Saturday, 14 December 2013

Quick update on medication

So, today I heard from Standard Life.  They are willing to cover Decembers medication on compassionate grounds.  For January we have another $15,000 before we reach the limit, which should cover us for that month.  Until then they have a representative working tirelessly trying to find other coverage through either the government or the drug company itself.

Also, there was a computer error and that is the reason they covered us so much above the limit they were supposed to cut us off at.  They could, legally ask us to repay them the money they over spent on Katha's medication.  Thankfully, both Evraz (the company Amory works for) and Standard Life have decided not to make us repay because of their error.

Honestly, this is a best case scenario.  I didn't think I was going to get any other  answer than you are being denied, good luck on finding other coverage.  Hopefully the government approves us for coverage even though Niemann-Pick Disease is not a disease they cover so far.

Standard Life has informed us that sometimes the drug company as a compassionate use program as well.  So, even if the government says no, we are not completely out of options.

I won't go through the symptoms again as they haven't changed in the last two days.  Keep us in your prayers because they are definitely working!

Thursday, 12 December 2013

December 12, 2013

So, it's been a while and a lot has happened.  Let's start off with some good news because I like good news better than bad.  Katha has been measured for both a wheelchair and walker of her own.  We have already gotten the walker and she uses it at school.  We took the walker she had at school and brought it home.  We keep it in the car and because of the almost 3 feet of snow we have already gotten, she uses it a lot.

Onto the bad news.  Standard Life has decided to discontinue covering Katha's medication.  Actually, they have cut off all coverage for Katha.  They have told us that we have reached the $30,000/3 years limit. 

Since she has already been on the medication for a year it means she won't be covered for anything for 2 more years.  Considering her life expectancy is 2 to 4 years, that leaves us with a serious problem.

We immediately contacted her doctor in Calgary and he has started the process of getting the government to cover at least part of the cost.

What this means for Katha is simply she would start going downhill quickly.  She has already started to backslide slightly even still being on the medication. 

Like I said, Katha now uses her walker a lot.  She is having trouble being understood again, even by me.  She is also exhausted almost all of the time.  Doing little tasks has been very difficult for Katha lately and we only have about 30 days more of her medication.

The doctor seems to think we may be able to get some kind of answer from the government before we run out of medication because he has recommended that we don't lower her dosage until we find out if we will be able to get more.

The most confusing part about this is that Katha's medication is $10,000/month.  Which means we hit the limit that the insurance company has said we reached within 3 months, but they paid for the medication for a year.  Also, if you look back, we were never told about this limit until now.  At the time of getting approved for coverage for the medication they told us that there is no limit on the coverage for this medication.

Even after getting denied I got in contact with the drug company who again conference called the insurance company with me and again they told us that there is no limits on the coverage for the medication and that we simply hadn't filled out the correct forms yet and then coverage should continue.  After speaking with the drug company representative some more they informed us that it could be the company Amory works for that is telling the insurance company to deny the coverage.

The day before I was on the phone with the drug company Amory found out from his union representative that Evraz has to pay Standard Life back for all prescription coverage so they get to change which medications get covered with absolutely no notice to the employees.  So, if something costs too much they can discontinue coverage and there is absolutely nothing we can do.

In the meantime I also found out that if we were to go through something like Alberta Blue Cross, they won't cover her medication, so that is pointless.  However, there is a government program that will help us with things like nursing and child care for when Katha gets really bad or if she has an appointment we can still send the boys to school and they will send someone to look after the boys until I can get home.

Also, if we do get approved for government assistance with the medication but they will only cover 70% of the cost, this other program will help us with the other 30%.

We found out that the recommendation for an assessment for Katha's behaviour issues, her possible dyslexia and her exhaustion has been given to Aspire.  The cost of this assessment is $1400 and because Katha has no medical coverage this is all out of pocket.  So, I called Dr. Khan and he will try to get someone to come to the children's hospital to do the assessment so that the cost can be covered through Alberta Health Care.  They didn't do this initially because the psychiatrist that usually does this is no longer at the children's so they didn't think it could be done this way.  Hopefully they find a way to do this.  If not, we will use some of the donations that people have already generously given us for Katha's medical expenses.

Onto the symptoms:

Enlarged Liver and Spleen:  This hasn't been checked since my last blog, but we have no reason to believe that it's not different.  That is the Liver is normal but the spleen is slightly enlarged.

Ataxia (unsteady gait):  Like I said previously, Katha has started using a walker whenever she's not in the house.  In fact, when going out she actually asks to use it.  This is unlike her, she has always wanted to be very independent.  However, if she doesn't use it in the snow we can almost guarantee she will fall down at some point.  Also, she like to hit me in the back of the legs with the walker while we are shopping.

Dysarthria (slurred speech):  Katha speech has become very slurred.  She is very difficult to understand and sometimes I can't even understand her.  Unless she has a lot of energy and they she becomes more articulate and will tell long stories.

Dysphagia (trouble swallowing):  Katha has had a bad cold for about 2 weeks now.  She has trouble coughing hard enough to get the phlegm out and it's really affected her sleep.  However, both her brothers got the flu and she didn't.  I was very impressed considering she's the one with the auto-immune deficiency.  She still drools a little when not paying attention and will often choke on any fluids.  But she can still get a 16 oz. steak down in under 15 minutes.  So, she's not letting that get to her.

Basal Ganglia (holding limbs at awkward positions): Katha does this but not constantly.

Dementia (memory loss):  Katha's concept of time is completely off.  She will think something that happened weeks ago happened yesterday.  For example, we took her cousin Emma to Dominik's birthday party in Alix 2 weeks ago and she asked last night when we were going to pick up Emma for Dom's party.  She had completely forgotten all about it, until she was reminded and then it will come back to her.

Seizures:  Katha still has not had a seizure and hopefully she won't because any mediation will no longer be covered.

Gelastic Cataplexy (falling down in response to a large emotional outburst):   This still happens but it's a lot easier to handle with the walker because Katha can catch herself before she falls down completely.  She has also started crying randomly for no reason.  When asked why she is crying she honestly does not know.

Sleep related disorders:  Katha sleeps a lot.  She will take naps at school, then come home and just want to go to bed.   Even on weekends she will get up to eat and if we go out to do something she will but she would prefer to stay in bed.  We try to make her get up and get active as much as we can, though because otherwise she will lose the ability to get up and get going.

Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down):   Katha can still do this occasionally but it's extremely difficult for her to look up.  Down doesn't seem to be as much of a problem.