Life can sometimes throw us a curve ball, but the will to overcome obstacles can be brought to the surface when we are faced with challenges.
And when it comes to breast cancer– Black women face a big challenge.
To begin with, studies have found that African-American women have a 40 percent higher mortality rate than White women facing breast cancer.
While lying in bed one evening, Tenika Whitehead accidentally ran her hand across her breast and felt a lump. It felt different and out of the norm from her regular self-examinations—so her alarm went off. She went to the doctor for an examination and testing. The results came back: Whitehead was diagnosed with Stage 2 breast cancer.
At 31, the mother of three did not expect to be a part of an alarming number of young women under 40 battling the disease.
In addition to the alarming national mortality rates, an African-American woman in Chicago is more than twice as likely to die of breast cancer compared to White women; but it has not always been like this.
In 1980 there was little difference in death rates between the two groups. While a decline in breast cancer deaths among White women is a notable success in the fight against the disease, the simultaneous increase in the death rate among Black women implies that advances in breast care over the last 28 years have benefited some, but not all.
“We have been taught to periodically check ourselves because you know your body is changing. There is no family history of it so there’s nothing that will make me check every so often or to be worried that this may be happening,” said Whitehead.
Whitehead’s form of breast cancer is one of the more aggressive (triple negative breast cancer) found in African-American women. She finished her first round of eight-week chemo sessions and is entering her final round, which consists of 12-weeks of chemotherapy.
“If it wasn’t for my children and my family, but my children more importantly, I would not have done chemo. I would have taken my chances; and see what happened. But [I did it] because I have young children and I know they need me around and I need to be around to see them grow up.”
The Face of Breast Cancer
Early detection and quality resources available to women in low disparity areas have improved with the addition of the Affordable Care Act (ACA). Now, under the new presidential administration, the healthcare reform is being stripped and rising insurance premiums will once again threaten quality treatment for patients.
Businesswoman and attorney Chris-Tia Donaldson is a breast cancer survivor. As the CEO of Thank God It’s Natural (TGIN), a natural hair and skin care company which is carried in 5,000 retail stores nationwide, she is one year in remission. At 36, she was at the top of her game, at the helm of building a successful company when Donaldson received the diagnosis.
“A lot of people asked me what that felt like, I was shocked. It was at a time of my professional career when the company was taking off. At a time when I was looking to focus on my personal life, I was working so hard and wanted to get the company to where it is today when I received this diagnosis. I thought, ‘you have got to be kidding me?’—like it was unfair,” she recounts. “On top of that, when you’re young, Black and diagnosed with breast cancer, it’s not that you don’t think you’re invincible but you don’t think it’s something that can happen to you.”
Over the years, images of breast cancer survivors showcased lots of White women in pink walking in groups, holding hands showing their perseverance to beat the odds or paying tribute to loved ones who lost the battle. But not many faces of color reflected back showing African-American breast cancer survivors until the last few years when more and more women have stepped up with their stories.
Telling Our Stories
Donaldson’s company has launched a campaign to dispel the stigma that can be associated with the silence of sharing breast cancer stories among the African-American community.
The Breast Cancer Under 40 campaign features women who have survived and persevered their diagnoses of cancer before their 40th birthday.
She says, “There’s some kind of stigma on Black women that we’re more private. We’re not necessarily comfortable at talking about things like sexuality and body type stuff and that can play a part as well. When we did the survivor, a campaign focusing on women under 40, people were coming up out of the woodwork but they were not willing to share it.”
“One of my close friends was diagnosed and she didn’t post anything about it. They were basically feeling, ‘I’m just going to live my life’ and I think White women give themselves more permission to be vulnerable and to say, ‘I went through this with my challenges.’ I feel as Black women, we have such a super woman complex at times, trying to deal with things and move on,” said Donaldson.
Between the ages of 60 and 84, breast cancer incidence rates are markedly higher in White women than Black women. However, Black women have a higher incidence rate before age 45 and are more likely to die from breast cancer at every age without necessary care.
Private and Public Healthcare
Both Whitehead and Donaldson were diagnosed under 40.
Currently battling the disease, Tenika works part-time as a city mail carrier and utilizes Cook County’s healthcare services. Not privately insured as a part-time employee, she says the support has been solid.
“So far it’s been pretty good. I haven’t had any problems. I haven’t received any bills—they cover pretty much everything,” she said.
But as the Trump administration works—diligently to chip away at ACA with the most recent blow an executive order to end subsidies to insurers selling plans to low-income customers.
