World Hepatitis Day: Lending a Helping Hand Through Community Engagement and Collaboration

July 28 is World Hepatitis Day and this year’s theme is ‘Help Can’t Wait’. In order to spread awareness of this condition, we had the opportunity to talk with Paul Zantkuijl about his projects and engagement with Hepatitis C in the Netherlands. Paul is a Senior Project Officer for Soa Aids Nederland and has worked in the community engagement aspect of the MC Free Project, an initiative in which AIGHD was involved that focused on reducing the incidence of Hepatitis C infections amongst men who have sex with men (MSM) in the Netherlands. Paul discusses the status of Hepatitis C in the Netherlands, from its biological and social determinants, community-based interventions, and harm reduction initiatives, to the perceptions and misconceptions about this disease.

In 2016, a year prior to the start of the MC Free Project, Paul Zantkuijl had contact with Public Health Service Amsterdam (the GGD Amsterdam) who were developing a Hepatitis C test that could be done privately at home. The GGD Amsterdam wanted to know how men would perceive this tool, but Paul took this premise a step further, “I also wanted to ask them some questions about what their prevention needs were related to Hepatitis C.” In 2016, Paul and the GGD Amsterdam started focus group discussions about Hepatitis C with 16 men. In 2017, there was an opportunity to get funding for a project, which would mean they could expand and grow much larger than this Hepatitis C test. Thus came MC Free, a multilevel approach to engage certain circles of MSM in the Netherlands. One of the projects launched by MC Free was NoMoreC, which largely focused on educating MSM about the Hepatitis C virus (HCV), helping them find their own means of risk mitigation, and providing their preferred tools to navigate their health on their own terms.

Paul Zantkuijl had been working for the MSM program since 2013, giving him a familiarity with the MSM community. Engaging and empowering this group and keeping them involved every step of the way to give them a voice were pillars of MC Free and its subproject, NoMoreC. Paul was able to find well-connected members of the MSM community to promote this project to those who were particularly at risk of HCV infection. These at-risk men were often involved in fetish and BDSM sub-scenes, and promotion from within the MSM community allowed MC Free to target such demographics with a certain tone and imagery that resonated with them through digital ad campaigns on dating apps, posters, and flyers with testimonials from MSM. Those featured in this promotional imagery were real members of the community who felt that HCV was a threat to them and wanted to be role models. Working with the representatives from the MSM community, MC Free developed the NoMoreC Toolbox for curbing the risk of HCV transmission based on what the community desired, including disinfection materials, gloves, condoms, and even needles for those practicing chemsex. These toolboxes could be found in STI clinics, HIV centers and fetish shops in Amsterdam or bought online. This community engagement and harm reduction approach was consistent with MC Free’s core message of empowering MSM to find their own way of navigating the risk of HCV infection.

On the subject of HCV, HIV and the MSM community in the Netherlands, Paul Zantkuijl notes that, in many MSM circles, susceptibility is twofold: some research indicates that HIV-positive MSM are biologically more vulnerable to contracting HCV, but MSM may also be in sexual networks where HCV is more prevalent overall. Thus, Hepatitis C amongst Dutch MSM is not solely a comorbidity but may exist independently of HIV. Within networks of MSM, there is a bridging between HIV-positive men who adhere to antiretroviral therapy and are virally suppressed and HIV-negative men who use pre-exposure prophylaxis (PrEP). Among the latter group, HCV infections are becoming increasingly common. Recently, on July 29, 2021, at the International AIDS Society Conference, it was announced that only 0.5% of HIV-positive MSM had chronic Hepatitis C infection, and the rest had been cured. Essentially, the conclusion was that the Netherlands is close to HCV micro-elimination in people living with HIV. However, Paul notes that this assessment overlooks the emerging problem in Hepatitis C infections amongst HIV-negative men. Furthermore, because of this bridging between HIV-positive and HIV-negative MSM, we cannot be sure that we are close to micro-elimination of HCV for those who have HIV. Though new HCV infections in the Netherlands are few, having stabilized between only 50 to 100 new cases each year, Paul states that “It is a fact that we find more infections among HIV-negative men compared to the past,” and there is a gap that needs to be closed. Additionally, many of these cases of HCV are reinfections amongst HIV-positive MSM. Ultimately, to successfully curb Hepatitis C on a population level, we cannot merely focus on HIV-positive men.

In his mission to help close this gap, Paul Zantkuijl appreciates having worked on MC Free, a project he sees as truly unique. In other major cities, like London and Berlin, there remains an HCV problem, but Paul says interventions lack the same kind of community engagement: “There is a strength. The impact can be tremendous if you work with the community.” The lack of community engagement means neglecting the behavioral component of HCV infections, which Paul holds as a crucial determinant in its spread. Though funding for MC Free has stopped, Soa Aids Nederland is working to roll out the NoMoreC interventions in other major cities in the Randstad Area, including Rotterdam, the Hague, Utrecht, and Leiden, by handing out HCV risk mitigation toolboxes to MSM at STI and HIV clinics.

For this year, the theme of World Hepatitis Day is “Help Can’t Wait”, and Paul Zantkuijl left a final remark in regards to this creed. Many at-risk men may test for HCV but have a fatalistic perspective that they cannot do anything to control infection. This fatalistic outlook is common amongst HIV-positive men who adhere to antiretroviral therapy and HIV-negative men on PrEP alike, both of whom may not use condoms. What’s more, like HIV, Hepatitis C is stigmatized and there is a faulty perception that those who contract HCV are particularly sexually adventurous or wild. In turn, this infection is not openly talked about, and when confounded with fatalistic perceptions of this disease, there is overall less discussion about curbing the risk of infection. Paul is careful about the term prevention but maintains that “there are things you can do to reduce the risk.” He is realistic, maintaining that complete prevention implies abstinence: “Not everyone wants to maximize his efforts to reduce the risks.” For this reason, the crux of his approach is to encourage men to see what recommendations fit their own sex lives and think for themselves: “We want to give men the feeling that they have options to act upon.” MC Free has been praised by the MSM community and professionals trained in motivational interviewing for this approach. “There may still be some risk, but even a little bit of effort can bring down the total number of infections.” Ultimately, help cannot wait, but Paul Zantkuijl reminds us that help comes in many forms, should not be pushed on people unwillingly, and oftentimes the best help is a joint effort in curbing the spread. This adage not only applies to HCV, but many other diseases: combatting illnesses is a team endeavor that requires community engagement, collaboration, and consent.