Early Friday morning I attended a poster session titled simply “Disparities.” I expected such a broad topic would have a lot of posters. Imagine my surprise when I arrived to find just 5—yes, that is F-I-V-E—posters on the topic of disparities and breast cancer.
The first two posters were on the all too common issue of breast reconstruction rates with one focused on disparities in the use of reconstruction by a range of factors and the other looking at reconstructive surgery rates among lower income women in France. A third poster looked more broadly at breast surgery, finding that some populations are more or less likely to undergo mastectomy versus lumpectomy.
I have sat through too many presentations where the stated goal is to get more women to opt for immediate reconstruction, with the presenter diligently listing the benefits for women and bemoaning the fact that a few women opt for delayed reconstruction. The fact that choice of surgery and specifically immediate reconstruction accounted for more than half of the posters on disparities was nonetheless shocking. What about the pressing issues of cancer incidence, mortality and morbidity?
Let me say simply, the goal of ending disparities should not be simply higher rates of reconstruction. Removal of barriers to the surgery, rather than the surgery itself, must be the goal.
So I walked past those as well as a fourth poster looking at the role of patient navigation in overcoming barriers experienced by Latinas with abnormal mammograms.
I stopped at the last poster with the title “Significant Clinical Impact of Recurrent BRCA1 and BRCA2 Mutations in Mexico” by Dr. Cynthia Villareal-Garza (Instituto Nacional de Cancerologia, Mexico) and Dr. Luis Herrera (City of Hope). This study is interesting both because of the focus on risk in an underserved population and because of Breast Cancer Action’s work challenging Myriad Genetics’ patent on the BRCA genes. Studies among breast cancer patients in Mexico have shown an earlier onset of disease and a high prevalence (23%) of triple negative breast cancer. The researchers have developed a low-cost, quick screening tool which can be used to screen Mexican and Mexican American women for one particular BRCA mutation, which occurs in high frequency.
One must remember that there are hundreds of BRCA mutations, some of which are linked to an increased risk of breast and ovarian cancer, some of which are not linked to an increased risk of cancer, and some of which are unclear and the significance of which in terms of cancer risk is as yet unknown.
Based on the prevalence of one particular recurrent BRCA1 mutation, which comprises around 10% of BRCA mutations in a Mexican American sample, the researchers believe they have identified the first documented founder mutation originating in Mexico nearly 1,500 years ago.
The researchers developed a low-cost 114 BRCA mutation panel to test for the most common mutations in women of Mexican ancestry. They call their tool HISPANEL and use it to pre-screen women, saving significant cost. For women with positive mutation results, the next step is a partial (and significantly lower cost) screening test from Myriad to confirm mutation status.
More research remains into the sensitivity of the HISPANEL, whether this mutation is associated with particular tumor characteristics, etc. Nonetheless, this provides the possibility of a cost effective screening tool which can be used specifically with women of Mexican ancestry to predict risk and related screening and prophylactic options for both breast and ovarian cancer.
Having commented on the specific studies in the poster session on disparities, I must say that identification of disparities does nothing in and of itself to establish and test interventions to address and reverse these inequities.
After my disappointment on the scope of the posters, I will move on now to the very excellent discussion and comments on the poster session. Although focus on a traditionally underserved community is a part of the disparity picture, I was most excited by the fantastic comments offered by Dr. Amelie Ramirez at the UT Health Science Center at San Antonio, discussing the complex interlocking factors that affect health disparities. This was followed by comments from Dr. Dawn Herschman from Columbia University Medical Center. [Note: for the purposes of this discussion, I will for the most part use the presenter’s language of disparities, rather than Breast Cancer Action’s preferred language of inequities.]
Dr. Ramirez began with the reminder that disparities, as defined by the National Cancer Institute, include a wide range of adverse difference in incidence, prevalence, deaths, survivorship, burden of cancer or related conditions among particular populations. While it is widely recognized that race and ethnicity are tied to different health experiences and outcomes, it is worth remembering that age (both the old and very young), gender (which may include LGBT), income, education, insurance status, culture (including histories of exploitation) and disability (whether physical/mental disability or comorbidity) are all factors affecting specific population groups. So called underserved populations who experience health disparities are not a homogeneous group.
These factors that are related to disparities are interconnected and interlock in important ways, visually demonstrated in a series of slides with interlocking gears that connect a range of factors important to disparities. Having a disability can impact the ability to work and therefore impact insurance access. Culture interacts with survivorship issues, language barriers, etc.
These and other factors interact in ways that are hard to navigate while dealing with cancer. Being low income may mean that a patient lacks childcare during medical visits, is unable to pay for services and medications, lacks transportation, can’t afford not to work, etc.
We know that women of color are more likely to die of breast cancer and cancer deaths are declining fastest among white women. Non-white women often have more aggressive cancers that are harder to treat, coupled with fewer social and economic resources. Differences in screening, follow up, treatment, and survivorship all demonstrate inequities in quality of care.
Here I will veer from Dr. Ramirez’ comments. It is not enough to identify the breadth and depth of these disparities, we must focus on interventions to reduce these inequities. Having discussed the complex and interlocking nature of the factors related to disparities, interventions that focus on simple outreach, scheduling support seem to offer a mere band aid. More coordinated support which provides case management, and advocacy, still seems doomed to only partially treat the problem. We believe we need to get at the root causes of these inequities to make lasting change.
As Dr. Ramirez concluded: “Cancer health disparities are multi-causal and involve many factors from diverse sources.” It is not enough to target simply specific disparities, she further notes: “We must also focus on the general causes of inequalities.”
Dr. Dawn Hershman further added to the conversation by noting that poor quality care can result from too little care, too much care, and the wrong care—overuse, underuse, misuse.
Dr. Hershman further notes that determinants of care go beyond the individual determinants (race, income, age, culture, literacy, insurance) and include also physician determinants (training, social networks, personal preferences, etc.), hospital determinants, (hospital type, investment in medical technology, patient mix, etc.) and county/state determinants (health care spending, physician supply, etc.).
In directly targeting specific inequities, one must identify the modifiable factors: whether place, insurance, health literacy, access to specialists, beliefs, cultural sensitivity, etc.
With the complexity of the issues regarding inequities in breast cancer, I hope next year we’ll see many more posters on this topic, including ones that go well beyond the focus of breast reconstruction. These studies are needed to add to our understanding of the many issues of huge importance in this area.