The ACA was established in 2010 by President Barack Obama to make health insurance affordable to more people and to provide coverage to those with pre-existing conditions with rising premiums. More importantly, federal dollars were designated for public healthcare such as Cook County hospitals and clinics. Close to 294,000 purchased plans through the Obamacare marketplace in addition to 640,000 residents under Medicaid expansion.
Cook County Board President Toni Preckwinkle admits the hatchet job to kill President Barack Obama’s legacy will affect thousands of families under Cook County’s healthcare system.
“The Republicans are trying to cap Medicaid or cap your eligibility as an individual. So, if you have a lifetime cap on your Medicaid benefits and you’re a person who has some serious diseases like cancer and cancer treatments, you can pretty much blow your cap right away,” says Preckwinkle.
She says the federal government would allocate block grant money to the states where the states get to choose how they spend their Medicaid money as “opposed to individuals having access” to the program.
“Both of these things would be a nightmare for us here in Illinois and across the country,” Preckwinkle says. Frustrated at the possibility of significant lay-offs as a result of the sweetened beverage tax repeal, Preckwinkle knows the bigger fight is in Washington, D.C. “We’re in an environment in which the Republicans continue to try to eliminate the affordable parts of the Affordable Care Act but particularly Medicaid expansion, and one of the things that’s made our health care system that matter for our patients.”
Although patients can access good medical care at the county facilities, hospital staff carry various responsibilities. Donaldson says with a private insurer, there is a difference in the level of care.
“I was diagnosed at a community hospital on the South Side of Chicago. I was in a waiting room with low-income Black and Latino women even though I have really good insurance. Once I received my diagnosis, I thought, ‘I’m getting out of here and I’m going to Northwestern Hospital’.” She said although she wasn’t going to change the outcome, she felt she had a better chance of beating the odds at a reputable hospital. “I reflected on the fact that a lot of people don’t have the opportunity to get up and go to Northwestern, and I got to really see what this means.”
According to the study, poverty, less education, and a lack of health insurance are also associated with lower breast cancer survival rates. Breast cancer patients who reside in lower-income areas have lower 5-year survival rates than those in higher-income areas at every stage of diagnosis.
“Those socioeconomic things are things. When you go to a Northwestern, your radiologist is breast cancer trained, meaning they have participated in a fellowship where they may read 10,000 mammograms a year. A resident at a local hospital maybe doing x-rays for broken bones, sonograms and breast cancer. Northwestern may have a better process for follow up services like breast navigation. So being well aware of all those intricacies and nuances, I think makes me in a better position to speak to different audiences about the importance of touching on disparities and how you know there are differences and those differences matter.”
Local Organizations and Resources
One of the main reasons women from low-disparity communities are afraid to seek proper healthcare is costs. Organizations such as Metropolitan Chicago Breast Cancer Task Force and Screen to Live both are non-for-profit groups that help women with resources from free mammogram screenings and pap tests for uninsured women.
These organizations have joined a larger network of outreach programs as part of the Susan G. Komen for the Cure Foundation to form the Chicago Breast Cancer Quality Consortium. Chicago fashion designer Barbara Bates, a breast cancer survivor, formed her namesake foundation to bring awareness to African American and Latino women through fundraising efforts. Her foundation has raised $625,000 from her annual 5K Walk/Run for Sinai Health System.
For women who continue to battle through the storm while maintaining dignity, self-determination and a balancing act of a “new normal”—the support system of family, friends, co-workers and often faith keeps them focused on healing and recovery.
Whitehead was upfront in explaining her illness to her kids, rather than pretending everything is the same. She felt it wouldn’t be fair to them. “They’ve known from the time they [doctors] actually gave me the diagnosis; they have been there 100 percent. We talk about everything and we pray about it. We laugh about it and we cry about it. They have been there throughout the whole ordeal—even my 3-year-old.”
As an entrepreneur and lawyer, Donaldson feels she can make a difference through her company, TGIN, with partial proceeds from retail sales going to help educate “women with breast health and breast education around early detection awareness.”
Having meetings with organizations such as Outcome Health allows Donaldson to understand the changes in technology to bring better resources to neighborhood clinics such as large-scale tablets for doctors to “democratized information when it comes to health” and being able to weigh in on what it’s like for lower income women or someone who has a lower education who may need to beat this, she says.
“Women have to realize in this day and age what they need to do or be aware of to be inspired. There are more resources available to help people and to also help the families and support system of the people who are dealing with breast cancer.”