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.