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THE DEPARTMENT OF HEALTH has no plans to extend the list of conditions covered by the Long Term Illness Scheme, despite several chronic conditions not being included in the programme.
People who avail of the Long Term Illness Scheme can avail of drugs, medicines and medical and surgical appliances without charge. It was introduced in 1971, under the Health Act 1970 – arising from a non-statutory scheme established a few years earlier to supply free products to people being treated for diabetes.
The scheme is open to people suffering “a prescribed disease or disability of a permanent or long-term nature”, and recognises the following conditions:
However, the scheme has not be updated since 1975, a spokesperson for the Department told TheJournal.ie. Among the conditions not recognised are Crohn’s disease, Alzheimer’s disease, ulcerative colitis and coronary heart disease – all of which have seen notable rate increases in the past number of decades.
In 2009, a group of young people suffering from inflammatory bowel disease published a patient manifesto, calling for greater public awareness of their condition and demanding that it be included in the Long Term Illness scheme. Inflammatory bowel disease (IBD) includes conditions such as Crohn’s disease and ulcerative colitis – chronic auto-immune illnesses that affect an estimated 15,000 people in Ireland, and for which there is no known cause or cure.
Both Crohn’s disease and ulcerative colitis have similar symptoms, including abdominal pain, diarrhoea, fever, loss of appetite and weight loss. Suffers face the prospect of surgery or a life-long colostomy bag if their colon becomes too inflamed.
The manifesto demanded that IBD be recognised for the scheme in reflection of the fact that “both Crohn’s disease and ulcerative colitis are life-long conditions” and to “help relieve the financial burden on patients”.
Earlier this month, Minister for State Roisin Shorthall announced that the 56,000 people registered under of the scheme would be eligible for free GP care from March 2012, RTÉ reports.
A spokesperson for the Department said that, while there were no plans to extend the list of conditions recognised under the programme, the terms of the scheme “will be reviewed in the context of the Government’s proposals for Universal Health Insurance and free GP care at the point of delivery”.
He added the scheme “pre-dated universal coverage against excessive drug costs” and that it had been “set up to provide protection for conditions considered at that time to be likely to have excessive drug costs, as there was very little other State support or protection against excessive medical costs”.
Currently, the Drugs Payment Scheme is open to non-medical card holders: under this scheme, no individual or family unit pays more than €120 per calendar month towards the cost of approved prescribed medicines.
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They don’t recognise Alzheimer’s? That’s awful, not to mention the other cases not covered.. It’s difficult enough to lose a relative to Alzheimer’s, but to not be getting the support too..
Shame on them..
As Ronnie Neville below says, the last four paragraphs are key, in particular:
“Currently, the Drugs Payment Scheme is open to non-medical card holders: under this scheme, no individual or family unit pays more than €120 per calendar month towards the cost of approved prescribed medicines.”
The scheme was developed over 40 years ago, so obviously it needs updating. And despite everything that has happened in recent years, this has only emerged now so many people seem to have been managing to get by with the €120.
Regarding Alzheimer’s I would imagine most patients end up under State care anyway, so they come under other DoH schemes.
And another thought – given that around 1.7m citizens have medical cards, wouldn’t most a lot of Alzeimher’s patients be covered that way? #justasking
That is absolutely ridiculous. Everywhere else uses the WHO International Classification of Diseases as the basic reference template. It’s like they are sticking their fingers in their ears and humming like a little kid with the attitude ‘ if we pretend it doesn’t exist then we don’t have to do anything’. Hopefully this will be challenged at some stage in European Courts as a breach of human rights in some way.
Under which particular human right though? I hate this general phrase “it’s a breach of my human rights” that is bandied about today, and then when you ask “which human right?”, the individual has no idea. There’s no specific article on healthcare in the European Convention on Human Rights.
By the way, this isn’t directed at you Carr, it’s a general comment.
I agree Ryan….I don’t have a clue what laws it would come under…was only using Human Rights as an example. I just know it’s morally wrong. I have a chronic condition that costs me about €300 a month in treatment which I cover the costs for myself….I’m lucky at the moment that I am in secure employment but try not to think about what would happen and how I would cope if that situation changed.
