports and white papers on the federally funded Indian Health Service, and on the many public health and access-
to-care issues that face members of various Indian tribes, especially those living on reservation lands. IHS and tribal websites were also helpful.
5. Explain types of human sources used.
For this story, I interviewed: -members of tribes located in several parts of the U.S. (upstate NY, Arizona, New Mexico, Connecticut, Minnesota) who have epilepsy or whose children have it; -community health workers from the Navajo and Hopi reservations; -physicians who work with the Indian Health Service, including one of the IHS’s three full-time neurologists nationwide; -researchers who are working on increasing access to neurological care for tribe members in remote locations like the desert southwest; -an Epilepsy Foundation of Arizona program coordinator who does outreach to the Navajo and Hopi on epilepsy issues; and -neurologists from Arizona, New Mexico, and California whose practices focus, or have focused, on the care of Native American patients with epilepsy.
6. Results (if any).
None to date.
7. Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
There have been no corrections or clarifications; the only follow-up on the story so far has been positive, in the form of multiple requests for extra copies of the magazine from physicians, tribe members, and community health workers.
8. Advice to other journalists planning a similar story or project.
As in all stories dealing with racial/ethnic/cultural inequities in health care, embrace complexity and avoid generalizations. Indian tribes differ widely, and the barriers to care that Native Americans face depend upon factors like where they live, what their socio-economic status is, what resources tribes have, how their tribes fund health care, or what their beliefs are about certain diseases and conditions. See what conclusions can be drawn from truly common experiences by many members of an ethnic group; but always remember that no group is monolithic, and that disparities are entirely multi-faceted: there is no single solution to them, not ever. It’s always a question of multiple solutions that have to come from many angles. And as in all stories about epilepsy, remember that the persistent stigma surrounding the condition can never be dismissed, or even underestimated. Always inquire into how secretive patients and their families feel they have to be — who they tell about epilepsy, who they hide it from, and how that secrecy affects their daily lives as workers, students, partners — and ask whether that kind of stigma is perpetuated by the culture and community in which they live.