Evidence
Alert

Tackling fear and misinformation may help increase hepatitis C testing in prison

Liver disease caused by the hepatitis C virus (HCV) is a major public health burden. The World Health Organisation is aiming to eliminate HCV as a public health problem by 2030 and testing in prisons is central to this campaign.

People entering prison are asked to have a test for blood-borne viruses including HCV, but many refuse.  This study is among the first to look at why people in prison turn down screening.

Many complex and interconnected factors discourage people in prisons from agreeing to a test for HCV. They include fear, stigma, and lack of knowledge.

These findings help explain why so many prisoners refuse to be tested. This knowledge could be used to design ways of increasing the uptake of tests.

What’s the issue?

If left untreated, the blood-borne virus HCV causes liver disease and can lead to liver failure, cancer,  and other health issues. But modern treatments cure the infection in most people. The UK aim is to eliminate HCV by the earlier time frame of 2025 by testing those at risk of contracting the virus.

The prison population is central to this campaign. The large numbers of people imprisoned for drug-related crimes are more likely to have been exposed to HCV. But testing for blood-borne viruses on admission to prison has low take-up.

It used to be that people entering prisons were asked if they would like a test. This opt-in approach resulted in only about one in 13 (7.8%) people entering prisons in England and Wales being tested in 2013.

In 2014, a national opt-out approach to testing was introduced, where people would be tested unless they refused. The aim is to increase testing rates to 75%. But the policy is not working, and testing rates remain low. In a typical group of 14 prisons in the East Midlands, less than one in seven prisoners (13.4%) was tested between 2016 and 2017.

The researchers wanted to find out why most people in prison reject screening for blood-borne viruses.

What’s new?

Researchers interviewed 45 men in a low-security English prison. 15 had refused HCV tests in prisons. Of the other 30, half had tested positive for HCV and half had tested negative.

Interviews were semi-structured, and the researchers were guided by participants’ responses. They analysed the transcripts to draw out themes.

An interlinked range of factors discourage people in prisons from agreeing to a test for HCV. Participants expressed many fears. These included fear of needles, fear of a positive result, fear of rejection by peers and the anxiety of waiting for the test result.

Themes that emerged as barriers to testing were:

  • lack of privacy
  • the stigma, which was related to fear of becoming infected and/or the link with injecting drugs
  • lack of knowledge about HCV’s existence, infection, and transmission
  • the choice to opt-out, which was an opportunity for prisoners to feel powerful and have the freedom to assess their own risk
  • prison life, including staff shortages and delays in receiving test results.

Where prisoners valued the health care offered to them in prison and being supported by nurses, they were more likely to accept testing. Those actively choosing to spend time in prison to improve their health were also more likely to accept.

Participants supported the idea of peer-led support. They wanted more education about HCV transmission, testing, and treatment. They also supported the opt-out procedure although many felt testing should be mandatory.

Why is this important?

This study may be the first to ask why people in prison may not take up the offer of blood-borne virus screening. This data could help design interventions to improve test uptake.

The findings show that the barriers preventing people in prison from agreeing to HCV tests are varied and complex. Fear and stigma often result from insufficient knowledge about HCV.

Significant changes are needed to increase HCV test uptake in prisons. Giving people in prison more information about HCV may reduce their fears and increase the uptake of tests. They need multiple options of test location, the timing of tests, and method of testing.

More staff are needed to carry out screening for blood-borne viruses in prison. The researchers say that prison nurses need support. Understanding the challenges they face is key to a significant increase in testing. Nurses should be included in future planning.

What’s next?

Further research should collect data on the specific reasons that individuals refuse testing.

It will be important to work out which interventions would lead to an increase in testing rates. The lead author is co-recipient of a research fellowship on this topic and will soon begin collecting data.

You may be interested to read

The full paper: Jack K, and others. How do people in prison feel about opt-out hepatitis C virus testing? J Viral Hepat. 2020;00:1–9

The quantitative data collected during this study was published in this paper: Jack, K, and others. Testing for hepatitis C virus infection in UK prisons: what actually happens? J Viral Hepat. 2019;26:644-654

The HCV Action group: a resource for healthcare professionals

The Hepatitis C Trust: a patient-led charity that provides support and advice

The World Health Organization’s hepatitis elimination strategy: Combating hepatitis B and C to reach elimination by 2030. 

Funding

This research was funded by the NIHR Applied Research Collaboration East Midlands (ARC EM).

Commentaries

Study author

Peoples’ reactions to being in prison will affect their engagement in blood-borne virus testing.

People in prison spend a lot of time observing prison life. If a hepatitis specialist nurse always visits on a certain day and that coincides with someone going to the healthcare department, there is a high risk that other individuals will deduce that they have HCV.

“Stigma was a very raw and brutal emotional response amongst the men I interviewed. Fear of contagion and transmission led to social rejection. In a context where people already feel rejected from society, it was important for them not to be further rejected by their peers.

Kathryn Jack, Research Fellow and Advanced Virology Nurse Specialist, Nottingham University Hospitals NHS Trust 

Former Prison Volunteer

This paper could help change policy and increase screening for hepatitis C among the prison community. If explained in simple terms, this research may encourage prisoners to ask for tests. It may also encourage family carers to check their loved ones are being tested and treated.

“It would be good to see a plain English summary of this research given to prisoners and their families. It could be printed in prison magazines. It could also be shared with independent monitoring boards. They can then raise the issue with prisoners or take up cases where people have not had tests or treatment.

Amander Wellings, Norwich

Conflicts of Interest

Funding was also received from AbbVie Inc. The lead author is co-recipient of a research fellowship funded by Gilead Sciences Inc.