Diana Chingos was diagnosed with breast cancer at age 34. Since then, she has spent more than a decade working as a patient advocate and advising on cancer research. At home in Los Angeles, she is engaged with the Breast Cancer Clinical Research Committee at the University of Southern California. She also works nationally with the National Cancer Institute’s Investigational Drugs and Core Correlative Sciences Steering Committees and the Health and Human Services Secretary’s Advisory Committee on Human Research Protections.
I wanted to attend the 2015 ASCO Annual Meeting to be current on the latest evidence. I’m a layperson, but I want to be knowledgeable and credible to the scientists and medical experts with whom I work. I also aim to impart this knowledge to friends, family, and newly diagnosed patients in my community who are seeking to understand cancer research and the benefits of new treatments.
The meeting is exhilarating and exhausting at the same time because of its sheer enormity—the thousands in attendance, the many languages spoken by the attendees, the multiple presentations running from 8 AM to 6 PM, the rows of posters, the distance traveled between presentations. There’s an incredible rush when hearing the latest results about a new treatment from the proverbial “horse’s mouth” alongside thousands of committed oncology professionals. When there’s something exciting, the room is packed and electric.
It’s very difficult for me to single out one highlight from this mammoth conference. There were many unforgettable moments, but these were my top four takeaways:
1. Collaboration is key for improving the treatment of premenopausal breast cancer.
As a survivor of breast cancer from a young age, I was delighted to find a program dedicated to premenopausal breast cancer that covered a range of topics. It has impressed me how those working in the field of pediatric oncology have come together so effectively to improve outcomes in the last twenty plus years for children with leukemia and Hodgkin’s lymphoma, with such small numbers of patients. The number of young women with breast cancer is at least that size, and we have had so little of that collaboration until recently. We need so much more. We may be small in numbers, but we have so much life to lose. For those interested, I recommend a look at the Young Survival Coalition’s Research Agenda.
2. Creativity is needed in the design of clinical trials, especially phase I studies.
I have seen much more innovation in clinical trials lately, but it seems restricted to later phase studies. Phase I clinical trials are where it all begins. If a clinical trial doesn’t work efficiently in this phase, it pre-empts later progress. However, many patients are turned off from participating in phase I trials because efficacy is not the primary goal of these studies. There could be much more creativity in the design of phase I studies. I’ve started to see it in various industry studies that allow patients who show clinical benefit to continue on their phase I dose or allow patients to change to the maximum tolerated dose once it is established.
3. No one can be an expert in everything.
In all of our excitement over the transformation of the precision of oncology treatment, it is easy to overlook the chasm between research and care. It is still very wide in most cancers. Michael Porter from Harvard Business School hit a home run, in my opinion, when he called for highly specialized, cancer-specific clinical units to work together to provide care and the need to measure outcomes and cost for every patient.
At this time of genomic medicine when experts predict treating cancer according to its specific molecular/genomic alterations (and in some cases are doing so), some academic centers are moving toward establishing translational oncology research and care units without regard to cancer type. However, it is more important than ever to acknowledge that no one can be an expert in everything. Even when the same genetic targets prove meaningful in different cancers, there are different ways of treating based on the same target. Take the example of EGFR (epidermal growth factor receptor); the doses, the degrees of response, and the specific EGFR-inhibitors used are different for colorectal cancer, non-small cell lung cancer, and head and neck cancer.
4. New solutions are needed to reduce the “financial toxicity” of precision medicines.
Perhaps most memorable in its own way was the discussion by Leonard Saltz, MD, an oncologist at Memorial Sloan Kettering Cancer Center, about the financial toxicity of new precision medicines. During his presentation, he cited examples of the costs of new PD-1 inhibitors and targeted therapies and proposed a series of provocative solutions. He also discussed the need for the U.S Food and Drug Administration (FDA) and Medicare to be able to consider value in approving new treatments and for the U.S. Department of Health and Human Services to be able to negotiate directly with pharmaceutical companies. We really have to figure this out. The current approach is inarguably unsustainable, and it is encouraging when our oncologists really recognize our concerns.
I hope the knowledge I gained by attending the ASCO Annual Meeting will help people facing cancer both directly and indirectly. I plan to communicate these findings in my work wherever and whenever I can, whether helping newly diagnosed patients one-on-one, in discussions with physician and scientific experts with whom I’m engaged at various medical centers, on my National Cancer Institute committees, when reviewing grants for funding, or through my advocacy, social, and other networks.