Thursday, April 12, 2007

Am I happy or ticked off?

First of all, let me say that this is NOT some type of plea for money. NOT AT ALL. Let's get that straight and out of the way.

I'm on some medication that is quite expensive, and because Tom is self-employed, we don't have drug coverage (on the plus side, we do claim the medical expenses on our tax returns so we do get some of it back in the form of a healthy refund). The anti-emetic pills I'm on when I have chemo are quite expensive and then I'm on some pain medication that also gets a bit pricey. Add a few other medications here and there (other anti-emetics, gastro pills etc) and, let's just say I'm helping to buy my pharmacist a new Mercedes Benz.

I had a meeting with my Community Care Access Centre (CCAC) co-ordinator today. CCAC is the organization through which I get my home care nurse. The nurse disconnects my chemotherapy pump. Anyways, after she left, she called back and said, it popped in her head that we might not have drug coverage because Tom is self-employed. When I replied that no, we don't have coverage, she said that, because I'm being seen by a home care nurse, and we don't have drug coverage, we are eligible for a special card that will cover the cost of drugs - IF the drugs relate to the reason I have a home care nurse come in (which, of course, they do). So, she is processing the card today, and effective immediately, we have drug coverage for me.

For that, I'm very very happy.

I'm also very very angry.

I have been seeing a home care nurse now for 7.5 months. Why has NO ONE mentioned this before? I don't blame the nurse, that's not something they would think to ask. But why did my co-ordinator who first come in not mention it? You think that would be something on a checklist to ask.... quite basic in my opinion. It's not something I would ever think to ask..... why would the government offer us free drugs???

So that's 7 months of drugs that are not covered.

And, no, they will not cover retroactively. And for that, I'm really ticked.


One other piece of good news...

Ryan is eligible for funding from another social services department. This funding helps us hire someone to work with Ryan approximately 2 hours a week. We can also use those funds for respite (instead of using them for Ryan's contract worker). Respite allows me to pay for a babysitter for Ryan OR Kurtis and have that covered. I have fought for more than 2 hours a week for a few years now - it really isn't enough for respite AND Ryan's contract worker. I have asked for 6 hours a week hoping that I'd get 4. But no, they always keep it at 2.

Well, I received my letter today for 2007/2008 funding....drum roll please....

4 HOURS PER WEEK! Yahoo! Still not enough, but it's an improvement! I guess playing the cancer card helped this time. ;) That will allow us, when Ryan starts school full-time in September, to have someone come in 2-4 times a week to help him with school work.


Kei said...

I agree that someone should have told you long before now that you were eligible for coverage. And grrrr that it is not retroactive. ((HUGS))

Yay on the extra funding... wish it had been more, but double what you had is great, right?

Love ya!

Clare said...

Kudos to that nurse for taking some initiative. Too bad it's not retro. Cancer sucks in so many ways, it shouldn't also be expensive. And yay about the extra funding for Ryan too. I know how much it helps.

Nicole said...

I'm so glad you have coverage now. And great news on the respite too. Love you honey!

Michelle said...

oh man, that would have me extremely ticked off as well. It seems that should be something on a checklist. I'm sorr you can't get it retroactively - but it seems like you should be able to fight for that because you didn't know. How can apply for something if you didn't even know it existed? Frustrating!

Betsy said...

Annette, have you looked into Ontario Trillium Drug Benefits?

I didn't know this existed - nor did my husband who has lived in Ont. his entire life.

Wayne is a very bad diabetic, and his medication costs are incredible -- add high blood pressure, high cholesterol, etc, into that mix - his monthly prescriptions are close to a $1,000 - applying to Trillium was very easy, and your deductible is based on income.

Once we meet deductible, they are covering the cost of all of our drugs - saving us nearly $10,000 a year.

Like you, why someone didn't tell us this is beyond me.

How frustrating for you!!

Tara Marie said...

I can see why you are happy....and ticked off. I am thankful though, that this home care nurse was compassionate and 'thought' about realize that she could help.

Yeah about the extra two hours. I hope that it helps in many ways.

Thinking of you.....

Kris said...

GRRR and Wahoo all rolled into one. Love ya

Tammy and Parker said...

Yay! For getting those meds covered!

Anonymous said...


I know that Sid's cousin (that had heart failure 2 years ago) did get his drugs covered retroactively with the Trillium program. It wi worth a try. See you soon.

PS It is a good thing we didn't come on Sunday, Jacob came home on Tuesday with something new. Hopefully we will all be healthy soon.