Ms Nicola Perry:

I thank the committee for the opportunity to speak on this important issue. The Hepatitis C Partnership is a national network of stakeholders working towards the elimination of hepatitis C in Ireland. It is our mission to end suffering, illness and death associated with hepatitis C. We want to ensure that everyone has access to life saving treatment for hepatitis C. Our members represent the statutory as well as the community and voluntary sectors with patient involvement at its centre.

Hepatitis C is an infection of the liver caused by the hepatitis C virus. If left untreated, it can cause permanent damage to the liver over many years. Most people become infected with the hepatitis C virus by sharing needles or other equipment used to prepare and inject drugs. From 2004 to 2019, 15,700 people in Ireland were diagnosed with hepatitis C. Each year, 600 to 700 people find out they have hepatitis C. There could be as many as 30,000 people in Ireland living with the virus. To date, more than 5,000 patients have been treated with highly effective direct acting antiretrovirals, DAA’s, for hepatitis C. Many of these people were treated successfully.With a cure rate of approximately 96%, these highly effective drugs with minimal side effects transformed hepatitis C virus care globally.

Reflecting on the scale and impact of medical advancements as a utility of quality-of-life improvements for people living with hepatitis C we had an opportunity in the later part of 2021 to provide a platform for a range of stakeholders to share their insights and experiences across the hepatitis C care cascade, that is, testing, diagnosis, linkage to care, and living hepatitis C-free. There are opportunities for growth as well as models of success across the provision of community care. The report has outlines some key issues. We have provided the committee with a more detailed written submission and here we will focus on three of them: first, understanding the challenge region by region; second, building pathways to support elimination in a sustainable way; and, third, driving hepatitis C elimination.

Understanding the challenge of addressing hepatitis C on a regional basis allows for the creation of community-based models of care with specific, measurable, achievable, realistic, and timely, SMART, objectives for each county. A named mode of delivery linked to the wider network provides opportunities for knowledge sharing and nuanced approaches.The national hepatitis C treatment programme, NHCTP, has already done a significant amount of work on a strategic plan, which is currently being reviewed by the relevant Government stakeholders. The national and regional implementation plans should be developed in a manner consistent with the overall strategic plan.

The first recommendation is to establish regional needs with regional experts and identify any specific challenges in different regional areas considering at-risk cohorts, likely burden of disease, accessibility, and resource needs across the cascade of care. The second recommendation is to set national and regional implementation plans and assign ownership to a named role for delivery, both regionally and nationally, and set SMART objectives for implementation.

I now turn to the second theme of building pathways to support elimination in a sustainable way. There is an inequality in access to hepatitis C care as it is largely dependent on where you live and your characteristics as a patient. Every effort should be made to create a policy framework that is driven by the need to test and treat as flexibly and locally as possible, to realise Sláintecare’s vision for equality in the context of liver care. This system should be tailored for specific regional needs but generally built around a flexible hub-and-spoke model with a strong patient-centred ethos, recognising that many people living with hep C may have experienced significant trauma in their lives.

On the third recommendation to unblock existing policy barriers and set policy to enable elimination, we should remove the requirement that patients need to be engaged with opioid substitution treatment to be treated in the community by their GPs and broaden the range of testing opportunities by enabling a diverse range of community testing initiatives.

On the fourth recommendation that we should build a community-based, nurse- and peer-led system to drive elimination, we want to use existing hospital-based consultant-led services in each regional area as hubs and existing community services such as opiate substitute treatment, OST, clinics and GP-led services as spokes. Recognising the pressures that hospital and community professionals are under, support should be flexible and ad hoc, and it should leverage online tools, such as teleconferencing and emails, as a preference. It should include paid peer workers with relevant lived experience to provide community-based testing, and patient support across the cascade, learning from the positive experience of the model in place at the Mater hospital in Dublin.

The fifth recommendation involves ensuring utility beyond hepatitis C. We must ensure that the system has a role in addressing longer-term liver care in Ireland after the initial push to eliminate hepatitis C. When a suitable system is in place to drive hepatitis C elimination, we need to help people access it. Some people who are treated for Hepatitis C will have ongoing liver-care needs, will continue to be exposed to risk factors post-treatment, or will have other issues in their lives around which they seek support. The drive to eliminate Hepatitis C should be seen as an opportunity to link people to formal systems of care.

The sixth recommendation is to find the missing thousands. We want to ensure widespread and sustained public health promotion campaigns targeted at the missing thousands who are currently living with undiagnosed hepatitis C in our communities.

These campaigns should include a strong peer-led outreach component and can focus on the positive impact of addressing hepatitis C in the community.

Finally, recommendation 7 is focused on supporting good longer-term outcomes. People who access treatment and require additional inputs, such as around housing, employment, education or psychosocial support, should be helped to access those supports as needed as part of the recovery capital approach.

I thank the committee for its invitation to attend today's session, and its attention to these important issues. My colleague, Mr. Lawrence Murphy, a hepatitis C project worker, will now conclude our opening statement.

Mr. Lawrence Murphy:

I thank the Chairman and the committee for allowing me to speak here today. I am a project worker with the Hepatitis C Partnership. Briefly, this is the story of my lived experience.

I first got my bloods tested in the late 1990s. I was not even thinking about hepatitis C at that time. It was not on my radar at all. To be honest, I only got tested because there was mass testing at the addiction services, which I attended and which I am thankful for today. I had no idea that I would get a positive result for what was at the time a lifelong illness. After the initial anger and shock, I put it to the back of my mind. I did not take much heed of it for a while. The way I was told was that I had not got HIV; I had only got hepatitis C. The information I was given was that it was a slowly progressing illness and it would not affect me for ten or 20 years.

In the circumstances I was in at the time, there was huge stigma and a lack of information. There was minimum support around getting diagnosed, living with it and protecting others. I did not know anything about hepatitis C at the time. All I knew was that you do not tell anyone you have it and you do not talk about it. Seven or eight years passed before I began to think of addressing it. I realised that the hepatitis C diagnosis I had been ignoring was not a good thing to have. I suddenly felt as if there was an intruder in my body. I was in a different chapter of my life then and I began to comprehend the severity of living with this potentially life-threatening illness. I sought out information on the disease and its treatment. My fears around passing it on to loved ones were in the forefront of my mind. It was a dirty and uneasy feeling, and it began to haunt me.

One of the big issues with hepatitis C was that, initially, I did not have any symptoms and it was easy for me to put it to the back of my mind. The realisation was simple. Hepatitis C was attacking my body, whether I was showing signs or not. I had begun to start thinking about my well-being and quality of life. I started to appreciate life and I wanted to keep going down this positive path. The stigma of hepatitis C is very difficult. You do not look sick. It can be easy to almost forget about it until something happens, which for me would be when I was brushing my teeth or if I had an accident and any cuts. I would react badly and would not want anyone to come near me. I felt contagious and like an outcast.

I began treatment with the first batch of direct-acting antiviral drugs, DAAs. I successfully completed this treatment in 2014. When I got my first negative sustained virologic response, SVR, which meant there was no virus present in my blood, I felt relieved. It was hard to believe that it was actually over. It was surreal. I asked myself if it could be real that I was actually cured, and that I no longer felt infectious or a risk to others. I did not realise at the time that I could use my lived experience as a positive tool to support others in similar circumstances. In my current role within the Hepatitis C Partnership, and my previous role working directly to support individuals accessing treatment as an outreach peer worker, I drew upon these experiences to relate to individuals in an empathetic way to offer support and encouragement for others choosing treatment.

I thank the committee for its invitation to attend today's session and for the opportunity to share my lived experience.

Róisín Shortall (Dublin North West, Social Democrats)
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I thank the Chair and thank our guests for the presentation. I have a couple of questions for Dr. O'Carroll, if that is all right.

One of the recommendations is to include properly resourced GPs who can treat hepatitis C among any community-based population. What would it entail, in Dr. O'Carroll's experience, to resource GPs properly?

