22 April 2024
In 2017, while volunteering at the User’s Academy (Brugernes Akademi), in Copenhagen, Denmark, Jonas Demant discovered that he and many others in the team had hepatitis C virus (HCV). Faced with a long, complex path to care —with a tonne of stigma along the way—they sprung into action to help themselves, and their community. Their solution? A mobile testing van.
Here, we speak to Jonas to discover that although it’s now a leading example of the success of mobile outreach for hepatitis C—there were a lot of lessons learned along the way.
Fast Facts
- Location: Copenhagen, Denmark. While mobile, the van often collaborates with methadone clinics and shelters
- Operated by: ‘User’s Academy’ (Brugernes Akademi), founded by Anja Plesner Bloch Established: 2017
- Scope of services: HCV testing with a GeneXpert Machine and treatment available in the same visit. Testing for syphilis, HIV, and Chronic obstructive pulmonary disease (COPD). Needle and syringe exchange.
- Results:
- Total tested for HCV: 728 people who use drugs
- HCV Antibody Positive: 208 (29%)
- HCV RNA Detectable: 114 (15%)
- Treatment Initiated: 80 (70% of those with detectable HCV RNA)
- Successful Treatment (SVR): 79 (99% of those who initiated treatment)
- Challenges: Non-Danish citizenship without legal access to healthcare is the main barrier to treatment initiation, particularly for migrants
- Peer-led approach: Led by peers with partnerships established with clinicians and researchers.
Lesson 1: If you don’t ask, you don’t get
The acquisition of the mobile testing van wasn’t just a stroke of luck—it was the result of persistent advocacy and assertiveness. The van had previously been used as a mobile drug consumption room but had fallen into disuse and sat abandoned under City Hall.
We were all really frustrated that the van wasn’t being used at all. So we wrote several emails pushing for it to be used for something to benefit our community. We were asked to write an official application, which is when we came up with the idea of the HCV testing van. We were surprised they gave it to us! But it really shows the power of perseverance.
Their assertive approach paid off, demonstrating the power of advocacy in effecting change. They kitted out the van as a mobile testing clinic, got hold of some antibody tests and hit the road, targeting methadone clinics, shelters, and the open drug scene.
Key takeaways
- Be explicit and specific when making requests, clearly outlining your needs and intentions
- Utilise available resources and infrastructure creatively to meet your objectives
- Clearly communicate your initiative’s potential positive outcomes and impact to stakeholders and decision-makers
Lesson 2: Form partnerships along the way
Navigating the complexities of linking individuals to care was one of the initial, and ongoing challenges of establishing the mobile HCV clinic. However, the team quickly realised the importance of forming partnerships to help them navigate this challenge.
At the start, we’d tell someone they had hepatitis C and then head back to Copenhagen in the van. We quickly realised we needed to do more, and we’d relentlessly phone doctors in every town we went to, looking for those who would see people with positive antibody tests.
When this was no longer effective, the team formed a partnership with researchers— including epidemiologists and clinicians—who were able to assist in accessing a machine to test for HCV RNA to streamline the process even further.
In the beginning, people were quite sceptical and often methadone clinics and other places would want us to bring a nurse with us. That wasn’t something we could afford, so we recruited volunteer nursing students and then doctors, who could officially diagnose. It was still peer-led, but we were working together.
By forming strategic partnerships, the team overcame multiple logistical challenges, streamlining the process of linking individuals to care and achieving greater success in their mission.
Key takeaways
- Be persistent in seeking partnerships with relevant stakeholders
- Utilise volunteer resources to expand the reach and capabilities of your program
- Collaborate with researchers and clinicians to leverage their expertise and access to resources
Lesson 3: Iterate and adapt to remain relevant
The mobile clinic has evolved significantly since its inception, reflecting a commitment to adaptability and responsiveness to community needs. Initially aiming to serve the entire country, the clinic quickly recognised the impracticality of this approach and shifted focus to Greater Copenhagen.
At the start, we were trying to serve the whole of Denmark, which was way too ambitious and we wasted a lot of time. So we said, okay, we’re going to focus on Greater Copenhagen.
Realising that the open drug scene wasn’t the most effective location either, they pivoted to partner with methadone clinics, a strategic move Jonas wishes they had made sooner for maximum impact.
This adjustment, coupled with the integration of testing and treatment for additional diseases like syphilis, HIV, COPD, and—during the pandemic—COVID, demonstrates their commitment to meeting evolving community needs. It also helps ensure they remain relevant for funding as the country moves towards hepatitis C elimination.
Lots of people are smoking now, and the injecting drug users are aging, with no new injectors entering the scene. But, hopefully, the same model can do the same thing for other infectious diseases.
This willingness to adapt and iterate based on lessons learned exemplifies the importance of flexibility and continuous improvement in addressing complex public health challenges.
Key takeaways
- Be willing to adapt your approach based on feedback and changing circumstances
- Prioritise areas where your efforts can have the greatest impact, rather than spreading resources too thinly
- Regularly reassess community needs and adjust your services to remain relevant and effective
Lesson 4: Fight for the change you need
During the clinic’s establishment, misinformation about hepatitis C was rampant, even within the medical community in Denmark.
People were being told they could live to 100 with HCV and that it wasn’t a serious condition. And, despite the introduction of direct-acting antivirals (DAAs), doctors remained hesitant to advocate for treatment.
Just as before, the Users’ Academy rose to the challenge: if doctors wouldn’t prescribe, they would.
They tirelessly advocated for the policy reforms needed to provide treatment in the mobile clinic. In 2019, their efforts eventually led to changes in guidelines that enabled treatment to be prescribed to marginalized communities, outside of infectious disease clinics.
Alongside clinicians and researchers, we pushed and pushed for years until, eventually, the policy change that we needed happened. It was a real team effort.
Their advocacy strategies included inviting policymakers and politicians to witness the clinic’s impact firsthand, participating in town hall meetings, and ensuring the inclusion of the program in the budget. Additionally, diversifying their services to include testing and treatment for other infectious diseases bolstered their case for securing additional and ongoing funding.
Key takeaways
- Don’t be discouraged by initial resistance; continue advocating for necessary policy changes
- Invite policymakers and stakeholders to observe your program’s effectiveness to garner support
- Offering comprehensive services beyond your initial focus can strengthen your case for funding and support
Conclusion
The User Academy’s journey underscores the power of perseverance, adaptability, partnership, and advocacy in improving the health of people who use drugs—and, of course, the power of peers taking control of their own healthcare.
By embracing these lessons, organisations worldwide can enhance their model of care’s effectiveness and move us further to equitable healthcare for people who use drugs.
