Ottawa woman with life-threatening disease pleads for medication coverage

Insurers have denied her requests to pay for an as-yet unproven treatment

Ottawa woman with life-threatening disease pleads for medication coverage
An Ottawa woman is appealing to insurers to pay for a potentially life-saving drug that costs $20,000 a year.

Theresa Bertuzzi was diagnosed with autoimmune disease when she was 16 years old, reported CTV News. The condition, where one’s immune system attacks different parts of their own body, first manifested itself as alopecia. Bertuzzi started losing hair all over her body.

As time passed, she suffered even worse autoimmune syndromes. “First I developed Raynaud’s Syndrome, which means my fingers would turn black when I went out in the cold,” she told the news outlet. “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 said the lupus was extremely painful, but she overcame it through a regimen of drugs, steroids, and chemotherapy. She felt good until last year, when she went from being able to run five kilometres to near-total paralysis.

After nine months, she was diagnosed with dermatomyositis, a disease that attacks the muscles. “My family would have to dress me and carry me up the stairs. It was frightening,” she said. “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.”

Bertuzzi, now 44, said she is concerned that her immune system would eventually attack more vital organs like her heart and lungs.

According to her doctor, a drug called Rituxan could be the only way to treat her condition. It’s been approved by Health Canada for cancer treatment but is still in clinical trials for dermatomyositis patients. Bertuzzi said it has shown life-saving results, and that she would require one dose of the drug, which costs $10,000, every six months.

She has applied for coverage to two insurance companies, Sun Life Financial and Desjardins, which both rejected her claims. Her doctor sent letters to appeal on her behalf, but neither company budged. “Through all I’ve been through, it’s just one kick after another from the insurance companies because they just won’t cover the drugs,” Bertuzzi said.

A spokesperson from Desjardins told CTV news that the company cannot cover drugs that are to be used for conditions it hasn’t gotten approval for. After consulting numerous professionals and medical references, it didn’t find sufficient evidence to support the Rituxan’s use for Bertuzzi’s condition, but is open to changing its decision if Bertuzzi can present new information.

Meanwhile, a Sun Life spokesperson told the news outlet that “we cannot discuss the details of any specific client for privacy reasons, [but] someone from our Customer Care team will be reaching out to the family.”

Bertuzzi has also gone to Ontario’s Trillium Drug Program, although she has been told that the chances of getting covered under it are slim.

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