Tearing down the system

I don’t think I have ever agonised over two words as I did when putting ‘Royal Commission’ into the conclusion of a recent submission for Migraine Australia to a parliamentary inquiry into how new drugs come to market in Australia. But the simple fact is there is something very, very wrong with the PBS, and we shouldn’t have to fight this hard.

Royal Commissions are very serious things. They’re big, expensive, legal processes. They have more power than a normal judge, and once started, the Government can’t stop them. To date, we have only requested and lobbied for a parliamentary inquiry – which are tiny in comparison, are simply a formal way of informing the parliament about an issue, and the standing committee is going to be inquiring about something… so it has effectively no cost.

We still want a parliamentary inquiry into migraine. The suggestion that a royal commission might be required is not about migraine, it’s about our pharmaceutical system. From the drug companies that are (in my view, unfairly) demonised, the TGA that regulates the medications, the PBAC who decides what drugs go on the PBS, to the Department of Health who negotiates the details and manages the PBS listings, to the role of the minister and cabinet, and the dispensing arrangements through pharmacies… there are issues at many different parts of the process.

And that’s what Royal Commissions are good at. Working their way through very complex issues with multiple problems, sorting it all out and making recommendations for reform.

It’s now over 16 months since Emgality was recommended to be on the PBS, and nearly a year since the Ajovy deferral that was BS, with the recommendation in March seemingly made without any substantive new information… just a stalling tactic. The free trials of Emgality were ended last week. We’re hearing whispers today that Ajovy is ending the Patient Familiarisation Program next month (merry Christmas). Those of us who had great success on Aimovig are still in mourning, or are doing all kinds of things to pay for it.

We. shouldn’t. have. to. fight. this. hard.

And by the looks, we’re going to have to fight harder. We are going to have to tear down the system.

To invoke one of my heroes, Mario Savio, there comes a time when you simply can’t take part, and you have to put your body on the gears to stop the machine.

The sheer scale of what we need to do to raise awareness of migraine, to fight for our right to affordable treatment, like any other citizen, is daunting. It’s the enormity of it that makes me tear up when I go to bed each night, because I don’t know if it is a fight that can be won, but I know that is a fight we *must* win.

We have to stop the machine that is the myth of the PBS, with its false promises of affordable medications for all, and the podium announcements of how good is the PBS. We have to blow that myth right up.

We have to refuse to be discarded as ‘just a headache’. We have to reject any suggestion that migraine is not worthy of taxpayer money. We need to hold those people – elected and unelected people – who are preventing us from being free to live our lives and effectively manage our migraine to account.

Stay true my fellow migraine warriors, let’s stick together, let’s keep fighting. There are enough of us to stop the whole damn world if need be.