In mid-November 2016, the Society met with the new Minister for Health Simon Harris to brief him on the haemophilia landscape. We had a very constructive discussion where we pointed out the very positive impact of the Society’s involvement in the haemophilia product, tender and purchasing process over the past 12 years. We also briefed the Minister on the new haemophilia treatments which will be available in the coming years and we discussed the haemophilia organisation model and how this may be applicable to other chronic or long-term conditions. We also briefed the Minister on the major progress made in relation to access to Hepatitis C Treatment for people with haemophilia. Over the past 10 years, the major cause of death for people with haemophilia in Ireland has been Hepatitis C. The Society made it our major objective as far back as 2012, to ensure that every person with haemophilia was offered Hepatitis C treatment as quickly as possible.
By early 2012, there was a total of 54 people with haemophilia who required treatment for Hepatitis C. On April 17th, 2012, the Society met the then Health Minister, James Reilly and sought reimbursement for the first group of protease inhibitor hepatitis C treatments – Telaprevir and Boceprevir. This was granted and over the course of the following 18 months, a total of 20 people with haemophilia were treated with these new drugs in combination with pegylated Interferon and Ribavirin. This was a particularly harsh and difficult 48-week course of treatment. However, the Society assisted each of our members both individually and collectively to persevere with this treatment regime. Of the 20 who were treated, all except one individual completed the course of treatment. The one individual who did not complete the treatment passed away during the treatment. As a result of this very high compliance rate (compared to a 67% compliance rate generally), a total of 16 individuals cleared the virus achieving a sustained virological response (SVR) or effective cure rate of 80%. This success rate of 80% compares favourably with the national rate of 51%.
In late 2014, the Society were involved with the Department of Health expert group on Hepatitis C which established the early access programme for the new direct acting antivirals (DAA’s). A further two individuals with haemophilia were treated under this programme. We then secured a commitment from then Health Minister Leo Varadkar that all state infected patients would be treated with DAA’s no later than the end of 2017. Given the serious morbidity and mortality consequences for our members, we worked with those who still required treatment and with the treatment centres to access treatment as expeditiously as possible. To date, 27 people with haemophilia have been treated with the new DAA’s. We have now spoken individually to each person with haemophilia who required treatment. There are a very small number of individuals remaining who, despite being offered treatment, have decided not to avail of treatment. Consequently, all persons with haemophilia in the state who were infected with hepatitis C have now been treated or offered treatment and hepatitis C in the Irish haemophilia population is effectively eradicated. This is a major achievement. We are the first country in the world to have achieved this for people with haemophilia.