Barriers to Treatment

Testing rates have dramatically increased across the drug treatment sector, with drug and alcohol services testing higher numbers than ever before.  The nationally agreed micro-elimination criteria* is in situ and issues we have had with data are being resolved.  The UKHSA data from 2022 (Hepatitis C in England 2022: Full report ( shows that we have seen increased treatment numbers and reduced mortality in England.  We are now hearing reports from across the sector of a number of people declining hepatitis C treatment.  Now, of course every person who has a diagnosis of hepatitis C has the absolute right to decline treatment.  What is critical now is ensuring that the reason for people declining treatment is not due to inaccessible or inequitable pathways.  Ultimately we need to ensure we are doing everything we can to ensure people can make an informed decision about treatment.


So what are the barriers to treatment?

In the many years before the global, and later, national move to eliminate hepatitis C as a public health threat, and prior to direct acting antivirals being available there were many barriers to hepatitis C treatment.  However, as those working alongside NHSE England’s hepatitis C elimination programme have worked tirelessly through these barriers it is worth taking stock of what challenges remain.

Some of the more recent research suggests that the barriers to hepatitis C care are both societal and individual – stigma, drug use, worries about side effects, lack of knowledge, mental health and co-morbidity were all seen as potential barriers.  Of note was how gaps in care, mistrust of healthcare providers, rigidity in patient pathways were all obstacles to hepatitis C care.


If these are the barriers, what are the solutions?

The research suggests that services building a more cohesive approach, shifting towards integrated case management and building trust in healthcare providers would facilitate better access to hepatitis C care.  Some have recommended the use of care navigators, or utilising peers or expert patients.  It is not difficult to see how this might help to combat difficulties with health literacy and support someone to navigate the complex health care system they find themselves in.

Another recommendation has been the expansion of hepatitis C treatment to non-specialist providers which could further support its accessibility.  There are a variety of models of this working in England, and if hepatitis C rates are to be kept low in the coming years this appears to be a sensible approach.

Additionally public health campaigns would promote awareness within the communities, especially if tailored to specific groups who may be at risk of hepatitis C.  The success of primary care and A&E testing across the country in recent years has shown how important opportunistic testing and treatment is to finding people who needed treatment who would not have otherwise been found.


What have we noticed?  

Hep C U Later have the benefit of being well positioned to explore potential blocks in treatment through our partnerships with key stakeholders across the country.  This open dialogue means we are able to work with people to determine current barriers and solutions and to form an idea of what they might be in the future.

Continued focus is required on how we minimise onerous healthcare policies and pathways and how we continuously shift towards a patient-centred approach.  To do this, we need to strip back on what is really required for a person to start treatment, within the realms of what is clinically safe of course, and really try to understand what each individual needs, taking a step away from designing pathways for cohorts.

One of the essential elements for ‘future-proofing’ hepatitis C treatment for individuals is ensuring that the systems we have in place work without the additional resource that is currently in place.  This means looking at how micro-elimination data is managed in services, who is held to account for ensuring quality hepatitis C interventions, formalised commissioning, that harm reduction pathways are standardised and actually work for people, and that drug services not only see hepatitis C as a core part of their work but that they are also able to meaningfully advocate for service users.

Stigma as a barrier is often minimised but it has real-time effects on people’s health and quality of life.  Stigma is the action which can prevent a person wanting to have treatment or even get tested in the first place.  It is essential we challenge stigma where we see it – whether on a person’s notes, from a healthcare provider or outdated policies.


What does this mean?

Whilst it’s clear to anyone working to eliminate hepatitis C that great strides have been taken and a multitude of obstacles have been overcome there are challenges that still face us.  But that does not mean we’re out of solutions to try.

Not only do we need to continue to work on pathways and engage people who have not yet been treated, but we also need to do this whilst considering how we build resilience into our organisations to ensure the great work continues – central to this is the valuable partnerships between Hepatology services, drug services and peers.

We’ve reached an impressive and important step in our ambition to eliminate, but we have a few more to go.


Deanne Burch, Lead for Hep C U Later

*The nationally agreed micro-elimination criteria was agreed by the national hepatitis C drug treatment provider forum led by Gilead, NHSE HCV elimination programme and the Hepatitis C Trust.  The criteria uses National Drug Treatment Monitoring Service (NDTMS) data fields and is applicable within certain cohorts within drug treatment services.