Dr. Austin O'Carroll:

I thank Deputy Shortall and the Chairman. The issue is that certain populations that are prone to hepatitis C, such as people who use drugs, traditionally tend to avoid mainstream services. For example, I had 40 people in my clinic for homeless people who needed treatment for hepatitis C. I referred 40, but 23 missed their first appointment and 16 missed their second appointment and we ended up only getting three treated. We set up a shared care programme with the Mater hospital - this was before GPs were being allowed to treat. We brought the treatment to the clinic using a hepatitis C nurse and we actually got all those 40 people treated on site.

Since then, GPs have been allowed to prescribe and we are able to do that prescription ourselves. It means that instead of referring people who come into hospital, as they are unlikely to get the hospital appointment letter in the first place, they do not keep regular lives and they do not tend to keep appointments, we can get them on the treatment then and there, get their bloods done, get their tests done and get the treatment prescribed in the pharmacy. If they are on other medication, such as opiate substitution treatment, we can get it prescribed with that. It is much more efficient in getting to a group who tend to avoid secondary care. Does that answer the Deputy's question?

Róisín Shortall (Dublin North West, Social Democrats)
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Does that entail a GP being linked in to a clinic in a hospital, going on Dr. O'Carroll's experience which has been successful with that cohort of patients? In the general run of GPs, are there steps that can be taken to create a better awareness among GPs and stress the importance of testing?

Dr. Austin O'Carroll:

There are two issues. The first issue is that there is definitely a lack of awareness among GPs. I have always believed that, particularly down the country, GPs will avoid treating drug users. Personally, I believe it should not be a matter of choice. One is more likely to die of drug use than of diabetes. The problem is if GPs are avoiding treating this particular section of the population, there will be a group of people with hepatitis C who are not accessing proper primary care services. Opiate substitution treatment is an optional service and there are big black areas down the country where one cannot access treatment. I have dealt with a number of people who have come up from the country to become homeless so that they could access both opiate substitution treatment and hepatitis C treatment.

Róisín Shortall (Dublin North West, Social Democrats)
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In relation to blood testing generally, is there any experience internationally of standard blood tests which would include hepatitis C testing across the general population or is it just the case that high-risk groups would be tested?

Dr. Austin O'Carroll:

Targeting the high-risk groups is probably a more effective policy than doing a standard blood test across the population, but when we say "high-risk" we have a low threshold for high risk. GPs are saying that one should lower the barrier for testing for HIV, hepatitis B and hepatitis C. The high-risk cohort could include teenagers who may be in one's area - there may be a risk that they are engaged in drugs. They are probably not, but one should still have a low threshold for doing the tests. I would not test everybody, but I would create an awareness among GPs to have a low threshold for doing the tests. We do them very frequently now in our practice.

Róisín Shortall (Dublin North West, Social Democrats)
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Is there any cost factor involved where a standard battery of tests might be used for particular groups, for example, in cases where there is a suspicion of drug use in a young person? Is there a substantial additional cost in testing for hepatitis?

Dr. Austin O'Carroll:

I do not know the exact costs for testing. All these tests cost money. We are always balancing the cost of testing for hepatitis C against the cost of treating a patient. The problem is that if people are not tested and cases are not picked up, firstly, those people will go on to develop cirrhosis, which is incredibly expensive to treat. Liver transplants are phenomenally expensive. Secondly, those people are likely to become spreaders of hepatitis C. There is a cost involved in testing. I do not know the exact cost, but it is not a particularly expensive test. The costs of not testing are significant.

Róisín Shortall (Dublin North West, Social Democrats)
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Does Dr. O'Carroll see any case for testing the population generally in the run of the regular battery of blood tests?

Dr. Austin O'Carroll:

Personally, I do not. I have not heard of people asking for that. I tend to think it is best to test the high-risk groups, but to have a low threshold for what is considered to be high risk.

Colm Burke (Cork North Central, Fine Gael)
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I thank all of the witnesses for taking time out from their busy schedules to provide us with information on this issue. I wish to raise the issue of prison services and access to treatment in the prison system. My understanding is that in some prisons people have to attend clinics in hospitals, which is obviously one of the problems in respect of whether we are rolling out a comprehensive service in all of our prisons for testing and providing a treatment programme for those who are affected by the disease.

Dr. Austin O'Carroll:

I will put my hands up and admit that I am not an expert in prison health. I think access to treatment may vary from prison to prison. I know that there is access to treatment in some prisons. I cannot say that about all prisons. I am sure there are some cases where prisoners have to go to hospital. The provision of treatment on site is a much more efficient way of treating these people. Anything that gets people treated quickly and efficiently should be done.

Colm Burke (Cork North Central, Fine Gael)
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Does Dr. O'Carroll believe we should focus on ensuring treatment is available within the prison system, rather than the whole process being dragged out as it currently is, as I understand it?

Dr. Austin O'Carroll:

I think we should do anything that makes access to treatment easier. We know from the system that the treatment does not need to be provided in secondary care centres. It can be done in primary care settings. I fully support making the treatment accessible on site in prisons.

Ms Nicola Perry:

I thank the Deputy for his question. To add to what Dr. O'Carroll has said, I feel from my position that treatment anywhere and for any population is a positive thing. However, rather like the findings of the report, I would say there is a disparity in terms of equality of care depending on where people are based. My understanding is that the situation within the prison system is similar. For example, as I clarified with a colleague in the Prison Service yesterday, if a person is currently in a Dublin-based prison, there is availability of treatment and an effective programme. As Dr. O'Carroll said, secondary care is not required and those undergoing treatment do not need to leave the prison system to attend hospital, unless they are particularly sick, which is rare. In respect of Cork, it was announced last summer that the national hepatitis C programme would endeavour to introduce a programme there. That has not worked for staffing and resource issues. The provision of treatment in the prison setting is a fantastic opportunity. It is something that could be considered when looking at the prevalence of hepatitis C and where case numbers are higher. Prisons would be one of those settings, but again, it comes back to the question of where people are based.

Colm Burke (Cork North Central, Fine Gael)
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A doctor is assigned to each prison. Has there been engagement with all the doctors within the prison system to enable us to set up a clear programme of action? On the Cork issue, I suggest that it might be helpful for us, as members of the committee, to get information on why the programme has not been rolled out, even though it was planned. There is no point in announcing the roll-out of a programme if we are to find out six months later that it is not happening. The witnesses may not have the relevant information, but perhaps they can advise us on to whom we should write to get the information on why the programme is not in place.

Ms Nicola Perry:

The Deputy is right. The Hepatitis C Partnership is an attending member of the national hepatitis C treatment programme, which oversees the treatment of the disease for the island. I was at a meeting last week where the issue of resourcing in prisons outside of Dublin was discussed. That is how I know that the information I have provided is correct. For detailed information on why it has happened and for clarification on the matter, the committee could contact the national hepatitis C treatment programme.

Colm Burke (Cork North Central, Fine Gael)
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The presentation from Ms Perry and her colleague raised the issue of finding the missing thousands, because many people are not aware that they have hepatitis C. How could we start that work in real terms? What decisive action needs to be taken to try to identify those who have hepatitis C?

Ms Nicola Perry:

I think my colleague, Mr. Keane, might want to speak to that issue.

Mr. Marcus Keane:

I thank the Deputy for the question. The recommendations that we outline in the report are largely set out in a stepwise manner. The first difficulty is in identifying what the challenge is in each particular region. From talking to people, I do not think that the burden of the disease is likely to be exactly the same from place to place. As Dr. O'Carroll has said, it is probably not a worthwhile endeavour to try to test everybody. First of all, the issue is understanding how the burden of the disease is likely to be distributed across Ireland, working with experts on the ground who are able to tell us what it looks like from their perspective. It might be that the burden of the disease lies with groups of people who are using drugs intravenously. The burden may lie with people who come from communities that have high levels of hepatitis C. The focus may need to be placed there. The response must be varied based on the distribution of the burden of the disease. Once we have that information and know exactly what it looks like, it is a matter of putting in place the resources and the plan to implement it.

