Beyond the Headlines: Cancer Genome Atlas and Think Before You Pink

I’ve had a lot of emails and calls this week from folks who saw my comments about the Cancer Genome Atlas that were picked up by the New York Times, All Thing Considered, and CBS—yes this was a hot topic in the news this week and our members and allies like seeing us on the front page of the New York Times. For those who missed it, the researchers discuss four broad genetically distinct categories of breast cancer.

This media enthusiasm is about recently released research that in many ways isn’t new at all. It hit the airwaves just one day before BCAction launched this year’s Think Before You Pink® campaign It’s an Epidemic, Stupid. Personally, I believe our campaign has far more potential to produce quicker and more comprehensive benefit to patients than this affirmation of so-called ‘basic science’ which will take years to translate into clinically meaningful results that benefit patients.

Here is my take on the results published Sunday in the journal Nature about ways to categorize breast cancer according to genetic changes.

Researchers have known for a number of years about these 4 genetically distinct types of breast cancer (luminal A, luminal B, Her-2 enriched, and basal-like), and they ways they largely, if not wholly, overlap with current treatment protocols. We know within each of these major categories, there are a number of sub-types. Translation: breast cancer is a complicated set of complex diseases.

From a patient advocacy perspective, the importance of any of these findings remains to be seen. As we all know, getting from ‘basic science’ to clinically relevant results is a long and complicated journey, and there are no guarantees. The measure for me of importance is ultimately: what will this do for patients? And that remains to be seen. So the big take away of this ‘news’: stay tuned!

That said, the Cancer Genome Atlas does underscore the unique and essential role of independent funding in breast cancer and raises questions about what kind of research gets funded, including how much focus is given to primary prevention. I’ve been disappointed (but not surprised) to hear the media referring to the four distinct genomic types referred to in the Cancer Genome Atlas as four ‘causes’ of breast cancer. Let there be no confusion: these are not true causes at all but are rather descriptions of tumor types.

Even the best treatments leave women bearing the physical, emotional, and—too often—financial tolls of these treatments for the rest of their lives, however long that may be. Yes, we need to understand the disease(s) so that we have more effective, less toxic treatments and we need to know who will actually benefit from these treatments so we aren’t over-treating. But equally important, we need to understand how to prevent the disease in the first place and to initiate strong regulation that adopts a precautionary approach to protecting public health.

A whole different set of issues arise when we pose questions about the diversity of representation in the biospecimens examined. Women of color are notably underrepresented in clinical trials and in biobanks in ways that may impact the clinical relevance of subsequent findings. As an example, we need look no further than the gaps in the genetic testing tools that were developed using biosamples from Ashkenazi women to identify BRCA 1 and 2 mutations that increase the risk of breast and ovarian cancers. Let’s also not forget questions about the process of the privatization of research which ultimately excludes many women from access to the long-term benefits of research.

Overall, the news about the Cancer Genome Atlas is a lot of excitement about something that, whatever the ultimate benefit to patients (if any), is at best a piece of the solution and nothing like a comprehensive approach to meeting the needs of women living with and at risk of breast cancer.

You and I know we aren’t there yet by a longshot. And current strategies aren’t on track to get us there any time soon.

We launched our newest Think Before you Pink campaign, “It’s an Epidemic, Stupid” because we want to re-envision government’s role in addressing the breast cancer epidemic. We need independent research and strong regulation that is fueled by a deep commitment to public health. Now is the time to hold our elected representatives accountable for taking concrete steps by endorsing the 2012 Breast Cancer Action Mandate for Government Action. Now is the time to put forward our vision for how to turn the tide on this epidemic once and for all.

This entry was posted in BCA Action Alerts, BCA News.