SHM to collect information on PrEP use

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Against a backdrop of increasing pre-exposure prophylaxis (PrEP) use in the Netherlands, Stichting HIV Monitoring has been preparing to collect data on former PrEP use among people newly diagnosed with HIV and entering care at Dutch HIV treatment centres. We spoke to SHM researcher and HIV physician, Ferdinand Wit, about the preparations.

“Provision of PrEP care is only now in the process of becoming optimally organised in the Netherlands and, as a result, PrEP is being accessed through both formal and informal channels and it’s use is not always monitored according to established guidelines,” says SHM researcher and HIV treating physician, Ferdinand Wit. This echoes concerns voiced recently by the Netherlands Association for HIV Treating Physicians (Nederlandse Vereniging voor Hiv Behandelaren, NVHB) about the current situation surrounding PrEP in the Netherlands. Although the Dutch ministry of health, welfare and sport has decided that care and monitoring should be carried out by the public health services, these organisations do not yet have the resources to implement this; more funding is needed first.

In the meantime, around 3000 men who have sex with men are believed to be using PrEP through both formal and informal means. There are concerns that informal use of PrEP could lead to suboptimal protection against HIV and result in PrEP failure, in other words acquisition of HIV. PrEP failure can occur is a number of situations. As well as the previously-mentioned group of people using PrEP informally, there is also a group of people who do receive PrEP through formal channels, such as their GP or HIV treatment centre, but who subsequently drop out of care or stop using PrEP despite having a high risk of acquiring HIV. Finally, there are people who had wanted to use PrEP, but were unable to access it and who subsequently became HIV-positive. This failure to access PrEP can also be considered to be a form of PrEP failure. At present, there are no formal data on the incidence of PrEP failure in the Netherlands. “It is important to gain insight into how often PrEP failure occurs in the Netherlands. Stichting HIV Monitoring is able to collect these data at a national level through the HIV treatment centres that provide care to people who have acquired HIV through PrEP failure,” explains Ferdinand.

Although SHM does not yet structurally collect information on PrEP use, the first steps have already been taken. A semi-standardised questionnaire on PrEP use is being developed for patients newly diagnosed with HIV who enter care in HIV treatment centres. The questionnaire seeks to provide answers to questions such as how many people had wanted to use PrEP, but didn’t manage to do so; how many people used PrEP, but stopped and subsequently acquired HIV; and how many people acquired HIV during PrEP use. Finally, it is important to find out whether the people who acquired HIV during PrEP use have developed resistance to certain antiretroviral drugs.

Ferdinand has drafted a proposal for the questionnaire, outlining the information SHM could collect. This proposal has been discussed and approved during a plenary session of the NVHB members’ meeting. “Currently the proposal is being reviewed by the HIV nurse consultants, who are the people who actually carry out the intake interview with people newly diagnosed with HIV. Once they have given their feedback on the proposal, we hope it can be included in the standard questions for people newly-entering care in HIV treatment centres. It is also important that the answers are documented in a standard place in the patient records so that SHM’s data collectors can easily retrieve the information,” says Ferdinand.

Once the proposal has been finalised, SHM will make the necessary changes to its new data entry system, DataCapTree, to enable the information to be collected. In the meantime, the data collectors will inform those people responsible for carrying out the intake interview at the treatment centres about the upcoming changes. The plan is that everything will be ready early summer. It should then be possible to structurally collect data on PrEP use by people newly-registered at an HIV treatment centre, including retrospective data.

“We are all working to achieve zero HIV transmissions in the Netherlands. There’s still plenty to be done to achieve this and proper implementation of PrEP is a key part of the efforts. This is why it is not only important that people are properly supported in PrEP use, but also that we collect information on PrEP failure,” concludes Ferdinand.