Patriarchy isn’t a word that Ophira Ginsburg expected to be at the center of her work as a cancer researcher but, like an infection, it was invading her everyday work as a medical oncologist. There were times when she saw people treat women’s lives and health with cruel indifference. There were times when she saw women who struggled to access care because of violence or social obligations or stigma. There were the women missing from academic departments, funding committees, and medical leadership and there was the missing knowledge of women’s health and cancer.
All of these things are part of what Ginsburg, a senior adviser at the National Cancer Institute Center for Global Health, calls the nexus of women, power, and cancer. Ginsburg and colleagues worldwide joined together to form a Lancet commission on women and cancer to study this nexus a few years ago. On Tuesday, the commission published a lengthy, wide-ranging report dissecting many of the ways that gender inequality affects cancer care for women around the globe.
“The truth is in many ways and many places, women have very little choice to obtain care, even if care is available, even if poverty isn’t the primary issue, because of power dynamics,” Ginsburg said. “Because of access to knowledge, who is the locus of decision-making in the family, and access on the financial domain as well. Patriarchy dominates every aspect of these issues.”
The commission conducted original research, reviewed literature, and also published an epidemiological study estimating preventable and treatable cancer deaths worldwide. The report has 10 main findings, including that women are more likely to go bankrupt from cancer than men and that 2.3 million deaths could be averted if all women had optimal cancer care, primary prevention, and early detection.
“On the whole, cancer is less preventable in women than in men — that’s a very surprising statement for most of my colleagues, including me,” she said. “That’s a very important finding, and it has to do with what we don’t understand about emerging risks for women.”
The report also dives into several actions that global leaders, scientists, and clinicians can take to advance women’s health in cancer and gender equity. STAT spoke with Ginsburg about the relationships between women, power, and cancer. This interview has been edited for length and clarity.
How did you get into studying the topic of how patriarchy and gender inequity affect cancer outcomes among women?
I was working on a breast cancer clinical trial in rural Bangladesh. My colleagues and I realized many women were coming in with advanced breast cancer, not because they didn’t know they had a problem, but because they felt they didn’t have a choice to do anything about it.
I was seeing patients with some of the worst cases of locally advanced and metastatic breast cancer I would see in my career. A woman had come in where the breast mass was so badly infected and necrotic that she said, very shyly, that she was abandoned by her husband and in-laws and told to leave because of the smell. This was some 12 to 13 years ago, and I’m so glad to see how much has since changed in many parts of Bangladesh with respect to breast cancer care.
Many women we interviewed described the reason why they didn’t come to the clinic sooner was they had “no choice” between sending their children to school or using that money to travel for health care. They understandably considered cancer a death sentence, so why sacrifice their children’s education or meals to go to the hospital and never return? All of that struck me profoundly. My belief was that much could be done to reduce death and suffering from breast cancer, at least in that community, through women’s empowerment.
What would that kind of women’s empowerment look like with respect to cancer care?
There are social determinants that impact a woman’s opportunity to obtain care and stay on the care pathway. One of them is just how we speak with women. As an example, clinicians use language like “neglected breast cancer,” which places blame on the women. It’s with the best of intentions, but this language can create a power differential when it places blame on the patient like, “why didn’t you come in earlier?”
You have to listen to women to be able to help them. We have to question the language we use when asking them “why did you come in so late?” It’s asking: How can we as health providers support women better to complete the course of therapy? A lot of women will tell us, in many countries including the U.S., it’s not that I came in for care late, I couldn’t come in sooner because who will look after my children. Or they are in an abusive relationship which may sound out of left field but it’s unfortunately a common story with respect to a woman’s ability to use whatever resources are in the household to seek care.
In the quantitative data, we show in the report that for women of all ages, 1.3 million lives could be saved if just four major risk factors were avoided — tobacco, alcohol, obesity, and infections. Let’s just take infections for a second. If women could just get screened for cervical cancer and HPV, they wouldn’t get cervical cancer.
But how can they access care if governments don’t prioritize them, if companies are not brought to the table to lower prices for highly effective screening that we have, and girls don’t have the opportunity to receive the vaccine? This also comes back to power, not just on an individual choice level. We have to change things on a policy level.
You mentioned, earlier, the finding that cancer is generally less preventable in women than men. Could you talk more about that?
Even though men have a slightly higher risk of developing cancer, 48% of all cancers occur in women and 44% of cancer deaths occur in women, tobacco and alcohol are much bigger drivers of cancer risk and death among men than women. So, we have loads of policies and actions that can be taken on an individual or national level to prevent tobacco and alcohol-related cancer. Women are more likely to die of a cancer specific to women than men are to die of a cancer specific to men.
Breast cancer has a lot of research and dollars now, but the lion’s share is on treatment, which is incredibly important. But we still don’t understand so much about the risk of breast cancer, despite it being so common. To quote the director of the International Agency for Research on Cancer, “We are never going to treat ourselves out of the cancer epidemic.” We have to invest more in prevention, looking at the etiology, genetic epidemiology, and much more.
We still don’t understand about many emerging risks and products that are almost uniquely marketed towards women — based on patriarchal notions of beauty and racist notions of beauty. Like hair relaxers — why don’t we know more about the potential long-term effects of these products? My goodness, there’s so many personal products containing chemicals for which we know very little on the potential long-term effects.
In the report, you talk about how patriarchy is part of this as well — what does or doesn’t get researched — and how gender imbalance in oncology and medicine contributes to this problem.
There are power dynamics at play with respect to what gets studied. Who and what gets funded. You could say breast cancer has so much research attached to it, but there are less opportunities to study things uniquely affecting women compared to men. Globally, there has to be a lot more done. If women are in positions, if there are mechanisms in place to ensure that women have the same access as men as scientists to seek funding opportunities, then women are more likely to be interested in asking these types of questions.
We, as a commission, are very hopeful that change is possible. Things are moving in a good direction, but not fast enough. A lot of women are oncologists, but very few are making it to the upper echelons. The top ranked 100 cancer research journals, only 16% have a female editor-in-chief. We show that only 16 of 184 cancer research institutes and hospitals part of the union for international cancer control are led by women. We can do a lot better.