Why an HIV prevention drug isn't getting into the hands of those who need it most

Three years after a drug that prevents HIV transmission was added to Nova Scotia's provincial pharmacare program, some people are still having difficulty accessing it.

Pre-exposure prophylaxis, or PrEP, is a drug that can be taken daily by people at a high risk of HIV infection, like men who have sex with men or people who inject drugs.

Back in 2018, following a spike in new HIV infections, the province added PrEP to its provincial pharmacare program, which aims to help Nova Scotians who have no private drug coverage and can prove the cost of prescription drugs have become a financial burden.

But Chris Aucoin, the executive director of the AIDS Coalition of Nova Scotia, said the drug would still be out of reach for many.

"Our core concern is that the people who would most benefit from this are the least likely to have access to it," he said. 

"Most of the high-risk populations for HIV in Nova Scotia are communities that also tend to be underemployed and economically disadvantaged, to some degree or another."

In order to qualify for the Nova Scotia family pharmacare program, people must be a resident of Nova Scotia, with a valid Nova Scotia Health card. They must also agree to family income verification through the Canada Revenue Agency each year.

Getting pharmacare through the program is not free — anyone enrolled is still required to pay a part of the drug's cost, as well as an annual family co-payment. Deductible maximums are scaled to a family's size and annual income.

As well, anyone who has another drug plan wouldn't qualify for it, which leaves under-insured Nova Scotians behind.

'It very much is a luxury'

That's what happened to Mike Hall, a PhD student at Dalhousie University. He tried to get a prescription for PrEP in 2019, but even with his insurance, he wouldn't be able to afford it.

Hall's health plan caps out at $500 annually, which meant that if he got PrEP, he would have to pay the rest out of pocket. The annual cost of the drug can run about $3,000, or $250 per month.

That amount just isn't feasible for Hall.

"PrEP is just so out of the question," he said. "To a lot of us, it very much is a luxury ... and I think that's where we're wrong. I think it needs to not be a luxury."

There were also other hurdles. Hall needed a physician exemption letter to get coverage for PrEP, but his primary care physician wouldn't sign off on it. He then went to the Halifax Sexual Health Centre, which did sign off on the letter, but he ended up not going through with getting the drug due to how much he would have to pay.

As PrEP gets cheaper each year and more and more generic options become available, Hall believes the government should be moving toward providing universal access.

While there has been talk about a universal pharmacare system in Canada, Hall — who has had to discontinue using other medications during COVID-19 because of their high costs — would like to see it happen as soon as possible.

"I would love to see more concrete movement at the federal level to get the federal formulary in place, to get the groundwork in place to enable the provinces to cover any pharmacy expenses, any drug expenses through the provincial health-care plans," he said.

19 new cases in 2019

In previous years, the province has seen about 15 to 17 new HIV cases per year. In 2018, that number rose to 31, prompting the government to add PrEP to its formulary.

But it's unclear how much of a difference that made. According to the Department of Health, there were 19 new infections in 2019, which indicates the numbers returned to the average. There are no numbers available yet for 2020.

"Frankly, I don't think the province should be satisfied with average coverage, or average results for people being infected with HIV," said Matt Numer, an assistant professor in Dalhousie's School of Health and Human Performance and chair of Nova Scotia's PrEP Action Committee. 

"We have the tools to stop it completely right now. We should have zero cases per year. With the right efforts behind this initiative, we could get to zero."

He pointed to British Columbia, which made PrEP available at no cost to high-risk individuals in January 2018, in partnership with the B.C. Centre for Excellence for HIV/AIDS. New HIV cases in the province are now at an all-time low.

Numer also said each new HIV case costs about $1 million over the course of an individual's lifetime to treat, so covering PrEP for everyone who would want it would make financial sense.

Numer said most people who already have HIV are on treatments that would prevent them from spreading it, so most of the people who are spreading HIV don't know they're infected. He said accessible, universal coverage would prevent those cases from happening.

"If COVID has taught us anything, it's that public health measures, if done in advance, can be extremely effective," he said.

Province considering options

In an email, Marla MacInnis, spokesperson for the Department of Health and Wellness, said the province is looking at the various barriers to accessing PrEP.

"Department staff have conducted work, including stakeholder consultations, regarding the barriers to Nova Scotians accessing PrEP which includes financial barriers but also includes other aspects such as education and prescriber access," she said.

"Various options are currently being developed and will be considered by the department."

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