How am I supposed to respond to a Government that wants me dead?

When Mark Butler stands up at the National Press Club later today, he’ll most like bang on about making medications cheaper. What he won’t tell you is that only some people get some medications cheaper, and he doesn’t give a stuff about the rest of us drowning under rapidly soaring health care costs.

Have no doubt about it, Mark Butler is the kind of health minister that doesn’t care that his management of the health portfolio is killing people.

Let’s be a bit more accurate: the Department of Health’s mismanagement of the PBS is killing people. But Mark Butler is a wussy kind of minister that the Department just walks all over, and he lets them kill people.

No, I’m not being dramatic or hyperbolic. Nor is this new news to the Department of Health. Patient advocates – including myself – have been screaming our heads off for years that the PBS is killing people, forcing Australians to take old, ineffective, side-effect heavy medications rather than new and better ones with less side effects because they don’t wanna pay.

Want proof? Here you go – this is the Hansard of my testimony to the parliamentary inquiry into how new drugs get into the PBS. There was a lot of focus on what I said for two reasons: firstly, our advocacy for the migraine drugs and the way were being shafted was a significant factor in the parliamentary inquiry being called, and secondly, I shocked a few people by calling for a Royal Commission into the PBS, likening the department to a corrupt local council that needs to be sacked, and stating pretty clearly that the Department of Health had lied to Senate Estimates.

And I don’t recoil from any of that. I still want a Royal Commission into the PBS, still think the Department of Health is behaving like a corrupt local council, and the Department of Health has absolutely lied to Senate Estimates about migraine drugs.

The testimony that is far more shocking, however, was from the woman sitting next to me, Jessica Bean, who was talking about selling her home to pay for medication that was literally keeping her alive, her only alternative treatment being a double lung transplant, and the whole time watching her friends die.

Have no doubt, the mismanagement of the PBS is killing people.

I know, y’all like to think of the PBS as some mythical forcefield protecting Australians from the humiliation of not being able to afford their medications. You look at stories in the US about people delcaring bankruptcy because they can’t pay their health bills, or rationing their medication, and think we are **soo lucky** that doesn’t happen here.

But the reality is that the current PBS only helps some Australians, with some conditions, and a rapidly increasing percentage of Australians are now reliant on medications that are not on the PBS.

They are living that indignity of not being able to afford their medications right now.

They are rationing their medications right now.

They are having hard discussions with their pharmacists about which drugs they can go without right now.

They are going broke because of their health care costs right now.

And Australians are dying because they couldn’t afford their medications right now.

My medication – medication without which I am completely debilitated, medication without which the New England Times would not exist, and the 12 people we employ would not have work – has failed to be listed on the PBS for the fourth time trying over the last 7 years. It has cost the drug company millions in application fees and related costs, and it has failed because the government doesn’t want to pay.

And I do mean literally doesn’t want to pay. Anything.

All of the new migraine medications are being forced under the same ‘risk sharing agreement’ or cap that limits the number of chronic migraine patients the government will pay for medication to about 20,000. There’s half a million Australians with chronic migraine who need these treatments, under they want the drug companies to just give the other 480,000 people their medication for free. Unsurprisingly, drug companies said no.

(The two million more that would benefit from these medications by aren’t debilitated by migraine more than 15 days per month the Government doesn’t give a toss about at all.)

So I now just live in a world where the Government would rather me dead, or completely debilitated and dependent on welfare and care, than pay around $2k a year for medication that allows me to be a productive tax payer.

How am I supposed to respond to a government that wants me dead or debilitated?

What reaction would be considered sane and rational in response to such an obvious threat on my life than deny me affordable access to the one thing that makes my life liveable?

While that rage bubbles and I try an process it in a healthy way, I thought the five year anniversary of the parliamentary inquiry into new drugs was a fitting time to reignite my call for a Royal Commission into the PBS.

It’s time to expose just how bad things are. How many people have having their health and wellbeing threatened by a pharmaceutical benefits scheme that has long ago ceased to deliver affordable and effective medications for Australians. How the Government is killing people by denying them the medication they need.

Head over to change.org to sign my petition for a Royal Commission into the PBS. If you have your own story about being unable to afford medications, I’d really like to hear that too.

Got something on your mind? Go on then, engage. Submit your opinion piece, letter to the editor, or Quick Word now.