Theresa Bertuzzi, 44, says it’s the way she has always lived her life, “always a smile”.  In fact her smile and contagious laugh could bring joy to anyone who meets her.  That positive attitude though, hasn’t always been easy.   

At just 16 years old, Bertuzzi was diagnosed with autoimmune disease, “your immune system attacks different parts of your body.”

For Bertuzzi the disease first surfaced as Alopecia, causing hair loss all over the body, “when you’re 16 and your hair starts falling out that’s like the worst thing that could happen to you in the world,” Bertuzzi laughs, “I’ve gotten good at wearing wigs.”

After coming to terms with baldness, Bertuzzi would face even more obstacles over the years, and a list of autoimmune diseases. 

“First I developed Raynaud’s Syndrome, which means my fingers would turn black when I went out in the cold, my blood vessels wouldn’t expand properly. After that I developed Sjogren’s Disease, I started losing my teeth.  Then about seven years ago I was diagnosed with Lupus, so my joints started to flare up.”

Bertuzzi says the Lupus was extremely painful but with a cocktail of drugs, steroids and chemotherapy, she was able to win.  The Lupus was in remission. 

Life was on track.  Bertuzzi, a wife and mother of three, was also a successful entrepreneur.  A co-founder of Ottawa-based daycare, Tiny Hoppers, Bertuzzi was the recipient of the Ottawa Business Journal’s Forty Under 40 award in 2012. Life was going well.

Then in early 2016, Bertuzzi suffered another blow, “I went from being an active person who could run five-kilometers, within three months I was almost completely paralyzed.”

Nine-months later, Bertuzzi was diagnosed with Dermatomyositis, a disease that attacks the muscles.  She was fighting for her life.

“My family would have to dress me and carry me up the stairs.  It was frightening,” she said holding back tears, “one day you can walk to the store, the next day you couldn’t get to the store, the next day you couldn’t lift the milk bag.”

She worries the disease will one day kill her, “any day my autoimmune disease could start attacking my heart and my lungs and at that point it could mean the end of my life.”

Bertuzzi’s doctor says the only treatment could be a costly drug called Rituxan.  The drug, approved by Health Canada for cancer treatment, is still at the clinical trial stage for Dermatomyositis patients.  But Bertuzzi says the results are life-saving.  She would require one-dose, worth $10,000, every six months.  When she put her claim through to her insurance companies, Sun Life Financial and Desjardins, both companies denied her claim.  Her doctor sent letters, appealing the decisions, and once again the companies rejected the claims.

“It’s really not the money for them it’s the policy,” Bertuzzi says, “through all I’ve been through its just one kick after another from the insurance companies because they just won’t cover the drugs.”

In a statement to CTV, a spokesperson for the insurance company Desjardins says,

At Desjardins, we strive to offer our clients the highest level of service. As an optimal health manager, it is our priority to monitor drug usage so that insureds get the optimal treatment, as well as to manage plan costs wisely.

We understand how difficult the situation is but in this particular case, Health Canada has not approved this particular drug for the specified condition. When that is the case, it is standard practice that we consult the appropriate professionals and multiple medical references to ensure there is evidence for successful use of that drug before we approve the claim. In this case, our review indicated that the evidence of this drug for this condition is insufficient. As per our letter to the client, we are certainly open to reviewing the case again if new information is provided. However, given the lack of evidence and without any new information, our decision on the case must stand in line with our established processes and industry standards.”

We certainly invite the client to reach out to us if there is more information to share.”

A Sun Life Financial spokesperson tells CTV,

"We empathize with Mrs. Bertuzzi's situation. Although we cannot discuss the details of any specific client for privacy reasons, someone from our Customer Care team will be reaching out to the family to discuss the circumstances of their claim."

Bertuzzi is frustrated, and feeling too weak to fight, but knows she has so much to fight for, “I’m most scared I won’t be there to see my children grow-up,” Bertuzzi says in tears, “I can go out tomorrow and get a massage and they’ll pay for that, but they won’t pay for the drug that will save my life.”

Bertuzzi has applied for coverage through Ontario’s Trillium Drug Program, but has been told that doesn’t look promising either.

“They don’t want to know that if you want to pay for these treatments you’re going to have to sell your house.”

Bertuzzi has started a blog to document her journey and hopes it may raise awareness of her situation and provide comfort to others also fighting insurance companies for coverage.