In my breast cancer advocacy work, I meet a lot of awesome passionate people that work for pharmaceutical companies. They have dedicated their careers to saving lives and supporting patients. In a recent meeting with a phenomenal pharma team, I presented the devastating statistics about black women and breast cancer. Here’s a snapshot for reference: African American women have a 31 percent breast cancer mortality rate—the highest of any U.S. racial or ethnic group. Black women are 42 percent more likely to die of breast cancer than white women. Our recurrence rate is 39 percent. White women had a 34 percent decrease in mortality versus black women, who had only a 2 percent decrease from 2007-2011.
Black women younger than 35 get breast cancer at twice the rate and die at three times the rate. We get triple-negative breast cancer at twice the rate, have poorer outcomes and there’s no therapy to prevent recurrence. And our clinical trial participation is minimal, thereby we don’t have therapies that are effective for our physiology.
Their reaction was, “Wow, Ricki! We are working hard every day to develop cancer therapies, but what can we do?”
Here’s something you can do: How about adopting the HIV model? Merck, Johnson & Johnson, Gilead and Viiv (formerly Glasgow Smith Kline) and other pharma took on HIV as a mission. Though there is still no cure, people living with HIV are thriving and living long lives. HIV is no longer a death sentence because of pharmaceutical efforts. Approximately 1.1 million people in the U.S. are living with HIV today.
So I am challenging my pharmaceutical partners to start a movement! Take on black breast cancer as a specific disease state, not just breast cancer, but black breast cancer.
There are approximately 2.8 million black women with breast cancer in this country. Let’s focus research efforts on black women specifically to comprehend our physiology clearly. Make the commitment to understanding what makes breast cancer different for black women. I am not a scientist, and I know that I may be oversimplifying a very complicated illness, but my grandmother always told me, “If you don’t ask, you don’t get.”
So pharmaceutical companies, are you up to the challenge? Are you willing to tackle all aspects of this disease state relative to black women?
What makes black breast cancer a different disease? Let me break some real issues for you about what differentiates black breast cancer from breast cancers in other women:
Black women are stressed out. Let’s understand fully the impact of stress from the social determinants of health, stress from being the main breadwinners for our families, stress from being single moms (77.3 percent of black moms are going it alone), stress from our Superwoman, save the world, take care of everyone psyche.“Stress has a profound impact on how your body’s systems function … stress makes your body more hospitable to cancer,” said Lorenzo Cohen, Ph.D., professor of general oncology and behavioral science and director of the Integrative Medicine Program at MD Anderson,
“Chronic stress also can help cancer grow and spread in a number of ways,” says Anil K. Sood, M.D., professor of gynecologic oncology and reproductive medicine at MD Anderson. A report published in the Journal of Psychosomatic Research by scientists from the University of Rochester Medical Center and Stanford University School of Medicine, identified that “extended periods of stress and trauma … may interfere with the body’s ability to fight off cancer progression … and potentially make the body more susceptible to recurrence of cancer.”
Let’s look at genetics, genomics and biomarkers. What role do they play in black breast cancer? In my personal experience as a triple negative breast cancer survivor, I don’t have any known genetic mutations, but is there something there that hasn’t been looked at, evaluated and a labeled yet? Is there some science we are missing with this testing, because we frankly don’t have enough data on black women? A recent survey conducted by Sisters Network Inc. identified that among African American survivors, there is a huge knowledge gap around genomic testing, and it is not being readily offered to black women by their health professionals.
- 61 percent had never heard of genomic testing.
- 83 percent were not offered genomic testing by their health professional.
- Those who were offered genomic testing (17 percent) did get the testing done.
- For perspective, 70 percent were offered genetic testing by their health professional. Seventy-six percent had genetic testing done, demonstrating that 6 percent sought out the testing themselves despite it not being offered by their physician. Of those tested, 11 percent have a breast cancer gene.
Let’s research obesity and its potential causal factors. According to the Centers for Disease Control and Prevention, 82 percent of black women are overweight or obese. What role does diet and exercise play, and not just any diet, a black woman’s diet and level of exercise?
Let’s look at life stage and age. What’s going on the lives and bodies of black women younger than age 35 that would make them more susceptible to breast cancer?
Let’s study the quality of care for black women. Relative to breast cancer incidence, treatment and mortality is inferior. Where are the disconnects? Where are we failing black women? The National Academy of Medicine released a report documenting that “racial and ethnic minorities receive lower-quality health care than white people, even when insurance status, income, age and severity of conditions are comparable.” It concluded by describing an “uncomfortable reality”: “Some people in the United States were more likely to die from cancer, heart disease and diabetes simply because of their race or ethnicity, not just because they lack access to health care.”
Let’s understand the real factors that drive us to being diagnosed at later stages. According to the American Cancer Society, only 54 percent of breast cancers in black women are diagnosed at a local stage, compared to 64 percent in white women.
Triple-negative breast cancer remains a force to be reckoned with for us. Black women have 2.3 times higher odds of being diagnosed with triple-negative breast cancer. Among women who were diagnosed with breast cancer, those diagnosed at late stages were 69 percent more likely to have triple-negative cancer than other types. Why are our incidence and mortality numbers so high?
African American participation in clinical trials is extremely insufficient. We are reluctant to engage in clinical trials and may refuse treatment as a result of our own race-related experiences. According to U.S. Census data, African Americans represent 13.4 percent of the U.S. population, yet the FDA reports this population makes up only 5 percent of clinical trial participants.
Let’s get real about the actual science of developing and testing drugs for black breast cancer look like Instead of letting the tail wag the dog, with black women being a small percentage of clinical trial research, make the research about black women. Conduct studies with just black women.
According to Farid Vij, vice president of Corporate Development for Ciitizen (whose mission is to provide patients with control of their comprehensive health information), “Data is what will determine which patients are eligible for which trials, and data will be the driving force behind any research for new drugs and therapeutics. This is how we move the needle. Research for patients, by patients.”
Let’s change the vocabulary for clinical trials so black women feel like research is safe and can be trusted. Frankly the words “clinical trials” are disturbing. The word “clinical” sounds like mice in a petrie dish, and the word “trials” sounds like failure. Most black women I talk to believe “placebo” means “I’m going to get the drug that doesn’t work.” They don’t understand the basics of what a clinical trial is and how they work, so they have minimal knowledge of what standard of care is.
Black women should not be dying of breast cancer at the levels we are. The industry needs to hunker down and focus specifically on black breast cancer. It is obviously a disease state unto itself, and we are now demanding attention.
Karen Eubanks Jackson, founder and CEO of Sisters Network® Inc., says, “In our 25 years of fighting this fight, I have never seen enough focus given to black women and breast cancer. We fight a different fight that deserves committed research that matches the devastation we face.”
My awesome physician and sister friend, Regina Hampton, M.D., president of Doctors Community Hospital and co-founder and chief medical officer for Breast Care for Washington, D.C., says, “We need to look at these statistics and sound the alarm. Black women need access, trials and answers to figure out why there is not more progress in breast cancer statistics. We need to find innovative ways to make clinical trials available to this community that has deep mistrust in research.”
Pharma, are you with us? Are you willing to step up to this challenge? What’s stopping you from joining us in this movement to take on black breast cancer?
Let’s save some lives!