I’ve written recently about our desire to see Crizotnib on the Pharmaceutical Benefits Scheme (PBS) in Australia as soon as possible. This decision must be made by the Pharmaceutical Benefits Advisory Committee (PBAC) who meet three times each year, in March, July, and November.
The PBAC is an independent expert body appointed by the Australian Government. Members include doctors, health professionals, health economists and consumer representatives. Its primary role is to recommend new medicines for listing on the PBS. No new medicine can be listed unless the committee makes a positive recommendation. When recommending a medicine for listing, the PBAC takes into account the medical conditions for which the medicine was registered for use in Australia, its clinical effectiveness, safety and cost-effectiveness (‘value for money’) compared with other treatments.
There are real difficulties knowing how to measure cost-effectiveness. The temptation is that a an expensive drug that helps a small number of patients, which is not guaranteed to be curative, will quickly be considered non-cost effective. However, when you factor in that the person or the government might be spending similar sums on other treatment; that the targeted therapy may have better medical outcomes; that it may introduce a much improved quality of life; that it may enable the patient to return to work and not experience the financial and personal costs of joblessness; and more… the equation is not simple.
And another important factor, and I do not know if this is considered by the PBAC or not—if a drug enables the person to live an extra six months, or six years, or whatever, with their family, friends, and community, isn’t this worth something. I know it is to me, and my wife, and my children, and my grandchild, and my friends, and my church, and a bunch of others.
I’ve recently met up with people from Rare Cancers Australia. They are doing a great work of helping to support people who cannot afford the treatments they need. This month they have launched a campaign called Sick or Treat. Please take a look and see if you might be able to help.
Please also watch this clip from the Today Show. Anita has the same cancer and mutation as me, and it is excellent that this is getting publicity. If you feel like lobbying the PBAC, please do. If you pray, please ask God that they will approve this drug and many others like it.
macarisms 
Can you hear our small voice…. I would say that now… our voice is not so small anymore. How amazingly thankful we are to all the ALK’s and their family and friends who are speaking out! And many thanks to Rare Cancers Australia’s – they are true to their word! Its wonderful to be able not only support fellow ALK’s through Sick or Treat but also others who are rare and are experiencing similar difficulties with our PBS. Thank you for all your posts on this topic David and Fiona… Warm regards, Jo and Julio in Brisbane