Orkambi decision will make CF sufferers feel like equal citizens again

CF sufferers are brave.

They have had to be.

Especially the ones who live here on this damp rock on the edge of the Atlantic, whose harsh rains and erratic dampnesses combine to create an environment that is a polar opposite to a climate which is optimum.

Every day brings a challenge that is unknown to most of us. Risks with the weather that most can all take sans souci are ones that have to be more carefully consoiered and avoided by people with CF.

But it’s more than just the weather.

Already Ireland has the highest incidence of CF in the world.

So you would think that we would go out of our way to have the most reason to treat this disease, to allow sufferers feel that they are not second class citizens, and not abandoned, not because of a lack of hope about their condition, but because of a lack of funds.

And then there is the bureaucracy.

The poorly-staffed CF centres.

The lack of CF centres.

The inherent unfairness of it all has often left CF sufferers alone and isolated and vulnerable.

It was bordering on horrific to imagine that they have had to go through months and months of thinking that their country would abandon them in this hour of need. That their condition might be deemed just too damned expensive to treat.

That they would not be given the same chance as citizens of other countries, that they would live their lives, frightened at the prospect of being pawns in a game of medico-legal commerce.

As I write this now in a local hostelry, a CF sufferer sits at the table opposite me, engrossed in the news that from May 1, the cystic fibrosis (CF ) drugs Orkambi and Kalydeco will be made available to people with the condition. Health Minister Simon Harris announced in the Dáil on Tuesday that the HSE and Vertex Pharmaceuticals had reached an agreement in principle on commercial terms for the supply of the drugs to Irish patients.

This young man has often spoken about what Orkambi will mean to his life and to the life of his fellow sufferers. There is a renewed energy about him today at the news.

He has known the constant hospitalisation, the disruption to his work and studies, the fear that the lack of these drugs brings.

The fear that his country may refuse to buy Orkambi.

CF is an inherited chronic disease that affects the lungs and digestive system of about 1,200 children and adults in Ireland. A defective gene and its protein product cause the body to produce unusually thick, sticky, mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Orkambi and Kalydeco improve the quality of life for CF patients by improving lung function and reducing hospitalisations by up to 40 per cent. Approximately 600 (550 for Orkambi alone ) Irish patients will benefit from the drugs.

There are many people, locally even, for whom this week’s announcement has come too late. There are people who have passed away whose chances would have been improved significantly if they had access to Orkambi.

While the cost of the drug was the prevailing factor that prevented a deal for so long, there is a school of thought that the cost of it, in the region of €100 million may be offset by the avoidance of long term hospital stays.

It will also allow the CF sufferer to go to work, to attend college, to enjoy a full life, and to stay out of a hospital bed which is then freed up for somebody else.

Thse are all factors that are undoubtedly considered by the Minister as he concludes negotiations with Vertex this week.

But the main factor was that at the end of it all, we are making sure that CF sufferers will feel they have the same shot at life as the rest of us — and at the end of the day, that is what the role of the State is meant to be.


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