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In Dublin’s north inner city, a HSE Addiction Services treatment centre on Mountjoy Street is a mere 600 metres from one of the country’s major tertiary facilities, the Mater Hospital.
But the journey is marked by psychosocial and cultural barriers for many people with hepatitis C virus (HCV) and hospital non-attendance is common, no matter the mileage.
HCV is a condition of vulnerable populations. The main route of transmission in Ireland is via sharing of needles and drug paraphernalia (in the past, infection mainly occurred through infected blood products).
In recent years, the traditional boundaries of HCV care have been redrawn in light of the emergence of direct-acting antivirals (DAAs), prompting doctors to redouble efforts towards shared-care in the community. If patients can be diagnosed, identified and treated, it will save them — and the wider health service — from a needless descent into cirrhosis, transplant centres and ultimately death.
The advent of FibroScanning as an alternative to liver biopsy has meant that assessment and identification of patients in the community is also now extremely practicable.
The HSE estimates that 20,000-50,000 people in Ireland are chronically infected with HCV, more than half of whom are not aware of their infection, the stage of their disease and, in some cases, are not linked to care. Since late 2014, according to the HSE, almost 700 people have been treated with the new medications.
Recently, Prof Suzanne Norris, Consultant Hepatologist at St James’s Hospital, Dublin, and Clinical Lead for the National Hepatitis C Treatment Programme, announced an extension of the clinical eligibility for treatment that will enable an additional 1,500 people to enter the treatment programme based on their clinical diagnosis. This extension is being funded through the €30 million provided for in the 2016 HSE National Service Plan, stated Minister for Health Simon Harris last month.
In recent years, as funded treatments have slowly become available for patients on a phased clinical need basis, clinicians have been working to better ensure these patients are identified and undergo treatment.
The culmination of these efforts has resulted in a recent funding award by the Third EU Public Health Programme and a contribution from the HSE, totalling €1.8 million overall, for HepCare Europe.
The HSE’s contribution is €117,000 towards the Irish component.
Dr Jack Lambert, Consultant in Infectious Diseases at University College Dublin (UCD) and the Mater Hospital has led the successful funding application with co-Principal Investigator Prof Walter Cullen, a GP in north inner city Dublin and Professor of Urban General Practice at UCD.
A multi-country collaboration involving five institutions in four European countries, HepCare Europe aims to improve the efficacy of HCV treatment by bringing point-of-care testing to at-risk groups and supporting them through their treatment (see panel). “It is a very exciting opportunity to be funded for this,” Dr Lambert told the Medical Independent (MI). When it comes to elimination of hepatitis C in all populations, “we have to think outside the box” and develop “partnerships, linkages and true integrated care”. He expressed hope that all interested parties will work together to ensure treatment access for vulnerable populations.
As new DAA treatments have become available for certain cohorts, Dr Lambert has worked with colleagues in primary care and addiction services in a bid to ensure these patients attend hospital. The reality is that many have not showed up at specialist centres.
Dr Lambert told MI that when difficult-to-reach patients eventually present to hospital, it is often “with decompensated cirrhosis, liver disease, bleeding varices, ascites, end-stage liver disease…That is happening on an ongoing basis and there are an awful lot of patients out in the community like that, we think.
“Back in the olden days, with interferon and ribavirin, it was very toxic, we needed a consultant specialist managing these patients…but now we have a regimen of one pill a day for 12 weeks.” There are minimal side-effects and much less monitoring is required.
The journey towards HepCare Europe has been in progress for a number of years. One of the starting points was HepCheck, a project conducted by inner city Dublin GP Dr Austin O’Carroll with Dr Lambert and colleagues, which provided rapid oral HCV testing in a community setting to the homeless population.
Preliminary results found that of 460 people screened, 26 per cent (n=124) tested HCV-positive, with 9.6 per cent (n=12) representing new diagnoses and 112 previously diagnosed but lost to follow-up and/or not successfully referred to specialty services. At the time of reporting these initial results, 40 patients had been referred for assessment to ID/hepatology services to assess suitability for treatment but only six had attended, despite key worker support.