Colm Burke (Cork North Central, Fine Gael)
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Is there one person that we can clearly identify in each HSE area who is responsible for the management of eliminating hepatitis C in that area?

Mr. Marcus Keane:

Ms Perry might be able to answer the Deputy's question. From having written the report and engaged with people on the ground, that is not what I see. I think that is partly linked to the fact that hepatitis C is, to some extent, cross-cutting in terms of the communities that it impacts. Addiction services-----

Colm Burke (Cork North Central, Fine Gael)
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Does Mr. Keane think it would be helpful if there was one particular person designated to deal with the elimination of hepatitis C in each of the HSE areas?

Mr. Marcus Keane:

Absolutely. One of the recommendations that we make in the report is to have a named person who has responsibility for the implementation of plans and the drive towards hepatitis C elimination.

Colm Burke (Cork North Central, Fine Gael)
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In the Hepatitis C Partnership's engagement with the HSE, has it made any commitment in relation to putting that kind of structure in place?

Mr. Marcus Keane:

I did not engage with the HSE around that particular issue. I spoke with people who work in addiction services, with hospital doctors, with GPs in the community, with the general public and with people with lived experience to get an idea of what the blockages in the system are, and what the challenges are in terms of driving Ireland towards the WHO goal of eliminating hepatitis C by 2030.

Colm Burke (Cork North Central, Fine Gael)
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We face a challenge in trying to meet that 2030 target.

Mr. Marcus Keane:

I think we do.

John Lahart (Dublin South West, Fianna Fail)
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I found Mr. Murphy's brief outline of his own experience very useful and helpful. I was very taken by his feeling of contagion. He said he had a dirty and uneasy feeling. He said that one of the big issues with hepatitis C is that initially someone does not really show symptoms, which was true for him, but that he felt contagious. Can he tell us a bit more about that?

Mr. Lawrence Murphy:

It was like an invisible force that I became conscious of every now and again. It was an overbearing feeling that this may be something that was going to affect me and the loved ones around me. The information I received was minimal at the time. This is not to say the information was not there. My way of sourcing the information was not as astute as it could have been. When I started to get more information and when more campaigns around hepatitis C began, I really started to feel more contagious and more overburdened by the prospect of carrying this lifelong illness.

John Lahart (Dublin South West, Fianna Fail)
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Mr. Murphy said he was able to forget about it but there were occasions such as brushing his teeth or if he cut himself, it struck him. Aside from that, what kind of symptoms, if any, did he have in the early years?

Mr. Lawrence Murphy:

The symptoms I became aware of were really highlighted after my treatment when I started to get my energy back, to feel less fatigued, to get my mobility back in a certain way and to feel more energetic and alive again. It was only after the treatment that I realised how lethargic I was and how affected I was by carrying this liver disease.

John Lahart (Dublin South West, Fianna Fail)
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Can Mr. Murphy tell us about the impact of the DAA drugs on him? What did taking them involve because it was clearly very successful? He just outlined the impact they had on him. In his written contribution, he said he got his first negative test, which was obviously a pretty positive experience.

Mr. Lawrence Murphy:

When I started hearing about these wonder drugs as they were called at the time, I was quite sceptical because I had been living with a lifelong illness and thought it would remain that way. When I became aware that there was a cure for this illness, put myself forward and got a chance on a trial basis to use the DAA drugs, I was quite apprehensive and unsure about the outcome. I started to see the outcome. Every time I got tested, I saw that the virus was leaving my body and was being reduced. When I got the sustained virus response, SVR, and was cured of hepatitis, it was a surreal moment. It was something I never thought would happen. It did not feel real but it has had a massive impact on me. It has also shaped the way I work with people.

John Lahart (Dublin South West, Fianna Fail)
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Mr. Murphy is a peer worker. How effective does he think the State's needle exchange programme is? Does it work effectively? Does he think that people who encounter really significant and acute challenges around drugs and needles are aware of the dangers of hepatitis and if they were, would it make any difference? Does he think there is anything else that the State can do around that?

Mr. Lawrence Murphy:

I cannot really give an overview of the whole State response but my experience is that the lack of education and information and the stigma involved - even in this cohort of people - are quite damaging. As the Deputy probably heard before, hepatitis C had a nickname - the silent killer - because nobody talked about it. Nobody ever disclosed that they had it. It was not something that you would be asked about if you went to one of these services the Deputy referred to. People just went to those services to get the equipment they needed and then left. There was not much talk about blood-borne viruses and the opportunities to get tested were minimal. The opportunities can still be minimal. It depends on where you live.

John Lahart (Dublin South West, Fianna Fail)
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Is it still predominantly the case that most people still become infected with the virus by sharing needles or other equipment used to prepare and inject drugs?

Ms Nicola Perry:

Yes, that would be the case. The profile here would be quite similar to that in western Europe, although there are other routes. The Chairman mentioned the issue of contaminated blood and blood products, which had a significant impact on a cohort of people and their families, earlier. Since 1992, blood and blood products have been tested so that is no longer a concern. There is a small chance of sexual transmission, there is also the risk of mother-to-child vertical transmission and there are some figures around tattooing in unlicensed or unregulated premises. There is also a culture of people using steroids and needles in gyms and fitness locations so that has been seen as another route. Around 7% of people, a figure that is consistent globally, who are infected with hepatitis C who do not really know where they got it. They do not have what we would phrase as a risk behaviour in which they engaged.

John Lahart (Dublin South West, Fianna Fail)
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Ms Perry's comment about tattooing is very interesting. I was not aware of that. Is it because of contaminated equipment?

Ms Nicola Perry:

Yes. That is why I tried to be very clear. We are usually talking about unregulated or unlicensed institutions. Tattoos in prisons can be quite normal culturally. The way hepatitis C is spread from one infected individual to someone who is not infected is by a blood-to-blood transmission. When there is any avenue for that transmission to take place, there can be a risk if the individual is infected. What we are looking at is tattooing. Needles tend to come out of the ink into the individual and if that ink or needle is not replaced or sterilised, there is a risk.

John Lahart (Dublin South West, Fianna Fail)
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Ms Perry speaks of there being geographical inequalities regarding the treatment of hepatitis C and how the range of supports and services is not evenly spread geographically. Could she give us more of an insight into this?

Ms Nicola Perry:

I will hand over to Mr. Keane.

Mr. Marcus Keane:

In doing this report, one of the biggest things that stood out for us was inequality of access. There are a number of drivers behind it. It is not difficult to understand if you look at how services are distributed. Of the eight hospitals that treat hepatitis C in the country, five are in Dublin. If you live in Dublin, you will be close to one of these hospitals and on a good public transport network so you will find it easier to live. People in Dublin live closer to hospitals than people in the country. Geographic distance is a large driver in terms of accessibility. We spoke with people with lived experience who were living on the other side of the country and ended up having to travel to Dublin to access treatment . The committee heard Dr. O'Carroll speak earlier about the links with the Mater Hospital.

I spoke to someone based in Dublin who had an incredible experience because they were able to access treatment locally. A major driver is the fact that, on average, people in the country live further away from hospital-based care than people in Dublin. This is one of the real issues driving the need to be able to deliver care in the community, and use a peer-led and nurse-led network to reach and treat people.

John Lahart (Dublin South West, Fianna Fail)
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Leaving aside the obvious matter of distance, how does geography affect treatment? What is the typical care plan? Does it involve regular visits to get treatment or is the treatment self-administered? Does the treatment have to be administered by a nurse or doctor?

Mr. Marcus Keane:

It depends. It usually involves a certain number of visits to the hospital. There might be people coming to do tests during the treatment process and they need to come up to hospital and get their medication through the hospital pharmacy. That itself is a barrier. There needs to be wider access generally in the community. That is one part of it. A person in the west might be coming up to Dublin three or four times over the course of the treatment. Having to travel for treatment also has an impact on people's lives. There are quotes in the report from people on this. If someone is travelling for treatment it is not a case of just getting on a bus outside their house and then getting off outside the hospital. They are getting up at 5.30 in the morning to get a bus, then a train and then a taxi to get to the hospital and then come back again. It is a multiplier effect in that regard. The further people are from hospital-based care, the more difficult it is to access that. So much care for hepatitis C is still based in the hospital environment and that is why there needs to be a push to make things much more accessible in the community, delivered close to where people live.

