How to provide PrEP – badly

Interviews with professionals who provide PrEP in Ontario, Canada’s most populous province, provide a rich critique of the way that institutional and structural factors limit accessibility to the HIV prevention method and also suggest ways it could be improved.

The qualitative study, by Jad Sinno and colleagues from the University of Toronto, is part of the PrEP Implementation Project (PRIMP), a series of studies of the implementation of PrEP in British Columbia and Ontario.

Its most consistent finding is that the healthcare system in Ontario and the rest of Canada, which has been described in other studies as a “confusing patchwork”, creates series of perverse incentives and disincentives to healthcare workers to provide PrEP in a way that it equitable, accessible and affordable to potential users and which addresses their sexual health needs in a holistic and person-centred way. 

How Canada funds PrEP

In British Columbia, PrEP is publicly funded by the province’s HIV Drug Treatment Program administered by the BC Centre for Excellence in HIV/AIDS. In Ontario, however, only certain groups receive publicly-funded treatment and others have to navigate a complex network of insurance qualification thresholds and co-pays.  This has had obvious effects on PrEP usage. For instance, a PRIMP survey of potential, but not current users of PrEP in both provinces found that 43% in Ontario said unaffordability was their main reason for not using PrEP, compared with only 16% in British Columbia. 

The fragmentation and inefficiency of the Canadian system may explain why PrEP usage is lower there than in comparable countries. Estimating PrEP usage is hard, as people may stop and re-start it, but if one looks at the number of people ever starting PrEP, which is the easiest figure to estimate, about 22,300 Canadians had started PrEP up till the end of 2022. That is about one per 1724 Canadians (0.056%), which compares to one in 870 people in the US (0.115%) and one in 776 people in the UK (0.13%).  

In Canada generally, tests and diagnostics are considered part of public healthcare and funded centrally, but drugs and other treatments are usually funded privately, by individuals or their insurers, and publicly-funded schemes are only available to specific populations. In Ontario, PrEP, like other medicines, is provided free of charge to people under 25 and over 65. Others must pay for PrEP using private insurance (typically provided by employers) or through social assistance programmes, but there may be out-of-pocket payments: co-pays vary from 50% to 80% of the cost of PrEP, which in Canada is CA$250 a month (£143, US$183).

However the expense to PrEP users is by no means the only financial barrier to accessing PrEP. These interviews were with healthcare workers, and they too revealed that the healthcare system is structured in such a way that providing PrEP “in a patient-centred way is not particularly lucrative”, to quote one of the participants whose remark ended up in the study’s title.

Financial disincentives for health workers

The study, which was done via discussions over Zoom, each with one to four people, involved nine healthcare providers – primary care and infectious disease physicians, nurses, pharmacists and counsellors – seven workers in community-based organisations (CBOs), and four public health officials, all with knowledge and experience of PrEP provision.

One issue that came up immediately was the way that physicians are reimbursed per patient under the Canadian public healthcare system. It can be done in two ways. Some clinics operate under a fee-for-service model – they get a sum per patient visit, with some variation according to the service provided. Others operate under a capitation model – this provides a lump sum per patient on their books, regardless of how many visits they make, but varies the fee according to patient characteristics, the most important of which is age (so a clinic gets less for young patients than older ones).

Both of these offer perverse incentives to offer a bad service to people who may need PrEP. The fee-for-service model incentivises clinics to maximise the number of appointments, while minimising their length, resulting in an number of checkups and dispensations that may be onerous – particularly in a country where long distances  to clinics may be an issue. A CBO worker said that clients often cannot access PrEP due to limited time with physicians “who tell them right up, ‘we have five minutes’”. 

Under capitation, a model often used in primary care, the Canadian Health ministry assumes that “20 to 30 years olds” are generally healthy and will have few clinic visits. That may be a fair assumption in many cases, but not for people taking PrEP. This acts as a disincentive for general practitioners (GPs) to offer PrEP because, as one interviewee said, “they’re not making any money” out of it.

Both systems operate to limit the quality of service offered to people who need PrEP. The fee-for-service model incentivises brief appointments where doctor and patient have little chance to discuss anything other than taking a test and dispensing pills. The capitation model prevents general practitioners developing expertise and experience in providing PrEP. As one GP put it:

“It actually takes a lot of time to prescribe PrEP… You require every three months testing and screening, and swabs if you’re doing testing appropriately”.

