Advocacy is among the most overused and misunderstood concepts in cancer. I’ve long compared it to the fable of the blind men and the elephant, everyone’s definition depends on perspective.
In the history of remarkable, steady progress in myeloma since 1998, the emphasis of advocacy has shifted from motivating people to pay attention to unmet research needs to accessing treatment efficacy. In other words, the focus is far less on public policy or awareness and much more in sharing the good news of what individuals can do to help themselves once they are diagnosed.
It was therapeutic to share our stories with policymakers in the hope that more money would be provided to cancer research. It seemed all myeloma advocates could do because the rapidly increasing average life expectancy we anticipate today was a dream then.
Myeloma patients and caregivers were critical in the achievement of the doubling of funding for the National Institutes of Health (NIH) over the five year period from 1998-2003. Many of the basic science ideas nurtured in NIH-funded labs throughout the nation have been translating into monoclonal antibodies and all the other “goodies” that occupy today’s myeloma specialists.
As I wrote last week, increasing life expectancy rates may put a strain on access to specialists, making patient education more important than ever. But it also requires incorporating new advocacy methods into our routines whenever we can.
So as you keep learning about myeloma consider adding two more tasks to your myeloma routines every now and then. I think you’ll be surprised how being there for other patients will help you.
As we slowly emerge from pandemic-imposed restrictions, waiting rooms and infusion clinics will begin to fill again. The day will come when we go about our lives again normally, hopefully sooner rather than later.
When you look around and see fellow myeloma patients and caregivers, don’t withdraw. Engage. Discuss. Support and inform each other.
When you see that scared look on a newly diagnosed patient, put them at ease, ask them what they know and where they got their information. If you have found HealthTree resources to be helpful, let them know where to look.
Or when you see a Black person, see their color and ask if they understand how their genetics may be different, how they may actually have advantages with the right therapy. Let them know about the Promise Study, about how they may be able to ask their family members to painlessly contribute information that may help unlock keys to cures. In fact, let everyone in the room know about the study, regardless of ethnic background or race; it could be a game changer for myeloma patients everywhere.
Speak up, inspire each other. Make the waiting room an important part of patient education.
The goal to personalize every patient’s treatment has a corollary: every patient has his or her own story. But each one adds to a range of experiences that are both unique and shared on some level with certain patients.
And sometimes you have questions or need advice from someone who understands what you’re going through, one who knows the difference between myeloma and melanoma. That’s what the Healthtree Coach program is all about.
Consider becoming a Coach to share your knowledge and pick up some new perspectives. Or consider reaching out to one if you need to talk.
The advocacy of the HealthTree Coach program and in waiting rooms is another sign of progress. Our community is worrying less about research activity and more about their treatment.
At the HealthTree Foundation, we’re doing our best to help everyone access it.
about the author
Greg Brozeit has been with the HealthTree Foundation since 2015 when he began volunteering for the Myeloma Crowd. Prior to that he worked with Dr. Bart Barlogie and the International Myeloma Foundation, inaugurating many myeloma patient advocacy and education programs.