John Lahart (Dublin South West, Fianna Fail)
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Is it an easy delivery? Can it be delivered relatively seamlessly in the context of a GP's office or primary care centre?

Mr. Marcus Keane:

It absolutely can. I am not a clinician but from having spoken to a lot of clinicians about the issue, it seems it is something that can be delivered quite easily in the community. There will always be people with complicating factors, such as cirrhosis, who will need to be dealt with under the care of a consultant through the hospital system. For the vast majority of people, this is something that can be treated safely and easily in community settings.

David Cullinane (Waterford, Sinn Fein)
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I welcome the witnesses. I will focus on a number of areas, namely, prevention, elimination and treatment. I will start with elimination. This was mentioned quite a lot in the opening statement. The World Health Organization is committed to a target of elimination by 2030. Different things are said in the opening statement. It seems to suggest Ireland's elimination progress could be pushed out to 2050 but elsewhere it says we could be on track for 2030. Which is it? Are we on track for that target of elimination by 2030?

Mr. Marcus Keane:

The HSE stated back in 2020 that we have treated 5,000 people with DAAs and we are on track for elimination by 2030 based on that. I have no reason to doubt that that is absolutely true, or was true at that time. The challenge now is whether that is still true. When you start to treat something and start to have a push for it, there are a group of people already engaged in the system who you know require treatment. It is relatively easy to reach that group of people. The challenge arises when you have dealt with that group of people because then you have to try to reach the group of people who may not know they have hepatitis C. This is what the 2021 paper was looking at. It looked at a number of developed countries and could see Ireland being well behind these targets.

David Cullinane (Waterford, Sinn Fein)
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Is it Mr. Keane's view that we are well behind? If we are behind, what needs to be done to get us back on track?

Mr. Marcus Keane:

We need to take concerted action to make sure we are doing everything possible to drive towards those targets. In order to do that, we first need to explicitly state that it is those World Health Organization targets we are going after. If we look at the historical development of policy, we can see that the national treatment programme and the advisory groups that support it were set up at a time that predated the World Health Organization setting these goals. When they were set up these may not have been explicit targets. Now that the World Health Organization has set those targets, these are the things we need to be explicitly driving towards and we need a coherent strategy to be able to do that. That is what the recommendations are aimed towards.

David Cullinane (Waterford, Sinn Fein)
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One of the recommendations outlined in the opening statement was to bring in regional experts to address regional needs, which makes sense. I do not think anyone could argue against that. Given that over the next number of years we are hopefully going to see the establishment of regional health areas, which will align CHOs with hospital groups and result in much more streamlined and integrated healthcare, what kind of structure or model does Mr. Keane envisage on this issue to fit into regional health areas when they are established? That will obviously take some time but he spoke about regional experts and regional structures. What kind of structures are they?

Mr. Marcus Keane:

In the initial part, the regional experts are to advise on what the burden of disease is. They will need to establish whether it is predominantly within the group of people who use drugs or if there are other communities we need to consider, because when having peers and nurses on the ground who can reach those communities, they might need a different skill set. More broadly, for reaching the regional areas, we are advocating for a hub-and-spoke network where the vast majority of treatment would be delivered in the community with nurses and peers reaching people on the ground and with support through GPs and clinics and then through hospitals and hospital consultants as needed. That type of model is what would be needed in each region.

David Cullinane (Waterford, Sinn Fein)
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I am interested in the hub-and-spoke model but also in getting the treatments to people as quickly as possible. The witnesses will be aware that there were statutory entitlements for those who contracted or were infected with hepatitis C through blood transfusions. There is a range of statutory medical supports there. One was the two-week rule whereby they would be seen by a specialist, and a rheumatologist in particular, within the first two weeks of seeking care. That is not happening. I have dealt with a lot of families over the last while and some of them have written to this committee. One of the groups, Transfusion Positive, has lobbied the committee on this issue as well. They are seeking access to audiology services, chiropody, physiotherapy, consultants, dental services, GP services and probably much more. These are statutory entitlements yet these people are not getting them. What chance then do others who do not have the same statutory entitlements have? Within that model Mr. Keane spoke about, how does he envisage the HSE can be better equipped to deal with those services? Are there capacity issues in some of these areas as well, specifically around some of those needs hepatitis C patients would have? It is not just about the model; it is also about timely access. The model is important but it is also about getting access. If those who have statutory entitlements are not getting access to services, that troubles me.

Mr. Marcus Keane:

Absolutely. There is an issue with capacity in the system that needs to be looked at.

When we spoke to hospital doctors and GPs in the community one of the things that was coming back very clearly was whatever the solution is to this issue, to reaching people in the community, it is not something that is going to be dealt with by the hospitals or the GP network alone. There are people who are working in hospitals who cannot get on GPs' books, so it is a real challenge. The solution to that is we need to look to peers and we need to look to people with lived experience who can reach into those communities and connect with people and support them to access treatment. We need to look at making things much easier to access, much more community-based and much more nurse- and peer-led, rather than relying on the medical aspects of care.

David Cullinane (Waterford, Sinn Fein)
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Does anybody else want to add anything? There is a minute left.

Ms Nicola Perry:

On the evident disparity between the two statements, one is the position of the national hepatitis treatment programme and its feeling we are on track. As Mr. Keane rightly said, that was 2020, even though the programme asserted it again earlier this year. The other one is international research done on modelling data. Essentially, they look at things like incidences of disease, screening of disease, treatment rates and then from that they extrapolate what the outcome looks like. To note something quite clear - and I am aware I am talking about the period under Covid - in 2020 the treatment programme treated 532 people. Also in 2020, we had 326 new notifications of people becoming newly infected or newly tested. My maths is not brilliant but I did it earlier and we cleared 206 people off the table, if you like. If you look at the same figure for 2021 we took 179 off the rate. You can compare that against the idea, which is well-researched in the absence of a full screening programme, which is not financially viable, that we know we have somewhere between 20,000 to 30,000 people living with untreated hepatitis C in Ireland today. If we are looking at an elimination date of 2030 and you look at those figures - I know of course under Covid they would be higher - as you would be looking at us having eight years, you probably need to be treating a minimum of 3,000 people per year just to make that target. Without it becoming a sort of he-said-she-said piece, if we look at how many notifications we get, how many we are treating and compare them against our understanding of the numbers here, then that gives us a slightly different picture than that we are on target.

Róisín Shortall (Dublin North West, Social Democrats)
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I thank our guests for the presentation. I am interested in recommendation 3, which is "Unblock existing policy barriers, and set policy to enable elimination". How is policy being set at the moment? I am not clear about the governance structure for the treatment of hepatitis. Our guests might speak about that for a few minutes.

Mr. Marcus Keane:

I thank the Deputy for the question. Under the national hepatitis C treatment programme, you have the programme advisory group and the clinical advisory group. The policy barriers are not intentional and are not things that have been set up to frustrate the system; they are legacy issues. There are examples of them having been dealt with in some locations and in certain circumstances but it is not consistent across the country. I will give a couple of examples. It is not consistently the case that medication is available through community pharmacies. In some places it is still just coming through hospital pharmacies which is obviously a barrier to care for people. Similarly, in Dublin we have very good examples of care. We have nurses who do phlebotomy in the community, peers who can do testing in the community and link people very quickly to hospital care if they need it. We can contrast that with experiences outside Dublin. I spoke to some people where the situation was that a GP could test in the community but there was one test that needed to be done in a lab and the lab would only accept it if it had been signed off by the consultant. That leads to a narrowing of the pipe where people must pass through a consultant's books in order to get tested. It is about removing those types of barriers that may have made sense at some stage in the past but do not any more.

