cystic fibrosis – a gamechanger for many

The killer disease cystic fibrosis (65 roses) this week became far less of a problem for a number of Australians.  From what I hear, a particular drug (Trikafta) was costing families up to $300k per year as they struggled to keep a child with CF alive.   But late last week that all changed as Australia put Trikafta on the PBS for folks with one particular strain of the disease.  More is hoped into the future as the benefits of this drug are seen in the community.

It has been good news for many, but my thoughts went to the financing of this life-saving change for many.  Initially I saw just that huge cost, multiplied by however many people would now be able to buy the drug for just $6.80 per script.  My mind boggled as I considered the savings to each family, and the effect that would have on their lives.   Huge !!   But I also wondered how a Govt could look at spending so much on one individual as they took on that $300k cost for each person helped.

I resolved to try to understand the GAINS made by making such a move.  One obvious gain was in the removal of several hospital stays per year for each individual.  Hospitals and staff don’t come cheap, so certainly some massive gains to be made there.  How one might quantify this is beyond me, but I’d be interested to hear from others re such likely savings per person per year.  Like, what if a CF sufferer needed 10 visits per year, each of 7 days, with all the attendant staff, drugs, operating room costs, ward costs, etc.   What would 70 days of critical care of one person in a hospital actually cost in dollar terms?   And is 70 days per year actually realistic anyway?  It could even be more than that (or less, of course).

Could it be that much of that $300k can be saved with the lack of hospital visits this new drug brings?   As well as that, imagine the productivity gains of those parents who no longer have half their minds on a job, and the other half on “when will my child need their next hospital visit?” or on “How can I afford the next purchase of this drug to save my child?”    Indeed their euphoria of no longer having that problem could boost their productivity enormously – what’s that worth?

Perhaps it would allow a parent to return to work after being a full-time carer for years.  Savings there (perhaps) when the Govt no longer pays a carer allowance, and a person starts paying Tax again.   Certainly some $$ value there too.

Another way to look at this is as an investment in the future.  It appears many children born with CF don’t live much past 30 years, and likely sickly for much/all of that time.  So that Govt support is actually saving a life that will hopefully live into old age with their help, thus allowing a full 40 years plus of working life, paying taxes and adding value to a community over that time.  Certainly gains there that offset some of the cost per person paid by Govt (i.e. the taxpayer).

Hey, I know, I’m struggling – but I was blown away to learn that the Govt has just stepped in to help so many, and wondered how they might have rationalised such a decision.   The above attempt is a guess at best.  If anyone can add more, please do – meanwhile I am happy for those souls who no longer have to fight so hard to save their child from this killer disease.

Can you add better data there?   I’d be quite interested to know more – and thanks……

Benny