By Nneka Samuel
“Women suffer in silence sometimes,” says Averl Anderson with such calm and nonchalance. You don’t have to see her face or hear the smile that reigns supreme in her voice to understand she speaks from experience. A proud woman of faith and minister at Great Emmanuel Temple in Buffalo, new York, Averl still can’t find the words to describe the way she felt when she learned she had triple negative, stage three breast cancer. The aggressive form of the disease is more prevalent in African American women, but Averl is quick to acknowledge she was never alone or pessimistic about her chances of survival. “There’s times when you feel there is no one you can talk to, but God understands and He cares.”
A long time volunteer with the Buffalo/Niagara Witness Project at the Roswell Park Cancer Institute, it was after Averl’s participation in a breast cancer screening project that she received her diagnosis. She got the fateful call while in church on new Year’s Eve, 2008. With only a few hours left in the year to spare, her doctor told her to “get somewhere fast.”
Losing her hair and nails due to chemo didn’t phase Averl. In fact, she never suffered many of the side effects to which chemo patients are prone and even made it a point to walk – two miles a day – while enduring a total of 38 radiation treatments. “Cancer had control of my life,” she says, “but I walked everyday. I refused to sit in a bed or chair. That’s the way I won in my spirit.” But it was Averl’s involvement in a 2009 federally-funded clinical study that helped make the difference. “It was because of two African American women that participated in that study that made [a] drug available for me and helped me to survive.”
Today, Averl is a champion advocate for I’m In, a campaign started in early 2014 by the Pharmaceutical Research and Manufacturers of America (PhRMA) and the national Minority Quality Forum to address the diversity disparity in clinical trials. I’m In helps researchers find better treatments to fight diseases that affect certain populations disproportionately. African American women, for example, are twice as likely to lose their battle with breast cancer, than their Caucasian counterparts. And while African Americans make up 12 percent of the U.S. population, they represent only 5 percent of clinical trial participants. This has to change.
Limited access to and awareness of clinical trials is partly to blame for these alarming statistics. But Averl suggests fear also plays a role. “We have a lot of mistrust in the medical community,” she says. Unlawful medical testing on African Americans, like the men involved in the Tuskegee Experiment, is well documented and has made some in the Black community leery of medicine and of seeking professional care. “I talk to a lot of people and they said ‘they’re not gonna experiment on me,’” says Averl. “But today we can be accountable; we can take charge of our health. It’s not the doctor telling you what to do. We have the option of saying ‘yes’ or ‘no.’”
Anyone, from the healthy to the sick, can participate in clinical trials. I’m In’s secure online hub, The Clinical Trial Engagement network, connects patients and advocates alike with clinical trial sponsors, healthcare professionals and organizations nationwide, all poised to beat the diseases that plague millions.
Averl recalls when she was first diagnosed, how little information there was available about Black women dealing with breast cancer. “I went to Roswell and got a book from their library and looked up African American women. [The book] had just one paragraph. I was blown away. The data isn’t there.” That’s why she believes African Americans need to be involved.
This past February, Averl celebrated her fifth year of being cancer-free. Two short months later, doctors would tell her she has stage 4, inoperable cancer. But Averl is hopeful. Like any grandmother, she plans to see her grandchildren grow up. Clinical studies will possibly make that happen. Without it, she says, it won’t.
Through speaking engagements supporting the I’m In campaign and telling her story, Averl hopes that women will be more accountable for their health. “People are more concerned with having a job, trying to make money, putting food on the table,” she exclaims, “Health is the priority! Not the other things we put ahead of that.” Averl also can’t help but think of her granddaughters and the young women she works and worships with. She believes they need an opportunity to have the best scientific knowledge and research available to them now and in the future. Averl initially stated, “Women sometimes suffer in silence.” Her ease in uttering that statement comes from knowing that we don’t have to.
What do you do to feed your mind, body and soul?
In addition to praying, which Averl says is essential, she feeds her mind, body and soul by being a Chaplin at the Roswell Park Cancer Institute. “I know what the patient and the family feel,” says Averl. “The Lord has put me in a position to be able to walk them through their journey.”
Photo courtesy Roswell Park Cancer Center Institute