Róisín Shortall (Dublin North West, Social Democrats)
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I appreciate what Mr. Keane was saying there-----

Róisín Shortall (Dublin North West, Social Democrats)
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-----and the case he made makes absolute sense. If there is a governance structure around the programme, and the partnership has set out the three levels, why have these barriers not been removed? Whose responsibility is it to ensure the service meets the clients' needs and that these things are changed and updated?

Ms Nicola Perry:

I thank the Deputy. I will come to that question in one moment but to return to her previous question that Mr. Keane addressed, when we are talking about policy barriers, he has addressed quite clearly where they lie and where they do not. Again, there is significant regional disparity. As I said, we do not really see it now, especially since doing this report, as urban versus rural but more Dublin and everywhere else, to be perfectly honest. It was a little more stark than we had realised before we started to do the research.

On the policy, the clinical guidelines for managing hepatitis C treatment are set by the clinical advisory group to the national hepatitis C treatment programme. To be clear, we are a member of the national hepatitis C treatment programme as the general oversight but as we are not clinicians, we do not sit on the clinical advisory group. They put a lot of policy and guidelines in place. Some were led by international best practice and some clearly were to fit the context of Ireland today but we had a lot of people who were waiting for treatment back in say, 2014 to 2016. The treatment landscape changed and became much easier to access and much more accessible. Many of those people, as Deputy Cullinane mentioned earlier, were those who had been impacted by the infected blood products and who had been infected through haemophilia treatment. They were treated quite quickly. They had all been waiting for treatment. The rest of the bulk of the people were those who had been infected through intravenous drug use, many of whom also were waiting and they were treated. There was this huge bulk and much policy was built around intravenous drug use, which on one level makes complete sense because it is the bulk of the numbers but then it excludes people who do not fall into that category. One of the biggest policy blocks we see and which is referred to frequently and on which we get feedback from patients is that if you are undergoing the services of an opiate substitute treatment, OST, programme and you receive methadone, your pathway to treatment is incredibly straightforward and simple-----

Róisín Shortall (Dublin North West, Social Democrats)
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Okay.

Ms Nicola Perry:

-----and quite seamless, which is excellent. If you are an individual who has tested positive for hepatitis C but is not in receipt of an OST programme, then in order for a clinician to get permission to treat you, they must get a one-off permission given by the clinical advisory group.

Róisín Shortall (Dublin North West, Social Democrats)
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Okay. My question is, why are those blockages still in place? For example, how often does the national treatment programme meet?

Ms Nicola Perry:

Quarterly.

Róisín Shortall (Dublin North West, Social Democrats)
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Okay. Presumably, there have been recommendations from that programme to the clinical advisory group that these barriers be removed.

Ms Nicola Perry:

Yes.

Róisín Shortall (Dublin North West, Social Democrats)
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Why then have they not been removed?

Ms Nicola Perry:

It is a very good question and not one I am in a position to answer. I honestly do not know. As I said, we are not represented on that particular committee

Róisín Shortall (Dublin North West, Social Democrats)
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I meant that, presumably, the national treatment programme is the overarching body in this regard-----

Ms Nicola Perry:

Yes.

Róisín Shortall (Dublin North West, Social Democrats)
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-----and that if it requests the clinical advisory group to do something, there needs to be a response to that.

Ms Nicola Perry:

Yes and, to my knowledge, there has been no formal response to that.

Róisín Shortall (Dublin North West, Social Democrats)
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Why is that not then pursued by the national programme?

Ms Nicola Perry:

Again, that is a very good question. I do not feel equipped to answer it because I cannot speak for the entire programme. The Deputy is right to ask why it has not been addressed or changed. I really do not know.

Róisín Shortall (Dublin North West, Social Democrats)
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Is the national treatment programme not active or robust enough to pursue the clinical decisions?

Ms Nicola Perry:

As with an awful lot of domains of healthcare over the past two years, things changed in respect of activity levels, frequency of meetings and engagement, almost, because clinicians are pulled in different directions. The committee used to meet much more frequently, approximately eight times a year; now it is meeting four times a year. The meetings take place online. I do not think that that facilitates such robust discussion or follow-up.

Róisín Shortall (Dublin North West, Social Democrats)
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Who heads up the national treatment programme?

Ms Nicola Perry:

The clinical lead is Professor Aiden McCormick. If I am right, I think he is based clinically out of St. Vincent's University Hospital.

Róisín Shortall (Dublin North West, Social Democrats)
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Ms Perry also talks about the importance of eliminating hepatitis C. Are there best-practice models at a European level that have done that? Has that been achieved anywhere, and are there lessons to be learnt from what such countries may have done?

Ms Nicola Perry:

Yes. Does Mr. Keane wish to speak to the two examples from the report?

Mr. Marcus Keane:

We identify a couple of countries in the report. In the European context, Scotland has been very effective and is reportedly on target to have met the World Health Organization's guidelines by 2024, which is a number of years ahead of target. As for the way Scotland has done that, there are policy documents published about it. It has looked to increase community access, to make things as accessible as possible for people, to set micro-elimination targets so to be able to encourage clinicians and healthcare professionals to work towards these clearly identifiable numerical targets, having those targets published and visible. Scotland is therefore a good example to consider in the European context. Egypt has also done a huge amount of work on hepatitis C elimination. There are examples of good practice out there that we can draw on. The recommendations we make speak to that and look to driving towards that.

Róisín Shortall (Dublin North West, Social Democrats)
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Presumably, the severe restrictions that exist here do not exist in Scotland. I am referring to the need to be on opioid substitutes and the restrictions on community pharmacists-----

Mr. Marcus Keane:

I do not have the exact layout as to how things work in Scotland, but there has certainly been a drive there to make things as accessible as possible and to empower people working in healthcare to drive towards micro-elimination targets.

Bernard Durkan (Kildare North, Fine Gael)
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I thank our guests for the information they have published and made available to us. It is very important from the point of view of making that information available to the general public. I have a couple of brief questions.

I know the witnesses have given this information already but, for comparison purposes, on a side-by-side basis, what is the total number of people currently suffering from this condition and the number who are suspected of suffering from it? What are the numbers, roughly, in each category?

Mr. Marcus Keane:

The estimated burden of disease in Ireland as a whole is 20,000 people. The majority of those are people living in the community who are probably living with the disease but do not know they have it. They have not been tested or treated yet.

Bernard Durkan (Kildare North, Fine Gael)
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There are 20,000 sufferers receiving treatment.

Ms Nicola Perry:

At this point, anyone who has been identified has been tested and is seeking treatment. Apart from the odd difficulties we have mentioned with perhaps region or a policy issue, they are able to avail of treatment.

Bernard Durkan (Kildare North, Fine Gael)
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Fairly readily.

Ms Nicola Perry:

Yes.

Bernard Durkan (Kildare North, Fine Gael)
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What should the presumably estimated number of sufferers who have not been identified yet be doing now? They do not know they are sufferers and they have not been diagnosed. What should alert them, apart from fatigue? Fatigue would reflect a number of conditions. Generally, what should people who are silent sufferers do in order to bring their condition to the attention of the authorities?

Ms Nicola Perry:

There are, as I said, a cohort of people who do not know how they may have contracted the disease, but their number is relatively small percentage-wise. Then there are what are termed risk behaviours. People need to be aware of risk behaviours, that is, things they may have done in the past. That may be getting a tattoo in an unlicensed setting or what is colloquially referred to as dabbling in drugs. They may have used drugs, not necessarily in an ongoing setting, or done something when they were young once or twice without thinking about it. We come across that in our day-to-day support of people, who come in to talk to us. They have got a positive hepatitis C test result, they have no idea how they might have got it and then we may start to talk through some things with them and there is a recollection that perhaps 20 years ago they did something that could have been the risk number. Deputy Durkan is right that there could be, and there are, a considerable number of people who may have hepatitis but who do not know it. The only way they will know for sure is to test. That is a simple black line. You test and you know; if you do not test, you do not know and it is only suspicion or concern.

