Crowdfunding raises $38,000 for Quebec cancer patient
Samantha Poulin has aggressive form of lymphoma, needs drug that costs $15,000 a dose
Today is the day Samantha Poulin has been waiting for.
The 28-year-old woman from Trois-Rivières is set to begin her treatments today for an aggressive form of lymphoma — but this day hasn’t come without a battle.
Poulin's cancer was unresponsive to radiation treatment and chemotherapy, and the treatment that could save her life is not covered by Quebec's public drug insurance plan.
Brentuximab vedotin, otherwise known as Adcetris, is a drug treatment that costs $15,000 per dose. The clinical trials for the drug show promise, with a third of patients with the same condition going into full remission after just two treatments, said Olivia Collette, Poulin’s cousin.
However, some patients have needed up to 16 doses, she added.
Statement from INESSS
The Institut national d'excellence en santé et en services sociaux (INESSS) will not evaluate a product until its release has been approved by Health Canada, which ensures that the drug product is safe, effective and of high quality. After this has been done, if the manufacturer submits a complete application to register a product, INESSS will begin the evaluation process for registration on the medication lists.
In mid-October, Collette launched a crowdfunding campaign on Indiegogo.com that has raised almost $38,000 to pay for Poulin’s treatments. She said they got a slight discount on the treatment, so that amount would be enough to cover three doses.
Poulin originally planned to travel to Boston, MA to participate in a clinical trial for the treatment, until a Montreal clinic offered her a free room.
"This is my last chance. Because if it doesn't work, I'm done," she told CBC News last week.
RAMQ, the province’s medicare program, doesn’t cover Adcetris as it hasn’t been approved by the Institut national d’excellence en santé et en services sociaux (INESSS).
The drug, however, was approved by Health Canada last February and is used in other parts of the country.
Though Adcetris isn’t approved in Quebec yet, INESSS spokeswoman Amélie Légaré said that the organization set up in January 2012 an innovation committee to identify potential solutions for improving access to drugs deemed promising for end-of-life cancer patients.
However, the INESSS’s drug approval policy stipulates that it must consider whether medications are reasonably priced and cost-effective, and Adcetris has not yet passed those evaluations.
Collette said that since April, Poulin has had to stay overnight in the hospital several times and has undergone a litany of tests -- biopsies, CT scans, etc.
She said the delays at the Quebec government level related to the cost of the drug are short-sighted.
“She’s a very, very, very sick person,” Collette said.
“The burden on the system that’s been created by not giving her the treatment that she needed is much greater than what it would have cost to give her the treatment.”