Linda Burhansstipinov
Linda Burhansstipanov, MSPH, DrPH (Cherokee Nation) authors "Standing on the Shoulders of our Ancestors: Surviving and Thriving Beyond Cancer

Standing on the Shoulders of our Ancestors: Surviving and Thriving Beyond Cancer

By:  Linda Burhansstipanov, MSPH, DrPH (Cherokee Nation), Founder, Native American Cancer Research Corp (NACR) and President, Native American Cancer Initiatives, Inc. (NACI)

Flashback:  During NACR’s 2001 American Indian/Alaska Native (AI/AN) Survivorship Conference, the AI/AN survivors shared their personal cancer stories.  Tina Aguilar (Wasco/Warm Springs) spontaneously wrote a poem as she was listening to participants share their stories.  While attending the Spirit of EAGLES conference held in partnership with Seneca Nation in Buffalo, NY, I was reminded of Tina’s powerful poem and reflected, “then” and “now”.  So, 16 years later, how are our AI/AN survivors faring?  Overall, the majority of our people are winning the battle Tina refers to and most are transitioning from being a “patient” to a “survivor” to a “thriver”.  Part of this transition is letting go of the anger, frustration, fear, etc., from the cancer experience … to allow yourself to being to be “free” (again) and to accept that cancer does not identify you; that there is hope and happiness and to rejoice each day for the gifts the Creator grants us all.

By what right do I dare make such statements?  Because NACR has the largest AI/AN cancer survivorship support program (>1,000) and data based on patients who have taken the time and effort to complete a very long survey about their quality of life (QOL).  We started doing this work in 1996.  The name of this program is “Native American Cancer Education for Survivors” or “NACES” for short (http://natamcancer.org/naces.html).  NACES started as a research grant, evolved into support, informational program.  It is a web-based, quality of life survivorship education program that originally was designed for breast cancer patients.  However, so many of our people have cancers other than cancer, our team supported or expanded much, but not all (such as the side bar on “story-tellers” is limited to breast only) of the information to multiple types of cancer that affect both men and women.  The website is free.  There also is a toll-free number (1-800-537-8295) to talk with one of NACES Survivorship Navigators (also called, “Native Sisters”).  NACES is supported by volunteers (which is why it may be a few days before you receive a call-back and why some information needs to be updated).

The NACES web pages average 800 visitors daily and 941 AI/An survivors and 244 family members of survivors have completed the NACES QOL survey (n=1,185).  Of these, most are female and almost half (46%) have high school or less education.  The majority of survivors live in the Northern and Southern Plains and the Southwest.  More than half of the survivors were diagnosed and treated for cancer five or more years ago (with 10% diagnosed m ore than 20 years ago!).

About 1/3 (37.1% live in the urban area and 1/3 (33.6% live on a reservation) and 18.5% live in a rural community, but not a reservation, and 10.9% move back and forth between the city/rural/reservation.  Slightly more than half (53.4%) are full bloods.

Access to cancer care remains a challenge.  Also, half (48.7%) travel more than 100 miles ONE WAY to access care and because of the quality of our highways, this travel takes more than two hours of driving time.  Unfortunately, only 12% were able to access care through Indian Health Services (purchased referred care, commonly called “contract health services”).  Most have obtained cancer care services through Medicaid (because about half of our patients are younger than 50 years old when diagnosed with cancer), Medicare, the Veterans Administration or Indigent Care programs.  When asked to rate their QOL, the majority of our survivors answered “excellent, good or okay”:

Physical QOL = 82.6%
Social QOL = 85.0%
Emotional QOL = 81.1%
Spiritual QOL = 92.1%

So what do these data mean for our people?  Treatments are improving significantly and most, but not all of our survivors are living beyond the cancer experience.  We need more people helping newly diagnosed patients get into quality care as soon as is feasible.  Many of our survivors continue to have late or long-term side effects from the cancer or cancer treatments and need help to reduce their symptoms and to improve their QOL.  And, we need more survivorship support programs and efforts in our local communities.  Our team has had the honor of working with AI/AN survivors for more than 21 years and there is no work that we have done that is as rewarding as educating, caring for and supporting these people and their families.  Join the efforts!

