Reclaiming Public Health: Stories of Self-Determination from Tribes

Reclaiming Public Health: Stories of Self-Determination from Tribes

From the Margins to Regional Leadership in Cancer Survivorship

By: Dr. Doris Cook

Mashantucket Pequot Tribal Nation, Mashantucket, Connecticut

The tribe is small but highly organized. Mashantucket Pequot Tribal Nation has propelled itself from the depths of poverty to its current position since federal recognition was restored in 1983.  Honoring cultural tradition along with the integration of modern American society, the Mashantucket Pequot continue to embrace opportunities to give back to the community and promote the ethical and cultural values central to the Tribe. The Tribe’s efforts are centered on organizations that echo tribal values and those which embrace and promote the social stability and economic growth both locally, and on the state and national levels.

The Mashantucket Pequot Tribe of Connecticut is located on approximately 1250 acres in New London County in Southeast Connecticut.  The Mashantucket Pequot Tribe is a small but industrious tribe that has around 300 of its enrolled 800 members living on the reservation.  The Tribe, which had federal recognition restored in 1983, has become one of the most economically stable tribes in the country. The tribe has long been focused on the health of all Native Americans living in Connecticut. Since 1984 the Mashantucket Pequot Tribal Nation (MPTN) Tribal Health Services has operated the only health clinic for Native Americans in Connecticut that provides primary medical and outreach services that include traditional and culturally appropriate services.

Public Health Problem

Mark Samos has been involved with the health and cancer program with the Mashantucket Pequot Tribal Nation since 2001. He recalls the beginning quite vividly. An Eastern Pequot Leader (and 2 time cancer survivor) began calling and asking for exploration, analysis and action on what she thought was a big issue, cancer. She was persistent and her calls were weekly. Mark quickly realized that there was no Native American cancer programming; even outside cancer resources for Native Americans in Connecticut were scarce to non-existent and there were no culturally appropriate educational materials. Further, there was no Native American specific cancer survivorship education program in the Northeast. With the cancer rate reported as the second leading cause of death for Native Americans, the Mashantucket Tribe undertook to create a program that would meet the needs of tribal members and Native Americans in Connecticut.

Developing the Program

Through a series of community meetings in 2005, Samos’ office realized that the community was interested in developing a coherent, culturally appropriate cancer information and support network. They received a planning grant from the Spirit of Eagles in 2006 and immediately got to work with the community on developing a strategy, and in 2006 the Northeast Tribal Cancer Advisory Board was established.

To get the program running, the tribe sought out and partnered with regional cancer boards such as Connecticut Cancer Partnership and the New England Division of the American Cancer Society. The tribe has since achieved partnerships with Komen for the Cure Connecticut and Boston University. Both the program and the Mashantucket community highly value establishing partnerships, and therefore, work very closely with their partners to expand and develop the project into a successful venture.

Program Description

The Mashantucket Pequot Wellness and Cancer Program works to coordinate cancer control efforts of the Tribal Nations in the Southern New England states of Connecticut, Massachusetts and Rhode Island with plans to expand the project throughout New England.  The program provides the tribal populations with culturally-relevant cancer survivorship education materials, while helping them to foster connections between Native cancer survivors and the broader community through the “Families Together” project.

Working with the Connecticut Cancer Partnership and the American Cancer Society the program has developed and implemented the “Cancer Wellness and Prevention Circles” for Connecticut Native Americans. They worked with existing cancer informational and educational tools, did surveys and held focus groups to adapt the materials and create culturally specific materials.  Cancer survivor stories were recorded digitally to create an archive for future generations, also available to researchers.  Their goal was to have thoroughly documented records of cancer survivors in an archive that was easily accessible.

The program provides an intergenerational learning site where individuals can share stories of cancer survivorship, health, illness and related behaviors, with current and future generations.  They have activities designed to reduce gaps in health outcomes and ease the burden of cancer on individuals and their families.  They provide the communities with events that focus on cancer awareness and screening for Native Americans in the Northeast, and educate on the correlation between early detection, treatment and survivorship.

Overcoming Stumbling Blocks 

The program start-up was not without its obstacles.  When the program started they encountered problems with the lack of data on Native Americans and cancer.  Once they started the cancer survivor archive they were faced with time constraints, and project team members ended up working longer hours than anticipated.  They sought out expertise in archiving and were able to secure a small grant to continue with their collecting and depositing stories in the archive.

Funding has been the biggest challenge for the tribe.  Many philanthropic organizations do not understand how tribal systems work, particularly when it comes to tribal sovereignty and funding. With persistence, perseverance and hard work, the tribe was able to secure grants and partnerships to finally overcome the problems with funding.

Geography was also an issue for the program.  Many of the communities were geographically dispersed and getting them together proved difficult.  Initially, the program was designed as a Mashantucket Pequot Tribe center-based model but it needed to be modified to enable access by other rural tribes interested in the program.  They tackled this problem by taking meetings, events and activities out to various groups and communities throughout New England.

ACCOMPLISHMENTS AND IMPACT

• Tribal Nations in the New England states have a heightened awareness of cancer prevention, screening, treatment options available and undergo screening and testing.
• By providing culturally-relevant cancer survivorship education materials and events to the tribal population and fostering connections between Native cancer survivors and the broader community, individuals have increased knowledge of cancer survivorship needs, resources and access to resources. Tribal members are able to seek out and access resources.
• Participants reported lower levels of stress and anxiety and a feeling of “positive supportive relationships [that] help with all aspects of healing”.
• Through surveying and working with providers, they have raised cultural awareness and sensitivity and providers are more open to special needs of Native Americans seeking care.

Mark Samos stated that five things that make it work:

• Community driven, ongoing involvement and oversight
• Supportive Tribal Council
• Dedicated manager with a strategic vision
• Early partnership with state government, funders and cancer focused organizations
• Staff willing to put in extra effort to realize the project

CONCLUSIONS/LESSONS LEARNED

In terms of advice to others, Mark Samos advises on:

• The importance of a flexible and inclusive process that has community buy-in and tribal council support.
• The importance of understanding the tribe-specific health behaviors and learning needs of participants. Knowing the culture of community organizations is important.
• The value and importance of establishing early partnerships and networking with state, regional, federal and local programs.
• Essential to have a highly committed team to work with.

“Don’t be discouraged,” Mark stated, “even if one participant shows up, carry on.  One person can outreach and help to educate more.” He went on,   “This has truly been a partnership, any tribe that tries to do it on its own, will be surprised, it won’t fly.  You really need the communities.”

Contact:

Mark Samos, MA, LPC
markwsamos@gmail.com

This success story was published in the Winter 2013 Association of American Indian Physicians newsletter.

About the author:

Dr. Doris Cook has thirty-five years experience with American Indian and Alaska Native communities. Her focus over the last three decades has been on indigenous policy development, program and organizational management, program evaluation, public health planning and research ethics.

This article was supported by a Cooperative Agreement #1U38OT000133-01 from the Center for Disease Control and Prevention, Office of State, Tribal, Local, and Territorial Support. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.