Seven need-to-knows about hepatitis C self-testing 

As part of the INHSU 2021 conference, we held a virtual satellite session entitled ‘Hepatitis C Self-Testing: Empowering People who use Drugs and Increasing Access to HCV Testing and Care’. 

Facilitated by our colleagues at the World Health Organization (WHO) the session explored how hepatitis C (HCV) self-testing could become a valuable addition to reaching the 2030 global hepatitis elimination goals.  

The session was chaired by Rachel Baggaley, team lead for testing, prevention and populations in the global HIV, hepatitis and STI programmes at the WHO, and Ketevan Stvilia, Global Fund HIV Manager at the National Centre for Disease Control (NCDC), Georgia, who were joined by Dr Niklas Luhmann, Technical Officer at the WHO, Mr Danil Nikitin, Chairperson at the Global Research Institute (GLORI) Foundation, Michael Wilson, Director at Advance Access & Delivery South Africa, and Ms Sonjelle Shilton, Hepatitis Lead at FIND, the global alliance for diagnostics. 

Chair Rachel Baggaley summarised the session saying: “I have huge encouragement for HCV self-testing to be feasible and effective.” 

Below are some of the core themes and takeaways from the discussion.  

1. HCV self-testing would be an additional option, not a replacement for existing tests 

All speakers spoke of how the integration of HCV self-testing into HCV models of care would not be a replacement of current testing modalities, but rather an additional tool to expand testing options and facilitate targeted testing. 

“The tests in development are specifically the antibody test to see if people have been exposed to HCV,” explained Ms Sonjelle Shilton from FIND. “The tests are often done in private settings alone or with people they trust. It is not a definitive test but rather a first step towards learning a status. It’s not a replacement.” 

Currently, HCV self-testing diagnostic options are for research purposes only, but tests approved for use in the general public are in the pipeline.  

2. There is evidence to support that HCV self-testing works 

WHO has released recommendations of HCV self-testing for the very first time. The recommendation is categorized as a ‘strong recommendation with moderate-certainty evidence’.  

The evidence to inform the recommendation was a mix of direct evidence from HCV self-testing (in terms of feasibility, acceptability, usability etc.) and indirect evidence from HIV self-test effectiveness studies.  

The evidence gathered by WHO showed that self-testing increases the uptake of HIV testing, the proportion of people diagnosed with HIV self-testing is higher than facility-based testing, there is a higher linkage to care, and misuse of self-testing for HIV is rare. The same can be assumed for HCV self-testing.  

Regarding values, preferences, usability, and cost-effectiveness, studies showed that many people are willing and able to perform HCV self-testing with minimal support, it’s feasible in a range of populations and settings, and has the potential to increase equity by reaching those who may otherwise not access testing services. While it could cost more per diagnosis, more cases would be diagnosed overall. 

3. To work for HCV, its success is reliant on appropriate post-test service 

WHO’s Dr Niklas Luhmann continued by saying: “HCV self-testing needs to be followed by linkage to appropriate post-test services; including confirmation of infection, treatment, care, and other referral services.” 

It is also desirable to adapt HCV self-testing service delivery and support options to a national and local context. Finally, communities – including networks of key and vulnerable populations and peer-led organisations – need to be meaningfully and effectively engaged throughout the process. 

4. The success of self-testing for HCV will be variable for each country and setting 

FIND’s Ms Sonjelle Shilton discussed three feasibility studies completed by the organisation – in Georgia, Kenya and Vietnam. The studies focused on unassisted testing of HCV self-tests among people who inject drugs, where participants were observed completing an oral fluid test. Baseline questionnaires were completed beforehand, alongside post-test feedback. A professional also re-did the test to ensure results were the same as those gathered by the participant themselves. 

“While a lot of participants did require assistance, they could read the results quickly and accurately,” explained Sonjelle. “Also, the steps that did cause some challenges were not what we would refer to as ‘critical testing steps’, meaning that they did not impact test results.” 

This did vary across countries – for example, Vietnam’s testing group of people who used drugs had some challenges with the instructions while Georgia didn’t, suggesting each country and setting may need to be adapted according to local challenges and preferences. This was backed up by chair Rachel Baggaley, who spoke of the approach outlined in WHO’s new guidelines.  

5. Self-testing can be led by government, private clinics or community-based organisations  

Mr Danil Nikitin from GLORI Foundation in Kyrgyzstan joined the discussion, presenting findings from a study in partnership with FIND. In Kyrgyzstan, 3 per cent of the population is infected with HCV and 60 per cent of the population of people who use drugs are infected with HCV. 

A study of the effectiveness and suitability of HCV self-testing from August – October 2020 showed promising results. “The people interviewed supported the idea of self-testing and had some knowledge of it from HIV,” said Danil. 

Danil also discussed how self-testing could be delivered on a wider scale, discussing government clinics, private clinics, and harm reduction community-based NGOs as options. 

However, no matter the delivery method, a recurring challenge cited by participants is that of confidentiality and the risk of creating yet more people with whom they need to interact with during their diagnostic and care journey. 

6. Support materials are imperative 

Another interesting finding from Mr Danil Nikitin’s presentation is the need for clear and concise support materials. “Leaflets, paper-based inserts, readable brochures, video tutorials, online resources and 24/7 hotlines with interactive voice response are all options,” he explained. 

Having resources like this available may go some way to minimising the challenges seen in the Vietnam study with certain instructional steps misinterpreted by participants. 

7. We need to raise awareness and demand 

The session included breakout sessions with delegates discussing various implementation challenges and opportunities with their global peers, including integration of HIV and HCV self-testing. The main takeaway was excitement about the potential of HCV self-testing, with the main first step being the need to raise awareness and demand.  

With COVID-19 self-testing becoming increasingly prevalent globally, and the proven case study of HIV self-testing, it is hoped that HCV self-testing won’t be far behind. 

INHSU regularly hosts virtual events on hepatitis C, infectious diseases and the health and wellbeing of people who use drugs. Make sure you don’t miss out – sign up for our newsletter here.

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