Reaching out in the darkness
Hepatitis C cases can come from anywhere – but certain locations are always likely hotspots. It’s time to get out, get looking and find simple routes towards curing more patients.
When it comes to marginalised patients with hepatitis C, every street corner could unlock a hidden infection that can be cured. But finding and treating everyone needed to eliminate the disease is about more than just being there, it’s also about being persistent – as Gavin Hardcastle and Jo Hughes of the Royal Gwent Hospital explain.
A walk on the wild side
1 a.m, Tuesday night. A tent city near Newport’s red-light district. It’s no place for the faint-hearted – but for Hepatitis Clinical Nurse Specialist Gavin Hardcastle and Community Nurse Jo Hughes, being there is the only way to reach some of the most neglected sufferers. And for the chance to help them clear HCV and get life back on track, the effort is always worth it.
See more about Gavin and Jo's work and their team's progress here
Today, Gavin and Jo are well connected with local HCV services. But when they first started working together in 2011, it was a different story. As a team of just two, they were facing a growing epidemic of the disease. How could they make the greatest impact on patients and infection rates?
1 a.m, Tuesday night. A tent city near Newport’s red-light district. It’s no place for the faint-hearted.
Misinformation and missed opportunities
The close-knit, small communities of South Wales were a challenging place to fight HCV. Lack of knowledge about the disease, unhelpful opinions and discretion problems remained major barriers to engagement. Some patients still believed they couldn’t have HCV because they never used IV drugs; others who did just wanted to forget. And some feared the treatment itself due to preconceptions or past experience.
Against this background, testing rates were understandably low; even in drug services, HCV testing rates only ran at 5-10%.1 In this environment, many infections could still spread unchecked. In addition, treatment initiation previously required nurse and consultant appointments, FibroScan® and ultrasound, adding several weeks to the pathway.
Even in drug services, HCV testing rates only ran at 5-10%.1 In this environment, many infections could still spread unchecked.
New approach, new attitude
As case numbers rose, there was no time left for health services to dodge the issue. So with Gavin and Jo’s arrival, the Gwent team become much more proactive. Most clinics were shifted from hospitals into primary care community and drug services, to enable faster, more patient-focused treatment with minimal consultant requirements (although their help was always available). The team also became more assertive in testing – no longer offering excuses for patients to avoid a test, but instead encouraging them to ‘rule out’ HCV.
Tackling the area’s high HCV known prevalence with limited resources always presented a potential issue. So instead of taking a blanket approach to the problem, the team took part in several targeted initiatives.
Collaboration with drugs services
With historic HCV testing rates so low, drug treatment services were an obvious place to start. Previously, patients who said they didn’t share needles were not considered to be at high risk, so the team created educational materials to help change minds within the service. Today, it offers DBS testing with reflex PCR testing for positive cases, overcoming venous access issues and maximising treatment opportunity.
Working together to help sex workers
Operation Pathway is a joint venture set up by SEASS (the Sexual Exploitation Advocacy Support Service) with involvement from Gwent Police and the IRIS Team (Criminal Justice) of Gwent Drug and Alcohol Service (GDAS). Gavin and Jo became involved and set up a ‘one-stop shop’ clinic in the Newport red-light district, providing general health services, nurse-led BBV screening and treatment, and going even further by walking the streets with sex workers to engage them in testing and help keep them safe. The team also forged strong links with local prisons, so treatment can always continue, even when workers end up there.
Gavin and Jo set up a ‘one-stop shop’ clinic in the Newport red-light district, providing general health services, nurse-led BBV screening and treatment, and going even further by walking the streets with sex workers to engage them in testing and help keep them safe.
“It has taken us about a year to get everything to a level where they trust us enough now to come in to clinic, but it is working,” says Jo. “They expect us to be there now on the days when we say we will be there, and they will be waiting outside.”
Reaching out to the homeless
Building long-term relationships is also vital to working with the area’s homeless. Newport has a ‘tent city’ where HCV is widespread and tuberculosis outbreaks have also occurred. Many patients will not engage with GPs, partly because of registration requirements and partly through lack of support. To combat this, a team member goes out on a ‘breakfast run’ each week. Aided by ‘homeless’ workers and a few dedicated GPs, they offer much more than just breakfast – building rapport while also providing a dry blood spot BBV testing clinic in a homeless drop-in centre.
They offer much more than just breakfast – building rapport while also providing a dry blood spot BBV testing clinic in a homeless drop-in centre.
