2019 marks the 2nd year in a row that I was able to attend the San Antonio Breast Cancer Symposium (SABCS). This conference is the largest annual gathering of breast cancer medical professionals in the US and includes attendees from all over the world. The sheer number of languages I heard while walking around is amazing! The differences in different countries and different medical systems are highlighted a great deal at a conference of this kind and that does make talking to researchers outside of the US a little more complicated.
Yet, people are people and biology is biology.
Yes, there are some differences and one of the major themes of advocacy at this conference has been the significant number of minority patient advocates who came to address disparities. The METup annual silent vigil included signs reminding researchers to include people of color in trials.
There seems to be several different groups of people who attend SABCS every year.
- The first, and I think most obvious, are the breast cancer researchers. These are men and women who have dedicated their lives and careers to researching various elements of breast cancer. The most astonishing thing about talking to researchers is the often limited access they have to actual real, live patients. The patient experience, therefore, is often an overlooked factor when trials are designed. Something we patient advocates are looking to change — it only makes sense to include the people participating in the trial in the design up front.
- A second group of people are Medical oncologists, many of whom focus their practices on just breast cancer. These doctors are very interested in the clinical applicability of the trials. At the beginning of the exploration of various questions, the data is not precise and doesn’t clearly indicate answers that can be used in the clinics. These conferences that bring the different disciplines together spark and encourage dialogue, which then benefits the patients.
- Vendors that serve doctors and patients had a chance to reserve space to show off their products. Walking around, the variety was rather astonishing. Lots of things to bring back and suggest to the patients I know who might need some help. One such company had us tie ribbons onto this long rope and for each ribbon, they donated funds to one of my favorite organizations, Living Beyond Breast Cancer!
Another group donated to the Alamo Breast Cancer Foundation if we wrote our names …
4. Regulatory agencies like the FDA also came and, for the third year, the breast cancer division at the FDA held a panel discussion for the patient advocates. While there are limitations to the ability of the FDA to effect the changes that patients want, the fact that they did take the time to talk to us is vitally important. Hopefully others will follow their example.
My question to the FDA panel was when they will assist those of us with pain by removing medical marijuana from schedule 1. Hoping they listened!
- 5. Pharmaceutical companies are also present in force, mostly just in the exhibitor areas. The sheer cost of bringing employees, the giveaways, the dinners, etc., is amazing. The only message those of us who are patient advocates would like to send to the pharmaceutical companies is that their money would be better spent sending us to the conferences. Lilly did take this advice to heart and sponsored the patient advocate lounge rather than holding a dinner and it was MUCH appreciated.
- Some of my friends got a week deserved nap!
- 6. Patient advocacy companies attend the conference to bring the patient voice to the conference and to bring key messages to other attendees. One of the major differences I noticed this year was the increased attendance of minority patients and advocacy groups focused on minorities.
- Some of you know that I volunteer with After Breast Cancer Diagnosis (ABCD) as a mentor. I had no idea that they would be represented at the conference and I got to meet quite a few of them in person!
- 7. Patient advocates also attend. Well, that would be people like me! Many of the patient advocates are stage IV but I also met a lot of early stage patients too this year. The GRASP program, which stands for Guiding Researchers & Advocates to Scientific Partnerships, involved groups of scientists, medical oncologist, and patients learning from each other. I got to participate as a mentor in this inaugural program!
While the primary reason I attend is knowledge, the most joy I get out of attending conferences focused on metastatic breast cancer is meeting and spending time with other patient advocates. The patient advocates who attend the conferences are a rare breed. We’re all sick. Many of us are stage IV. We have frustrations and many of us are a little vocal about it. We come from all walks of life, from all over the country and the world.
This year, I also had the honor and privilege of rooming with a dear friend, Laura Carfang, who is the founder and force behind SurvivingBreastCancer.org. We talked and laughed late into the night, we explored the Riverwalk with Carol Carfang, Laura’s mom who came to the conference to learn as well, and we learned so much our brains hurt!
Can’t wait to see the knowledge we absorbed translate into action for 2020 and beyond. Stay tuned, folks, it will be epic!