I’m Tony, and I was diagnosed with GIST [Gastrointestinal Stromal Tumor] cancer, at
the age of 40.
At the time I was diagnosed with cancer, I was living a fairly normal life.
I have three kids, aged 13, 11, and nine.
And I had a fairly stable job as a technology executive.
I remember the day clearly.
Aside from getting a diagnosis of cancer and a life threatening disease, and that the disease
had progressed beyond a safe surgical protocol, the second blow that was dealt is that the
treatments that were available were not covered, by the health care system.
It hit me quite significantly on that day, that now I was now dealing with two issues;
one is a matter of survival, and the other is, you know with a young family and as a
single earner at the time, that I needed to pay for some very expensive treatments.
I’d been using these expensive treatments as my survival at a cost of an excessive,
about a hundred thousand dollars, per year.
And I’ve had to use a number of tactics to make sure that the drugs were accessible
to me, and that I had a mechanism to pay for them, because I wasn’t in a position to
be able to pay for them out of pocket.
One of the things that I did right away is get some help.
So that was the first thing, is engaging the Odette Cancer Centre.
Generally there are a few different ways that can assist you to get you access and pay for
the treatments.
For people who do have access to employer sponsored benefit plans, that’s one mechanism
to go through.
There’s Trillium Drug Programs that are offered through the provincial government.
And there are assistance programs that are sometimes offered by the drug companies.
I was fortunate enough to initially leverage my employer sponsored benefit plan.
However, the reality of it for most people is those plans come with large deductibles
for expensive drugs like this and they come with limitations.
And I had to invest a significant amount of time to lobby both my employer and the drug
company to work out a mechanism whereby I can at least augment the shortfalls in both
of those programs.
I would say that the best advice that I could give is don’t despair.
There is a lot of help available out there.
You know, leverage the Odette Cancer Centre Reimbursement Specialists, you need to be
a nuisance with the drug manufacturers, with the pharmacies, and with the benefits provider,
to ensure they know who you are and what you need and what the circumstances around your
treatment are, and most importantly, the timing and reimbursements that are required.
Generally speaking, this ecosystem of supporters will come together to provide a solution for
you, but you need to persevere, you need to be your own advocate.
Reflecting on the last six years, I think what I would emphasize to you is get help,
immediately, be your own advocate, and stay informed about what’s going on with your
drugs and with your reimbursement programs.
Be very proactive about it.