B.C. residents at risk of contracting HIV turn to online buyer's club to afford pricey lifesaving drug

B.C. residents at risk of contracting HIV. are turning to an online buyer's club to help them afford an anti-HIV drug that costs $1,000 a month and isn't covered by the provincial drug plan.

Website helps those at risk import cheaper generic version of drug that prevents HIV

Matt Appleton, 33, uses the Davie Buyers Club to access a generic version of the anti-HIV drug Truvada. (Matt Appleton)

B.C. residents at risk of contracting HIV. are turning to an online buyer's club to help them afford an anti-HIV drug that costs $1,000 a month and isn't covered by the provincial drug plan.

"It's ridiculous we have to go to these lengths," said Matt Appleton, 33. "It's a workaround."

For more than a decade, the antiretroviral medication Truvada has been used to treat people living with HIV, but in recent years, it's also been prescribed as a pre-exposure prophylaxis (PrEP), proven to reduce the risk of acquiring the virus by over 90 percent.

Last year, Health Canada approved the use of Truvada as a PrEP but for many of those considered at risk, the cost of using the drug as preventative medicine is simply too high.

So far, Quebec has the only provincial drug plan that pays for it, so some B.C. residents not covered by private insurance are now sourcing it for as low as $65-a-month thanks to guidance from The Davie Buyers Club.

How it started

The Davie Buyers Club was named after The Dallas Buyers Club, an Oscar-nominated film about the real-life story of an AIDS patient in the 80s who smuggled unapproved pharmaceuticals from Mexico into Texas to treat his symptoms.

A graphic from the Davie Buyers Club illustrates the process of ordering generic PrEP online. (Davie Buyers Club)

The website was started last year by a Vancouver health-care worker who says he felt "moral distress" diagnosing men with HIV, knowing there was medication that could have prevented their infection.

"To hold a stranger in my arms in my office as he cries because I've diagnosed him with HIV … that is a heavy experience," said the site's creator whose identity CBC News has agreed not to disclose at his request.

"When you know the situation for that person is preventable, you want to do what you can."

He says he was inspired by similar programs designed to help users access the generic version of the drug in the U.K. and Australia, so he launched the site last June, and it has since had over 4,000 visitors.

Dr. Mark Hull at St. Paul's Immunodeficiency Clinic says data suggests roughly 100 people of the 300 to 500 in B.C. using PrEP, are using the site to source generics, although there's no formal tracking underway.

"It shows you there's a lot of demand but not much in the way of access," he said.

Bringing the drug back from the U.S.

The Davie Buyers Club is essentially an online guide for Canadians looking to import generic versions of Truvada, offering step-by-step instructions on how to place an order and bring it to Canada.

"The first time I did it, I ordered it from one in Swaziland," said Appleton. "My bank blocked the purchase as fraud, and I had to call them."
 
The pharmacy then ships the order to a U.S. mailbox the buyer has previously set up, because Canada does not permit the importation of medication by mail.
 
"Coming back can be daunting," said Appleton. "You're saying you went down there to get drugs which never looks good."
 
A spokesperson for the Canadian Border Services Agency said entry is up to the discretion of border guards, but that broadly speaking, the agency works with Health Canada to determine what drugs can be imported.
 
A Health Canada representative said Canadians are permitted to return with a 90-day supply,"so as not to interrupt a course of treatment" and provided the medication is in its original or pharmacy packaging, clearly indicating the contents.

Public coverage

B.C.'s Health Initiative for Men is now helping those searching for PrEP by referring them to doctors familiar with the medication and monitoring procedures.

Program Manager Joshua Edward says generic importation is the only affordable option for many people without private insurance coverage.

"We are working provincewide to help try and move the dial on public funding for PrEP, but we don't really know what that looks like yet," he said.

The cost of a provincial PrEP program would depend on a number of variables, including how many people are taking the medication and for how long.

The Canadian patent on Truvada is expected to expire this year, potentially providing provincial drug buyers a chance to negotiate cheaper prices.

Meanwhile, Dr. Julio Montaner, the director of the British Columbia Centre for Excellence in HIV/AIDS, says talks continue with officials over how to make PrEP in B.C. more affordable.