This is a must for the minister and hse….no brainer

My sister is Associate director of clinical operations at Vertex Pharmaceuticals another great breakthrough to go along with there great work on hep c ! Some fantastic news. Minister get the finger out !

This has to be made available. CF patients need something to give them hope and keep their spirits up. Having seen so many beautiful people, and good friends, succumb to this disgusting disease, I can’t wait for the day when it will become a disease consigned to history. Sure, this drug isn’t the solution, but it’s a step in the right direction and for those patients that it can help, it’s a lifeline in so many ways. Whatever the costs most of them will be returned with less hospital admissions, less money spent on other drugs, less money spent on providing Long Term Oxygen Therapy and less work for our overstretched health service.
As stated above, its a no-brainer!

The drug Kalydeco which has recently been approved for people with CF (PWCF) in Europe and is now subject to negotiations between Vertex (the company that developed the drug) and the department of health. Would it not be wise to wait for the outcome? The drug company wants to get as much as possible for this drug and of course the department of Health want to pay as little as possible. Any interference outside of these discussions could have a negative effect on the outcome.
Kalydeco is as close to a cure to CF as we are likely to see with the those on “drug” seeing dramatic improvements in their health with increased lung function, increased weight gain and reduced drug intake. The gain for the patient is a healthier life and the gain for the department of health is reduced admissions and drug costs. The cost of the drug is not the only mitigating factor here as there as patients will have reduced admissions to hospital. Vertex are currently developing another CF drug which is going through clinical trials and it is targeted at the wider CF population and may well be part of similar negotiations in the very near future.
As a parent of a child who has 2 copies of G551D the drug Kalydeco can and will lead him to living a life that before now was unheard for someone with Cystic Fibrosis.
Also as a parent of of a child who has helped to raise €4,000,000 to develop life saving facilities for our family and friends with CF attending Cork University Hospital where 20% of the CF population has a copy of G551D there can and will be only one outcome.

My son has the G551D mutation and we have been watching this medicine come closer to becoming available from the trials in 2008. (Unfortunately his lung function was not good enough to take part on the trials at the time. We assumed that soon after it became available in the USA at the end of January of this year that it would become available for all who needed it. How wrong we were! It is now September!! ….Will this even be available for Christmas?? This is certainly dragging out….and whilst doing so, lungs and other organs are being irreparably damaged.

We have now formed a Patient Interest Group for G551D in the UK & Ireland in order that we can share information on what is happening, contact politicians etc on behalf of our members. If there are any G551D patients or parents / carers who would like to join our group then please contact us at Patient.Interest.Group@gmail.com

Good to see this being discussed in Ireland! Would be delighted to see Ireland leading the way in providing the
access to Kalydeco in these islands. The effect this treatment has on the life of sufferers is amazing – it simply can not be measured in terms of cost! Hope the ministers agree!

Will be interesting if Bottler really doesn’t want to affect frontline services by approving this. Sadly it applies to 100 people….which doesn’t amount to too many votes.

They should wait till they are 100% sure , remember the drug that cured morning sickness.