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

Thursday, 22 December 2016

The pitfalls of casualisation & corporate greed.

 When you are 16 living at home and working casual it is probably ok. Being a casual, with a family a mortgage or trying to break into the housing market is an absolute nightmare.
Not knowing if you are working from one day to the next. Being let go at the whim of the management. Being bullied to work overtime under threat of being replaced. Living life like you are a plane in a holding pattern. Being forced to provide medical certificates even though you don't get paid for sick days. Being bullied in ways that breach OHS laws yet not being able to complain because your position is so vulnerable. Flexibility is a one-way street & it isn't favourable to the employee.

Earlier this year while investigating this issue from the inside. I witnessed a large group of casual labour hire employees effectively laid off because the labour hires contract had expired. You would think that a profitable firm like SRG would negotiate a new contract that catered for existing workers at the existing rate of pay. They didn't they used it as an excuse to change firms and put all workers back to award rates. People were bullied to sign up with the new contractor. They refuse point blank to say if the workers pay would be the same. One manager actually said it would in a meeting which I'm sure if grilled he would deny today. How do I know this? I asked him the question. Many of the workers at this site had been labour hire casuals for up to 5 years. They were losing 3-4 dollars an hour to do the same job the next day. Now while this is slightly different to the issue with #CUB55 it is still a disgrace. These people generally weren't union members predominantly through fear of losing their jobs or a lack of understanding of how our industrial relations system works and the protections it affords workers. It is interesting that SRG had recently renegotiated their EBA. The EBA has a clause in it for company casuals, yet they ignore that clause & utilise casual labour-hire workers. The reason I mention that is EBA's, are meant to be under our laws negotiated in good faith. If you have no intention of honouring a clause then are you in breach of good faith bargaining?

Irrespective of that casuals are locked out of the housing market unless they are already in it. They cannot get housing loans due to the precarious nature of their employment. They are generally forced to rent which puts pressure on them to do excessive amounts of overtime to meet their obligations and live. It is a very ordinary way to live for extended periods. No holidays no sick leave & no prospect of a permanent job. SRG hadn't hired a full-time worker at this site for over 4 years.
                                                                   

Wednesday, 21 December 2016

Why I want to represent people.

I watch & learn as I go like we all do. We all have opinions, ideas, and experiences through our lives. I share mine when I think it will help someone else. This stuff is at the core of why I ran for parliament in 2016. It is why I want to keep working towards it in 2019 provided I'm still in good nick and there's still a need. I'm actively interactive with people online predominantly on twitter. I'm doing this to connect with people. To better understand issues that exist, other experiences are critical. I'm not always going to agree with the position or ideas of others online or in other forums.I don't have a mortgage on being right. By listening & engaging, you grow in knowledge & understanding.
If I felt we were well represented in parliament I wouldn't be doing this. I've watched politicians throughout my life and I find most of them to be aloof, distant and out of touch with my reality. Our parliament has a lot of the same types of people. 60% are lawyers while in our society less than 1% of us are lawyers. I really believe that is a major issue & why decisions govt make often aren't what's required.
I've got a dad in aged care. A mum who is a pensioner. A sister who has cystic fibrosis.  A daughter with a new small business. My eldest son Darren is developing apps while working in the mining sector.A son with autism. A wife who is a carer. My father has bipolar disorder so mental health is an interest. I've got three grandkids with everything in front of them. I lost a family member to suicide so that support network is an area I am learning about. I have a diverse work history. I've run a business.  So all of these things I have an interest in and reasonable knowledge of. I'm just one of you is what I'm trying to convey.
Nobody with issues should be ignored or left behind by society. I can see that problems are growing under the governments we have now & have had since the 1980's. I remember Bob Hawke saying no Australian child will live in poverty when I was at college. Sadly it has never been higher in Australia than it is today.                                              
My point really is I want to be interactive with people so that I am better equipped to represent their concerns. If I manage to get elected next time, perhaps people seeing me doing it my way will put pressure on our political parties to change their behaviours. Politics has to be about society about you and everyone else around you, in my opinion.
I

Tuesday, 20 December 2016

Government must stop blaming welfare. Lazy lies do damage.

There are numerous people that fall under the same very broad umbrella. Welfare is a very large part of the federal budget. It covers the aged pensioners, disabled & unemployed. All of these people are tarred with a very broad brush by government propaganda. The media assists the government by portraying them as a burden. The reality is this is not the case. It is possible for any person to find themselves in any of the three subsets of welfare. Even the most successful people can be hit by misfortune in life. Welfare is just a safety net to ensure we don't leave our fallen in our wake.
Of course, in any area of life where money is involved, there is a criminal aspect which none of us condone. The government often misrepresent this in the media. Recently the unemployed were targeted as bludgers. Claims that 35,000 dole recipients had refused work & that it was a huge burden on taxpayers. The media instead of fact checking this just ran with it. The truth is the number is actually 589 according to ACOSS. The 589 would have had their payments cut immediately if they refused work without providing a genuine reason. I know this because I have seen the system from within. There are arduous sometimes invasive details required of people on welfare. The government uses propaganda to deflect from their own failings. In 2013 they promised to provide 2 million jobs yet since Xmas 2015 over 60 thousand permanent jobs have disappeared.
                                                                 
Governments use welfare recipients as whipping boys. If we are distracted by them we are not focussed on the failures of governments. People that are paying tax are riled at the thought of freeloaders. The media & government fuel that anger. They don't delve into fact.

Sunday, 4 December 2016

The things making #auspol dysfunctional.

Political parties generally start off with reasonable intent. Ideas, philosophy, whatever it may be. Small or large they all appear to have difficulty with focus. Ambition, factions and varied opinions all seem to push those they represent further back in the queue. Political donations have a real impact also. To compete they are necessary. How much does this cloud the party agenda? They require unity to survive, yet the unity in public discourse doesn't encourage argument and is counterproductive to policy improvement.
Within parties, you have preselection battles these are again both generators of factions & often not merit-based outcomes. Having the best candidates in safe seats should be beneficial to growing a parties brand. Often candidates get in safe seats & become ensconced irrespective of performance or
ability. Many couldn't be removed with a crowbar, often keeping better candidates out in the cold.

In Australia, we have a two party preferred system. It's effectively a duopoly. One fails the other gets the gig. Monotonous, it encourages people to hang around for next time. You don't generally win government the incumbent either retains it or loses it. A large percentage of voters are like beavers who mate for life, although in recent elections, that is slowly eroding.

I think we would be better served as a nation if we voted for individuals rather than parties. Perhaps 7 from each State. No second house. All candidates should be given equal media time during election campaigns. I think it would encourage real debate. No more political donations. No relationships between corporations & candidates. If a candidate has a pecuniary interest in any area of government business it must be made public. It would automatically preclude them voting on issues related to those interests.
We have to make sure that people in government are genuinely working for the people they represent. Our current political system ceased to do so a long long time ago. We need to ensure our welfare as a
society. The status quo is failing 99% of us. It's very important that the network surrounding government is independent of government. Political appointments are not conducive to independence.