Ms Vicky McGrath:

Yes, €86,000 and yet we do not know what recommendations were made and if changes were made. From the perspective of the patient, Ms Daly has mentioned the technology review committee where we have patient involvement in providing real lived experiences of living with rare conditions and what effect a particular therapy might have. This has greatly enhanced the role of patients in the process. There still remains what we would call the black box within the HSE. While patients are providing their expertise to the technology review committee and, more often than not, the committee is recommending reimbursement of the particular therapy, it can still take weeks, months or years for a product to come through the HSE. We do not know what is happening internally. We are not getting access and we do not see it.