Edward Reilly, known to his friends as Eamonn, was told this week that the NHS will now pay for him to try the breakthrough drug Duodopa.
It is hoped the drug will ease his symptoms so much that he will be able to go and see his 21-year-old granddaughter Amy Thomas - a member of a local musical theatre group - perform on stage for the first time in years.
Eamonn will start a week-long trial for the drug in August and if successful will continue the £27,000-a-year treatment at home.
His wife Carol told the Telegraph: he said: “It would mean he could go and see his granddaughter in her shows.
“At the moment due to access and him not being able to get comfortable he can’t see her perform anymore.”
“He’s pretty excited.”
Eamonn, 71, of Eastern Green, was diagnosed with the progressive disease 16 years ago.
He suffers from tremors and poor mobility, and when his current medication wears off at night he is virtually paralysed.
Back in February the couple were distraught when Eamonn was initially denied the new wonder-drug.
He was told that his situation was not exceptional enough to warrant the treatment.
At the time, Carol said: “Our lives with Parkinson’s Disease is gradually getting worse and Duodopa was a beacon in the darkness. To be refused funding is inhuman.
“Eamonn hardly moves after 8.30pm and is in bed between 9 and 10pm every night because his medication stops working.
“His sleep pattern is disturbed. He needs to pass water several times a night and as he cannot get out of bed, I am required to assist, which disturbs my night’s sleep also.”
Story Link: Anguish as Coventry grandfather is denied Parkinson's 'wonder-drug' on NHS
Now the NHS say Eamonn and around 100 others do qualify for the drug as part of its annual commissioning round.
Duodopa increases the level of the chemical dopamine in the brain, which can alleviate symptoms.
Throughout his fight for access to this life-changing medication, he has had the support of Coventry councillor Steven Thomas, whose own grandfather suffered with Parkinson’s Disease.
Coun Thomas previously told the Telegraph: “Eamonn’s case is one of the worst I have ever encountered of scientific advances providing hope to patients, only for NHS rationing to snatch it away.
“Eamonn and Carol have worked hard all their lives to contribute to the NHS, only to find that they’ve been badly let down when they need to get something in return.”
James Palmer, NHS England’s Clinical Director for Specialised Commissioning, spoke about the decision to add Duodopa to the list of drugs available on the NHS.
He said: “The new policies we have been able to approve will help us to improve and extend thousands of lives for years to come through prevention, identification and treatment.”
Laura Cockram of Parkinson’s UK, said: “I am elated that the NHS has finally arrived at this decision.
“We know this treatment has had transformative effects on many that have been treated with it and how vital it is that those who need Duodopa receive it without delay.”
What is Duodopa?
Duodopa is the brand name for a drug called Carbidopa Monohydrate/Levodopa.
How is it administered?
The drug is an intestinal gel that is administered into the stomach through a pump. It is administered in a small dose at first to reduce the risk of side effects. It is administered throughout the day so the drug is constantly in the system.
Because the tube into the gut needs to be done surgically, a trial is conducted before hand to test suitability. During the trial, a tube is ran through the nose into the gut.
How does the drug work?
The drug is made of carbidopa monohydrate and levodopa. They both work together to increase the levels of dopamine in the brain.
Levodopa helps to rebalance the chemicals in the brain that cause Parkinson’s. Carbidopa then lowers the amount of levodopa that is required by the body and can reduce some of the side effects of levodopa, like nausea and vomiting.
http://health.einnews.com/article/274787746/oSetSS7TNNWtdvDd
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