For 44-year-old Theresa Bertuzzi, staying healthy has been a constant struggle ever since she was 16 years old and she started losing her hair.
Bertuzzi has been coping with the symptoms of five debilitating autoimmune diseases diagnosed at different stages in her life. If that wasn鈥檛 enough, the Ottawa mother of three is now facing a new uphill battle 鈥� this time against her insurance companies.
Bertuzzi was first diagnosed with autoimmune disease when she developed alopecia areata as a teenager, which causes significant hair loss all over the body.
鈥淲hen you鈥檙e 16 and your hair starts falling out that鈥檚 like the worst thing that could happen to you in the world,鈥� she said in a report that aired on CTV Ottawa on Tuesday. 鈥淚鈥檝e gotten good at wearing wigs.鈥�
That was just the beginning of a life-long struggle.
As a result of her autoimmune disease, Bertuzzi developed Raynaud鈥檚 Syndrome, which causes her fingers to turn black in the cold because it restricts the blood flow in the extremities.
In the years to come, the Ottawa woman was diagnosed with Sjogren鈥檚 Disease, which caused her to lose teeth, and seven years ago she developed lupus, a chronic inflammatory disease that causes her joints to flare up.
Despite her pain, Bertuzzi stayed positive and even founded a successful daycare business that earned her an Ottawa Business Journal鈥檚 Forty under 40 award in 2012.
But in early 2016, her health took a turn for the worse and she was diagnosed with another disease called dermatomyositis, which weakens her muscles.
鈥淢y family would have to dress me and carry me up the stairs. It was frightening,鈥� Bertuzzi said, fighting back tears. 鈥淥ne day you can walk to the store, the next day you couldn鈥檛 get to the store, the next day you couldn鈥檛 lift the milk bag.鈥�
Bertuzzi said she鈥檚 worried her autoimmune disease will one day kill her if she doesn鈥檛 receive the treatment she needs.
鈥淎ny day my autoimmune disease could start attacking my heart and my lungs and at that point it could mean the end of my life,鈥� she said.
A costly new drug
Her doctor has recommended a costly drug called Rituxan, which has already been approved by Health Canada for cancer treatment but is still in the clinical trial stages for the treatment of dermatomyositis.
Because Bertuzzi needs the medicine for dermatomyositis and not for cancer, her insurance companies, Sun Life Financial and Desjardins, have rejected her application.
Without insurance coverage, Bertuzzi will have to pay $10,000 for one dose every six months. She said the companies can easily afford the costs but aren鈥檛 covering it because they claim there isn鈥檛 enough evidence of this drug being used for dermatomyositis.
鈥淚 can go out tomorrow and get a massage and they鈥檒l pay for that, but they won鈥檛 pay for the drug that will save my life,鈥� she said.
Both Desjardins and Sun Life Financial both sympathized with Bertuzzi鈥檚 situation in statements sent to CTV News but said they were unable to cover the drug because it hasn鈥檛 been approved by Health Canada for her specific condition. The insurance companies said they would follow up with her to discuss the policies further.
Bertuzzi said she鈥檚 also applied for coverage through Ontario鈥檚 Trillium Drug Program, a government program that helps residents with high prescription drug costs, but she has been told that is unlikely.
鈥淚鈥檓 most scared I won鈥檛 be there to see my children grow up,鈥� she said. 鈥淚t鈥檚 hard when you鈥檝e paid into these insurance programs and you expected them to be there for you when you鈥檙e sick.
Bertuzzi has started to document her journey and to raise awareness about autoimmune diseases.
With a report from CTV Ottawa鈥檚 Catherine Lathem
