Brown faces are missing from circles of cancer survivors, according to a new report released in early April at the biennial conference of the Intercultural Cancer Council.
The council, based at Baylor College of Medicine in Houston, compiled data from reports issued by other institutions from the early 1990s to the present – and the resulting overview is stark. The findings, though professionally presented, stirred deep memories about racism that I witnessed and experienced during my treatment last year for breast cancer.
It also helped me realize why I was one of the few women of color I saw at mainstream cancer conferences.
The council reports that communities of color and poor communities are less likely than other Americans to share in the 30 years of gains in cancer detection, cancer treatment and cancer survivorship.
Cancer patients of color are also less likely to get needed pain-managing medicines than white patients.
Susan Matsuko Shinagawa, a former chairman of the council, lives with chronic pain – despite treatment that eradicated the cancer in her spine after it spread from her breasts. When in 1991, at age 34, she found a lump in her breast, doctors refused to biopsy, saying “Asians don’t get cancer.”
The Mayo Clinic’s Dr. Judith Kaur, one of three American Indian oncologists in the United States, remembers hearing similar words about Natives when she was in medical school not many decades ago.
For Shinagawa, finding treatment at 34 was further complicated by her marriage at the time to a U.S. serviceman. She went to the Army hospital where she was supposed to be treated, asking for the cancer specialist. But there was none at the hospital, which was geared for younger people – people who presumably didn’t get cancer. Eventually, she was treated elsewhere.
Her cancer journey led her into a leading role as an advocate for people of all races who suffer from this disease.
“We really don’t know the full extent of cancer in Indian country,” she said.
SEER, the government’s Surveillance Epidemiology and End Results program, describes itself as “an authoritative source of information on cancer incidence and survival in the United States. The SEER program is considered the standard for quality among cancer registries around the world.”
SEER samples data from different racial and ethnic communities in the United States and uses that data to extrapolate cancer rates for each community.
In Indian country, SEER has one surveillance area, which happens, Shinagawa said, to be in the part of the country where Indians have the lowest cancer rates.
“All the reliable data we have comes out of folks like Judith,” Shinagawa said of the oncologist. “We do know that American Indians and Alaska Natives have the highest risk factors and tend to get sick at younger ages. They tend to die of these diseases, including cancer.
“It’s not really all that long ago that American Indians were eating healthy,” she said. “Then the government gets involved and does its magic, [and] people start to become unhealthy. Then the tobacco industry targets them.”
Several studies, which the council reviewed, confirmed a long-standing suspicion that “[there is an] adverse impact of health care providers’ personal attitudes and perceptions toward patients due to race, limited English proficiency and socioeconomic status.”
Some of the findings reported from various studies include:
* Native women were half as likely as white women to receive mammograms.
* Significantly fewer Native women’s breast cancer is diagnosed early than white women’s breast cancer.
* Native men are twice as likely as white men to have their prostate cancer diagnosed at late stages.
* American Indians and blacks treated for colorectal cancer receive less intensive therapy and have poorer survival rates than white patients.
* Native women in New Mexico were four times more likely than white women to wait six months between their cancer diagnosis and their surgery.
* American Indians who didn’t go to college or didn’t finish are rarely included in clinical trials for new cancer treatments.
* Cancer patients, who are treated at centers with predominately minority patient populations, are three times more likely than those treated elsewhere to experience inadequate pain management.
* Few cancer patients of color are told in advance about potential side effects from pain medications or how to manage them.
“I think the system is racist in the way it does its work,” Shinagawa said. I told her about the experience I had with an elder friend of mine last year.
We were traveling and her colostomy bag broke. She had forgotten to pack an extra. We were three hours from home. She called her doctor early in the morning to ask for advice.
I could hear his voice from across the motel room as he scolded her over the phone for forgetting her supplies. Our friend had the presence of mind to suggest that we go to a medical supply store.
We arrived in a reservation border town as that store opened. The soft-spoken elder described to the white clerks what she was after.
They insisted in overly loud voices, the kind you use when you think someone is deaf, that they had nothing of the sort and walked away.
I followed them to their desk. As the granddaughter of two very proper ladies – one white and one Yakama – who seldom held their tongues, I told the clerks in a quiet voice, “You could be polite.”
The clerks looked at me as if I was holding a Saturday night special. I said it again.
One of the clerks raced over to my elder friend and started babbling about not having what she wanted. By this time, my friend was halfway through carefully reading every label on the disorganized shelf, and she already had in hand some of the items she needed.
We paid and left. We’ve never spoken of it again. But the memory has haunted me, I told Shinagawa.
Months later, when my talented surgeon called me a “good Indian” and my husband “chief,” I found it safest to keep my head down – and get the medical care I needed. Later, I told my oncologist why I wouldn’t be returning to that surgeon.
In trying to figure out why I let that doctor talk to me in that way, I have mentioned it to a couple of acquaintances. Someone at my all-white breast cancer support group responded by saying what a respected doctor my surgeon is. A group of tribal women gasped, groaned and rolled their eyes when I told the story.
Perceptions of racial bias vary depending on which side of the bias you are standing on. Racism, of all places, needs to be stopped in medical care, where a patient’s life or death can hang in the balance.
“Because of disparities in health-care delivery throughout the continuum of cancer care,” the report stated, “these individuals are more likely to be diagnosed with late stage disease, experience poorer treatment outcomes, have shorter survival time with lesser quality of life and experience a substantially greater likelihood of cancer death.”
Find the Intercultural Cancer Council 2006 Survivorship Report at www.iccnetwork.org.
Kara Briggs is a Yakama journalist from Portland, Ore., where she has worked for the last 11 years for The Oregonian. In May she joined the American Indian Policy and Media Initiative of Buffalo State College as a senior fellow. She writes about Native American health issues in this biweekly column. She is a former president of the Native American Journalists Association and winner of the 2004 Award for Investigative Journalism. Contact her by e-mail at firstname.lastname@example.org.