Rose Conway Walsh (Sinn Fein) | Oireachtas source

I refer to the response of the Taoiseach in the Dáil yesterday regarding Spinraza. Parents and sufferers alike received bad news after months and months of raising this issue and waiting for a response. The HSE, yet again, has not been held accountable for how it negotiates an acceptable price with Biogen, the maker of Spinraza. Practically every other European country has managed to negotiate a deal with Biogen but, in 18 months, the HSE has failed patients here. That is not acceptable. The rare diseases technology review committee has recommended Spinraza to be supplied on a managed access programme so that the cost can be managed but the corporate pharmaceutical unit, CPU, seems unable to act to communicate what an acceptable deal would look like. The lack of any communication with the patient group over the past 18 months by the HSE is highly disrespectful and unacceptable. The CPU has to be held accountable for this. The Minister for Health, Deputy Harris, in whom Fianna Fáil will show confidence later today, has not shown any interest in doing this or in offering to meet the families. I appeal to him to meet these families in order to discuss the matter. We are talking about a small number of children.

Another issue that affects children is the audiology test that deviated from best practice. I accompanied parents of affected children to meetings with the HSE on one occasion and asked the official present if there were any more cases apart from the 49 identified. I was told "No". Time and again, we were all told "No" and that there were 49 cases. There are Senators sitting in this Chamber who know that this is true. From my experience of other scandals, the initial figure given of agencies and companies rarely gives the full picture. We now know that 60 more cases have been identified. Many of these children are in the late stages of development and have gone misdiagnosed for years. In many cases, there may be permanent or reversible damage. Some of these children had already underlying disabilities. I ask that the fault, wherever it lies in the review process, be addressed so that absolutely everybody who is affected can be contacted and adequate treatment and support be provided. We need an inquiry into this. It is obvious that the governance was not in place here and that, again, nobody was accountable. That is why a review is needed. Some of the 49 cases do not even have their medical card applications approved. The buck must stop somewhere. This matter is evidence of another failing on the part of the Minister for Health.

Finally, regarding the news that only 11,334 persons out of the 206,000 who have been taken on by JobPath remained in employment for over 12 months, the two companies, Seetec and Turas Nua, received full payment for every one of these referrals. In fact, they received double payments. The Dáil has passed the motion calling for the end of mandatory referrals. I want the Minister for Employment Affairs and Social Protection to come before the House to discuss this matter because this is where it originated. In December 2016, I and my colleague, former Senator Trevor Ó Clochartaigh, raised the scandal of JobPath. Incidentally, the Taoiseach was Minister for Social Protection when that contract was negotiated. I want to see the contract because I want to see where the €149 million has gone.