By: Mindy Buchanan
In the world of Adolescent & Young Adult Oncology programs in cancer centers and pediatric hospitals, program managers or coordinators are sort of the MacGyvers. (Remember him? The guy from the 80s TV show who could use a Dorito, some duct tape, and a paper clip—or whatever else was at hand- to solve any problem?)
In 2011, I was one of just a handful of known AYA program managers in the country. Today, there are dozens. While dozens more speaks to a lot of progress in the last five years, many of the challenges we must MacGyver our way through seem to remain unchanged.
Many (if not most) AYA programs are started by committed and passionate providers caring for young people with cancer. Which is to say, they are started on the ground at the patient care level and usually not by the upper administration types. The truth is, AYA programs have a hard time generating funds for cancer centers and therefore get lumped into all other “patient services” programs, where funds are already stretched thin. So, how do you develop and build age-relevant programming for a diverse population spread across a medical system that is sometimes buildings and blocks apart, with little to no money?
For me, at a prominent academic medical center cancer institute, I was lucky that our pediatric and adult hospitals already had a friendly relationship – something I understand can be a challenge in and of itself – but a significant barrier was getting the word out to the clinics and inpatient units. See, without top-down support—that is, a directive from top hospital administrators, with funding, to make AYA a priority—there’s no one informing providers and staff about the needs of AYAs. There’s no systemic effort to fold AYA into clinic practice, or to align these patients with age-relevant services that exist.
When I started we had a support group for young adults, AYA consultations with a specialized physician, and a fertility preservation policy, as well as a fertility preservation physician champion who would show up at all hours to do a consult with an AYA if needed. In 2011 that’s more than most places could even think of having. But we didn’t even have a good understanding of how many AYAs were walking through our doors. And we knew we weren’t doing a good job of letting people know about our services.
If there’s one thing all medical centers and cancer institutes have in common, it’s their affinity for red tape, and a tepid interest in things that don’t make them money. “That’s a great idea, but we don’t have the budget for it. Maybe you can get a grant or find donors…” That’s where being Macgyver-like comes in.
How may AYAs do we see a year? Seems like a pretty easy question to answer. But it took me four months and a bio-stat intern I dubbed The Great Data Detective, to figure it out. It’s surprising these numbers aren’t easy to get. But for me, at least in 2011, they weren’t. But we did get them, and it turned out we had about 1,200 AYAs at various stages of treatment, every year. We also determined about 400 of those folks were newly diagnosed.
Where are they? How do we let them know about programs? In the years that I’ve either mentored other program managers, or talked best practices with them, this is a constant struggle. The AYA team tried every which way. We didn’t have all our AYAs in one central location, so we showed up at tumor boards, sent emails, asked for meetings, etc., etc. These things took huge amounts of time and energy for very little yield. In the end, we started a Program Ambassador internship as a partnership with our local university undergraduate schools of public health. We made the system work for us. Sending in peer interns to meet AYAs where they were, at clinic or infusion, or on the units, helped spread the word. And not just to the AYAs and their families; the interns became staples for the clinic and social work staff. Eventually we got calls from staff asking if we had an ambassador available to come chat with patients, thereby spreading the word about our programs, taking the onus off nurses and providers, making it a win-win. See? MacGyver-style.
And MacGyver-style is cool. It’s something to be proud of when you’re the MacGyver. You plot and problem solve so deftly that you forget you shouldn’t have to be MacGyver. Those moments when you figure out how to circumvent the system— how to make it work for you, not against you—however invigorating they may be, are in the end the very things that keep administrators from supporting and funding the work.
We think if we can demonstrate the amazing work we do, the headway we create, the recognition we get inside the AYA Oncology field, we will get someone’s attention. An administrator will see the value in what we do, and will put their stamp of approval on it, and it becomes a center-wide directive with funding and support. But instead, your work might be applauded: Look what a great job you’ve done without our help, we’re certain you can keep doing it and more.
The barriers we faced were not unique. I have personally heard the same stories from many AYA programs. The way we face them and find solutions are often diverse, making MacGyvers out of us all. And our passion for this work will not falter, no matter how large a sea of red tape swells before us. But if AYA programs and their managers are to succeed on a scale that befits the need, administrators and heads of cancer centers are going to need to make it a priority. Until then, we’ll continue to make as much racket and all MacGyver our way to as many wins as we can.
Mindy Buchanan is the former AYA Oncology program manager for OHSU Knight Cancer Institute in Portland, Oregon. In 2015 she transitioned to the AYA non-profit sector (where there’s less red tape, but still plenty of challenges to McGyver through) and now works as the program and outreach director for Athletes 4 Cancer.