Participants of the study felt, according to the authors, that “a comprehensive and holistic approach to healthcare is currently missing from how primary care is currently practised in Ontario.” PrEP need, and the decision to ask about it may be the tip of an iceberg of other needs that could be explored in a less time-pressured sexual health service. As one CBO worker put it:

“Beyond sexual health, how is their mental health, how are things going in their personal lives? Do they need support around housing, or food?”

Assessment for PrEP and for related needs has been recognised as an area suited to a nurse-led model of care, but in Canada there is a disincentive for physicians to facilitate this. The authors explain: ”Due to policies regarding how physicians bill for services, clinics have been…disincentivised from hiring nurses and other administrative support to offload some of the PrEP care because these staff cannot bill their services to provincial healthcare plans.” 

As one GP put it:

“If you’re putting a lot of work on to that nurse, you have to pay for their time, so how are you going to make the money that will help pay that person’s salary?”  

In other words, the current funding structure works directly against such nurse-led services because they would starve practices of the very funds needed to support them. A grant programme that could enable HIV clinicians to hire nursing and administrative support could do this; one GP mentioned that they had heard of such grants, but the authors say that if such programmes ever existed, they dried up during the COVID epidemic.

Providing comprehensive sexual health

Other aspects of PrEP provision in Canada may have more parallels with PrEP provision in other countries. One was the lack of expertise among primary care physicians and others operating outside the small number serving inner-city populations already aware of PrEP. One the one hand, one nurse practitioner said 

“There is an expectation for primary care practitioners to know everything about everything…the PrEP guidelines are relatively new, so it’s just another thing to learn.”

But a staff member at a CBO saw physicians’ reluctant to engage with PrEP-seeking patients as a manifestation of discomfort and stigma in talking about sexual health: 

“Every single primary care provider knows that…sexual health is part of human nature, so…it’s ridiculous that they don’t know how to engage with a patient that is having some difficult times in their sexual health. Instead, they get referred to some different place where they think it’s appropriate to access those services.”

The result is that the burden falls on patients to advocate for their own sexual health, as one CBO staffer said: 

“There’s a lot of education for PrEP users, and potential PrEP users, have to do for themselves before they can get on PrEP”.

And people in less advantaged communities may have the most self advocacy to do:

"Outside the downtown core, [when] we’re looking at racialized communities, it gets even more challenging for them… to find a family doctor who understands about PrEP, who understands about sexual health, who understands about queer health in a non-shaming way.”

The assumption of neoliberalism, the ideology the authors see underlying the current problematic healthcare system structures in Canada, is that everyone should acquire the knowledge and confidence to be a self-advocate. Even the model of the “Expert Patient”, a commonplace of AIDS activism, may feed into this, as it implies that failing to acquire the skills needed to self-advocate is a matter of lack of will, rather than the structural barriers that may face, for instance, racial or gender minorities. 

There are alternatives, and some of them are already in place for other conditions. In Ontario, for instance, hepatitis C care services are provincially funded, allowing services to be supported by or attached to a community health centre that can also do outreach work.

A nurse practitioner who works for an organisation that has managed to secure private funding for similar, outreach-based sexual health work commented that publicly-funded services have both the time and experienced staff to offer sexual health care that is more person centred - and may also be more effective. She said:

“Our PrEP work and the outreach we do is privately funded but shouldn’t be, because in terms the cost to the system and preventing HIV transmission, there should be a role for people with lived experience that’s provincially funded.”

She continued with an example:

“It just has to come together. [Say] someone’s just had a devastating breakup and their life is in chaos and maybe they’re doing some maladaptive coping, I mean it would be a bit irresponsible just to move forward with the PrEP visit without discussing mental health.”

Evidence that such state funding brings in increasing dividends comes from British Columbia where public funding has been associated with increased PrEP awareness and use compared with other provinces.

The authors advocate not only for statewide funding of PrEP, but moving beyond a risk-based framework altogether that merely tots up partners and dispenses pills, instead providing it as part of “a unified public health system with comprehensive rights-based and equity-oriented healthcare.”