As a patient of Crohn’s Disease, I urge all those people making little of the illness to look up various patient support websites and see just how horrific this illness can be. I was diagnosed 6 years ago. I lost three stone in weight and couldn’t get a forkful of food past my lips without running to the toilet to get sick. I was put on steroids which then nearly killed me and resulted in me spending a month in hospital. Over the course of two years, I tried an infusion which I needed to go in for every 2 weeks for the first 3 and every eight weeks for subsequent treatments. That didn’t work. I then had to inject myself every two weeks with an extremely strong medication that severely impacts the immune system, while on this I had too many chest infections to count. I also had to go on a 6 week tube feed where I could eat nil by mouth. Eventually I required surgery to remove one foot of my small intestine which put me into remission.
However, even though I’m in remission I have to take 12 tablets a day (including nutritional supplements as I’m no longer able to absorb vitamins and minerals due to the surgery), I have to go to the nurse (€15 per visit and €30 per blood test) to get B12 injections and also my bloods monitored for B12 levels. I have to maintain my health insurance policy because if I don’t I’ll end up having to sit a waiting period if I need it again in the future. I have to have a high protein diet (which everyone knows is the most expensive food group) again due to malabsorption leading to severe swelling of my ankles. I have to have iron infusions in hospital as taking it orally causes my Crohn’s to flare. My energy levels are so low that in order to follow the tax career that I want I have to get a city centre apartment close to work that costs me a fortune. That is just a snapshot of life with Crohn’s disease… at a recent Youth Day we held you could visibly see the impact this illness has on the body and also the mentality of young people.
While it is disappointing that Crohn’s Disease AND Ulcerative Colitis have not been included in this latest policy, I do welcome the possibility of a review. I would urge Roisin Shorthall to consider these conditions for future schemes and ask others with family and friends who suffer these conditions to write letters to Minister for Health James Reilly in support of these patients.
They don’t recognise Systemic Lupus Erythematosus either which is chronic and incurable and requires daily life-long medications. I tried to lobby the last Government on it and Mary Harney’s Personal Adviser told me it was because the Asthma Lobby was ‘blocking’ the entry of other conditions because Govt couldnt afford to include asthmatics and couldnt be seen to introduce other conditions ahead of that lobby. Pathetic excuse really
I usually refrain from commentating but this has riled me. Whilst myself and my partner work full time the cost of my Medical bills some years have meant we have had no quality of life.120 is a lot of money after you have paid mortgage, other domestic bills,health insurance and Gp visits. At one stage i was attending the Gp on a weekly basis which cost 200 per month on top of the Dps and Physio bills that i had to pay for privately because the public list meant i would be waiting too long. Regardless, I am one of the lucky ones. Thanks to understanding employers I have always managed to hold down a steady job and can just about afford to keep on top of a chronic illness. What about the people that are not so fortunate? All people with long term illnesses are asking is that we get the same benefits as others on the scheme. It’s the same old story of the people who genuinely could do with some help not getting it and those that know how to work the system getting everything. Aside from the money worries people forget that we have to live with an illness day in day out. it’s not easy; I invite those of you who are blessed with a clean bill of health to go spend a day with someone who is struggling with a chronic illness.
Another point to note is that this issue has not just “emerged recently”. Myself along with family, friends and members of support groups for various conditions have been asking different governments for change for years. Just because you haven’t read about it in the news before doesn’t mean it’s an issue that has only recently emerged.
120 euro a month is a lot of money for a family to pay out if someone is on regular medications. This is 1460 euro a year.
True, it’s a lot of money. Food, shelter and clothing cost a lot of money too – so let’s not expect anyone to pay for them.
I hope you never acquire a chronic desease not on the list. Food shelter and clothing are basic universal requirements provided for by salary, wages or benefits. Minimum wage levels are designed to ensure that we have a minimum resource to meet these needs. A chronic desease like crohns will cost the patient a minimum of €1540 in Medicine and a minimum of 2 GP visits. These costs are uninsurable and are unique to the patient.
Medical costs in this country are amongst the highest in Europe. Government policy of genuflecting to the Pharmacutical industry and their inabiliy to put manners on pharmacies is the cause. Hence the need to provide some relief to these costs.
Or €27.69 a week. Out of a Disability Allowance of €188. Before paying for housing,food, clothes, heat, etc.
Ronnie.
Between prescriptions, GP’s and hospital stays, I pay over €3,000 per year from my after tax earnings. I have a family with 2 kids.
I didn’t ask for this illness, but I, and my wife and kids, are punished because I have it. My meds aren’t some kind of extravagance. I don’t have a choice.