Bernard Durkan (Kildare North, Fine Gael)
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I have heard that home testing can be arranged or is possible. How prevalent is it? I think there was a pilot test scheme in the beginning involving about 1,000 potential patients. Is it in progress? If so, how effective is it?

Ms Nicola Perry:

Again, that was discussed at the meeting last week. There is a pilot test to go ahead, the Deputy is quite correct, with apparently 1,000 test kits. The structure for that to be rolled out is not in place yet. The national hepatitis C treatment programme is apparently in discussions as we speak as to what that might look like. The current prediction is that it will probably be rolled out in the first quarter of 2023 because they need to look at some governance issues as to how that will work. Speaking just from my perspective, while at-home testing and anything that increases people's ability to test is clearly a positive thing, one would have to ensure full good governance and an ethical position that there is a clear pathway to follow up, that is, we would not ever want somebody to be at home by themselves finding out that they have got a positive result without a very clear pathway as to how that care pathway could be followed up.

Bernard Durkan (Kildare North, Fine Gael)
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Is there a perception among the medical profession that hepatitis C is no longer the threat it was or that it has been eliminated or contained?

Mr. Marcus Keane:

From my experience of having spoken to medical professionals, not at all.

We asked them what were their greatest concerns in the context of Ireland being hepatitis C-free by 2030. Their number one concern in that regard was reaching everybody who needs to be tested for hepatitis C, More of them were concerned with that issue than the other four issues put together. They are absolutely aware of that challenge and the need to meet it. That came back strongly through the consultation. What also came back was the understanding that the system in place at the moment is not sufficient to meet the needs of everybody who needs to be tested.

The Deputy asked about the advice for members of the community who may be listening to these proceedings, may be hearing about this for the first time and may be concerned. When we spoke to the public, we saw that there is a big knowledge gap. More than 50% of people did not know what hepatitis C is and only one third knew where to get tested. What people could do is to go to the website of the national treatment programme, which has a list of characteristics relating to people who might be at risk. They could then take action based on that and follow the advice in respect of getting tested, as Ms Perry stated. However, even if everybody in the country who needs to be tested did that and got tested, the system would struggle, for several reasons, to be able to link everybody in to treatment effectively. To go back to the Deputy's original question, the medical professionals to whom we spoke were acutely aware of both those challenges, namely, reaching everybody and, if that is achieved, providing treatment to them all.

Bernard Durkan (Kildare North, Fine Gael)
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How prevalent is the condition outside of people who may be receiving treatment for drug addiction or whatever?

Ms Nicola Perry:

Approximately 70% of people who have been notified as being hepatitis C positive have a history of or involvement in drug use and 30% do not.

Bernard Durkan (Kildare North, Fine Gael)
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Can those who make up that 30% go to a GP for a test or do they have to contact a hospital? Which is a more effective, efficient and direct way to go? Obviously, it is the GP because hospitals have waiting lists.

Mr. Marcus Keane:

Again, this comes back to the geographic issue of accessibility we discussed earlier. It depends where the person is. If a person is based near Dublin city centre and can link in with a peer worker from the Mater hospital, to a network there or with Dr. O'Carroll, that is great. He or she will receive top-of-the-line care and move quickly through the system. That changes, however, if the person is located in a more rural area that is away from an urban centre. There may be barriers to accessing community testing in such areas and the person might have to go to a hospital to get tested. It is a barrier if the person has to travel for an hour or whatever it is to get to the hospital. The split or disparity in terms of accessibility within Dublin and outside Dublin is a real issue.

Bernard Durkan (Kildare North, Fine Gael)
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I deduce that it is a real issue. How serious is the issue of access to testing and treatment outside of Dublin for both categories, that is, those with drug addiction problems in the past or present and those without such problems?

Mr. Marcus Keane:

In terms of a drive to eliminate hepatitis C by 2030, it is a very serious issue. There are those accessibility issues that need to be solved and they are compounded by capacity issues. Even if it is possible to make testing accessible, how can the capacity in the system be filled out to make sure people can be reached, linked into services appropriately and supported through the treatment process? Another concern for clinicians and people working in healthcare is the drop-off between diagnosis and care and then sustaining care and getting out the other end. There is a need to support people through the whole process.

Ms Nicola Perry:

It is completely different.

Martin Conway (Fine Gael)
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He does it in County Clare very successfully. He is everywhere.

Cathal Crowe (Clare, Fianna Fail)
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Christ was able to do it as well. We try. I thank our guests. I was following the meeting from my office but decided it would be more polite to come down to the committee room. It is always good to see the white of a person's eyes when one is speaking to him or her.

I have read our guests' opening statements. I am not an expert on hepatitis C, but we have often heard about it through the years. The prospect of eradicating any such condition is fantastic. I have been enlightened by our guests opening statements and the debate thus far. Ms Perry referred to collecting regional data and regional testing. I ask her to talk us through that. It seems to be a feature of healthcare. Obviously, healthcare is broken down into regions. Is there currently variance in terms of what is happening in different parts of Ireland? Is there best and worst practice?

Ms Nicola Perry:

Absolutely, yes. We should start from the point that there is good reason that the services tend to be centred in Dublin, aside from it being the capital. My colleague, Mr. Keane, referred to five of the eight hepatology units in the country being in Dublin. Clearly, that is part of the issue. Second, there is the issue of what clinicians refer to as the burden of disease. Approximately 70% of those who have hepatitis C - known or unknown - are based in the Dublin region or on the east coast. That makes sense.

In the context of the regions, unless one has a clear understanding of how many people in a region need testing or care relating to their treatments, one does not know what resources need to be put into the regions. Each of the regions is different. Let us take the south east, for example. It has a profile and a population but it does not look like what we have here in Dublin. We would need to know, for example, whether another clinical nurse specialist is needed, or an additional consultant. There are no consultants currently based in the south east. One would have to know whether there is a need to employ a peer worker. We need to know the numbers with which we are dealing. There is no point throwing resources at an area unless one is clear about what is the burden of disease. That is important not only for the individual being able to access treatment when it is needed, it is also important that we use those data to plan the services and what they will look like.

Cathal Crowe (Clare, Fianna Fail)
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Ms Perry answered that question very well. It has been eye-opening for me because I have spoken with addicts in Dublin, down by needle exchanges and methadone clinics. I always assumed that those one may meet outside one of those centres are born-and-bred Dublin people but many are not. Their addiction journey has taken them to the capital out of desperation and because the supports offered in Dublin are better. There is no regional support network of any significance around Ireland. One would often meet people from my county of Clare, or from Offaly or Cork, outside those centres here in Dublin. The accents are very different. One would expect the guys and girls one meets there to be Dublin people but that is not the case.

As regards those who undergo testing, obviously a test captures a moment in time. A person may test negative but have a positive test a few months later. How well does all that feed into the process? I ask that because I recently became aware of a person in my home county who had cancer - this is a different realm of healthcare - but is now going through a totally different treatment regime for a different health issue. It was only when the family stated while he or she was being discharged that this poor unfortunate person had previously had cancer that the care team became aware that was the case.

It is unbelievable that at times in Ireland people have been tested or have had a diagnosis confirmed but that record does not necessarily travel with them. Much of that is due to the fact that we are still on a paper system and digital records are not shared between health services. Our test results are not uploaded to some central database so that when somebody is admitted to hospital, that information is at everyone's disposal.

Ms Nicola Perry:

That is the case. Hepatitis C has required mandatory notification since 2004, which means that in any setting where someone tests positive, it must be notified to the health promotion surveillance centre to keep records that help with planning and understanding the epidemiology. The figures will be there. The figures are also held on what is called a national treatment registry for hepatitis C that is taken care of within St. James's Hospital in Dublin. My understanding is that there is no issue with any of those. They work effectively and the numbers are clear. However, they are what they are. They are numbers. If someone tests in a centre in Dublin, I would hazard a guess that the information is not always carried back to a GP in Clare or Waterford.

