Battling for Health: The Factors Preventing High-Risk Patients from Accessing Preventive HIV Treatments

By Rodrigo Ribeiro

NEWS • Alarmingly long waiting times for HIV prevention meds in Gothenburg are potentially increasing the risk of HIV infections among high-risk groups.

Pre-exposure Prophylaxis, PrEP, is a medication used to reduce the risk of HIV transmission for so-called “high-risk” individuals – particularly HIV-negative people who find themselves in potentially high-risk situations, often prescripted to men who have sex with men. Since 2017, PrEP has been available in Sweden through a prescription, though effective access to the medication has proven to be particularly difficult.

In its annual “PrEP in Sweden” report, the Swedish Federation for Lesbian, Gay, Bisexual, and Transgender Rights (RFSL) highlighted the difficulties many individuals face in obtaining the medication. The report revealed that a staggering 46% of respondents reported waiting times as “long and exhausting.” Some even resorted to private providers in an effort to avoid the lengthy queues, which can often stretch for several months.

In Gothenburg, for example, only one clinic is authorized to prescribe PrEP: Sahlgrenska’s infection clinic. Earlier this year, the clinic reported having 50 people on its waiting list. While this may seem like a manageable number, the average waiting time in Sweden is at least seven months, with the longest reported wait being as much as five years.

The report, which surveyed 724 people, 590 of whom were MSM or transgender individuals, also highlights the serious risks of these delays. One particularly concerning case involved a patient who, while waiting for their appointment, contracted HIV. Although modern treatments allow people living with HIV to lead long and healthy lives, the chronic immune deficiencies caused by the virus can lead to complications over time, underscoring the urgent need for more timely access to PrEP.

It’s important to note that Sweden’s Health Agency has reported that the number of actual HIV infections in the country is lower than the number of registered infections among men who have sex with men (MSM).

The national health agency, Folkhälsomyndigheten, has reported an overall decline in HIV infections over the past decade. However, this broader trend doesn’t fully capture the rising numbers since 2020.

In 2023, there were 304 new cases of HIV, a decrease from 449 in 2019. However, this is still higher than during the pandemic years, suggesting that the problem persists. This decline in new cases underscores the proven effectiveness of PrEP in preventing HIV transmission. Yet, the continued lack of resources allocated to regions with high-risk populations means that many individuals remain without access to this crucial preventive measure, putting both their health and the health of others in jeopardy.

While the situation in Gothenburg and Västra Götaland has been a focal point in the report, Malmö appears to be facing the most severe challenges. In November 2023, the PrEP waiting list in Malmö was scrapped altogether due to a lack of resources, despite 70 people already waiting for treatment.

As of 2024, there are 412 people on PrEP in Västra Götaland, while Skåne and Stockholm have 500 and 2,500 users, respectively. Stockholm’s higher number of PrEP prescriptions is partly due to the city’s larger population but also to recent efforts by authorities to address the issue. These measures included expanding the number of clinics prescribing PrEP, adding five additional locations. This is a stark contrast to Malmö’s drastic response of closing the waiting list entirely.

What’s to come?

While PrEP’s effectiveness in preventing HIV infections and its growing demand are well established, the failure to address access issues has created an administrative bottleneck that limits its full potential. By not allocating sufficient resources to the affected regions, high-risk individuals are increasingly at risk of falling through the cracks of the healthcare system. This not only jeopardizes their health but also the health of the wider community. The question remains whether the relevant authorities will take action to address these disparities and ensure that PrEP is accessible to all those who need it.

Methodology : The data concerning prep waiting times and queues was obtained through the Swedish Federation for Lesbian, Gay, Bisexual, and Transgender Rights (RFSL), who contacted the necessary authorities. The numbers concerning concerning the patients perceptions of the queue length come from the same report. In it's essence the RFSL interviewed 724 people in March 2024, 590 of them being MSM. The survey was promoted on social media and apps like Grindr. The data concerning infections in Sweden was obtained through reports from the Swedish Health Agency, while the data specifically mentioning MSM's was collected by them as well but published in a database ran by the World Health Organization (WHO).