‘Suffer in silence’: Montreal man calls on province to cover treatment for rare skin condition

There is a new treatment available that offers hope to people with Vitiligo, but Quebec is still not paying for it.

Vitiligo is an autoimmune disease where areas of the skin lose their colour, resulting in white patches. It’s a disease that goes beyond skin deep, says Montrealer Ibrahima Sarr.

“A lot of people suffer in silence,” he says.

It’s not just spots on the skin – it causes real suffering, he says. It can lead to social exclusion, stigma and decades of mockery.

Effective treatments were very limited until the arrival of Opzelura, said dermatologist Dr. Wayne Carey.

“This drug has been one of the most successful ones we’ve seen to date for re-pigmentation of the skin,” he says.

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Known by its brand name Opzelura, the topical cream containing ruxolitinib got the green light from Health Canada last October.

Sarr rushed to get this cream. After about two months of use, he says he has never seen such improvement before. Spots around his eyes and nose have almost disappeared.

The results far surpass any other treatment, including light-therapy, adds Sarr. He’s been doing light treatment three times a week for 10 years, but it has side effects, including sun burn.

While the light therapy is covered by provincial health insurance (RAMQ), Opzelura is not.

“It’s excessively expensive,” says Sarr. A tube costs around $1,200 and he must pay out of pocket.

Right now, the cream is available only as a brand-name medication, meaning there’s no cheaper generic version. RAMQ coverage would benefit many, says Carey.

“You can use that cream for patients who have atopic dermatitis, and I guarantee we’re going to find a lot of other diseases that this particular drug will be useful for,” he says.

CTV News reached out to the Ministry of Health for comment but did not receive a response before publication time.

After living with vitiligo for 50 years, Sarr says making the treatment affordable would “truly change the lives of many people.”