Rose Conway Walsh (Sinn Fein) | Oireachtas source

I thank the Minister of State at the Department of Health, Deputy Catherine Byrne, for coming to the House to respond to my Commencement matter on the status of the levodopa-carbidopa intestinal gel, LCIG, known as Duodopa. The medicine is used to treat advanced Parkinson's disease, a neurodegenerative disorder that affects 12,000 people in Ireland. The uncertainty around the availability of this treatment option for people with advanced Parkinson's first arose in June 2018. At that time, there was an expectation that certainty of supply would be achieved within three to four months. In cases where patients were in critical need of this medicine it was made available through an access programme provided by AbbVie, the company that manufactures the medicine. However, as of 30 April of this year, this route is no longer available to patients or treating consultant neurologists. I understand that 81 patients were treated under this programme. The 82nd patient and subsequent patients will be denied access to the treatment. One such patient is a man from Cork who was diagnosed with Parkinson's disease at the age of 30. He is now married with young children and is still in his 30s. He is significantly affected by his condition and urgently needs to be treated with Duodopa now, not in one month or two months, to ensure he does not miss the window of opportunity during which the treatment can have its maximum benefit for him, as a patient who is suffering unnecessarily.

Last week, the National Centre for Pharmacoeconomics, NCPE, stated on its website that the health technology assessment, HTA, for Duodopa had been completed, which is one year after the reimbursement ceased. The issue needs immediate attention. I ask the Minister of State and her ministerial colleagues to lend their support to ensuring this matter is expedited to ensure reimbursement for this medicine and equitable access to it. People should not have to travel to the UK and beyond to access the deep brain stimulation, DBS, services as some people have been forced to do. The Minister of State knows that Duodopa is a proven and tested product. The positive impact it can have on patients and their carers is immeasurable. Combining a specialist nurse service with this treatment will keep patients out of hospital and, therefore, money is saved and space in hospitals is freed up.

The costs of every other medicine for Parkinson's disease are covered. Why is Duodopa not covered? Patients do not opt for the treatment without first giving it great consideration and when it is not critically needed. However, when it becomes necessary for patients to access this treatment, they must be able to do so. The Minister of State will be aware of the procedure involved in taking this medicine. The treatment requires the medicine to be administered through a patient's intestine and is unpleasant. When there is no other option, however, this treatment becomes necessary. We urgently need a timeline or date for when we can expect to see a long overdue decision on Duodopa. There are a number of patients for whom this medicine provides a lifeline and constitutes their only sense of hope. The matter is, therefore, urgent.