What is the New Era of Care without access?

It’s day three of Migraine Awareness Month and I probably should have posted something before now, but I’m really struggling with the reality of migraine management at the moment. I don’t know what to say given I’m angry *at a theme*.

The theme being used by the US organisation in their Migraine and Headache Awareness Month (although there seems to be some disagreement on that this year, with some US orgs just doing Migraine Awareness Month like we do) is ‘New Era of Care’. And it absolutely is! If you’re in the United States, and if you actually have access to the new therapies.

There is absolutely no doubt that all the new CGRP medications are game changing for the management of migraine. It is a new era of care.

But what is a new era of care worth if people can’t access it?

I have offered my sympathies to many fellow warriors in the US when their insurers deny them access, or revoke their coverage for something that is working well, or demand that they try a different medication to the one that is working.

Last week I was effectively forced to change from Aimovig to Ajovy because Ajovy is currently available for free and expected to be listed on our PBS soon, and Aimovig is not. The neurologist I was seeing in the public system refused to do the paperwork of writing to Novartis to ask for compassionate access to Aimovig.

I am furious. I am heartbroken. I am genuinely scared about what happens to my health from here. Maybe Ajovy works, maybe it doesn’t. But going off Aimovig last time damn near broke me, so my anxiety is through the roof.

And it absolutely shouldn’t be like this.

I have said many, many times that sick people shouldn’t have to fight this hard for access to effective medical care.

The new era of care should not be only for those who can afford to pay for it.

Migraine Awareness Month is mostly outreach for people who haven’t yet started on the preventative medication merry-go-round, but it’s also an opportunity for us as patients to say ‘hey, can you listen to us please?’. We need to yell to all parts of the medical system, to every level of Government, to insurers whether they be private or public reimbursement systems, that denying us access to these medications is not an option.

That there is no point in having a new era of care if we can’t benefit from it.

Yell loud, warriors! They’re not going to give us anything without a fight.