By Deborah Borfitz

March 11, 2025 | For Black women diagnosed with breast cancer, the grim reality is that they are 41% more likely to die of the disease than white women. African American women are disproportionately affected by triple negative breast cancer (TNBC), the most aggressive form of the disease, but that only partially explains the discrepancy in the mortality rate, says Latoya Bolds-Johnson, a physician assistant who works in emergency medicine and is a Black TNBC survivor. 

“A Black breast cancer cell may not be the same as a white or Asian breast cancer cell,” she points out. It follows that treatments developed without the inclusion of sufficient numbers of Black women will not necessarily work the same as they do for women in better represented groups. 

It is also well documented that Black women—like people with nontraditional sexual orientations and gender identities as well as women and people of color in general—face bias at the point of care, says Kristin Tolbert, associate vice president of health equity strategy at Jumo Health. This too often includes not receiving an invitation to join a clinical trial. 

Black women, as the testimony of Bolds-Johnson attests, are “typically dismissed and our pain levels are often not addressed.” She experienced this personally while giving birth to all three of her children, now 5, 8, and 10 years of age. 

But that pales in comparison to learning she had TNBC via a text in the middle of a busy ER shift during the pandemic, which was almost too much to bear. Reading her pathology report on the patient portal, the day before the radiologist called to nonchalantly confirm the news, she tried to convince herself that it was all a big mistake. After all she was only 36 years old and otherwise healthy with no comorbidities. The mammogram had been purely precautionary. 

“It took me about two months to really accept the diagnosis, " says Bolds-Johnson. “The most difficult part of this all for me was being a patient. I was a healthcare provider; I didn’t know how to be a patient.” 

Switching Doctors

Bolds-Johnson was understandably terrified to receive the life-altering diagnosis of TNBC on July 26, 2021, and even more so after learning it was stage 3. Not only was the cancer in her breast tissue; it had already spread to nearby lymph nodes. The radiologist told her to expect a call from a nurse navigator to set up her appointments for treatment. 

She immediately began looking at information online and studies in oncology journals, and the prognosis was so gloomy she eventually had to take a break from the research. But not before learning about immunotherapy drugs through a virtual symposium.  

Her treatment plan included chemotherapy followed by surgery, with no mention of immunotherapy. When Bolds-Johnson brought it to her oncologist’s attention, his response was to turn his computer screen and indifferently quote from the National Comprehensive Cancer Network clinical practice guidelines.  

She had chosen this doctor after seeking two other medical opinions, but her confidence in him began to wane as her knowledge about TNBC grew. “From the very beginning, I made it very clear that I wanted to be part of a clinical trial, but the idea was dismissed multiple times,” says Bolds-Johnson.   

To then not receive the immunotherapy drug was the last straw. “I fired him and got another oncologist, who said I think you should have this additional intervention,” she says. 

It is an apparently commonplace problem. Researchers recently found that that Black women are less likely than white women to receive immunotherapy treatment even after accounting for socioeconomic factors, although the overall survival rate between Black and white patients receiving immunotherapy is similar (JAMA Network Open, DOI: 10.1001/jamanetworkopen.2024.60243). 

Bold-Johnson’s new doctor was fresh out of fellowship and “a bit more progressive,” she says. Within two weeks, she was enrolled in a clinical trial at a nearby institution where immunotherapy was a standard part of the treatment regimen for all patients with TNBC. 

The circulating tumor DNA residual study that looked for any remaining cancer cells in people like Bolds-Johnson who did not have a pathological complete response to treatment at the time of surgery, although chemotherapy had succeeded in shrinking her tumor to a bit over 1 centimeter. The tumor and a cluster of lymph nodes were subsequently found to be clear, so she remained on standard treatment—nine cycles of chemo plus IV immunotherapy—without the addition of an experimental PARP inhibitor. 

Overall, Bolds-Johnson did well in the trial and experienced minimal side effects. She received her last cancer treatment in April of 2023 and her last scan, two months ago before her breast reconstruction surgery, was clear. 

“But of course the fear of recurrence is always in your brain,” she says. “It never leaves you.” 

Health Ministry

Early on in her treatment, Bolds-Johnson informally started an organization called Tatas 365 to give back to “people who may look like me” while exercising her healthcare provider muscles. It has primarily been a health ministry focused on raising awareness via social media about breast cancer and the importance of having Black women as participants in treatment trials, she says. 

The name reflects the need to “be aware of the tatas [slang term for breasts] 365 days of the year ... not just in the month of October,” says Bolds-Johnson. Women get diagnosed with breast cancer year-round and it’s deadly. 

Her outreach has tangibly helped at least a few women, including a 23-year-old Black woman with a concerning lump in her breast for several months whose healthcare provider assured her was “nothing.” Bolds-Johnson acted as her advocate during a virtual appointment and together they demanded that she get imaging. It turned out to be 2B breast cancer. 

“If she had been acknowledged before this, it could have been caught much earlier,” says Bolds-Johnson, who later helped the young woman get into physician assistant school. “She went through treatment and thought she was in remission... [but] a couple of weeks ago she called to say her cancer is back and now she is metastatic. I am truly devastated.” 

Creating ‘Safe Havens’

In lieu of creating her own nonprofit, Bolds-Johnson decided to partner with Touch, The Black Breast Cancer Alliance, founded by TNBC survivor/thriver Ricki Fairley. Bolds-Johnson hosts a monthly Touch Talk and serves as a community liaison. 

Fairley is “a fierce advocate” in the industry, whose ambitious mission is to eradicate black breast cancer, says Bolds-Johnson. Touch recently launched the Black Triple Negative Breast Cancer Sanctuary, a website dedicated to educating women of all colors about the devastating disease, including research updates and a long list of helpful resources. 

Touch also powers the When We Trial website to ensure women of color understand clinical trials and are getting registered for studies. “With a trial, we save lives, because if we are studied then our biology can be contributed to lifesaving modalities of treatment,” Bolds-Johnson says. “The fact is less than 3% of African Americans are even enrolled in clinical trials in this country,” mostly because they’re not being asked, she adds. 

Fairley went on a nationwide tour to do some convincing in person and Bolds-Johnson joined her at a stop at a large Essence Festival in New Orleans where they were passing out goodie bags outfitted in huge, attention-grabbing pink hats. The effort succeeded in getting several thousand women to formally express their interest in participating in a cancer trial. 

“It’s primarily about cancer, but people also need to know that even if they have lupus, diabetes, or another chronic illness, there are trials out there that can help them,” says Bolds-Johnson. When We Trial is but one of a handful of “safe havens” created by Touch; there are also support groups and breast cancer-related web series that air on weekly talk shows such as BlackDoctor.org that reaches millions.