Five years ago, Felix Tang’s eczema was a debilitating accompaniment to stress. The chronic inflammatory skin condition was spread all over his body, his arms and legs covered with a deep-seated itch that oozed clear liquid.
No solution seemed permanent. Tang changed his diet, he prioritized sleep to reduce stress, he took steroids that relieved the itch but left him hopped up on drugs with the promise of a wicked skin flare up when he eventually stopped taking them.
Out of options, Tang’s doctor recommended him to a dermatologist conducting a clinical trial for dupilumab, a biologic used internationally to treat those who have moderate to severe eczema.
Finally, he found relief. It’s hard to explain, Tang says, but he does his best:
“The drug works really well because it takes the itch out from inside you.”
But eczema sufferers and advocates are worried people won’t have equal access to the drug after the Canadian Agency for Drugs and Technologies in Health (CADTH) recommended public drug plans not reimburse dupilumab for adults with eczema.
If the provinces follow CADTH’s recommendation, those whose private drug plans won’t cover it are looking at a hefty bill. Without her current coverage, Erin Schroeder, a mother of three living in northern Alberta, says she’d have to pay roughly $1,700 per month. That’s the price for one box, she says, which contains two syringes that provide one month of relief.
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“It’s been a very long, frustrating cycle of nothing is working,” Schroeder says. “My first shot, those two weeks, I just felt the redness going away. It was amazing.”
She doesn’t want to go back to wearing socks to bed on her hands just to keep herself from accidentally gouging her already irritated skin while she sleeps. Schroeder is adamant she’d find a way to pay even if her drug plan changes its coverage policy at a later date.
Even beyond private plans, Amanda Cresswell-Melville says there’s a real concern about equal access. Cresswell-Melville is executive director of the Eczema Society of Canada, which denounced CADTH’s recommendation.
Although many people suffer from eczema, the chronic condition is a spectrum and only a small number of people suffer as intensely or worse than Tang and Schroeder. But, she says it’s important that people realize, “those patients are suffering and they deserve access to effective therapies.”
Tang is quite blunt, at its current price point — tens of thousands of dollars for a year’s supply — dupilumab simply does not fit into his budget. This, he says, despite the fact that he has no financial dependents and makes a decent living.
“If you have to pay $30-$35,000 per year after tax dollars for one medication, I don’t think that is really accessible to any family, any one person,” Tang says, but, “I don’t know what other options we have.”
Tang is able to access dupilumab because of the clinical trial, which he has been part of four years now. He understands the reasoning behind CADTH’s decision, including gaps in data on the long-term safety of the drug.
But what about the people for whom eczema is a debilitating condition?
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“My eczema is severe. It really really affects me and my ability to live day-to-day when it flares up. Obviously, I want to have access to medication at a reasonable cost,” he says.
“How is the healthcare system going to deal with all these new drugs at these extremely high price points? I think that’s the challenge.”
Cresswell-Melville says the Eczema Society is reaching out to provincial health ministers directly to plead their case.
“We hope that this recommendation is not the final word on this,” she says. “We hope the provinces will still consider patient need, how desperate patients are.”