March Update

It has been quite a while since I have posted on here so I thought I should update everyone:

March 2012

First of all, we got some bad news at the hospital on Friday. We were unsuccessful in our efforts to bring Kandis' daily dose of Prednisone down. We started out at 8mL twice per day last September, and we have gotten her down to 8mL once per day - but that is still too much for her little body to handle. Our plan was to lower it to 7mL for a couple of months, and then hopefully eventually get down to 6mL. However, when we started to lower it a few weeks ago, her disease became active again. As a result, Kandis has been struggling with her disease for the past couple weeks. It has been hard for her to get up in the mornings, and she doesn't start to feel better for at least a few hours after. She has been swollen and very sore. It has been really hard to watch her struggle these past couple of weeks because she was doing SO well. Because of this flare-up, we have decided that Kandis is stuck at her unhealthy dose of  Prednisone until she can receive the Tocilizumab. It is unfortunate, but this is the reality of Kandis' disease - it can flare up at any time and come back with a vengeance. Also, on top of all of this, Kandis was sent for X-Rays on her neck, because her doctor is concerned about her lack of mobility. She is concerned about the arthritis permanently damaging the joints in her neck. We are awaiting the results.

There is good news though! We have been accepted and applied to Trillium Drug Coverage. This means Kandis can start on her Tocilizumab as soon as the paperwork is submitted and the hospital can find a supply (her hospital doesn't carry it, as it is not a common drug). Although we are happy that we have finally been covered, we are hesitant to go with the Trillium Drug Coverage for numerous reasons. The main reason is that they view EVERYTHING as disposable income. That means that even our RRSP's are disposable income. Ron and I will not be able to save for a house, our retirement, or even Kandis' secondary education. That is not how we deserve to live. We have decided to fight Manulife again. We found out that her doctor submitted the wrong form to Manulife, and that they just decided not to tell us this because they don't want to have to pay for Kandis' medication. (I need to add that Kandis' doctor pleaded Manulife to cover the medication, she clearly stated in her personal letter to them that this was a 2 year old girl with a very SEVERE form of Systemic-Onset Juvenile Arthritis and that she requires medication as soon as possible to function daily. Clearly the person who dealt with our case does not have children, or a heart.) The letter they sent back shows that the drug is in fact covered by them, but they found a loophole and denied Kandis her important medication "because it is being administered in a hospital setting and should therefore be covered under the hospital's global budget". That means, that because I am unable to safely administer an IV and I require the help of a registered IV Nurse to do so, we don't get the coverage we so desperately need, only because it is administered safely at the hospital.

Unluckily for them, we found and filled out the CORRECT form, and are submitting it ASAP. If we receive coverage through Manulife, the $25,000 medication will be 100% covered and we will only be required to pay the dispensing fee for the pharmacy. We work hard to have benefits! We deserve to be covered!

Bad press can go a long way. I hope that Manulife knows that they messed with the wrong Mommy.