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Parkinson’s Sufferers need clarity and timeframe on treatment – Senator Conway-Walsh

13 August, 2019 - by Rose Conway-Walsh

Sinn Féin Senator Rose Conway-Walsh has asked that a decision on funding levodopa-carbidopa intestinal gel (LCIG), known as Duodopa, be made sooner than later as there are a large number of patients awaiting a decision.
Duodopa is used to treat advanced Parkinson's disease, a neurodegenerative disorder that affects 12,000 people in Ireland. Senator Conway-Walsh had raised the issue in the Seanad with Minister of State Catherine Byrne just before before the summer recess.

The Mayo-based Senator has said:
“Certain patients were receiving the treatment through an access programme provided by AbbVie, the company that manufactures the medicine.

"As of 30 April of this year, this route is no longer available to patients or treating consultant neurologists. 81 patients were treated under this programme. The 82nd patient and subsequent patients will be denied access to the treatment
"Last month I asked Minister Byrne to raise a request with Minister Harris that a final decision to fund the treatment be taken before the end of July.

"Like so many other cases involving drugs awaiting approval, people recognise that there must be a system and protocol in place, but the lack of information and a timeframe is unfair to sufferers. However, for any progress to be made, the HSE must sit down with the drug company and negotiate.
"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.

"We also have a situation where Duodopa is available in Britain and Irish sufferers of Parkinson’s have met with patients from there who have received the treatment, and can see for themselves the benefits associated with it.
"I am calling on The Minister for Health to at least make it known when he intends to make a final decision.”


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