Like many others I was drawn to advocacy because I wanted to change the future for others facing aggressive breast cancer. I felt a sense of urgency to educate, push for research and reduce deaths from breast cancer. Naively, I believed a cure was within reach if we could just fund enough research.
It takes time to learn the research landscape and how things operate. Attending conferences, learning more about the science of breast cancer, and getting to know others in the advocacy community aided my understanding. Gaining credibility in that community also takes time. Making sure to learn the medical/research lingo and the key people working in my area of interest were also important.
Sadly, I quickly learned that even though I had some medical credentials, RN and BSN, many oncology researchers and physicians would much rather engage in conversation with our founder (a businessman) than me. He’d lost his wife to inflammatory breast cancer (IBC) and was committed to facilitating research to end the disease. We shared that passion, but as a patient, I also wanted people to learn the symptoms of IBC so they could advocate for themselves when needed getting a more timely diagnosis and appropriate treatment.
We learned, early on, that the medical research community tends to be risk averse and move slowly. They operate on the ‘publish or perish’ model. Advocates, who are losing friends, feel a sense of urgency that is at odds with that snail’s pace of advancement. How to work in that space effectively can be quite challenging. As advocates we want to see change NOW but don’t want to alienate the very people who can make that happen! It’s a delicate balance to know how and when to push and when to step back and regroup. I also realize there are plenty of researchers who share our frustration of the current system.
I’ve heard authorities on child rearing stress the importance of “picking your battles”. The same could be said in advocacy. You have to decide what things you want to accomplish and then be willing to keep working at those things until you accomplish them. Of course my personal list has changed a bit with time and our organization’s priorities are reviewed regularly as well. Science is fluid and areas of interest in research change.
Bringing a high quality, CME (continuing medical education) program on IBC to the medical/research community has been a high priority for me and our organization. With no paid staff and a limited budget we just couldn’t accomplish this task but it remained high on our list and something I was committed to, personally. I knew that to reach the medical community with quality information it had to come from a source they trust, other doctors.
An important part of advocacy is networking with others and learning from them. It’s easy to over-commit but it’s also useful to work with a lot of different people to accomplish things. As a result I usually learn something, can share about IBC with a new group, and broaden my network of friends/colleagues. Becoming a member of the NAPBC (National Accreditation Program for Breast Centers) Advocacy Committee was one of those opportunities. I wasn’t very familiar with the accreditation process and wondered if IBC education was included. Each year, when we discussed priorities for the committee, I suggested IBC education as well as metastatic breast cancer. Each year there were other topics that took priority…until last year! Over the last year we’ve been working with the Education and Standards committees on how to approach these important topics. On September 12, 2019, the NAPBC offered a CME program, by webinar, “Best Practices in the Diagnosis and Treatment of Inflammatory Breast Cancer”!! I was able to help secure Dr. Beth Overmoyer, Director of the Dana Farber Cancer Institute’s IBC Clinic to present the program. We were excited when about 700 registered for the program and well over 600 participated in the live webinar!! As I sat at my computer watching the numbers go up and up, as people signed in, no one could see the big smile on my face. They might have heard the delight in my voice as I had the honor of introducing and welcoming my friend and colleague Dr. Overmoyer, and that’s fine. (click on the highlighted webinar name above to access the archived program)
It’s a hard lesson but I’ve learned effective advocacy isn’t a sprint, it’s a marathon. Yes, there are times when everything aligns and a ‘win’ comes about more quickly. However, most often it takes that marathon of determination to reach the goal. It’s frustrating and exhausting and why so many people call it quits.
In a previous blog I talked about the value of collaboration, ‘Plays well with others’. In another you learned someone described my advocacy style as “kick butt and take names”! Today’s lesson is about staying the course and looking for a way to complete the marathon….it feels good and energizes you to keep at it!