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 wasnât enough, the Ottawa mother of three is now facing a new uphill battle â 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.
âWhen youâre 16 and your hair starts falling out thatâs like the worst thing that could happen to you in the world,â she said in a report that aired on CTV Ottawa on Tuesday. âIâve gotten good at wearing wigs.â
That was just the beginning of a life-long struggle.
As a result of her autoimmune disease, Bertuzzi developed Raynaudâs 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 Sjogrenâs 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 Journalâs 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.
âMy family would have to dress me and carry me up the stairs. It was frightening,â Bertuzzi said, fighting back tears. âOne day you can walk to the store, the next day you couldnât get to the store, the next day you couldnât lift the milk bag.â
Bertuzzi said sheâs worried her autoimmune disease will one day kill her if she doesnât receive the treatment she needs.
âAny day my autoimmune disease could start attacking my heart and my lungs and at that point it could mean the end of my life,â 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 arenât covering it because they claim there isnât enough evidence of this drug being used for dermatomyositis.
âI can go out tomorrow and get a massage and theyâll pay for that, but they wonât pay for the drug that will save my life,â she said.
Both Desjardins and Sun Life Financial both sympathized with Bertuzziâs situation in statements sent to Âéśš´ŤĂ˝ but said they were unable to cover the drug because it hasnât 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 sheâs also applied for coverage through Ontarioâs Trillium Drug Program, a government program that helps residents with high prescription drug costs, but she has been told that is unlikely.
âIâm most scared I wonât be there to see my children grow up,â she said. âItâs hard when youâve paid into these insurance programs and you expected them to be there for you when youâre sick.
Bertuzzi has started to document her journey and to raise awareness about autoimmune diseases.
With a report from CTV Ottawaâs Catherine Lathem
