Mr. Seamus McCarthy:

As members will know, hepatitis C is a disease caused by a virus that infects the liver. The Health Service Executive estimates that between 20,000 and 30,000 people in Ireland may have the hepatitis C virus, many of whom may go on to have significant medical needs if they are not successfully treated. Recent advances in the drugs used to treat hepatitis C have resulted in significantly improved treatment outcomes and the Health Service Executive has set a target to make hepatitis C a rare disease in Ireland by 2026. Each course of treatment is expensive, however, and varies between €23,000 and €92,000 per patient, depending on the strain of the disease.

Approximately 1,700 people, most of whom were women, were infected with the hepatitis C virus through the administration of contaminated blood and blood products during periods in the late 1970s and again in the early 1990s. A number of schemes put in place to compensate and support those affected were subsequently extended to include persons similarly infected with HIV. Expenditure on these schemes is accounted for in a variety of ways. In undertaking this review, I wanted to compile an overview of the expenditure already incurred as a result of the contamination. I also wanted to assess the progress being made by the HSE on its current strategies and plans for treatment of hepatitis C.

The expenditure in 2017 under the schemes to compensate or assist those who contracted diseases due to contaminated blood or blood products totalled €36.4 million. Between 1996 and 2017, a total of just over €1.5 billion was spent. Compensation schemes, including insurance subsidy payments, accounted for €1.18 billion of that total. Almost €300 million has been spent on the provision of hospital and primary care services for those affected.

The HSE published a comprehensive national strategy for dealing with hepatitis C in 2012. It included 36 recommendations covering the areas of surveillance and data collection; education, prevention and communications; screening and testing; and treatment. The implementation of the recommendations has been mixed, with just ten considered to have been fully implemented and most partly implemented. The national strategy noted that a comprehensive programme had been put in place for patients who had acquired hepatitis C through contaminated blood products, but recognised that the needs of those who had acquired the disease through other means had not yet been adequately addressed. The Department of Health published a plan in 2014 for the establishment of a multi-year national hepatitis C treatment programme, which commenced in 2015. It aims to prioritise treatment for those at greatest clinical risk.

Since 2015, the Department has allocated €30 million a year to fund delivery of the treatment programme. In the period 2015 to 2017, more than 2,100 patients completed treatment. As my report was being compiled, information about treatment outcomes was available for 90% of those treated in those years. This indicated that the treatment was successful in clearing the hepatitis C virus in approximately 94% of cases. The majority of the annual budget allocation is used to purchase treatment drugs. Under the terms negotiated with the drug suppliers, a percentage of the purchase price for a course of treatment is subsequently refunded in the form of a rebate. The average cost of treatment, net of the rebate, was just under €28,000 per patient in 2017.

It is a complex challenge to ensure treatment delivery to the maximum number of highest-priority patients in eight main treatment centres, with varying drug costs per virus strain, within a set budget, and this is further complicated by the price rebate arrangement. In 2017, the HSE envisaged the smooth utilisation over the year of the available budget of €30 million. Payments for treatment accelerated ahead of planned levels in the second quarter, however, resulting in the majority of the available budget having been spent by the end of July. This led to the suspension of the programme in the middle of the year and uncertainty about what would happen thereafter. As indicated in figure 15.7 in the report, significant rebate receipts in the third quarter brought the net spending level back into line. Figure 15.8 indicates the impact this had on treatment delivery, with significant front-loading in the first half of the year and a stop-start pattern in the second half.

The chapter makes a number of recommendations for management of the treatment programme. The HSE indicated it accepted all the recommendations and I am sure the director general will be able to update the committee in this regard.