Cost talks on cystic fibrosis pill are taking too long
When discussing your life with friends, the term “cost-effective” is unlikely to come up. The idea a financial payment dictates whether you live or die seems extreme.
Death happens to everyone, of course. For those with cystic fibrosis it happens at a much younger age after a long battle where most are mindful daily of “cost-effectiveness”.
There is the daily transactional exchange of treatment, physiotherapy and medications that in turn allows for truly incredible moments of happiness at just plain being alive with wonderful family and friends. That’s not negativity, that’s reality.
Now there is a real possibility of altering the need for such daily transactions through the presence of a little blue pill that is reversing the damage caused by the illness in some people, and possibly, in the future, eradicating the need for some of these treatments. Kalydeco has taken some people with CF off transplant lists. Right now, for those people, this means beating death.
The right to access to Kalydeco is being assessed as cost negotiations trundle on after the National Centre for Pharmacoeconomics last week decided the drug was not value for money at an estimated cost of €234,000 a year per patient.
The word “transaction” is of course contentious. But language around this issue has been jarring since the debate began.
Terms such as “cost- effective” and “game changer” – as the drug has been described – are detached from the true infusion of humanity this situation should bring. Of course we cannot pay for Kalydeco at the price being asked; it must be reduced as in England and the US.
The irony is that if you got a group of people with CF together they would probably tell you pretty quickly that money meant very little to them. Fighting most days to stay alive puts all that other stuff into perspective.
They would probably tell you the words “cost-effective” and “game changer” made them nauseous but that they understood, like so many in this country, the economic reality.
Minister for Health James Reilly said last week that six to eight weeks are needed for negotiations. Another time frame cited was March or May. The drug has been assessed for months already. The parties involved are not heartless or clueless, and have been meeting weekly. Geography cannot be an issue in a time where facilities such as Skype are available. It should not take this long.
In 2009 a 35-year-old woman with CF, who does not wish to be named, started on Kalydeco. For the first five months she did not require hospitalisation or intravenous antibiotics. Her weight increased and she was able to exercise more frequently. She was taken off the drug and began needing intravenous antibiotic treatment again, never less than three weeks at a time.
In January 2012 she was placed back on the drug under compassionate use. In the year since, she has needed only one two-week intravenous antibiotics course at home.
The drug has created several first-time miracle moments for her. This is the first time in nine years she did not exceed her allocated paid sick leave at work. When she recently caught a cold, for the first time since her teenage years she did not require at least two weeks of intravenous antibiotic treatment.
For the first time in adulthood, this woman finds herself celebrating her ability to excel in her chosen field without constantly being knocked back. And there are little things. On trips to the cinema she realises she is no longer coughing and eliciting grumpy looks from fellow cinemagoers. In fact she is breathing relatively normally.
All of this, to any human being, is priceless.
* Orla Tinsley is a freelance journalist and campaigner for better cystic fibrosis treatment and care facilities