About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

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We Have A Serious, Silent Problem In Canada!

We Have A Serious, Silent Problem In Canada!

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Over the past few days I have been blessed to read messages from and get phone calls from hundreds of people cheering me on and sharing with me their stories and struggles in trying to get treatments.  There are so many people who have been wronged by their insurance companies and we have a serious, silent problem in this country!  Everyone is too afraid to speak up and I can’t blame them at all.  It is horrible to put your life out there in the public eye when you are sick and at your most vulnerable.  You only want to hide yourself away and get better.  It is scary and it is draining to tell your story and put it out there for everyone to judge, especially when insurance companies are fighting you every step of the way.  I have received nothing but positive comments, support and love from everyone and I am so appreciative.  There are good people everywhere and they are all so frustrated that this is happening to me.  The sad part is that I’m not the only one.  This is happening to hundreds of people.  I know, because they have contacted me over the past few days and have told me their stories and it has broken my heart and it has made me mad.  So…  I will continue facing off against the insurance companies and I will keep advocating to get necessary drugs approved by the government and I hope it will help in some way all of those who have reached out to me.

 

It has not been all rainbows and roses though the past few days. I got to deal with the insurance companies too which has been horrible.  Both companies made some poor employee call me to give me the brush off.  They made sure that it was clear that I would not be getting any coverage from them.

 

Here is the load of bull that I have heard from insurance companies over the past few days.

 

  1. Health Canada has not approved this drug for use in Canada, it is still experimental. –  Nope, it is approved in Alberta and Quebec and people from these provinces have been contacting myself and the news team to let them know that they receive these treatments in their provinces.
  2. We don’t cover this drug for people with Dermatomysotitis- Nope, I had a woman from Nova Scotia contact me to let me know that she has this disease and her drugs were covered by the same insurance company as I have, Sun Life. Another woman from Ottawa contacted me to tell me that she has Polymyositis, which is the same disease minus the skin rash, and her treatments were covered by Sun Life too.
  3. Health Canada sent out a warning that this drug can cause heart failure during treatments so you need to have resuscitation equipment available, therefor it has to be given in a hospital and should be covered by OHIP. – Nope, it is given to all sorts of people right here in our own city every single day. They do the treatments at the clinic located at the Riverside Hospital where they have complete access to resuscitation equipment if you happen to be the one in a million people who have a reaction.  Also you misquoted the actual warning.  The warning states that you should have resuscitation equipment present; nowhere does it say that you have to be in a hospital.
  4. There are not enough studies done to prove that Rituxan works on dermatomyositis to justify the expense. – Nope, my brother is a physician and has found over 100 trials that have shown that Rituxan does work on those with dermatomyositis.  By the way insurance agencies, you will be receiving a print out of all of these trials in a large box headed your way for your reading pleasure.  Rituxan is used to treat dermatomyositis across the US, in Europe and in our own provinces.
  5. We do not cover Rituxan- Nope you do cover Rituxan, in fact the poor employee that you had call me yesterday to explain why I am not going to get approval let me know that if I had arthritis you would pay for this drug treatment for me, just not for my disease. She then had to listen to me cry while I shouted “so you are telling me that if I had arthritis you would pay for these treatments????”  Apparently yes they would.  I just got the unlucky disease that is so rare that it didn’t make the page that my doctor has to fill in so there was no little box for her to check.  Now I am just a box that doesn’t exist on a page.  Who knew that my life was only worth a check mark on a page.  Don’t be mad at your employee, by the way, we had to drill her pretty hard before she passed on this information.
  6. Your “consulting physician” reviewed my case and decided that I did not qualify for coverage- No Way!!!! Who is this consulting physician???  Are they a Rheumatologist specializing in autoimmune diseases???  I would suspect not since my doctor, who is a specialist in autoimmune disease says that I absolutely need these treatments.  That is why she sent you a request to cover the treatments.  That is why, when you denied my claim, she took time away from all of her other patients to write again to you to plead my case.  She is an expert in this area, is your physician and expert in this area?  probably not!     I am pretty sure that all rheumatologists, if asked about my case, would say that it is time to try Rituxan.
  7. You are very sympathetic to my situation- Nope, if you were you would pay for the treatments. I have paid monthly payments into your pockets for years and now it is your turn to pay out and cover my treatments.  That is the business you are in.  I also bring Desjardins in a whole lot of business since my company and its 200 employees all pay you monthly payments.  That’s a whole lot of money that you make off of me.  If you were sympathetic you would have contacted me to find out my situation and take it into consideration instead of sending me a form letter that I would read telling me that you have decided that I will not be receiving treatments to save my life.  You would not have wasted my time with appeals for three months.  You would have met myself, my family and my children so you knew exactly who you were denying treatments for.  You should not be allowed to do this and I pray that one day there will be legislation in place that doesn’t allow you to turn down your clients for life saving treatments that their doctors say is absolutely necessary, especially when there is no alternative treatment available.  You don’t care about me or my family or anyone else.  You’re company’s purpose is to make money, not to help others.  You would not have called me yesterday and today just to further rub in my face that I would not be getting treatments from you and have someone explain the reasons why like I am a stupid child.  I am not stupid and I know that all of your claims are false and I can disprove each and everything that you said.  I also have received many, MANY messages from people who heard my story and wanted to share with me how they were wronged by insurance companies.  SO MANY PEOPLE!!!!  All who are just so grateful that someone spoke up against this money making empire.  I have heard stories of people losing limbs because their insurance companies would not pay for drugs they needed; People who lost family members because companies would not step up and cover the drugs that they needed; People who were harassed by companies after losing a child because their insurance company would not give them the time to grieve; People who had to fight for months and months while they were sick and struggling with cancer to get the treatments that they needed, and so many people with autoimmune disease who have had debilitating strokes, suffered kidney damage and dealt with years of pain because they were turned down by their insurance companies.  These people were harassed by their insurance companies and let down and it is not right.  They can’t speak up for themselves but I will.  If any of our politicians are reading this, please, you need to visit this and discuss what kind of legislation can be put in place to force these companies to have to pay up when people who pay into their programs are sick.  They should not be able to pick and choose what life saving drugs they will cover.  If a doctor says that their treatments are necessary then they should have to cover the cost.  That is the risk they take when they take our money each and every single month.

