Raising Awareness of Clinical Trial Options for African-American Women
Averl Anderson, 62, is a minister with Greater Emmanuel Temple in Buffalo, NY, and a chaplain at Roswell Park Cancer Institute. She was diagnosed with stage III triple-negative breast cancer in 2009. Averl did a Q&A for Breast Cancer Clinical Trials Matter to You, to discuss advocacy for clinical trial participation among African-American women, her experience in a trial for bevacizumab (Avastin), and more.
Q: How did you learn about the clinical trial you joined?
Averl: My oncologist mentioned it in 2010 as a treatment option for me in combination with chemotherapy.
It was a double-blind study, but I eventually learned I was in the treatment group receiving Avastin.
Q: What was it like being in the trial?
Averl: I was in the trial for about five months. The first two months was every two weeks, and for the last four months it was once a week for three months.
I experienced side effects like neuropathy, or tingling in my feet, hair loss and changes in my finger nails. Thankfully, I didn't experience some of the severe side effects like vomiting and diarrhea.
The cancer had responded well to the treatment. The FDA withdrew approval for Avastin in November 2011, saying it was not effective. I thought that was unfortunate because I'm still free of cancer, so I feel the treatment was at least effective for me.
Q: What were some of the concerns you had before participating in the study?
Averl: I was little apprehensive when my doctor first brought up because my mind immediately went to the Tuskegee experiment and exploitative research.I also worried about experiencing extreme side effects.
My doctor had a clinical trial nurse at the Roswell Park Cancer Institute come talk to me and answer the questions I had. She gave me information, I took home and went over it with my family, and later felt reassured enough to agree to join the trial.
Q: What do you think is the biggest hurdle to clinical trials participation?
Averl: Mistrust. Culturally, some people have experiences that make them extra skeptical about clinical trials.
Broadly speaking, if you look at the television commercials for certain medicines, they list all of these severe side effects. For some people, if that’s what you experience with FDA-approved medicine, what will happen when you take a drug that’s still being studied?
Q: How can breast cancer advocates help build trust about trials?
Averl: Peer advocates. It’s very effective to have someone who’s been through a clinical trial stand in front of you and tell you all about it.
I speak to a lot of focus groups and church groups about my experience. I worked with the Pharmaceutical Research and Manufacturers of America (PhRMA) and the National Minority Quality Forum as a spokesperson for the I’m In campaign. I’d often speak to minority women about clinical trials because they are the ones that don’t always participate.
When I talk to groups, the first I ask is, "What would you say when I say the words ‘clinical trial’?” So many of the women in these groups shout, "You’re not going to experiment on me!"
I stress to them the importance of being accountable for yourself and understand your options, one of which may be clinical trials. I tell them it's important to get second opinions, even third opinions, if necessary.
Unfortunately, a lot of people get scared because they listen to others' stories and hearsay. Everybody has a story, and when negative stories make the rounds, it makes clinical trials sound scary.
We have to spin it around with stories that highlight the truths about clinical trials. That's why I share mine.
Q: You’ve become an advocate for African-American women accessing clinical trials. What inspires that advocacy?
Averl: In fall 2015, a report found that the rate of breast cancer diagnoses among African-American women has been rising. I’ve noticed more and more people I know getting diagnosed with the disease. A number of these women don’t always know what to do or who to call when they get this news, let alone know that clinical trials may be an option available to them.
I joined the I’m In campaign because it gave me the chance to raise awareness through my story. My picture was on bus stops and billboards all over Buffalo, NY. Others could see me and read a little bit about my story and why I joined a clinical trial.
Q: What were your thoughts on participating in this clinical trial as someone with triple-negative breast cancer?
Averl: It felt like a lifesaver. I felt like this trial gave me other options beyond the standard care, because there isn’t a targeted therapy for triple-negative disease. It gave me hope.
A triple-negative diagnosis can be a pretty harsh one. Clinical trials offer people with triple-negative breast cancer another lifeline and another opportunity to feel like they're doing everything they can to treat the disease or prevent recurrence.
What tips do you have for someone who’s trying to find out how to access clinical trials, or decide whether a trial is right for them?
Websites like ClinicalTrials.gov and centers and organizations like Roswell Park Cancer Institute or LBBC provide helpful resources. Tell your oncologist you are interested in learning about clinical trials. Your doctor can give you booklets or handouts, or connect you with a clinical trial nurse or someone who can walk you through it and answer your questions.
Try to connect with others who’ve participated in a trial and ask them questions – you may discover this person or persons to be helpful to chat with about other cancer issues, too.
If you do all your research and get answers to all of your questions, you may discover that a trial can help save your life or enhance your quality of life, it may be worth participating.
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