Champion of cancer patients: Interview with Alan Birch
October 16, 2019
Alan Birch’s job description—drug access facilitator—has grown out of the increasing challenge of accessing innovative medications in Canada. As part of the cancer care program in a large Toronto hospital, Alan spends his days helping patients obtain cancer medications as quickly and with as much financial support as possible.
A pharmacy technician by training, Birch brings a scientific understanding of specialty medications to his work. Currently a director at the Oncology Drug Access Navigators of Ontario (ODANO), Alan helps raise awareness of his profession and teaches less experienced colleagues to navigate the access landscape. In this interview, Birch shares his unique front-liner’s perspective on the hurdles faced by cancer patients requiring specialty medicines.
How would you describe your role?
I help expedite access to complex oncology medications. When a doctor prescribes such a medication, I launch into “investigation mode” to identify and clear away barriers to access and reimbursement. While many patients get automatic coverage, others fall through the cracks because of their age, their insurance status, or a number of other circumstances. In such cases I help connect these patients with various reimbursement channels, compassionate care programs, or special access programs for drugs awaiting approval.
Why are access navigators more prominent in oncology than in other specialties?
There are over 200 different types of cancer, with new drugs coming down the chute all the time. Our current reimbursement system was not designed to handle so many specialty drugs at such high prices, and nobody is lining up to pay the bills. Patients can’t be expected to know about all the alternative sources of financial support, which is where the access navigator comes in. Patients routinely contact me with questions like “I spent $1,000 on a drug, now what?” or “I’m having trouble with my Trillium application,” so the access navigator role does seem to fill a need.
What is the “typical” experience for patients prescribed a complex oncology therapy?
The patient experience is constantly changing, and always in the direction of complexity. It used to be that a patient came into the clinic, received an infusion of chemotherapy, and left. As we move toward targeted therapies, meaning treatments tied to specific gene mutations, patients may need to get their tumors genetically tested to find out if they’re eligible for a specific treatment. The province covers only some of these genetic tests—generally the more basic ones. Patients are left wondering whether to pay out-of-pocket for a more sophisticated test that may or may not point them toward the best treatment choice.
What are some of the key challenges facing oncology patients today?
If there is any common theme, it would be time. A delay here, a delay there, and the patient ends up missing the window of opportunity for best treatment. The delays are frustrating to watch and still more frustrating to experience. It can get to the point that the doctor gives up and switches the patient to the standard of care. Not that the standard of care is a bad thing, but naturally the patient wants access to the most promising options. It also seems unfair that some patients can access these new medications without any problem, perhaps because of their age or insurance plan, while others, through no fault of their own, have to wait and wait.
Are governments doing anything to simplify access for patients?
We’re in a transition period and changes are coming. For example, the Ontario government has created the SADIE [Special Authorization Digital Information Exchange] portal, which reportedly makes it easier to submit requests for exceptional access to drugs. The portal will be available to drug access navigators next year. A genetic test called OCTANE, involving about 50 oncology genes, is currently running through clinical trials at major Ontario cancer clinics. We hope the provinces will eventually fund the test, but the possibility is still years away.
As we all know, the discussion around national pharmacare keeps heating up—a double-edged sword, in my view. I appreciate that national pharmacare may help level the playing field, but if you eliminate private insurance plans and don’t speed up the timeline to get drugs on public formularies, you end up cutting off access. And that’s not OK for cancer patients.
Where does the patient support program (PSP) fit into all this?
I see PSPs as another double-edged sword: on the one hand, they are critical to oncology care as they help patients get drug more quickly through bridging programs. On the other hand, PSPs have multiplied so quickly in oncology that cancer clinics can hardly keep up. Each PSP does things a little differently—for example, some have built-in compassionate access, while others only provide financial assistance—which makes for a highly fragmented care pathway.
What advice might you give manufacturers of complex oncology therapies?
Speak to the clinics before designing your PSPs! Speak to the nurses, administrators, and access navigators. We know how things flow in a cancer clinic and the pain points along the road. Come in with an open mind and ask us questions. Build flexibility into your programs so that clinics can opt in and out of various services. When time is of the essence, consider providing product to oncology centres in advance, so they’ll have it on hand to support timely bridging.
Perhaps most important of all, programs need to be more nimble. A delay of several days while waiting for a patient to sign off on a PSP enrolment is unacceptable. If the patient doesn’t respond, you don’t just file them as “unable to reach,” you call again and again.
Overall, how can we do better for oncology patients?
Oncology patients have so much on their minds—the shock of receiving the diagnosis, telling their families about it, taking time off work, and dealing with medical appointments and lab tests—and don’t have the time or energy to worry about access. It’s up to us health professionals and policymakers to take the lead—to clear the path toward fair and timely access so cancer patients can concentrate on their treatment and their health. As a front-liner in the system, I have the privilege of working not only with patients but with other health professionals who share my passion for positive change, so I know we can do it.