Dia S.

"The growing trend of workers on revolving door contracts with no group benefits means if you are chronically ill, you are pretty much screwed."

Hi, my name is Dia and I need group benefits! Can you help?

After recently going through a restructuring at the nonprofit that I had been working at for close to a decade, I was shipped off to a smaller organization to do good work. But as a result, I would lose my group benefits as this new organization was too small to have group benefits. 

I thought my safety net of having a private insurance plan that I had kept from a former employer would save me from the money pit of high drug costs. Especially, since I was now essentially working a contract, with no benefits.

The growing trend of workers on revolving door contracts with no group benefits means if you are chronically ill, you are pretty much screwed. My private insurance only had a modest drug plan, in which I maxed out in 3 months. I tried to buy more “out of pocket” insurance and I was denied. I now had a “pre existing condition.” In 2010 I was diagnosed with a severe asthma diagnosis. I have seen the best-of-the-best in North American. Seeking out care in the US at my own costs because I was on never ending wait lists in Canada and had few treatment options. The biologics coming to the market are changing my life for the better. When I was first insured, I had no such illness. Honestly, I would contribute to insurance but I can’t seem to qualify to buy more. Fun times! 

Then came the next adventure, applying for the Trillium Drug Program in Ontario. The application process was fairly straight forward, however, understanding how it works is not. Especially, if you have some insurance; it was a nightmare. There is a deductible that you pay, depending on your income, meaning you may never benefit because your deductible is so high. I was on a merry–go-round of disconnected information. The pharmacy said to do one thing, the drug program another. When my amount spent was not logged, there was a crossfire of blame and was left with a $700 bill that I thought would only be a $150. Surprise!

In this age of technology, you need to mail paper forms in with secret codes to “maybe” get reimbursed. I quickly learned that not everything is on the formulary and there will be more out-of-pocket costs. I am currently getting a biologic through a clinical trial. When the trial is over, I have no idea where I will get $30,000-$36,000 a year for only one of my seven medications.

My private insurance will be maxed out after one dose, the chances of it making it to the provincial formulary are slim to none (at least in the near future) and I will not be able to afford it, even after any "discounts" offered by the pharmaceutical company.  I am not sure what I wil do and the fear of rapidly declining health may loom.

I fear that I will need to resort to being on high doses of oral corticosteroids, but not because they are the most effective (google the side effects, many of which I have had or are ongoing), but because it is the cheapest. Frankly, I would rather look my life expectancy square in the eyes, than succumb to the cheapest option. Having a poor quality of life is not a trade-off for cost-effectiveness.