By Karuna Jaggar, Executive Director
Every person’s experience with cancer is different. And both patients and providers agree that “one size does not fit all” when it comes to breast cancer. Screening decisions are individual. And treatment decisions are driven not only by what specific sub-type of breast cancer we get, but also by our own unique personal circumstances, including other health issues. Our individual values and preferences determine how we weight potential harm and benefits. And at the end of the day, on which side of the statistics we fall is decided by dumb luck.
But when members of certain demographic groups routinely fare differently than other groups, they’re no longer just differences, they’re broader health disparities. And many disparities aren’t simply the result of biological differences, but instead are produced by larger systemic factors and structural oppressions. It’s important to explicitly name that the unequal burden experienced by socially disadvantaged populations is unjust and preventable. And eliminating health inequities is essential to Breast Cancer Action’s work to achieve health justice.
Undertreatment and the lack of access underserved communities face frequently come up in discussions about health disparities. Ensuring access is absolutely necessary, but access alone isn’t sufficient to ensure health equity across the continuum of care, from screening and diagnosis to treatment and survivorship. In addition to the problem of undertreatment, disparities can also take the form of overtreatment, producing a different set of unnecessary harms.
Some of the many reasons that underserved communities are less likely to receive high-quality, evidence-based care include providers failing to recommend appropriate treatment because of bias (a new NPR report shows that cancer patients who are single receive less aggressive treatment than those who are married). Other factors include lack of cultural competency, a delay in treatment, and patients being unable to afford or otherwise access treatment. Health inequity doesn’t manifest as a single problem, and there isn’t a single solution.
All marginalized and underserved communities don’t experience identical disparities: there are differences between and among underserved communities. The disparities experienced by people with physical or mental disabilities, sexual and gender minorities, people with language barriers, people in rural communities, etc., are all specific to the oppressions that these groups experience. Compared to other underserved groups, we know relatively more about racial/ethnic disparities, although, of course, there are still significant knowledge gaps.
This blog shares some of the data about disparities that was presented and discussed at the 2018 San Antonio Breast Cancer Symposium. There was a notable number of papers presented that focused on the experiences and unique needs of younger and older adults. In a society that puts a premium on youth and often devalues and ignores older women, it can feel confusing to think of young women as a socially disadvantaged group. But understanding how breast cancer impacts different groups and communities differently, can help us make sure that everyone gets evidence-based, culturally-appropriate, compassionate and respectful health care that’s right for them.
Dr. Ann Partridge from the Dana-Farber Cancer Institute received the 2018 AACR Outstanding Investigator Award in Breast Cancer Research and spoke about “Breast Cancer in Young Women: Understanding Differences to Improve Outcomes.”
Because most young people are on average in better health with fewer co-morbidities than older people, it would be easy to think they might fare better after a breast cancer diagnosis. But despite some apparent advantages, younger women (under 40), in many ways, experience worse breast cancer survival and worse quality of life.
Because breast cancer subtypes are distributed differently for young women, who are more likely to be diagnosed at a later stage and with more aggressive breast cancers such as triple negative disease, there has been some speculation that the different tumor biology is driving the disparities for young women. Although researchers still don’t know with certainty, Dr. Partridge showed some data that shows that separated by breast cancer subtype, young women do not necessarily have worse mortality rates, suggesting that it isn’t that being young is a risk factor as much as the fact that young people tend to develop more aggressive cancers.
Breast cancer certainly impacts young people differently when it comes to physical, sexual and emotional well-being. Dr. Partridge reports that “social emotional functioning and vitality” is the lowest in the youngest women, especially women who’d undergone menopause. And Dr. Partridge notes the ways that life can be harder for young women with breast cancer on top of all of the usual treatment issues. Some issues are unique to or accentuated by being young: issues such as fertility, sexuality, and partnering. And many of these issues, such as the risk of recurrence or a secondary cancer, are experienced over more years for younger patients, who will hopefully live decades after an initial breast cancer diagnosis.
There is increasing attention on fertility issues for younger cancer patients, and over half (57%) of young women in one study reported that concern about fertility influenced their treatment decisions. Younger women who go through breast cancer treatment are able to have healthy pregnancies. The POSITIVE trial, which is accruing now, looks at the safety of interrupting (pausing, but not stopping) hormone therapy.
Younger people are often in a different financial situation than older adults, dependent on a job for health insurance and under greater financial pressures. The financial impact of a breast cancer diagnosis is not only the immediate cost of treatment, but also includes other financial impacts that extend after treatment ends. To this point, Dr. Reshma Jagsi cited a study from several years ago that found 30 percent of people, four years after they’d received breast cancer treatment, were no longer working even though they wanted to. This involuntary unemployment was even higher for people who received chemotherapy.
Additionally, mortality issues can be heightened for younger people. Dr. Partridge asked the audience of providers: “Have you ever seen a 35-year-old who says ‘I’ve lived a good long life, I’ll take my chances’ when diagnosed with breast cancer?”
It’s not possible to begin talking about geriatric oncology without first acknowledging the recent sudden death of Dr. Arti Hurria, who was an important pioneer and leader in the field. Her research was seen in multiple areas of this year’s conference, including her role as first author of this abstract, which was presented by Dr. Allison Magnuson.
Although cancer is a disease of ageing, the majority of patients enrolled in clinical trials are younger. Older adults are at increased risk for treatment toxicity, yet there are few tools available to weigh the risks and benefits of treatment.
The Cancer and Ageing Group (CARG) tool provides a toxicity score to help guide treatment decisions for older adults. The paper developed a new CARG-BC risk score specific to breast cancer. Recognizing the harm and benefit considerations are different for older adults, this validated tool can help support informed decision making for patients, based on their individual life circumstances, values and priorities.
In her presentation about the growing rates of mastectomies among younger women in recent years, Dr. Patricia Ganz mentioned that when lumpectomy was first introduced in the late 1980s, many surgeons assumed that older women didn’t care about preserving breasts and lumpectomy was primarily offered to younger women as a breast conserving option. Today, older women are more likely than younger women to have lumpectomies, which are less extensive surgeries with lower rates of complications that also have the benefit of preserving sensation, including sexual pleasure.
People of Color
Dr. Rachel Freedman, from the Dana-Farber Cancer Institute, notes that racial and ethnic disparities have developed over time. In the 80s significant treatment disparities didn’t exist, but with improvements in treatment options, disparities developed and continue to widen as those advances are not equally shared. Today, women of color do worse than White women after a breast cancer diagnosis.
Knowing that people of color are under-represented in most clinical trials, I was glad to see Dr. Kathy Albain’s (Loyola University) research (GS4-07) investigating whether the recent TAILORx results are applicable to people across racial and ethnic groups. Black people experience independently worse outcomes than White people, and this analysis also found the lack of benefit from chemotherapy for patients with an OncotypeDX score between 11-25 is also true in all racial (White, Black, Asian, other/unknown) and ethnic subsets (Hispanic, non-Hispanic).
Working Toward Health Equity
Knowing that health disparities are complex doesn’t diminish their importance; instead it underscores the importance of investing resources into both understanding and addressing the underlying causes of preventable health inequities.
There are a number of ways that healthcare providers, working directly with underserved communities, can recognize and remedy health disparities in their individual practice. Providers can talk to patients about barriers to recommended treatment, including cost, and help access resources, such as patient navigators and social workers. But anyone who wants to get serious about social justice should spend time learning about and addressing their own implicit biases and learning about systems of oppression that produce disparities for individuals.