Cathal Crowe (Clare, Fianna Fail)
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I think that is true. What we have discussed for the past two minutes could slot into any discussion about healthcare at this committee. The transfer of information does not happen as succinctly as it ought to, unfortunately. Mr. Murphy and Mr. Keane may jump in at any point. I am homing in on some aspects of Ms Perry's presentation but our other guests are welcome to jump in at any point.

The report referred to the missing thousands. Many people need testing and we need to capture their health data and treat them. These are vulnerable people and they are not always the easiest people to get into a hospital environment or a testing environment. Is a liver function test one of the required gateways before a person can be tested for hepatitis C?

Ms Nicola Perry:

That would not be the normal clinical process. The test for hepatitis C is a two-step test. It is fairly straightforward. I will note that I am not a clinician and there are no clinicians in the room. However, I understand the first test searches for hepatitis C antibodies which means that at some point, a patient has had exposure to the disease. That does not mean the patient has the disease. The second test is a blood test that shows the presence or absence of a living virus within a patient's body. A positive result in that test means the patient has the disease and there is no doubt about it. For one in five people, their own immune system will clear that infection. That does happen, which is a positive.

Cathal Crowe (Clare, Fianna Fail)
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I am running out of time. I thank our guests for everything they are doing. The committee will support them in every way it can. Is there any EU country or other country in the world at which we should be looking for best practice? Are some countries a little ahead of us and doing this successfully?

Ms Nicola Perry:

There absolutely are such countries. That point was raised by Deputy Shortall earlier. Scotland has done fantastic work. The UK in general is doing well but Scotland is a good comparator because the population profile is quite similar, as are the numbers of cases with which it is dealing. The services are similar and the countries are similar culturally. We have invited experts from Scotland to come to speak to us many times in order to help us formulate our strategies. Mr. Keane or Mr. Murphy may wish to add to what I have said. I would recommend we look to Scotland.

Mr. Marcus Keane:

Yes.

Cathal Crowe (Clare, Fianna Fail)
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I thank our guests. We will give them all the support we can. I am going to continue to follow the meeting virtually. I will be listening to the rest of the debate.

Martin Conway (Fine Gael)
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I thank Mr. Murphy for sharing his story. It is always great to hear lived experience because it makes a difference when we engage with and listen to people's lived experiences. I thank Mr. Murphy for that. I also thank Ms Perry for her presentation. The elimination of hepatitis C is an interesting and achievable aim. It is important and appropriate for us to acknowledge the work of a former member of this committee, namely, former Deputy Kate O'Connell, in this area. She has tirelessly campaigned on the issue.

We spoke earlier about prisons. It seems to me an absolute no-brainer that we must deal with the problem in prisons immediately. We need to completely eliminate the virus in the prison community. That seems to make sense.

I see in the useful booklet provided to the committee that there is a section on understanding the challenges of the regions. Our guests might develop that conversation a little more. How would they propose to do that?

I am also interested to know what our guests' relationship with the HSE is like. Are there gaps there? Does the HSE understand our guests' suggestions and recommendations? What is their relationship with the HSE like? What should be done? Where are the gaps? Perhaps the committee should at least ask the HSE to respond to what has been said by our guests today. Perhaps our guests could comment on those points.

Ms Nicola Perry:

I will take the question about the HSE and look to Mr. Keane for a reply to the question about the regional response. I thank the Deputy. The Hepatitis C Partnership is made up of a collaboration of members which includes people who work for the HSE. They are there at that level and feed into the partnership. One of the reasons behind the origin of this collaboration, going back to 2014, was that our view was that pockets of work were being done in different sectors.

Martin Conway (Fine Gael)
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That point confused me. I know that HSE staff are part of the partnership but yet we are behind where we should be. That is what I am trying to understand. Where is the breakdown, if you like?

Ms Nicola Perry:

I am not sure there is a breakdown. The Hepatitis C Partnership believes we are behind because of the pandemic. We can put that point on the shelf while acknowledging it. Many people were treated initially. It was important that nearly 6,000 people were treated after the advent of the use of these particular DAA drugs. We have made the point a couple of times that many people were waiting to be treated. They were on the books, if you like, and moved forward when the treatment became available and they took that treatment. Because of the nature of the disease, as we have debated this morning, it is the case that people sometimes do not know they have it or know they have it for a period of time, as Mr. Murphy said earlier, but because it is not symptomatic, they do not feel compelled to do anything about it. It may also be the case that a patient is afraid of people's perceptions, including those of the medical professionals. I do not think there is a breakdown. A concerted effort needs to be made. If I am sitting in Athlone this afternoon and there may be some reason for me to think I have become exposed to hepatitis C, there are a couple of things that need to happen. I need to know that might be the case so I need to understand the risks involved. We learned from the report that only 30% of medical professionals would agree that everyone who possibly needs to be tested has been.

Martin Conway (Fine Gael)
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I understand the pandemic has caused healthcare in general to fall behind. I am trying to ascertain why we are as far behind in respect of elimination as we are given the fact that a substantial fixed budget is available.

Ms Nicola Perry:

There is indeed a substantial fixed budget. From my experience of working in the sector, the core problem at the heart of any issue is resourcing or financing which is not the case in these circumstances.

I understand the Senator's slight confusion as to why there is a problem if we have resources, services and a budget.

Martin Conway (Fine Gael)
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Exactly.

Ms Nicola Perry:

That is the core of the Senator's question.

Martin Conway (Fine Gael)
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I could not have put the question better myself.

Ms Nicola Perry:

The simple answer is one of the reasons we did this research, and we were delighted to get the opportunity to speak to the committee today, is that we are not quite sure either. The answer is I do not have an answer exactly to the Senator’s question.

Martin Conway (Fine Gael)
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That is fair enough.

Ms Nicola Perry:

I do not know why because if we implement what we know works from practice abroad, from best practice and from the experts we have here, and if we replicate the really good models we have referenced today countrywide, we will not have an issue. This is not just about meeting a target or a need, this is about people and their lives.

Martin Conway (Fine Gael)
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Absolutely.

Ms Nicola Perry:

People may have the disease and currently be asymptomatic. As Mr. Lawrence Murphy said, he did not realise until after he was cured that he did not feel good before the cure. Some people are not living their lives to the full. This is called a silent killer. People do not talk about it enough. The other big reason for the silent killer tag is that if left untreated, it can and does progress to significant liver damage, liver cancer and possibly death. It is a serious disease that has this incredible opportunity of a cure in a matter of weeks, which is available in the community. Apologies, I went slightly off track-----

Martin Conway (Fine Gael)
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That is okay.

Ms Nicola Perry:

-----but it was important to say that.

Martin Conway (Fine Gael)
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We have certainly got a far better understanding of this issue this morning. I would like to hear the HSE's perspective on it at some stage. I suspect we will not have time to bring its officials before the committee and engage with them in the way we have engaged with the witnesses. Perhaps we could send them a transcript of the proceedings and ask them to respond. Clearly, they have a very focused role with a substantial budget. I would like to find out their views on this document and how we can achieve the ultimate goal. I thank Ms. Perry.

Bernard Durkan (Kildare North, Fine Gael)
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I have a further question. I meant to ask if all contamination from blood transfusions has been eliminated at this stage. The presumption is that it has been but it might not have been.

Ms Nicola Perry:

The Deputy referred earlier to there probably being some issues still around that but my understanding is that everyone who had been infected via that route had the opportunity for treatment and everyone who wished to avail of it had taken it. That is not quite my area of expertise but that is my understanding.

Bernard Durkan (Kildare North, Fine Gael)
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In terms of comparisons we make with other jurisdictions, for example with our nearest neighbours, the US, Canada and perhaps Australia, it might be no harm, if possible, to make comparisons on the level of the infection, the treatment and efficacy of it, and gaining access to treatment and diagnosis.

Ms Nicola Perry:

The answer the Chairman's question is no, absolutely not. It is a blood to blood transmission. There would have to be a route of transmission and a movement of blood across two people. The bodily fluids the Chairman mentioned would not carry sufficient amounts for transmission to take place.

