Yeah, nah, I meant it.

Last week I addressed the Standing Committee on Health’s inquiry into how new drugs come to Australia. I told them that the PBAC and related committees that decide which drugs, devices and procedures should be subsidised under our universal health care scheme should be fired.

I meant it.

Here’s exactly what I said in my opening statement, as per the Hansard (I didn’t have prepared notes).

Dr Crosby: Thank you very much for holding this inquiry and for having me along again. It’s good to see you all. I appreciate the extra time that you have given us this morning. I appreciate that migraine does not sit well with all of the other diseases that you have heard from. Most of the arguments in the submissions made to this inquiry have been talking about rare drugs, rare conditions, orphan drugs and the need for personalised treatment and support for those personalised treatments. Migraine is still back at big superdrugs and huge patient numbers. There are 4.9 million Australians who are living with migraine. 

Let me give you some more big, scary numbers. There are 400,000 people who would be eligible for Emgality, which, thank you very much, will finally be listed on 1 June. It will be 692 days from the time that it was recommended by the PBAC to the time that it is actually available. That is two years. In that time, there is two years of lived disability by those 400,000. Even if you take out the 30 per cent or so that won’t do well on these drugs or won’t try these drugs, that’s still half a million years of lived disability caused by the dysfunction of this system. 

This system is dysfunctional. It is broken beyond repair.

When we wrote this submission to you last October, we thought that maybe, possibly, a royal commission would be the best way to get into the dark, deep corners of what the hell is going wrong in this system. My position since then has hardened, in part because we’re starting to figure out who the most evil and dishonest broker in the entire system is. And it’s not the PBAC, as much as we have plenty of criticism because of the way they do things. And it’s not the minister’s office, and I’m sure he’ll be pleased to hear that, because I have plenty of criticisms of him as well. It’s actually the department itself. When it’s the department, that gets into a difficult area, because you can’t ask the department to investigate itself. 

One of the reasons why I’m pretty sure it’s the department is that the department has this arrogance and entitlement that you normally only find when you’re dealing with people who have been getting away with corruption for a really long time. It is the kind of attitude that you see in a local government… five seconds before they get fired by the state government. That’s why we think a royal commission would possibly be the best option to get into all of those deep, dark corners, find out what’s going wrong and fix it. 

But something that Chris Bowen said has stuck with me, and that is that if you were going to design a new system that actually worked, you wouldn’t start from here. I’m going to go one step further today and say, ‘Don’t start from here.’ Just fire the lot of them. Get rid of the entire PBAC and MSAC and all of the other committees. Replace them with an administrator, in exactly the same way you would if you were firing a local council. Give them a straight-up job. Get the pipeline moving. Get the new drugs through. Get them to the people that need them.

Absolutely, negotiate hard on price. We don’t want pharma to make lots of money out of the government just because we want our drugs now. Get a fair price. We’re taxpayers too. But the system needs to get moving. We now have big problems because the first three CGRPs were treated so badly by the system, the next six drugs possibly won’t even come to Australia. Vyepti, which is the fourth CGRP monoclonal antibody, is about to be approved by the TGA. We’ve got no idea how that will be handled. There is another device, called gammaCore, which was approved by the TGA in March, and it literally does not have a pathway through the program to reimbursement, because it’s a device that’s prescribed like a drug, and the system literally can’t deal with that.

So we need to fix the system. I don’t think it can be fixed from here. That’s why I’m suggesting that perhaps more drastic options may be the best way forward. 

Opening statement to the Standing Committee on Health, Aged Care and Sport, Inquiry into approval processes for new drugs and novel medical technologies in Australia, Brisbane, 17 May 2021.

As it so happened, I was amazingly ill that day. And I will forever be amazed at the gift I have been given, whether god-given or from my background in radio, that when the mic goes on I just sound so together and coherant… while my brain is checking out and my body in a panic. I do simplify my language, and the aphasia/dysphasia is always lurking so I tend to default to simple words. As I said on LinkedIn the day after, I didn’t mean to say evil, I mean to say inconsiderate but my brain went ‘nope, too many syllables’ and I said evil.

Perhaps my semi-conscious brain is a bit more direct.

For my troubles, I got a lot of ableism from the industry press. (No one cares about this inquiry outside of Pharma press, despite my insisting loudly and often that this important part of our universal health care system being dysfunctional means universal healthcare in this country is a myth and all Australians should be deeply concerned about it. If for no other reason than the relationship between the department and pharma companies ranges from wary to toxic… so you shouldn’t be surprised there’s been a few bumps in accessing COVID-19 vaccines!) Pharma in Focus even called me ungrateful… apparently I should have spent my time going to to talk to politicians to grovel in appreciation that they only took two years to list only one of three drugs (and not the drug I’m on) on the PBS?

I just got home from hospital this morning after another severe brainstem/hemi combo attack – same as I had last week while fronting the committee. It’s the 4th of these crazy intense attacks restarting on Aimovig in March. Stopping Aimovig was hands down the stupidest thing I have ever done, and I have done some stupid things. I’m ok with 6 months or so to get back to good, but I am really struggling with the cost and have some other health issues demanding my funds, so I was stretching it to 140mg every 6 weeks weeks rather than 4, and it clearly is not a good idea.

My trip to hospital was not a pleasant one. I had a neuro appointment scheduled, and I’ve been waiting 5 months for that, so I managed to convince the ED staff to let me go to that. Instead of getting the request for compassionate access for Aimovig that I have been waiting since January to ask for (apparently only a neuro can request it), I got a script for Ajovy. I don’t want Ajovy, I want Aimovig. I don’t want Emgality either, which I tried to push on me, I want Aimovig. It has nothing to do with brand marketing or any big pharma blah blah anyone wants to spout off with – Aimovig is a different drug. It works differently. And it works really well for me,I just can’t afford it.

But no, why listen to the bloody patient.

And that’s why they all need to be fired. Not just because they have utterly screwed us on Aimovig, but because the entire system is built around bureaucracy rather than being built to serve the people it exists for. Mates put mates on committees and pay them six figure salaries to sit around pontificating and playing games with the lives of people who have no say in what happens. I’m not the only patient advocate saying patients need to be at the table – we are fairly unified on that front – I am the only one (so far) saying chuck out the table and build a new one, this one’s broken.

And I’m not going to apologise for it.