Lyme disease sufferer: 'I shouldn't have to beg for money to be treated'
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Chronic Lyme disease sufferers have paid up to €63 million in the last 12 years to be treated abroad.
Almost all were forced to take out hefty loans or to raise tens of thousands of euro through charity fundraisers to pay for treatment in countries such as Poland, the US and Germany.
This is because their condition is so chronic that the treatment available in Ireland doesn’t work and they have no choice but to go abroad for a specialist approach.
The HSE, however, won't pay for their treatment abroad unless the same service is available here but can't be provided because of long waiting lists or other issues.
Under schemes such as the Cross Border Directive (CBD), covering the treatment in other EU countries, people can pay for their operations, then claim it back from the HSE.
No such reimbursements are available for chronic sufferers of Lyme disease.
Sufferers have to, instead, find ways to raise between €20,000 and €50,000 to get alternative treatment to that offered by the HSE.
A secondary school teacher from Co Kerry is the latest to have to turn to GoFundMe to raise cash for treating her chronic Lyme disease.
Karin O’Shea, 26, from Kilgarvan, has had to quit her job, is practically bed-ridden and admits the disease - which is caused by bacteria spread through infected tick bites — is doing “everything but killing her".
Members of the public were so taken by her case they raised €68,813 for her in just three days.
But she told the that while she is “gobsmacked” and “overwhelmed” by people’s generosity, she said chronic sufferers like her should not have to — in effect — beg for money to be treated.
Ann Maher, who runs the Lyme Chat Éire community group on social media, agrees with the sentiment.
She said: “If there was a better early diagnosis, fewer people would end up with so many complications, and would not have to go abroad.
“The treatment the HSE currently offers does not work for everybody and the sooner they accept this and do something about this the better.”
It is not known exactly how many chronic sufferers there are but there are estimated to be around 5,000, from members of at least two organisations — Tick Talk Ireland and Lyme Chat Eire.
It is also estimated that the number of new cases in Ireland could be as high as 2,500 every year, although not all of them will end up as chronic sufferers.
Ms Maher, from Kilkenny, estimates that around 30% of Ireland’s chronic Lyme disease sufferers raise funds for treatment abroad.
And given the range of treatments, that means at least 1,262 have shelled out between €25.2 million and €63.1 million for treatment since 2009.