My Takeaways from the San Antonio Breast Cancer Symposium

I recently attended the San Antonio Breast Cancer Symposium, also known as SABCS. It is the worlds largest conference dedicated to scientific reporting specific to breast cancer where researchers and oncologist gather to learn and discuss the science that we as patient advocates depend on to save lives. This was my first time attending SABCS but not my first time attending a cancer conference. 

Prior to ever attending a cancer conference, I participated in Project LEAD in 2015, which is a weeklong learning opportunity for patient advocates hosted by the National Breast Cancer Coalition (NBCC). I highly recommend patients wanting to get more involved with advocacy work to apply to participate in an upcoming Project LEAD opportunity. They are held each July in LaJolla, CA.

I left San Antonio, TX gaining new connections to people like myself who are working hard to make breast cancer a disease of the past. I am hopeful that these new connections will result in actionable steps to speed progress for drug development with less side effects for the patient. 

I also leave with questions: What are we doing wrong? Why can’t we move at a faster pace? Why can’t we put egos aside and work together more? Where do we begin to change systems in place that aren’t working for everyone with this disease?

There is more policy work to be done

There is an overwhelming amount of work that still needs to be done in many areas of the breast cancer space. There is policy work to be accomplished that will give patients access to expensive medications that could save their lives. Insurance companies need to be held accountable to cover the genetic panels, and we need new technologies available to patients that will help determine what course of treatments will be best for each individual patient. 

This is precision medicine! We need the standard of care in breast cancer treatment to catch up with the technologies available for the surveillance of breast cancer, like ctDNA.

Pharmaceutical companies, oncologists, and researchers need to better design clinical trials so the most vulnerable cancer patients have access to life-saving medications on a trial without having to fight for compassionate care to save their own life.

Cancer is expensive

The National Cancer Institute estimates that the average cost of medical care and prescription drugs following a cancer diagnosis is $42,000 in the year following a cancer diagnosis. Some treatments can exceed 1 million dollars.¹

US News in a September 14, 2022, article by Cara Murez reports that insured patients under sixty-five are paying more for their treatments out-of-pocket than ever before. This trend was suggested to be due to the more common high deductible insurance plans for the private insurance markets. We need insurance reform.²

Working together

The government entities like the FDA need to better communicate changes to policies that will make clinical trial design and access easier for the institution running the trial to recruit patient participation. One such example is that the FDA now allows reimbursement for travel, lodging, and caregiving to the patient should that person need to travel a long distance to participate in a trial. Not all institutions are aware of this change. 

Where will these funds come from, and what if the patient does not have the money upfront and the ability to wait for reimbursement? These are just a few of the comments that I heard from other patients at the FDA panel session at SABCS hosted by the Alamo Breast Cancer Foundation.

Keeping patients at the forefront

I also often think about how the basic and translational research system, in general, is not set up with the patient in mind. Researchers are required to raise their own funding to support their labs.

They are encouraged to publish scientific articles on their research to gain higher levels of tenure at the Institution they work and often do not collaborate with other researchers due to fear of intellectual property infringement. Can we think of better ways to incentivize researchers to give cancer patients more hope?

Continuing to advocate

So, what about the science at SABCS? What did I learn as a patient advocate about the scientific evidence that people diagnosed with breast cancer should know? 

Here are just a few important topics that we need to follow and continue to advocate for in the breast cancer space:

1. Pathologists need better tools to help identify if a patient is considered to have the HER2Low subtype. Some ER+ Her2- patients can benefit from a combination of drugs if their tumor tests positive for HER2Low. Pathologists can get this subjective diagnosis wrong and in about 20 percent of cases disagree on the Her2Low status. The science is calling for better assays in this area.
2. Young patients and/or those with high risk of recurrence benefit most from ovarian suppression combined with an aromatase inhibitor. We kind of already knew this but continued research is proving it to be true.
3. Black women continue to die of breast cancer at alarmingly higher rates than their white counterparts. This was made visibly evident in the Black Women Speak Session when people were recognized by the number of years they have been living with metastatic breast cancer. We know that breast cancer behaves differently in Black women.

In closing, I recommend anyone wanting to be a better patient advocate to apply for the Alamo Breast Cancer SABCS scholarship. It is well worth the time spent at this amazing scientific symposium, which is held each December in San Antonio.