mTNBC Research Needs Black Women

“In clinical trials, participants are very well-monitored and the entire treatment and follow-up is tightly regulated,” Newman says. 

Research can:

• Offer you better medication or maybe the only medication you haven’t tried yet.
• Help explain why certain people or groups are more likely to get the disease than others and lead to more effective prevention and screening methods for these groups.
• Reveal whether certain treatments work for everyone or only certain groups and lead to better, more customized treatment recommendations for Black women.

Why Black Women Aren’t Getting Into Breast Cancer Research 

Historically, Black people have faced untold racism and discrimination in health care. They’ve also been victims of abuse and unethical treatment in the name of medical research in the past. The Tuskegee Syphilis Study and the case of Henrietta Lacks are some of the best-known incidents, but they are far from the only ones. So it’s no wonder Black people might not be the first to raise their hands to have new cancer drugs tested on them. 

But there is so much more to the lack of diversity in medical research than simply an individual’s lack of trust in the system. 

“I’m not saying we can’t talk about mistrust,” says Reid. “But we have to remember that if you can’t access a clinical trial, whether you are Black or white, you’re not going to be on the clinical trial. It’s as simple as that.” 

The Access Problem

If you want to join a clinical trial, perhaps for a new cancer drug being tested, you have to go to a hospital offering that trial. And you might have to go there often. Clinical trials may mean more tests, monitoring, and doctor visits than regular care. This makes trials expensive and complex. For that reason, researchers don’t run them at every hospital. Clinical trials are usually at large-scale medical centers connected to medical schools. 

Unfortunately, these hospitals are rarely the ones where Black people are most likely to get their cancer care. Up to 85% of people with cancer, regardless of race, use community hospitals close to home. Research shows Black people in particular are more likely than others to get their care at low-resource or underfunded facilities, not places that host clinical trials. 

“Some patients might be able to take off work and drive 2, 3, 4 hours or get on a plane and travel to academic medical centers like Vanderbilt and MD Anderson, but not everybody can do that,” Reid says. “That’s more of a privilege.” 

Doctors’ Assumptions About Black People

Many doctors, studies show, don’t tell Black patients about research opportunities as often as they tell white patients. They might assume Black patients won’t want to be part of research because of medical mistrust. Some think they are less likely to stay on top of all the requirements, like taking new medicines and making it to all the appointments. 

This unfair assumption keeps Black people out of studies and scientists from learning the unique ways that cancer and its treatments affect them. 

“We have no right to make assumptions about what a patient might be interested in or how they might respond to information about a clinical trial,” Newman says. “If they are an appropriate candidate for a trial, that option has to be offered to them regardless of what they look like.”

The national Just Ask campaign aims to make sure doctors tell all their patients about opportunities to enroll in cancer research. But if your doctor doesn’t tell you about upcoming research, consider mentioning it to them.

How to Get In on Breast Cancer Research

Whether you get your care at an academic medical center or a nearby oncology clinic, ask your doctor if there are clinical trials or other studies that you might be eligible for. 

Clinical trials are mostly for testing medication, medical devices, procedures, or other therapies. If you’re thinking, “I don’t want to be a guinea pig,” there are other ways to help without taking new drugs.

For example, you could sign up for a genetic study about Black women with metastatic triple-negative breast cancer. You’d simply give blood, saliva, or tissue from a tumor. Other research might only require that you answer periodic surveys about your health, family history, lifestyle, and treatment to give researchers more clues about how or why breast cancer affects Black women differently. 

Look for opportunities to participate in research here:

• Clinicaltrials.gov: A government-sponsored database of information on clinical trials that you can search based on your location and disease.
• Outcomes4Me: A website and smartphone app that connects people with clinical trials based on their location and medical records.
• National cancer research organizations such as the American Cancer Society, National Cancer Institute, and Susan G. Komen for the Cure.