Time to Fund Fabry

We're launching a campaign to get treatment for Fabry Disease funded in NZ

Sun July 14th 2024

Fabry patients and their families have been waiting too long for treatment. It’s time to Fund Fabry.

An application to fund Replagal for Fabry disease was first made in 2009. It sits on Pharmac’s Options for Investment list alongside Migalastat (a Fabry treatment that works for some variants.) This makes it one of the longest applications for funding in Pharmac’s history, almost three times the average.

In Australia Replagal has been funded for the past 20 years. In fact, it’s funded in at least 50 countries worldwide, and not just in wealthy European countries or North America, but in South America, Asia, and Africa too.

While waiting for this treatment to be funded patients have either left the country - most commonly to Australia - or have passed-away. Our small Fabry community has been overlooked for too long. We intend to change this.

Background

We are living during a period of change and reform at Pharmac, which has recently received a funding boost. While Pharmac has not committed to funding rare disorder medicines, and even though experience would tell us that Replagal is probably low on the funding priority list, now seems like a good time to push for that to change.

What we’ll be doing

Over the next few weeks we will be undertaking a number of strategic steps including creating relationships with all of the major stakeholders, media, PHARMAC and ministers.

We’ll be using channels such as Patient Voice Aotearoa and Rare Disorders NZ to amplify our campaign.

For other rare disorders and patient groups, our fight is emblematic of the challenges facing many in our country regarding medicine access. It’s a small part of a much larger conversation about how we fund health, and how we provide equitable treatment to anyone needing care.

We will be making the case that treating Fabry patients matters.

What do we need?

• We need 1 or 2 people living with Fabry Disease to act as spokespeople for the campaign. What will this mean?
  • Collectively, and with help from some media contacts, clinicians and a designer, we’ll put together a comprehensive media kit. The colourful cards above are an example of this material (still being completed!)
    
  • This kit means you won’t need to memorise every fact and figure, and can instead talk about your experience, and what you’d like to see happen.
  • You might be interviewed by journalists - and you can always send them the media kit to answer any questions they have.
  • Your story may be shared in national media, or online, on radio, or TV. You’ll need to be comfortable with that and have some good support around you.
  • You may well end up speaking with David Seymour or other decision makers - and so need to be able to articulate the campaign clearly and strongly.
  • Interested? Contact us on fabrynewzealand@gmail.com
• We need personal stories from patients and families
  • These stories will go into the media kit
  • They’ll also go on the website
  • They provide crucial human context about the impact of this illness and why it should be treated.
  • More guidelines will be posted on our website.
• Once underway, we need you to share the campaign, articles, Facebook page, and website far and wide.
• We may also include a letter writing / MP visit campaign to bolster political support
• But we don’t need money. The Fabry Support Group is (right now) just an informal collection of people affected by this disease and has no formal structure - the website is donated, and we volunteer our time.

When is this happening?

Right now. The changes indicated by this government have shaken things up. We’ll be campaigning over the next 3 months (approximately) and will form a small volunteer team to make this happen. We’ll report back to the community via email, Facebook, and the website.