Could Someone Explain the Rules?

 When you earn the dubious distinction of being medically complex, you get to learn lots of things about health care that you really hoped you would never have to.  The last month has been severely excruciating as it just seems that everywhere we have turned lately we have experienced some kind of lunacy.  Let me explain….

You have to be on Drugs!

Our first series of adventures involves our drug coverage.  Both Susan and I have private drug plans through our benefits at work.  We are well insured…or so we think.  In addition, we have a provincial pharmacare plan…YAY US!  The plans don’t exactly mesh real well.  Each insurance company and our provincial government are equally irritating to deal with.  Let’s just be honest; government operates like a badly run - politically motivated insurance company.  The only two entities that still use fax machines (government and insurance companies).  April 1^st marks the start of our pharmacare year.  Not a coincidence that it falls on April Fool’s Day.  On this day our drugs are charged to our private insurers.  These amounts accumulate as part of our pharmacare deductible.  Once we hit our pharmacare deductible then our private insurers are off the hook; for the balance of the year our drug charges go to pharmacare.  I am guessing that it will take us until June or July to hit our pharmacare deductible.  So far; this is fairly standard insurance stuff.  Now remember we are special.  We don’t do anything normal.  There are 3 meds that we get that require an Exceptional Drug Status (EDS) authorization.  These tend to be our pricier meds.  The EDS is filled out by our Doctors and sent to pharmacare.   This is done, behind the scenes, without any involvement from us.  If it gets missed; we have no idea.  This has happened.  Imagine going to pick up a med and being told that pharmacare won’t cover it because your EDS expired.  What do you do?  One would assume that you would pay out of pocket because you can’t go without the med.  You could just get the paperwork completed and get reimbursed later.  That would make sense... right?  Not with pharmacare.  Once you pay out of pocket…you are done.  You can’t get reimbursed.  Yes…this is insane.  The patient is punished because a Doctor forgot to submit the correct paperwork on time.  Remember this all goes on without your knowledge.  You only find out when you order and pick up your prescription.  A point in time when you NEED the med…..not optional for you to leave the med at the pharmacy.  This is our government plan in action. 

The insurance companies are equally insane.  Specifically, Great West Life does not recognize the EDS form from the government.  You have to fill out a “Special” Great West Life form for a specific med.  Make an appointment with your Doctor and have them complete the “special” form.  Again…the exceptional meds have to be re-approved on an annual basis.  This is why we prepare for our 6 month appointments with our Doctors and have a litany of forms and paperwork in hand.  We have to review with our nurse clinicians and Doctors.  We have to make sure all of the paperwork is up to date.  Folks, we are turning valuable health care resources (Doctors and Nurses) into data entry clerks.  I am also not considering the amount of hassle we go through on an ongoing basis to manage all of the “drug” issues.   There is more…much more.  We have had transcription errors and compounds mixed incorrectly.  A regular three ring circus.

How Government Makes Health Care Cuts

A few years back some of our drug coverage and pharmacare rules changed.  Many so called “natural” items were removed from the drug formulary.  This means things like vitamins or natural remedies etc are not covered.  Doesn’t seem like a big deal.  The funny thing is that these include some very necessary items …such as sodium bicarbonate and sodium citrate.  Very common among the cardiac crowd.  You may say…wait a minute…sodium bicarbonate is just baking soda.  True.  However, to get it emulsified and mixed into a liquid from a pharmacy will cost you over $100 a bottle.  If you go through a bottle every couple of weeks that adds up.  Some resourceful parents obtained the recipe from the Children’s Hospital and shared it.  For a couple of years we happily mixed up our own brew at home.  It was easy and we got good results.  Then we got a new nephrologist who was horrified that we “parents” had setup drug labs in our kitchens and asked us to switch to sodium citrate.  In fairness...it is a better med.  Better for blood pressure etc.  Again this med is not covered because it is considered “natural.”  Our nephrologist thankfully did not leave us high and dry.  Through some bizarre manipulation of the “system” she orders the med and we get it at no charge.  No pharmacare…no insurance company.  I don’t have any idea how this happens but we get the med at no charge.  Just one of those bizarre anomalies where we don’t ask questions. I'm being intentionally vague here as I am not completely sure this process is kosher.

The rule change that I referred to above also involved making some commonly available meds that were only available via prescription available as an over the counter drug.  I must give the bean counters kudos here.  By making it over the counter and more accessible they also don’t cover it under pharmacare (you don't need a prescription remember).  You have to pay for it out of pocket.  I told you those bean counters were crafty.  If the general public only knew how they were getting less and less service from their public system.  The insurance companies are complicit in this as well.  As soon as the gov’t changes rules the insurance companies follow suit.  So if you thought you could get coverage through private insurance when the government stiffs you; you would be sadly mistaken.  The patient and the taxpayer get the short end of the stick…again.

Drug coverage isn’t the only issue.  It is the tip of the iceberg.  As I have shared many times we see great disparity between adult and pediatric cardiology.  Peds Cardiology is unique in Manitoba.  When our MB patients are sent out of province for surgery, the province picks up the tab for airfare and lodging.  This is a huge benefit.  In the adult program you get no such benefit.  No expenses are paid for.  Actually this is ageism and discriminatory....but i digress.

In 2009, when Susan had her surgery in Edmonton I had to pay my own expenses to go with her.  Fortunately, I was able to find an obscure clause in our benefits package and was able to get most of my expenses covered.  That was a huge find; but I bet most people have no idea what is in their benefit plans.  I certainly wasn’t aware of this provision until I looked, and I was the HR Manager.  

What is even more bizarre is that as we prepare for another trip to Edmonton for surgery we have now been turned down by both our insurance companies related to our non-medical expenses.  Keep in mind I am with a different employer and therefore a different benefit plan.  Yes…benefit packages can vary significantly.

Health Care is NOT Free!

Being sick is a very expensive business.  If you think health care in Canada is universal you are sadly mistaken.  There are so many rules and exceptions to rules that it is truly dizzying.  Many Canadians are under the illusion that they don't need to worry about health care costs they either don’t carry extended health insurance coverage or have no idea what their plans include and exclude.  If you are unfortunate enough to have a serious illness the expenses that are not covered by medicare can still devastate you financially.  This is why we are seeing more and more GoFund Me pages for people who need to raise money to support themselves as they face some of these very daunting and very real costs.

I am also exceedingly frustrated that I see so many inconsistencies in the system.  One program is funded and another one is not.  One type of cost is covered and another is not.  If someone would just explain the rules and not change them; I could prepare and be ready for life’s emergencies.  What we are faced with seems like anarchy.  It is amazing that 8 years later we are still encounter new issues to deal with.

There is another issue that is worth mentioning.  Imagine trying to do all this navigating through insurance companies and gov't programs while being sick or alone.  Another really important reason why patients need advocates and caregivers to help with all of the bureaucracy.  It is essential to have the emotional and technical support.  In my opinion this kind of support is not optional.