The findings reinforced the need for a new treatment paradigm. Dr O’Carroll, who works with homeless populations and whose practice is on Mountjoy Street, told MI that homeless people often fail to attend hospital appointments “because of the chaos of their lives — they have to get housing, they have to get food, they have to get shelter, they can’t remember appointments”. However, many are also “afraid of hospitals” due to negative experiences, he added.
“They can be seriously ill and not go to hospital, and particularly when it is something that is not immediately life-threatening,” he said.
Following HepCheck, Dr Lambert and Prof Cullen developed the HepCare project in collaboration with colleagues.
Some 58 patients identified as HCV positive were tested in primary care (at the Thompson Centre) using a portable FibroScan. Based on the scoring, some 15 were eligible for DAA treatment. Some 39 had previously been referred to infectious disease or hepatology services when diagnosed. Only 19 attended once and three had completed treatment with interferon/ribavirin but all had relapsed. The remaining patients stated the following reasons for not attending hospital services for evaluation and treatment: chaotic drug and/or alcohol use; fear of biopsy and/or interferon side-effects; and mental health/psychiatric diagnoses.
Currently, about 230 patients attend the Thompson Centre on Mountjoy Street, which is part of HSE Addiction Services. According to the Centre’s Director Dr Des Crowley, about 70 per cent are HCV positive, and of those, between 70-80 per cent are polymerase chain reaction (PCR) positive.
Dr Crowley believes mobile FibroScanning in the community can serve two important functions.
“One is a therapeutic function or diagnostic function, which is to figure out what it is that is going on; the second one actually is to engage people in a more productive dialogue about what is going on.”
Dr Crowley said word of new treatments is beginning to spread among drug-using and homeless populations affected by HCV. He believes peer educators and peer advocates, which are part of HepCare Europe, are vital.
“Most of my patients who have been on [DAAs] have sailed through them. In fact, very few of them have actually had symptoms. A few of them — actually, quite a number of them — have had experiences of both sets of treatment, because some of them either reinfected themselves or didn’t have sustained viral clearance from the first treatment, and they have had the experience of what it is like being on the interferon-based and the non-interferon-based treatments. And to talk to them, they think it is like a miracle; they really can’t get over how straightforward it was and a lot of people do think they have been given a second chance.”
Dr Crowley and Dr O’Carroll have both had several HCV patients who underwent liver transplants. They say the cost to the individual and the system is huge.
There is no reason why medication administration and adherence cannot be adequately managed in primary care in collaboration with hospital colleagues, and many of these poor outcomes will be avoided, they agree.
“We are 100 per cent behind it,” said Dr Crowley.
What is HepCare Europe?
HepCare Europe, which has now commenced, comprises six strategic initiatives designed to demonstrate the effectiveness of a community-based intervention.
HepCheck seeks to identify patients not accessing care by using point-of-care HCV oral rapid test in hard-to-reach settings (homeless, in shelters, prisons, etc) and identify the factors associated with treatment discontinuity.
HepLink seeks to develop an integrated model of HCV care involving 24 GP practices to reach approximately 240 ‘at-risk’ patients.
HepEd will develop and implement a multidisciplinary inter-professional education resource for healthcare professionals on hepatitis C care.
cHepFriend recognises the importance of peer support to ensure treatment adherence and will recruit, train and support credible advocates to support the clinical care team.
HepCost will assess the cost-effectiveness of the specific case-finding interventions across different EU countries to inform the development of public health policy in member states.
The above actions will be co-ordinated (HepCoord) under the direction of Principal Investigator Dr Lambert and his team at the Mater Hospital, Dublin.
The consortium includes clinician scientists from Servicio Andaluz Dde Salud (SAS) in Spain, Spitalul Clinic Dr Victor Babes Bucuresti (SVB) in Romania and both University of Bristol (UoB) and University College London (UCL) in the UK.
Irish collaborators also include Dr O’Carroll of the Merchant’s Quay and Safety Net Primary Care Services in Dublin, Dr Stephen Stewart of the Mater Hospital, Dr Eoin Feeney and Dr Diarmaid Houlihan of St Vincent’s University Hospital, Dublin, and Dr Crowley of HSE Addiction Services. Other agencies involved include Community Response, HIV Ireland and the Ireland East Hospital Group.