Jordy (real name known to the editors), registered for the PrEP trial in Amsterdam. People with an increased risk of HIV can receive PrEP pills there for a small fee via the GGD. But there wasn’t enough room, so Jordy got on the waiting list.
A few months later, while he was still on the waiting list, he was found to be HIV positive. “That really came as a big shock,” he tells RTL Nieuws. “You know HIV is permanent.” Jordy suffered mainly mentally. “Negative thoughts were constantly running through my head, such as: I am now ruined and will never find a partner. I have also experienced that people no longer dared to touch me for fear of being infected themselves. While you cannot transfer it if you are taking medication, but unfortunately the stigma surrounding HIV and the ignorance about it is still very high.”
Waiting List Infections
At the moment, almost 2000 people are on the waiting list, they have indicated that they would like the drug PrEP. The pill protects for almost 100 percent against HIV. But for some the wait was too long, they became infected with HIV while they were still on the waiting list.
–
–
In the Netherlands, according to the Aidsfonds, about 24,000 people have HIV. In 2020, 411 people were still infected. HIV is still not curable, but it can be treated well by taking medication every day for life.
Five-year trial
Since 2019, 8500 people with an increased risk of HIV can receive PrEP pills via the GGD for a small fee. These include men and transgender persons who have sex with men. It is part of a five-year trial by the Ministry of Health looking at the effectiveness of PrEP. The number of participants for the trial is limited, because a maximum of 26 million euros has been reserved for it.
Mark van den Elshout of the GGD in the Utrecht region has seen it happen several times that someone became infected with HIV while they were on the waiting list. “It is incomprehensible that the government is making this decision now that a pill is finally available that protects against HIV infections. In this region alone, there are more than 300 people on the waiting list. We as the Netherlands used to be a frontrunner in this area. In many countries around us, PrEP is free for everyone who can benefit from it, but not yet here.”
–
–
‘Safe and cost effective’
“Imagine that the corona vaccine was only available to a limited extent. Nobody would have found that acceptable. Yet that is exactly what is happening with PrEP,” says a spokesperson for Aidsfonds-Soa Aids Nederland. “In the annual report at the beginning of this year, RIVM asked the minister to expand the PrEP trial, but he does not take any action.”
The Aidsfonds-Soa Aids Nederland finds it incomprehensible that Minister Kuipers refuses to take measures to improve the accessibility of the HIV prevention pill. “PrEP is an effective, safe and cost-effective prevention tool.” Lifelong HIV treatment costs about half a million euros, while PrEP pills are relatively much cheaper.
–
–
‘Additional intervention needed against HIV’
A common view is that people can also use a condom to protect themselves against HIV. “But it’s not that simple,” says Elske Hoornenborg, head of the Sexual Health Center of the GGD Amsterdam. “We have been promoting the use of condoms for decades, but we see that in practice it is not always possible to use a condom consistently. Moreover, it does not offer 100 percent protection. So additional intervention is needed to protect people against HIV. “
–
–
“In Amsterdam, more than 800 people with an increased risk of HIV infection are now on the waiting list for PrEP. We think that is a very bad thing, because it creates a barrier for people who want to protect themselves.”
Most GPs do not prescribe PrEP
It is difficult to obtain the drug outside of the PrEP test. There are general practitioners who prescribe the drug, but including pills and mandatory STD tests (including checks for HIV, STDs and your kidney function four times a year), this costs about 700 euros on an annual basis.
“In addition, a large proportion of general practitioners choose not to provide PrEP care, because this does not fall under basic general practitioner care,” said a spokesperson for the National Association of General Practitioners (LHV). “It goes further than just writing a prescription, someone also has to be properly supervised. It is really a task for the GGD. The work pressure among general practitioners is already very high and they cannot have extra tasks.”
Jordy is now doing a lot better, he has received a lot of support from his circle of friends. Nevertheless, he has to take into account the fact that he has HIV for the rest of his life. “It is especially complicated with dating, because it is still difficult to tell that you have HIV.”
–
–
Policy will not change
Minister Kuipers (VWS) offered on 21 March the annual report of the RIVM on the progress of PrEP to the House of Representatives. In the letter he says that he wants to await the final evaluation of the trial. That will be in 2024. He is also curious about the interim evaluation of the research that looks at the effects of PrEP in the period 2019-2022. He will keep the House informed of developments, but for the time being the policy will not be changed.
–
–
