BRIGHTON — Floral art and meditative music set a cozy mood inside the bus-sized Mobile Mammo vehicle staged on a recent Tuesday in a Brighton Reservation parking lot.
“There is nothing to be afraid of,” said Carla Gopher, who waited on a leather sofa thumbing through magazines before receiving the first mammogram of her life. “It’s just something I have to do if I want to stay healthy.”
In 15-minute intervals, Brighton women stepped aboard the coach and up to a digital mammography imaging machine for breast cancer screenings provided through an arrangement between the Tribe’s Health Department and Fort Myers-based Radiology Regional Center.
So far this year, including a visit to Big Cypress’ Breast Cancer Awareness Month event in October, the vehicle has spared 30 female Tribal members from traveling long hours out of town for the much-needed 20-minute checkup.
“We’re saving time and we’re saving lives,” said Terri Anquoe, a health educator at the Brighton Clinic.
According to the most recent breast cancer statistics from the National Cancer Institute at the National Institutes of Health in Bethesda, Maryland, Native American/Alaska Natives suffer fewer incidents of breast cancer than all other ethnic groups nationwide – but disproportionately higher death rates.
Overall, one of eight women and one in every 1,000 men in the United States will battle breast cancer, but when statistics are broken down by Native American/Alaska Native, white, African American/black, Hispanic/Latino and Asian/Pacific Islander groups of women and men, Natives come in last. But, when it comes to deaths because of the disease, Natives pull in front of Asians/Pacific Islanders and fall side by side with Hispanic/Latinos.
The Centers for Disease Control and Prevention in Atlanta, Georgia, and the Huntsman Cancer Institute (HCI) at the University of Utah’s Native American Outreach program both list breast cancer as the most common cause of cancer deaths among Native women.
“Even with the cancer rates low, deaths are high,” Barbara Boling, the Seminole Tribe’s tribalwide health education coordinator said. The death rate is also disproportionately highest for seven of the top 10 cancers in the United States, according to recent reports.
Boling, like many health educators nationwide, attributes the disparate national death rate to insufficient prevention awareness, early diagnostic unavailability and lacking Native health care funding.
A web presentation by HCI in October – as part of a Native Voices Lecture Series at the University of Utah – provided glaring statistics: 28 percent of Native Americans live in poverty compared to 15 percent of other populations and 29 percent of Natives have no health insurance, compared to 15.5 percent nationwide.
Funding has always been a huge problem, said Phyllis Pettit Nassi, a member of the Cherokee Nation and an HCI national health educator, during the lecture. On some reservations funding is so scarce that clinic resources are reserved for medical issues that threaten “life and limb,” meaning chronic disease like cancer is not on the care list and prevention is nearly nonexistent.
“We have the poorest five-year survival rate in seven of the top 10 cancers … we don’t come in, we don’t get screening, and when we do show up, we have three- or four-stage metastatic cancer. We don’t make it to five years,” Nassi said.
At least one risk is uncountable, said Nassi, who, with fellow HCI educator Lynn Hall, of the Klamath Tribe, provides educational lectures, forums and programs throughout Indian Country and indigenous communities in Canada and Australia.
“In all reservations, there is the cultural factor. A lot of our people believe that if you say the word (cancer) you will cause it. So, they don’t talk about it. Also, but less these days, is that person will be ostracized if they are diagnosed,” Nassi said. “Cultural barriers transcend even the most educated.”
Economy and geography also are considered in cancer statistics, but Boling and Nassi agree that none of the numbers are entirely reliable. For instance, though the CDC rates liver cancer as the highest cause of death among Native American men and women, the National Institutes of Health lists lung cancer as the leading killer.
“Cancer information for American Indians and Alaska Natives is known to be incomplete because the racial/ethnic status of many of these individuals is not correctly identified in medical and death records,” states the CDC’s 2014 Cancer Facts & Figures report.
Indian Country deals with much “skewed” data, Nassi said.
“Why? Because we are scattered all over the United States,” Nassi said. “If you think locally, lung cancer is highest in Northern Plains, gall bladder is highest in the Southwest and colorectal cancer is highest in Alaska … but we do know that cancer is our No. 1 killer.”
Nassi suggests that Native communities respond to cancer risk in three ways: talk about family history in order to begin prevention measures among high risk circles; create support groups to embrace patients and families and educate communities at large; and participate in research so medicine and health care can be customized by way of targeted care toward an eventual cure.
“But there’s not much to do about cancer if we can’t even talk about it,” she said.
Boling said she began organizing mobile mammogram visits to the Seminole reservations in 2004 before the Tribe became more financially secure. She said she “begged, borrowed and pleaded” to get the effort started. It began with Moffitt Cancer Center in Tampa but was interrupted for a few years when the economy tanked and the center’s budget was slashed. The on-reservation service was relaunched in 2011 with Radiology Regional Center.
Diane Smith, who has showed up for testing every time, said she hasn’t missed a single mammogram since discovering a cyst in her breast about 40 years ago. Her mother, Jennie Snow, began getting mammograms at the van about three years ago.
Smith said she appreciates the Tribe for allowing the on-site service. Twice she was referred for further examinations because of suspicious findings but came away both times with happy results.
“You have to keep an eye on everything if you want to keep healthy. If they see something, you get looked at closer just in case there is a chance for ‘that,’” Smith said.
Boling said good outcomes are most often the case because of the Tribe’s access to high-level health care and the Health Department’s community programs that encourage healthy lifestyles through diet and physical activity.
“People are walking more and eating better because the message here is the same as it is throughout all of Indian Country: We don’t want to see you in our office for the first time when you are at stage four or five of anything,” Boling said.