We've got the brains & pharmaceutical industry but people suffering ‘rare' diseases are losing years of their lives
AN estimated 300,000 people are living with rare diseases in Ireland.
These conditions — of which there are up to 8,000 — have wide-ranging impacts on both the individuals affected and their
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There are 300,000 people living with rare diseases in Ireland
Credit: Getty Images - Getty
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Cllr. Padraig O'Sullivan spoke about the impacts on patients
For many patients, the journey to
The emotional, physical, and
A new rare disease plan is being developed by
New research this week has also found that improved access to psychological supports is 'urgently required' to address the
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Writing in the Irish Sun on Sunday today, Fianna Fail TD for Cork North-Central PADRAIG O'SULLIVAN says 'rare diseases' are in fact not rare at all.
IMAGINE needing a life-changing treatment that exists, but being told you'll have to wait 877 days to get it.
That's almost two and a half years. That's not a worst-case scenario, it's the current average wait time in Ireland for accessing treatments for rare diseases.
We need to be honest, rare diseases aren't actually rare. In Ireland, 1 in 17 people live with one. That's over 300,000 people —
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Most read in The Irish Sun
This is not some distant issue affecting a handful of patients in specialist clinics.
This is happening in towns,
Most of us know someone, whether we realise it or not, who is impacted.
These conditions are often progressive and debilitating. People lose mobility, cognitive function and independence. Not overnight, but day by day.
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The longer treatment is delayed, the more irreversible the damage becomes.
AMONG SLOWEST COUNTRIES IN EUROPE
But here's what's really frustrating: the treatments are already out there. These are drugs that have passed EU-wide safety checks and are already in use across
And here's the real kicker — a lot of these delays are completely avoidable.
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Our current system treats drugs for rare diseases, often called 'orphan drugs', the same way it treats medicine for common illnesses.
That might sound fair, but it doesn't work.
These drugs are usually more expensive and have less data behind them, simply because there are fewer people with these conditions.
That doesn't make them less effective, it just means our approval process isn't built to handle them.
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EVERY DELAY MAKES SITUATION WORSE
It's outdated, too slow, and completely out of step with the rest of Europe.
This isn't just frustrating, it's dangerous. These aren't conditions you can afford to sit on. Every delay makes the situation worse.
And in a lot of cases, we're talking about young people whose lives could be drastically improved if they just got access to treatment sooner.
Other EU countries, including our
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I've spoken to families who have spent years fighting for medication that's already available elsewhere.
I've heard from young adults trying to hang onto their independence while their condition slowly chips away at their strength. And I've seen parents worn out by a system that seems more focused on paperwork than on people.
It's heartbreaking. And it's entirely preventable.
WE NEED SMARTER SYSTEM
That's why, with the support of my
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It will create a separate track to assess treatments for rare diseases, one that recognises the urgency and the reality of these conditions.
It doesn't mean lowering standards. It doesn't mean spending more money. It just means creating a fairer, faster system that actually works.
Right now, we're measuring everything by the same yardstick, whether a drug is for a common cold or a life-limiting genetic condition. That's not good enough.
We've got the brains. We've got the pharmaceutical industry, many of these drugs are actually made here in Ireland. We export them all over the world.
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And yet, people here can't get their hands on them. That's madness.
We need a smarter, more responsive system. One that says: if a treatment is already being used safely across Europe, why are we still making people in Ireland wait three times longer to access it?
FIX THE PROCESS
This Bill will cut through the red tape. It will make it easier to assess rare disease treatments based on what really matters — their potential to help people.
And let's be clear, we're not asking for a blank cheque. We're not even asking for new funding.
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Just a bit of common sense. A better process. A way forward that puts people ahead of paperwork.
Because right now, people are losing years of their lives while we 'wait and see.'
Rare diseases might be individually uncommon. But together, they affect a huge number of people across Ireland.
Let's fix the process. Let's stop the delays.
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Let's make sure no one in Ireland is left waiting for treatment that's already within reach.
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A new rare disease plan is being developed by Government to identify and address gaps in services
Credit: Getty Images - Getty
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