Innovating in the community
Gavin and Jo’s innovative efforts to reach more patients have also taken them into unfamiliar but important new territories. One example is the team’s work with a local Muslim GP to develop testing within the area’s substantial Muslim population, some of whom may have been infected long before arrival the UK. Now, BBV testing is offered at two very receptive local mosques.
Image and performance enhancing drug (IPED) users are also a new target group for the team. BBV infections were high among local steroid users but few considered themselves ‘drug users’. They did, however, know of steroids’ cardiovascular risks – so Gavin and Jo added BBV testing to its existing IPED health screening and turned the situation on its head. And to break down barriers to testing and treatment with another underserved group – male sex workers – the team engaged with a local charity.
Increasing HCV treatment success
The emergence of direct-acting antivirals (DAA) has clearly led to higher HCV cure rates; however, treatment success ultimately depends on patients themselves, Gavin and Jo believe. Simplicity is key; the team works to increase their prospects of clearing the disease by tailoring treatment to factors such as cirrhosis, food habits and issues with carrying medication. They also encourage compliance and minimise resistance by letting patients choose their own drugs (including pan-genotypics) where possible, personalising supply frequency to suit lifestyles, reminding patients via SMS to take treatment and linking treatment times with any OST appointments.
The team works to increase their prospects of clearing the disease by tailoring treatment to factors such as cirrhosis, food habits and issues with carrying medication.
Underpinning all of this is the desire of a dedicated team to support every patient who could be ready to take on the disease – even if that sometimes means delaying treatment. “You don’t want to coerce them into having the medication, because they just won’t comply,” says Jo. “It has to be their decision at the end of the day and that helps with compliance a great deal.”
“You don’t want to coerce them into having the medication, because they just won’t comply.”
Every patient has potential
The team’s results prove that, when handled carefully and sensitively, even ‘difficult’ populations can engage with HCV treatment.
Among sex workers, the numbers of patients coming through are small but encouraging: 25 have been tested (with 15 antibody-positive) and 6 treated.1 Many patients within the tent city are now engaging with HCV and TB services, and some have also been housed – showing that treating HCV may be a stepping stone to wider health improvements.
Testing uptake in the other high-risk communities has been even stronger, reaching 96% in prisoners (n=165) and even 100% in IPED clinics.1
Finding new ways to widen testing and treatment
Despite their small size, the team achieved half of their treatment target last year and more patients are now coming forward as word of interferon-free medications gets around. The team is also pushing even harder by working to remove the need for ultrasound scanning before treatment and launching new services. They are also working with GDAS to drive testing rates to 80% and beyond, while making in-mosque testing regular.
Playing the long game
Every team working in HCV will have its own unique set of obstacles – such as the small-town issues and uncomfortable situations Gavin and Jo can face every night on their rounds. However, in their experience, even the most difficult problems can be worked around and the most challenging patients treated successfully by finding a motivation and offering the right level of support.
Even the most difficult problems can be worked around and the most challenging patients treated successfully by finding a motivation and offering the right level of support.
Recent successes include helping a heavy drug user and street drinker with schizophrenia complete DAA treatment by finding the best motivation for him to be cured (having sex again!), and helping another patient beat the disease by texting him every day for 8 weeks to encourage him to keep taking his medication.
In recent months many more patients who never wanted treatment have come forward, showing that the team’s efforts have paid off. “It’s a long-term game with many of these patients,” Gavin says. “It’s frustrating when people don’t turn up but we are used to that. We just say, ‘Well, we’ll get them. They are there."
Find out more
Watch the video and see more about Gavin and Jo’s work here
This video was produced and funded by Gilead Sciences Ltd in collaboration with Joanne Hughes. The views expressed in this video are Joanne’s own and reflect her personal experiences.
BBV = blood-borne virus; DAA = direct-acting antiviral; DBS = dry blood spot; GDAS = Gwent Drug and Alcohol Service; GP = general practitioner; HCV = hepatitis C virus; IPED = image and performance enhancing drug; OST = opioid substitution therapy; PCR = polymerase chain reaction; SEASS = Sexual Exploitation Advocacy Support Service; TB = tuberculosis.
1. Gavin Hardcastle and Jo Hughes, personal communication.
This article is fully funded and developed by Gilead Sciences Ltd.
HCV/UK/19-09/MI/2154 • Date of Preparation: March 2020