Sir, – Further to the article “Some drugs are more equal than others” (Health + Family, February 25th), in fact, the CF drug Kalydeco is one of the most fast- tracked drugs of all time, worldwide, because of its effectiveness for those with the so-called “Celtic CF gene alteration”, which amounts to one in nine of the CF population in Ireland and one in 50 in many other countries. Forbes named Kalydeco “the most important new drug of 2012” .
We in Cystic Fibrosis Ireland have seen the dramatic impact of this drug first- hand. As with most drugs for those with rarer diseases the cost is very high because research costs are extraordinarily high and because there are very few patients from which the pharmaceutical company can make a return from their huge investment and risk.
In some CF medical and scientific conferences discussion is on the potential of decades being added to the survival age for many as a result of this drug. For others the benefits will likely be less because they have already suffered considerable lung damage.
Are we supposed to ask our patients to wait 20 years until we are absolutely certain about the increase in survivability, or should we accept the general consensus from clinicians, scientists (and many journalists) that this is a crucial breakthrough in CF healthcare, especially as it has more impact in Ireland that anywhere else in the world. In short, any debate on the funding of healthcare and priorities should be informed by a patient and clinical perspective as well as that of the economist. – Yours, etc,
PHILIP WATT,
Chief Executive Officer,
Cystic Fibrosis Ireland,
Lower Rathmines Road,
Dublin 6.