Underrepresentation in Clinical Trials: The Racial Disparities of Breast Cancer Research

EP: 1.Stories of Metastatic Breast Cancer Diagnosis

EP: 2.Social Impact of Metastatic Breast Cancer Diagnosis

EP: 3.Coping with a Metastatic Breast Cancer Diagnosis

EP: 4.Self-Care in Metastatic Breast Cancer

EP: 5.Self-Inventory for Metastatic Breast Cancer

EP: 6.Importance of Support Groups in Metastatic Breast Cancer

EP: 7.Finding a Support Group for Metastatic Breast Cancer Patients

EP: 8.Racial Disparities Faced by Women of Color with Breast Cancer

EP: 9.Addressing Racial Disparities in Breast Cancer

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EP: 10.Underrepresentation in Clinical Trials: The Racial Disparities of Breast Cancer Research

EP: 11.Overview of Clinical Trials

EP: 12.Locating Metastatic Breast Cancer Clinical Trials

EP: 13.Clinical Trial Considerations in Metastatic Breast Cancer

EP: 14.Role of Patient Advocates in Metastatic Breast Cancer

These are the experiences and opinions of panelists, not physicians.

Shirley A. Mertz, MA, JD: Another issue that I know I've tried to learn as much as I can, and we will talk about this in the next segment clinical trials, but I'm appalled that clinical trials rarely include women of color. I just think how can that be especially, as you pointed out Sheila, when many African-American women might be having a subtype of triple-negative breast cancer. There's so much still to be done to find treatments for that type of subtype that are not just chemotherapy. There is so much to be understood about what drives that type of subtype that we need people on clinical trials. And Sheila, do you in your work on behalf of women of color, do you have some comments that you think could cause more people of color to join clinical trials that you might want to share at this point?

Sheila McGlown: I just think that sometimes clinical trials aren't introduced to patients, and it starts with the doctor-patient relationship. I've been on a clinical trial for three years, it's working, I'm stable and actually, the drug that I'm on was FDA-approved in 2019. It's a drug that's not only used for breast cancer, but it's also used for stomach cancer. Not only did it I wouldn't say extend my life because it wasn't the last resort, so we need to cut that myth because it's not always the last. It wasn't the last resort for me, but my doctor thought I would make a good candidate for it and we talked about it and she explained to me, then she called in the clinical trial coordinator and the clinical trial coordinator explained, but it's up to researching to recruit black women. I was reading that the FDA doesn't require black women in clinical trials. They can just approve a trial with all one race if they want it and I was just reading and I was just like "Man, I didn't know that" and we need to be asked. That needs to be a part of standard of care even if it's your second or third meeting. What's wrong with a doctor saying, "Hey, maybe this clinical trial is coming up the line" because most times, people don't even know what a clinical trial is or it's never been explained to them and it was I didn't know what it was but until my doctor talked about it, I was like "OK". And I said, for one, I could further research and this is top-notch research as you can see, because they're talking about this drug is going to be another Herceptin.

Shirley A. Mertz, MA, JD: That's awesome.

Sheila McGlown: Yes.

Shirley A. Mertz, MA, JD: And I think you were very fortunate that your doctor took the time to explain it to you as you pointed out. The other thing is that I think you mentioned something that I feel some women believe that if you're on a clinical trial it is your last resort. But clinical trials as we'll talk about in just a couple of minutes can be-

Sheila McGlown: Oh. Sorry.

Shirley A. Mertz, MA, JD: No, that's good. No, we want to talk about it here too. You're exactly right, there aren't women of color on clinical trials. And it's not only for African American people but it's also for the Latinx group of people. I think what I understand of clinical trials as I've tried to educate myself, is that when a clinical trial is suggested to you, you could ask the doctor, "Well, what kinds of toxicities or effects did people have who took this drug? Well, if there are only white people on the clinical trial that resulted in this drug being approved and I'm Latinx or African-American then I have trouble relating to just the experience of white women." There are differences in genetics. I happen to know a very famous lady from Nigeria who has worked on this subject. She's an oncologist. And she says there are genetic differences that can contribute to how people experience different drugs. I think this is all very, very important and we do need, even if we're not African American, as Lisa has said and as you have said, Sheila, everyone has a right to good healthcare. They should have access to quality care, and they're a human being. I'm in a group where a gentleman who is in Brazil, I couldn't believe he said this. He said, "We must stop the dying among women who have breast cancer because," he said, "Women are the backbone of society." They are the mothers and wives. Children who have mothers grow up stronger, they're certainly better fed, but they are better able to cope with their future in society. I was really touched by that because you sometimes can think, "Well, we have breast cancer, and we happen to be women." But it's really important that women not lose their life to this disease and we all need to pull together.

This transcript has been edited for clarity.