Friday, 23 December 2016

Open letter to stakeholders: Orkambi. Prime Minister Malcolm Turnbull Minister for Health Sussan Ley & Chairman Vertex Dr Jeffrey Leiden

Dear Prime Minister Turnbull,
Dear Health Minister Ley,
Dear Dr Jeffrey Leiden Vertex Chairman, CEO & President,



Rather than bedazzle you all with facts I'd like to highlight what your repeated haggling is doing too many young children with specific genes who suffer from cystic fibrosis. Assuming you aren't sufferers I thought the best way would be to have you all into a national television studio and have some trained physicians carefully place bricks on your chests until you can barely breathe. You will be monitored to make sure you don't pass out.
Of course, should the need arise you will be given medical assistance. Provided the medications you need are listed on the PBS & you meet the criteria the govt stipulates. Perhaps we can have you cryogenically preserved until we determine if you are eligible. Perhaps our Prime Minister can have funds transferred from the Cayman Islands so he can be attended to first?
I imagine now you are starting to feel the pain and unpleasant nature of what it is like to not be able to take breathing for granted. This is the feeling Vertex, Peter Dutton MP & Tony Abbott MHR before the hostile takeover put children & adult cystic fibrosis patients through for 2 years fighting over a price for Kalydeco. This two-year delay does damage to lung function. .Some die due to the wait. Little Aussie battlers being failed by a government & a corporation that let's face it isn't on struggle street. I'll get to that later.                                          
Now we are asked to do the same dance by a few different players with the same depraved indifference to human life and best practice medicine. Can someone please take a brick off Sussan's chest she looks a tad purple? This time the medication is a new one Orkambi & it could be helping kids now but they are again facing the prospect of a drawn-out process until this product is made available to those it can help.
Feel free to talk amongst yourselves because if you reach an agreement at any time the bricks can be removed by the highly trained medical team  & you are free to leave.

In the meantime here are a few facts Vertex CEO paid US $24 million 2014 & got a 50% increase in 2015 was paid $36 million. The 2015 payment alone could fund 20% of the Double Delta F 508 population. 195 Aussies struggling for air. Vertex itself is doing very nicely. As you can see in a couple of lovely graphs shareholders aren't exactly slumming it. I imagine those bricks are causing some pain so I won't punish you further, even though Vertex have no difficulty in doing that to the people they hold to ransom.                  
                                                                   
Then there's the Australian federal government that also happily plays Russian roulette with over 1,000 lives. Is it really about the Vertex price? Or is it the lobbyists from other pharmaceutical companies that stand to lose out? New medications replace many other medications. Also, hospital admissions can be greatly reduced through these new medications. People that have been unable to properly engage in life, education & employment now can. The offset benefits of best practice medications can be huge. Delaying decisions for two years can have devastating consequences. Unlike you guys, these people can't remove bricks & forget the experience the next day. Food for thought, I hope.


Thanks for taking a peek at my open letter.


regards Mark Dickenson