 

For now I will hope that Trillium and the province can help me out while I figure out a way to try and get this drug approved for people with Dermatomyositis.  Lisa Macleod is doing her best to advocate for me and I am so honoured to have such an amazing woman and politician trying to help me.  I am also planning on rolling the dice and pulling the money out of all of our savings to pay for the first treatment so that I have the energy to keep fighting this battle.  I won’t be able to cover many treatments and this will be a massive hit for my family so I will keep fighting for these treatments to be covered.  I have to because within a short time this will financially ruin us.  I won’t stop fighting though, because I need to do this for myself, my family, everyone with autoimmune disease, and everyone who has ever been turned down by their insurance companies.  If you want to help out, please post messages on the Sun Life and Desjardins Facebook pages. Please write your MP’s to encourage them to stand up to these insurance agencies.  And… I’ll keep on fighting too!  XOX

2 Comments

  1. Leslie

    5th Jun 2017 - 12:52 pm

    In Europe, a subcutaneous formulation of Rituxan, called Mabthera, is in use and it is much less expensive. I googled Mabthera in Canada thinking you might have access to it and found this link:

    http://www.newswire.ca/news-releases/new-formulation-of-rituxan-now-available-to-canadians-living-with-non-hodgkins-lymphoma-606246816.html

    I would speak with your physician and see if you could get this subcutaneous formulation. It is MUCH cheaper and if you are paying out of pocket until the insurance company gets their head out of their a$$, this may work for you.

    Much love xoxoxoxo

    • Theresa Bertuzzi

      13th Jun 2017 - 9:20 pm

      Thank you so much for the information!

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About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

Stay Connected

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