During the pandemic, Elisabeth Omilami was so focused on helping people in need that she neglected to take care of herself.
The CEO of Hosea Helps hadn’t had a mammogram since 2019. Then in July, during a yearly physical, her physician discovered several tumors. She was diagnosed with Stage III breast cancer, resulting in a full mastectomy of her right breast and removal of several lymph nodes.
Omilami, 70, is going public with her condition to draw attention to the breast cancer vulnerability of Black women, who often have less successful treatment outcomes than White non-Hispanic women. She is undergoing several rounds of chemotherapy before having six weeks of radiation therapy.
“Now I’ve got a whole new mission,” Omilami said this week. “What about those women out here in the world who don’t have health insurance or a husband or family to help? Where are all the free mammograms and follow-ups? It opened a whole new world of disparities to me.”
The daughter of the late Civil Rights leader, The Rev. Hosea Williams, Omilami hopes to include a mobile mammogram station at the well-known Hosea Helps food and meal distribution events at Christmas and on the King holiday. She talks to every woman she can about the importance of getting screenings and adequate treatment.
There’s a reason why.
While breast cancer death rates overall in the nation have dropped by 43% from 1989 to 2020, Black women continue to be 41% more likely to die from the disease -- even if they are diagnosed at the same stage as women of other races, according to the American Cancer Society.
In fact, since 2019, breast cancer has become the leading cause of cancer-related deaths among Black women, surpassing lung cancer.
Black women are diagnosed with breast cancer at the same rate as whites, but “there are major barriers to go from screening and diagnosis to timely treatment,” said Dr. Arif Kamal, chief patient officer for the ACS.
Barriers include being under- and uninsured, poverty and transportation issues
For example, Black women are less likely to receive chemotherapy within 60 days of surgery, Kamal notes.
They’re less likely to receive a certain standard of care and are less likely to be offered enrollment in a clinical trial where groundbreaking treatment is often available, according to Kamal.
That may be partly because of an implicit bias on the part of the physician that a Black patient would be less likely to be interested in participating in a clinical trial, he said. However, research has shown that, if offered, Black women and others would participate at roughly the same rate, said Kamal.
Other research, though, finds blacks still lag in participation overall. In 2020 more than 32,000 people took part in drug trials and 75% were white, 11% were Hispanic, 8% were Black, and 6% were Asian, according the the Food and Drug Administration.
“It starts with a discussion with your primary care physician and we have to be advocates for ourselves,” said Dr. Jade Jones, an assistant professor in the department of hematology and medical oncology at the Emory University School of Medicine and a breast cancer specialist.
Credit: contributed
Credit: contributed
She said there are three major types of breast cancer, the most common being hormone receptor positive, which constitutes 80% of breast cancers. HER2-positive represents 10% to 15% and triple-negative comprises 10% to 15% of breast cancers, according to Jones.
Black women have the highest rate of triple-negative breast cancer, the most aggressive of the three, Jones said. It also has the highest risk of recurrence in the first three years after diagnosis and is more likely to be resistant to therapy, she added.
Black women are also more likely to have inadequate health insurance to access screenings, follow-up care and therapy. And they have worse outcomes compared to non-Hispanic whites.
Jones said recent studies have shown that even among insured Black women who have hormone receptor-positive breast cancer, they have worse outcomes compared to non-Hispanic whites.
Jones recommends that women start getting mammograms at age 40. However, she said, some women need to start getting mammograms in their 20s and 30s, depending on their risk factors,” she said. “Is there a family history? Does anyone in your family have the BRCA gene? ”
Obesity and lack of exercise can also play a role.
As families gather for the holidays, experts urge all women to talk to their relatives about their family’s health history. It can be a touchy topic in some families but perhaps a mother, aunt or grandmother had breast cancer -- or even a male relative.
Omilami said her family does not have a history of breast cancer, although her father, who died in 2000, had prostate cancer that later spread to his kidneys. Her maternal grandmother had vulvar cancer.
Omilami’s prognosis is good, said Dr. Rogsbert F. Phillips, who performed the surgery.
Breast cancer “doesn’t have to be death sentence,” she said. ”One of the things I tell patients is that they have more control over this disease than they think they do.”
Omilami, a mother of two and grandmother of five, said the experience “has been challenging and scary.”
When she was diagnosed, she wondered if the cancer would kill her. What would happen to her family, Hosea Helps and the people they serve?
She and her husband, Afemo Omilami, first shared the nerve-racking news with their family. “When you have cancer, it’s not just you,” she said. “It’s your husband and your family. "
Phillips, she said, queried her about her spiritual and mental health, both are which are critical to outcomes.
“Did I really believe in what I had been hearing in Christian circles most of my life?,” Omilami asked herself. “I had to examine my whole Christian walk. I found out that I do believe in miracles. I have been walking by faith for the organization and for other people, now it has to be for me.”
The chemotherapy has zapped her energy. She’s lost most of her hair and usually wears an African gele, or headwrap, when she goes out. Her weight is down as much as 15 pounds. Meat tastes like leather. She can’t taste seasonings in foods like greens.
While doctors want her to slow down, she feels guilty when she does because there’s so much need among people struggling with the higher cost of food and gas.
“I think the heart of my wife is to always try to turn what is happening to her into something that can be a blessing to somebody,” said Afemo Omilami. “Sometimes you hit a place where you’re kind of cruising along, then life will ask something more of us. It’s her destiny.”
Free or low-cost mammograms:
CDC offers information about free or low-cost mammograms. Find out if you qualify.
Clinical trials
If interested in finding out about clinical trials, first talk with your doctor. You can find information about clinical trials at www.ClinicalTrials.gov.
What you should do between screenings:
Talk with your doctor first. Let him or her know your concerns.
Know your body. Do manual exams weekly or two weeks after your period. Do you notice any changes? If so, contact your doctor.
If you have a discharge or unusual pain, schedule an appointment with your doctor.
Credit: Jenni Girtman
Credit: Jenni Girtman
Credit: Jenni Girtman
Credit: Jenni Girtman
Credit: Jenni Girtman
Credit: Jenni Girtman
About the Author
