Twice As Deadly: Patient Navigators Work to Close the Breast Cancer Race Gap
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The disparity is breast cancer deaths is part of a bigger story about health and race in Chicago. If you map out the city's hardest-hit neighborhoods, you could easily be looking at a map of diabetes incidence, or STDs, or infant mortality.
The breast cancer disparity is especially shocking – the death rate for black women here is twice as high as the rate for whites. But race, poverty and health problems seem to go hand-in-hand. Research points at barriers to care like cost and transportation. New studies show cultural factors may make it harder for African Americans to overcome those obstacles.
ALLISON: I don't know whether it's because we don't go to the doctor – I'm saying ‘we,' because I was in that category too. I just didn't go.
That's Marva Allison, a retired teacher from the south suburbs. She says in spring of 2002, she was in the shower, when she found a lump in her breast. But for seven months, she didn't do anything about it – she says she was scared, and didn't really trust mammograms. When she finally came around to getting a diagnostic test, she took one look at the machine and changed her mind.
ALLISON: I had decided to not do it, and just come back later.
SPITZER: You almost walked out?
ALLISON: I almost. Because when I saw that machine and they start pushing you and – Jesus. I started crying like a baby. But the technician was very nice, and she said, you believe in that cross you're wearing. I said of course, And she said well, you're not here alone.
That technician's act of compassion kept Allison from dropping out of treatment – what doctors call, “lost to follow-up.” She was lucky. Or blessed. But not everyone is. A University of Illinois at Chicago study finds black breast cancer patients are almost twice as likely to have a long gap between first seeing a doctor or nurse, and getting treated.
Breast cancer care is a wildly complicated thing. A woman might need two mammograms, an ultrasound, an MRI, maybe a biopsy – all in different places, and that's just to get diagnosed. Staying on track takes savvy, stubbornness and money – many women need help.
FRANCOIS: Excuse me, ma'am? We're having a breast cancer awareness dinner coming up...
Helping Her Live is a patient navigation program working on the west side of Chicago. Navigators help shepherd women through their care. These trained guides are getting more common, mostly in hospitals. Helping Her Live was founded by the Sinai Urban Health Institute to start at street level – in this case, at the Kedzie Mall in West Humboldt Park.
FRANCOIS: Hi, Ladies, can I give y'all a flier? We're having a breast cancer awareness dinner coming up.
WOMAN: Oh really? My best friend just died from breast cancer. FRANCOIS: Really? I'm so sorry to hear that.
WOMAN: Just August the 18th ...
At events like that dinner, Helping Her Live connects women with doctors and schedules mammograms. Then they walk women through each step – from screening through treatment – and get it all paid for. They've reached about 800 women in three high-mortality Chicago neighborhoods.
Health educator Celevia Taylor says on any given day, she just wants to reach one. She remembers a day when that one was a woman in a homeless shelter where Taylor was giving a workshop.
TAYLOR: This one young lady raised her hand, and she said, 'Well, I have breast cancer.' I said, 'So are you in treatment?' And she said, 'No.' It was obvious that she had a lot more things going on, and I believe they were way more pressing than her issue with breast cancer.
ANDERSON: It's hard to have a problem when you're on the streets.
This is her – Kenester Anderson. I found her at Breakthrough shelter near Garfield Park – the same place she first told Taylor she wasn't getting treatment.
ANDERSON: Cause I was afraid, I didn't know what the outcome was gonna be. Started getting' worse and worse, day by day. So I said, do what they tell me to do. I was doing what I wanted to do then.
TAYLOR: She finally signed up and said, 'OK, you know I'm going to go ahead and go, because you said so.' When it came time for the appointment, and we actually sent a van for her to pick here up and bring her there, and we were going to sit with her through the whole process. She didn't show up!
ANDERSON: I don't know, just stressed. Didn't want to talk to nobody, didn't want to be around nobody.
SPITZER: Do you feel like you were depressed?
ANDERSON: I was. I wasn't feeling like it, I was. I was very much so.
With support from Taylor and help from the shelter, she picked herself up and got treatment. Sticking to it wasn't easy – Anderson still slept outside sometimes with her medicines crammed in her purse, even during chemo. Anderson is still homeless, but her tumor is gone.
Navigators help women like Anderson with logistics and moral support, and they're a source of credible information about a taboo subject. That's no small thing. UIC professor Carol Ferrans has been researching health and minority issues for 20 years. She's found that some women of color in Chicago have inherited beliefs about cancer that contribute to delays is care.
FERRANS: Some women believe that if a lump is not painful, it's not cancer, and so then, she'll wait. Women will also wait with a lump, thinking that if it doesn't grow, it's not cancer. So again, waiting.
Ferrans found black and Hispanic women are more likely to believe things like cutting a tumor will make it spread, or that prayer could shrink a lump. Those beliefs around religion are especially tricky, she says. Faith can be a great strength – Ferrans says it's only a problem when it keeps women from going to the doctor. She remembers one woman in particular.
FERRANS: Her faith counselor told her that if she had the faith of a mustard seed that she would be cured, and if she went to the doctor it would show lack of faith. And so she, with her good faith, stayed home and prayed until she did have advanced cancer.
Ferrans says those beliefs are partly the legacy of segregation and social isolation. And they may make it harder for women to negotiate a fragmented health system already fraught with inequalities. Steven Whitman of the Sinai Urban Health Institute says patient navigators can help – it's just too bad that they have to.
WHITMAN: We create this insane system which no one can understand, especially poor women. Then we get grants, if we're lucky, to hire navigators to walk women through this system which we've created to be insane in the first place.
Patient navigators are coming into wider use now. The American Cancer Society has about a dozen of them around Chicago. A new program just began certifying Chicago-area nurses to be navigators. But ultimately, say Whitman and his colleagues, this shouldn't be just about helping women figure out the system. The system needs to figure out the women.