By Genoa Barrow | OBSERVER Senior Staff Writer
Cancer treatments aren’t a one-size-fits-all kind of thing, particularly when it comes to African American women. The California Black Health Network (CBHN) recently presented a virtual panel discussion, bringing together medical professionals and survivors to stress the need for more diverse participation in clinical trials.
The CBHN’s latest installment of its Health4Life Series was “Breast Health: Women, Wisdom, and Warriors.” A large part of the discussion centered around a study, Women Informed to Screen Depending On Measures of risk — known colloquially as the WISDOM study – that stresses the importance of being proactive about breast health, breast screenings for Black women and the need for more Black women to get involved with research.
“We unfortunately are about 40% more likely to die from it, so it’s important for us to learn who gets breast cancer, why they get it, what type of breast cancer they get, and what we can do to reduce women’s risk of getting the disease and definitely dying from it, especially Black women,” said CBHN Executive Director Rhonda Smith.
Being proactive can prolong and save lives, added Smith, who also is a breast cancer survivor.
The webinar included remarks from Howard University oncologist Dr. Sara Horton and survivor Ricki Fairley, who turned her pain into purpose and founded the organization TOUCH: The Black Breast Cancer Alliance. Fairley also is a founding member of Black Data Matters in partnership with breastcancer.org.
“Ricki works very hard and fiercely to encourage and elevate the importance of Black women participating in clinical trial research and in January of this year, she started the When We Trial movement to really change the game on Black women participating in clinical trials and to improve outcomes and change the statistics around the 40% difference in survival rate for Black women vs. White women,” Smith said.
Fairley is a 10-year survivor of triple negative breast cancer (TNBC), described as the most aggressive form.
“I did a double mastectomy. I did six rounds of chemo,” she shared.
“That was the standard of care at the time. I did six weeks of radiation and my doctor said ‘OK, now you have no evidence of disease.’ Almost a year to the day of my diagnosis, my cancer came back on my chest. My doctor said, ‘OK, Ricki, you are now metastatic, get your affairs in order. I don’t have anything else for you.’”
Fairly was told she’d “probably have about two years” to live, but says dying wasn’t all that convenient to her life. She wanted to be around to see her daughter graduate from college. Nope. That prognosis wasn’t acceptable.
Fairley’s doctor didn’t know a lot about the kind of breast cancer she had, but Fairley wasn’t going to let that lack of knowledge determine her future.
“I learned that she had really only had two cases of triple negative breast cancer and both of the women died after nine months. So I went on Dr. Google,” she said of her medical searches on the Internet.
“On the third page of Google after (it) saying ‘you’re gonna die, you’re gonna die, you’re gonna die,’ I found the Triple Negative Breast Cancer Foundation. I called them and they found a doctor for me and she was probably one of about five doctors in the country that were doing research on triple negative. I went to her for a consultation and actually my doctor went with me because she wanted to learn; she was pretty young.”
The specialist put her on two medications. Both were experimental for TNBC at the time, but today they’re standard care, Fairley said.
“I did a lot more chemo and I’m still here. I’m a crazy advocate on fire to get this work done and to talk about breast cancer and to talk about Black breast cancer,” she continued.
Breast cancer is an equal opportunity disease in terms of getting it, but Black women have a 41% higher mortality rate than White women. There are other disparities as well. Fairley can list a litany of them.
“Black women like me who have had breast cancer, we have a 39% higher rate of recurrence than White women. Black women like me, survivors, we have a 71% higher relative risk of death than White women,” she said. “Black women under 30 are 38% more likely to be diagnosed with breast cancer and 2.6 times more likely to die of breast cancer vs. White women. Black women under 35 get breast cancer at twice the rate of White women, so we use statistics from 30-year-olds and 35-year-olds and under,” she said.
That’s well before women get their first recommended mammogram at age 40.
According to health experts, TNBC has the highest mortality rate. It affects Black women at three times the rate of White women.
“We don’t really know why,” Fairley said. “We die from it at very young ages and we get diagnosed at late stages. It’s a horrible disease.”
Only in the last two years, she said, have drugs specifically designed for TNBC been readily available.
“We really haven’t had a drug for our disease. It’s kind of the luck of the draw,” Fairley said.
The blame for the disproportionate breast cancer outcomes often is placed on social determinants of health, such as poverty, lack of access to care and racism in medicine.
“But it’s really because we don’t have the science,” Fairley said.
She points to a 3% African American participation rate in clinical trials.
“If you look at the clinical trials for the drugs that we currently have available as standard of care, guess what? They weren’t tested on Black bodies, they were tested on White women. So, hello, the drugs don’t work for us. They’re not putting our bodies to test, so the drugs aren’t working.
“I want that bottle to say this drug is specifically for Black breast cancer, for Black women. We have to make that happen and the only way we’re going to make that happen is by advancing the science,” Fairley continued.
The presentation was held during Black Family Cancer Awareness Week. Dr. Horton spoke about the disparities and the importance of early detection. She is an associate professor of medicine at Howard University Cancer Center, the former director of clinical trials at Howard University Hospital, and serves as executive director of access and diversity for the Quantum Leap Healthcare Collaborative.
“The important part of clinical trials these days is trying to increase that body of information on Black patients so that we can further identify what will work in a specific patient, if they’re Black, if they’re White,” Dr. Horton said.
“We know a lot of information about White patients who have had breast cancer, but we are really lacking in the data about Black patients who have had cancer. When a woman is screened for breast cancer, meaning she is sent to get a mammogram, our guidelines, pretty much across the board, recommend starting at 40 – some 50, but most people 40, and yearly mammograms.”
Not everyone needs to be screened the same.
“Some women have indicators that they may develop breast cancer and are at higher risk than others and may need to be screened more often or with different modalities. Some may be less likely to develop breast cancer and may not need all that screening exposure to radiation. The challenge is to find out if there is a way to identify how we can stratify women for screening for breast cancer,” Dr. Horton said.
“What we did at the WISDOM Study is to try to develop an algorithm that will better help identify women who are at a higher risk of breast cancer and to give a more personalized recommendation for screening. Basically, we’re trying to revolutionize breast cancer screening to improve women’s health.”
In the U.S., 280,000 women are diagnosed with breast cancer annually.
“That’s a risk of one in eight women developing breast cancer in their lifetime,” Dr. Horton said.
The Centers for Disease Control and Prevention and breastcancer.org both report that breast cancer incidence rates started to decline in 2000.
An estimated 42,000 U.S. women died from breast cancer in 2021, Dr. Horton said.
“We’re getting better,” she said. “The mortality rate is going down. We’re getting better at treating breast cancer, but one of the things that we’re finding is that the improvement in survival and mortality is not being seen in Black women at the rate that we’re seeing it in other women and that’s a concern.”
The Health4Life Series continues at noon Thursday, July 14, with “The Impact of Intergenerational Trauma on the Mental Health and Well-Being of Black Youth,” a free webinar focused on mental health. Register online at cablackhealthnetwork.org/health4life.