 

“Sharing Hearts of Survivors” — Tina Aguilar
Sitting and listening to stories being told, women and men from all tribes young and old each has a story of cancer to share with all others.  Listen what is said by each sister and brother.  This dreaded disease that’s claimed many lives, is still trying tis best to break up husbands and wives.  it doesn’t care of age, race, and gender.  Only that it can find a body to enter.  God has placed compassion on many hearts here.  One day there will be a cure for those we hold dear.  Do not give up — there’s too much at stake.  With God’s help, we will win this fight — Piece of cake!

 

The NACES Team
(people who created information on the branches and leaves and/or supported NACES):

Linda U. Krebs, Lisa Harjo, Mark Dignan, Kate Jones, Judith S. Kaur, DeeAnn DeRoin, Jennie Joe, Caren Trujillo, Maxine Brings Him Back, Janis and Daniel Petereit

×

Upcoming Events

Attending any of these upcoming events? Have other events to share? Let us know! Email us at NNN@ITCMI.ORG to share your event information or to get on our list serve for event updates.

 

George Washington University's Milken Institute School of Public Health will host its Second Annual Public Health Summit, Monday, October 23, 2017, 2 - 5:15 p.m. EDT, The summit will focus on climate change, gender equality, and antibiotic resistance.  LEARN MORE

Healthy People 2020 is hosting a webinar, Optimizing Birth Outcomes Through Preconception and Interception Health, Wednesday, October 25, 2017, 12:30 - 2 p.m. EDT.  "Participants will learn how Florida's Magnolia Project is improving the health and well-being of women by empowering communities to address medical, behavioral, cultural, and social service needs."  LEARN MORE

Native Fitness Week Training Certification Program - Flagstaff, Arizona - Join the Native American Fitness Council (NAFC) for their fall fitness week!  Fitness is especially important to Native American communities, where the incidence of diabetes and other health problems is disproportionately high. NAFC offers a way for participants to make a real difference through their cost-effective, fitness certifications.  For more information about the program and scholarships CLICK HERE.

FUNDING OPPORTUNITY - The Robert Wood Johnson Foundation 2018 Culture of Health Prize call for applications is now open.  it's "an annual competition honoring communities that have placed a priority on health and are creating powerful partnerships and deep commitments to provide everyone with the opportunity to live well.  Prize communities will receive $25,000, have the opportunity to share their story and lessons learned with the country, and join a national network of past winning communities."  DEADLINE NOVEMBER 3LEARN MORE HERE

The Alaska Food Festival & Conference - November 3-4, 2017 - Pikes Waterfront Lodge in Fairbanks, Alaska.  LEARN MORE HERE

Great American Smokeout - November 16, 2017 - LEARN MORE

Community Foods Projects Competitive Grant Program, USDA National Institute of Food and Agriculture Applications due December 4, 2017 For more information, CLICK HERE

National Institute of Food and Agriculture requests applications for the Community Food Projects Competitive Grants Program for fiscal year 2018. The estimated total program funding in fiscal year 2018 is approximately $8,640,000. The Community Food Projects Competitive Grants Program funds two types of grants, Community Food Projects and Planning Projects. The primary goals of the Community Food Projects Competitive Grants Program are to:

·         Meet the food needs of low-income individuals through food distribution, community outreach to assist in participation in Federally assisted nutrition programs, or improving access to food as part of a comprehensive service;

·         Increase the self-reliance of communities in providing for the food needs of the communities;

·         Promote comprehensive responses to local food access, farm, and nutrition issues; and

·         Meet specific state, local or neighborhood food and agricultural needs including needs relating to: Equipment necessary for the efficient operation of a project; Planning for long-term solutions; or The creation of innovative marketing activities that mutually benefit agricultural producers and low-income consumers.

Eligible applicants include public food program service providers, tribal organizations, or private nonprofit entities, including gleaners.

A webinar will be held on Monday October 16, 2017 at 2:00 p.m. Eastern Time for potential applicants. The Adobe Connect link is: http://nifa-connect.nifa.usda.gov/cfp2018/.

Full details can be found at: https://www.grants.gov/web/grants/view-opportunity.html?oppId=297333

FUNDING OPPORTUNITY - Public Health Institute is accepting applications for the National Leadership Academy for the Public's Health from teams in the Appalachian and Mid-regions of the United States.  "For communities that are engaged in cross-sector work to improve the public health, this is an opportunity to boost your team's capacity and skills through a community leadership process."  Deadline January 12, 2018 - LEARN MORE