Mr. Lawrence Murphy:

We have come across a number of individuals who tested positive for hepatitis C and may have had the virus for a decade or more but had no symptoms and were physically in good health. However, when they got tested and scanned it turned out they had cirrhosis. They would not have known that unless they came into contact with their peers and we were able to forward them to get FibroScanned and put on a pathway to get treated. Those individuals, and there have been a few of them, have gone on to be successfully cured of hepatitis C. They still have cirrhosis and need to link in and be monitored but the disease progression has been halted through the direct-acting antiviral, DAA, drugs.

Mr. Marcus Keane:

I agree with the Chairman. In terms of reaching people, if somebody is struggling with drug use or living in chaotic and difficult circumstances, their focus is not always on engaging with healthcare systems. That is why it is important to bring the types of service the Chairman mentioned, the needle exchange, outreach services and other such services to people where they are in the community. The same thing is true of hepatitis C testing and treatment. We need to be able to reach people where they are. There are examples in Ireland of good practice in that regard, of peers going into community services, doing swab tests for hepatitis C and being able to link people in very quickly into services. When people have not always had good experiences of healthcare, having peers being able to go in and speak to people is the best way best way of reaching people. We have quotes in the report of people saying: "I am coming from the same place you were. I have this lived experience as well." That makes it so much more credible and real for people and makes them want to connect and engage with the service, particularly if they have not had good experiences of healthcare systems in the past.

Mr. Lawrence Murphy:

It is a great question. The understanding in this respect for people to get tested where they are at is a great incentive. Many people for whatever reasons do not engage with services nor do they need to do so. What they need is some information on potential risk factors they have encountered and it may have been decades ago or recently. They have the opportunity to get an oral swab test, which is just an indicator, and they still have to get a blood test. For them to get information that not only is such testing for the virus accessible in their community but that it is treatable in their community removes much of the stigma associated with it. There is much stigma attached to having contracted hepatitis C which is associated with drug use and bad behaviour. However, that is not the case for many people. For many people it could have resulted from experimentation.

Allowing them to be tested in the setting of their own community or within their home would be a great incentive that should be pursued.

Mr. Lawrence Murphy:

The partnership created a programme whereby peers, who were identified from addiction services and homelessness services and among individuals who did not know how they had contracted the disease, were trained over a couple of days regarding how to approach and listen to people but also how to inform people about the burden of hepatitis C and the pathway that was being created. I understand this approach was mostly confined to Dublin but it could be replicated and that is the great thing about peers. There are peers throughout the country who could be resourced and led in such a way that they could guide other individuals to the cure for hepatitis C.

Mr. Lawrence Murphy:

In our experience, you could be in the hospital for between one hour and two hours. There is a battery of tests to take before getting the tablet itself. There is a blood test, an ultrasound scan if the disease has progressed and a FibroScan test. In some hospitals, the care is provided swiftly. The period from first diagnosis to the pill being administered could be as short as four weeks, although that is not the case outside of Dublin and in certain regions.

Mr. Lawrence Murphy:

We recently came into contact with an individual who had been living with hepatitis C for more than 20 years. They had linked in with services but had never availed of treatment. This individual has severe liver disease. When they did put themselves forward for treatment in recent months, they had to undergo some additional tests, such an ultrasound scan and other tests for what the Chairman just described, such as liver cancer.

Mr. Lawrence Murphy:

There are many marginalised and disadvantaged areas where people may not have the money to commute to certain places. It is about being able to offer the support and the care within their own setting and community for this potentially life-saving treatment.

Ms Nicola Perry:

Mr. Murphy made one of the points I was going to make about travel and work. In our experience, having talked to people, a couple of issues make it a challenge. This disease has the potential to make people so ill and to be such a burden on the healthcare system in the long term, yet it can be cured relatively easily. Nevertheless, if someone needs to travel long distances, that will affect his or her job, and if he or she is not working, he or she may not have the money to undertake the travel.

I can think of some real-life examples. One woman who had two children under five years of age could not attend the hospital appointment because she did not have anyone to take them and there was no way she could bring them to Limerick from Dublin and back. Another factor is that even if the person has money or does not have an issue with work, particularly for people who may have historically contracted the virus, he or she may experience discrimination or possible stigma about it. How can such people explain to people where they are, where they are going or what the treatment is for if the individuals in their lives at that point are not aware of some aspect of their history or background? It is not the same as getting a diagnosis of something that does not come along with any value judgments, such as becoming diabetic. It has additional factors, as well as the medical ones, that should be considered.

Ms Nicola Perry:

Absolutely. I am aware there are probably people listening to this meeting who may personally have been, or whose family or friends may have been, impacted by hepatitis C. Although it may sound like an ironic use of words, I often refer to this as a good news story because there is a cure. Not only is there a cure but we are in a system whereby that cure is available regardless of income. I have worked in addiction in this country for more than 20 years and I frequently say there is no cure per sefor addiction. We cannot give someone a tablet and expect it to be gone. There is no cure, by waving a wand, for poverty or trauma but with this particular issue there is a cure. In our experience with people, and this is so important, a person may feel as though he or she has failed at a lot of things throughout much of his or her life. If that person then does something about it, even the feeling he or she used to have something, regardless of its origins and the fact it is now gone, may leave a mark. The person may, as in Mr. Murphy's experience, physically feel better, but the emotional and mental impact can be very significant.

Ms Nicola Perry:

I could not agree more.

Mr. Marcus Keane:

Yes. What stood out for me from talking to everybody related to having that concerted goal and effort. We are now midway through 2022 and the World Health Organization goals have been set for 2030. Three thousand days, or whatever the figure is, remain in which to achieve those goals. It is about having a focus on that, being explicit and saying whether the targets we are aiming for are what we are driving forward. Once that is in place, everything else, such as the recommendations we set out in the report, aims to drive towards that goal.

The overall picture, when we step back, is one where we must ask if this is what Ireland is driving towards. Are we seeking to eliminate hepatitis C by 2030?

Ms Nicola Perry:

We do not need to change our model because we have some excellent practices. Dr. O'Carroll, who spoke earlier, is involved in several initiatives. We have outreach models, a pathway of care, as I said, and an accessible treatment. What we do not have is everybody who may be impacted included. We do not have a general understanding of this disease among the population. Usually, it is people who are individually affected who understand what this disease is. Even when people do understand it, they often do not know there is a cure. When we think that a cure has been available for some time, this situation is concerning.

What we have, and what the research showed us, is the commitment, passion and drive of professionals working in the hepatitis field. Those are mainly in hospital settings but also in outreach endeavours. They know what to do in respect of how to work this out once we identify the people affected through implementing our national screening guidelines. We have an excellent document drawn up in 2017 on the means of implementation. It is like a handbook for everyone out there regarding how we can work with, or not work with, who we screen. It is a matter of finding out where those people are and letting them know. I remember in Germany a few years back there was an amazing campaign undertaken on public transport in this regard. It consisted, basically, of a poster with three questions on it. It was along the lines of "Have you done this, this and this?". If people had done those three things, then it was recommended that they go to the equivalent in Germany of their GP or medical health centre and ask for a test. I refer to that kind of initiative.

Our clinical approach and clinical responses, particularly in certain locations, are excellent. It would be impossible to take away from them or from the hard work being done on this disease. Is it something that is always at the forefront of minds? No, it is not. Does everyone who needs to know this disease may be a risk for them know that it is? No, they do not. We can take lessons from models abroad. Australia and Canada have done fantastic work. Again, populations may be different but the scenarios are similar.

We have, however, what we need here. Regarding what the Deputy mentioned earlier, we have the budget and the resources. The problem we have may be some blocks. If I am being really honest, some people may also just wonder why people cannot just take a treatment that is available and being provided and paid for. As was mentioned and emphasised, the key is information. This is about addressing a situation where people will not go and get a treatment if they do not know they have the disease or they do not know there is a cure for it. There are nuances around hepatitis C, because of its core group, that are not relevant in other medical domains. It is important that we do not ignore these aspects and that we ensure there is a context to how we respond and that this perspective is considered.

Ms Nicola Perry:

Absolutely.