She had a mastectomy, then radiation and chemo to nuke the disease. It worked, but eight years later the cancer returned and had spread to her lungs. She now has stage IV metastatic breast cancer, for which there is no cure.
“We’re managing it as a chronic illness,” she continued. “I have few side effects, I work full-time, and have been able to live a relatively normal life.”
Amina is one of the lucky ones — her care has been thorough and robust. But she understands very well the hurdles that may prevent other women, particularly Black women like herself, from getting the care they deserve.
Why are nearly 4,000 more Black women dying of breast cancer today than white women? Especially when, in the late 1970s, breast cancer killed them at roughly the same rate?
She’s right, and the data backs her up: According to a new study released earlier this month by the Avon Foundation for Women, Black women are 43 percent more likely to die of breast cancer than white women. The mortality rate was higher for Black women in 42 of the 43 largest cities in the United States. Even more troubling, the nationwide gap actually increased from 2005 to 2014.
So why did nearly 4,000 more Black women die of breast cancer between 2010 and 2014 than white women? Especially when, in the late 1970s, breast cancer killed them at roughly the same rate?
“We suspect the disparity continues to grow primarily due to access to healthcare,” he says. “All women, especially Black women, need to demand high-quality breast-cancer screening, and, if diagnosed, they need to follow through with treatment in a timely manner.”
Early detection and treatment is key. When caught early, breast cancer is treated more like a chronic condition — no different than, say, diabetes or heart disease — rather than a death sentence. And for good reason: The five-year survival rate among women with breast cancer that hasn’t spread or metastasized is nearly 99 percent.
It's almost painful to watch television or go shopping at the grocery store and see all the pink-ribbon merchandise. We are more than aware that breast cancer exists. What saves people’s lives is research.
But there’s reason to be hopeful. In Memphis, TN, for example, mortality rates among African-American women with breast cancer decreased by 15% between 2005 and 2014, thanks to coordination among local healthcare partners — the screening centers, teaching hospitals, and insurance companies — in order to provide a “safety net of care” that helps ensure high-risk patients in at-risk communities or those without insurance don’t fall through the cracks.
Hurlbert says that in some hospitals across the country, women can wait weeks, and even months, just to get a mammogram, which has a ripple effect, delaying surgery and treatment if both are needed. Now, with a coordinated effort like the one in Memphis, hospitals are working together to get patients help faster.
Memphis also recently launched an initiative called Sister Pact. The goal, particularly in the African-American community, is for women to create “pacts” among friends to get mammograms together and remain accountable to each other, for example, by making sure follow-up appointments aren’t missed if a mammogram comes back abnormal.
While it’ll take far longer to fully address the underlying socioeconomic barriers to equitable care, healthcare workers in Memphis have found effective workarounds, such as steering women to screening centers with breast-imaging specialists.
A lot of women are the caregivers of their families, so they put themselves second.
It's this all-hands-on-deck approach that has helped Boston nearly close their gap completely. If more cities follow suit (Philadelphia already has), we could begin to see a widespread trend.
Still, there’s more work to be done, especially for women whose cancer has reached stage IV and metastasized, meaning it has spread to other parts of the body. Hurlbert says, “We don’t have specific data on what stage of breast cancer the women in the report had, but stage IV breast cancer is what kills. Our study of mortality records in the largest cities can be assumed to have nearly all been due to stage IV breast cancer.”
When caught early, breast cancer is treated more like a chronic condition — no different than, say, diabetes or heart disease — rather than a death sentence.
In 2015, Caldwell launched the nonprofit MetUp with two other metastatic patients to push for legislative action. One issue, says Caldwell, is that government cancer registries don’t track when a cancer spreads. So while Caldwell would be included in an official tally of metastatic patients, her cofounder, Jennie Grimes, who was diagnosed at stage II and is still alive, looks like a success story — on paper. The only problem is that Grimes’s cancer came back and has since spread.
“We don't know enough about our disease to know if there is something different about her cancer compared to mine — should we treat it differently?” Caldwell said. “We don't even count those patients, so we can’t quantify what works and what doesn’t.”
She’s also pushing to have more funds allocated specifically to metastatic research; right now only 7% of breast-cancer funds go to support studies focused on stage IV.
“Roughly 40,000 Americans have been dying of metastatic breast cancer annually for several years now,” Caldwell pointed out. “It's almost painful to watch television or go shopping at the grocery store and see all the pink-ribbon merchandise. We are more than aware that breast cancer exists. What saves people’s lives is research.”