Ireland’s Call for KALYDECO
Ireland has the highest incidence of Cystic Fibrosis in the world. Ireland also has the highest proportion of people with Cystic Fibrosis with the G551D (the so called ‘celtic’) gene mutation in the world.
KALYDECO has already been approved by the medicines/drugs agencies in the US and the EU and is the first ever drug available that impacts on the underlying cause of Cystic Fibrosis for people that carry this gene mutation (around 10% of people with CF in Ireland).
Because of huge research and development costs, there is no doubt that this drug will be expensive, however there is strong evidence to support the significant impact that this drug has had on patients, including CF patients in Ireland who took part in the clinical trials and who are still being prescribed with KALYDECO.
In Ireland it is vital that a fair arrangement is reached as soon as possible between the HSE and Vertex, the drug's manufacturers, to ensure that this drug is made available in Ireland for everyone who needs it.
Support CF treatment in Ireland. Support access to KALYDECO.
Sign this petition and help Ireland’s Call for Kalydeco.
Issued by the Cystic Fibrosis Association of Ireland.
Updates
Reached 250 supporters
November 2, 2012
November 2, 2012
Reaching this level of visibility feels heavy because we know exactly what is at stake for these families. The momentum is finally gaining real traction but the exhaustion is setting in as we keep fighting for access to this life-changing medication.
Reached 100 supporters
November 2, 2012
November 2, 2012
The days are long and the bureaucracy feels heavy but we are pushing toward our next target. If you know someone who understands the weight of this fight please send this link to them today.
November 1, 2012
The days are long and the progress feels slow. If you can send this link to someone who hasn't seen it yet we might finally hit one hundred signatures.
6 Comments
Cost is just an excuse. Look at the quality of life it gives back to these kids. Do the right thing for once.
If it works for the gene mutation then why are we waiting. Every day counts for these families.
My nephew has CF and seeing him struggle is just heartbreaking. Give these people the treatment they need, money shouldnt be the reason someone doesnt get to breathe properly.
Absolutely ridiculous that this isnt available yet. Sort it out!!!!
The government needs to stop dragging its feet. Lives are on the line.
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Ireland’s Call for KALYDECO
Ireland has the highest incidence of Cystic Fibrosis in the world. Ireland also has the highest proportion of people with Cystic Fibrosis with the G551D (the so called ‘celtic’) gene mutation in the world.
KALYDECO has already been approved by the medicines/drugs agencies in the US and the EU and is the first ever drug available that impacts on the underlying cause of Cystic Fibrosis for people that carry this gene mutation (around 10% of people with CF in Ireland).
Because of huge research and development costs, there is no doubt that this drug will be expensive, however there is strong evidence to support the significant impact that this drug has had on patients, including CF patients in Ireland who took part in the clinical trials and who are still being prescribed with KALYDECO.
In Ireland it is vital that a fair arrangement is reached as soon as possible between the HSE and Vertex, the drug's manufacturers, to ensure that this drug is made available in Ireland for everyone who needs it.
Support CF treatment in Ireland. Support access to KALYDECO.
Sign this petition and help Ireland’s Call for Kalydeco.
Issued by the Cystic Fibrosis Association of Ireland.
Updates
Reached 250 supporters
November 2, 2012
November 2, 2012
Reaching this level of visibility feels heavy because we know exactly what is at stake for these families. The momentum is finally gaining real traction but the exhaustion is setting in as we keep fighting for access to this life-changing medication.
Reached 100 supporters
November 2, 2012
November 2, 2012
The days are long and the bureaucracy feels heavy but we are pushing toward our next target. If you know someone who understands the weight of this fight please send this link to them today.
November 1, 2012
The days are long and the progress feels slow. If you can send this link to someone who hasn't seen it yet we might finally hit one hundred signatures.
6 Comments
Praying for everyone fighting for this. We need this drug in Ireland now.
Cost is just an excuse. Look at the quality of life it gives back to these kids. Do the right thing for once.
If it works for the gene mutation then why are we waiting. Every day counts for these families.
My nephew has CF and seeing him struggle is just heartbreaking. Give these people the treatment they need, money shouldnt be the reason someone doesnt get to breathe properly.
Absolutely ridiculous that this isnt available yet. Sort it out!!!!
The government needs to stop dragging its feet. Lives are on the line.
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Share it with friends to help reach 500 signatures.
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Praying for everyone fighting for this. We need this drug in Ireland now.