Wednesday 14 November 2018

'We're so relieved', says mum as Grace wins fight for €400k drug

Grace Cogan with her mother Grainne
Grace Cogan with her mother Grainne

Elaine Keogh

The mother of a seriously ill nine-year-old girl has spoken of her relief after she finally succeeded in getting the expensive treatment she needs to improve her health.

Grace Cogan, from Co Monaghan, was born with a rare enzyme disorder called Morquio and the only treatment available worldwide is the drug Vimizim, which costs close to €400,000-a-year per patient.

Morquio has left Grace the size of a two- to three-year-old and living with pain and fatigue.

Grainne Cogan, with the support of husband David and their other children, Hannah (16) and Killian (14), campaigned for years to get Grace access to the drug which is available on the NHS in Northern Ireland, a short distance from their home in Carrickmacross.

On Monday Grace went into Temple Street Children's Hospital for her pre-treatment assessment and on Tuesday she received her first infusion.

"She had to be monitored closely for any adverse reactions," said Grainne. "Grace got through it well. It was a bit of a rollercoaster of emotions - I felt excited that the day had actually arrived and at the same time I was nervous about how she would be."

Grace will receive infusions once a week and Grainne said: "Please God, it will be worth it once we start to see improvements in her general condition. We as a family are so relieved to be at this point - we don't have to campaign for her any more."

Grainne and David hope that the future for Grace will be much improved as a result of Vimizim.

"I want her to be happy and as healthy as possible and that she gets the same opportunities and chances in life as any other person. I don't want Morquio syndrome to hold her back and I truly believe this treatment will give her the best chance she has at life," Grainne added.

Vimizim was assessed by the National Centre for Pharmacoeconomics (NCPE), which decided in December not to recommend it for reimbursement.

That blow came just weeks after the HSE, in error, approved the family's application for Grace to receive the drug under the Treatment Abroad Scheme.

Grainne welcomed this week's news from Health Minister Simon Harris on the Valletta Declaration which it is hoped will allow new drugs to be accessed at a lower price.

Ireland signed the declaration, along with Spain, Italy, Greece, Portugal, Cyprus, Malta and Romania, on Tuesday.

The Department of Health said in a statement: "The declaration is in line with the minister's stated objective to work with other countries to make medicines available to patients at affordable prices."

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