I pay my Tax, just like you, but the majority of taxpayers don’t have this extra levy put on them each year.
I’m used to paying this, I’ve paid it all my working life of 20 years. I budget for it, that doesn’t stop me from being about it at times.
By the way, that €3,000, is for me only. I have a 5yo and 2yo that have their own medical problems.
Should I pay something? Yes.
But their should be help along the way for those of us with long term (chronic) illness.
I have Crohn’s by the way. I’m ever so lucky to have had an ostomy. If I decide not to bother paying and collecting my prescription appliances, I, and everyone around me, would be in a world of Sh1t.
Literally.
Danny, not sure of your income, but have you ever applied for a medical card? Even if you’re working, high medical and drug costs, doctor visits etc can be taken into account. Also your mortgage/ rent and childcare costs are offset against your income for the assessment. Can’t do any harm to try?
Fidelma,
I have tried, but was refused.
My income has gone down quite a bit recently, so I will be applying again.
Danny, medical bills are tax deductible (med 1), so to say that 3,000 p.a comes from your after-tax earnings is a little misleading.
Bear in mind cancer isn’t even on this list, I know of cancer patients who have applied for a medical card and died waiting for a reply. I think it’s fair to say nobody would object to people with a serious medical condition getting help, clearly if you’re unemployed then you have no income so, regardless of how you became unemployed, a medical card is provided. We know Drug companies charge a lot more here and the UK than they do for the same items in other countries, when challenged the come up with some great excuses but if it can be done abroad then it SHOULD be done here. This would save a considerable amount. I listened to an article on the radio during the week where several people who were entitled to a medical card applied months ago and still haven’t got a reply, the Department deny there’s a backlog or a problem when obviously there is, one woman was threatened by an official that if she didn’t stop calling they’d cancel her husbands card.
We have to realise this government will now tax anything, including the sick, and be prepared to see all these charges increase, the €20 per month on the Drugs Payment Scheme the many families can barely afford now will increase. Perscription charges for medical card holders, who have been means tested and found cannot pay, will now have to pay up to €40 per month, this may not sound much when you have it but can be a shopping basket to someone on the dole. I’m fed up listen to Enda saying he hasn’t signed off on this budget yet, he’s been told where to sign and what to do. He’ll sign… us into oblivion.
Blood cancer is on the list (acute leukemia). We were in the process of applying for this when my husband died from it.
I’m very sorry to hear about your husband Elana. You’re right about acute luekemia but this is just one of the many forms of cancer and unfortunately you’ve confirmed what I already said, people die while waiting for a reply. This is disgusting. People with a serious or terminal illness shouldn’t have to wait for a penpusher to tick a box somewhere, you can’t help but get the impression that there’s a deliberate delay so that the applicant dies by the time approval is given, thus saving some Department’s budget another few bob, or am I just a tad cynical?
How in gods name can the model in the picture be posing as ‘a young boy with Crohns ?’
I think the fact that he is skin and bones is the giveaway.
Are you an expert in diagnosing the effects of Crohn’s by photography? When can I get a consultation? :-)
What an absolutely ridiculous statement… if you were ever saw how ill and weak people become with Crohn’s disease (like I did) you wouldn’t even contemplate saying something so stupid.
The fact that people who qualify for free medication under the long term illness list do NOT have to be means tested and now will receive free G.P.care from March 2012 is adding insult to injury for those with Crohn’s disease
or Ulcerative colitis.
Shame on you Minister.
Read the last four paragraphs before getting too hysterical about this.
That should read €120 per month on the Drugs Payment Scheme, sorry. I wish there was an “edit” function so we could fix mistakes on posts. Just an idea editor.
Sorry bad sums 1440!
We’re sill recovering from the costs of my cancer, thankfully the drugs came under the drug treatment fund or we would have been broken, then my husband developed psoriatic arthritis, it took us four years to get a diagnosis, some of his joints are permanently damaged from a doctors refusal to send him to a specialist. If he doesn’t get the drug that’s worth about 14,000 per year, he will start to seize up, his joints become painful and swell. We’re coping at the moment but a bit of extra assistance would help a lot. His specialist even suggested increasing the interval, he’s now at the limit of what he can leave the drug, he’s not eligible but giving up the drug would make him permanently disabled and force him to retire on medical grounds. As we are we’re coping but we’re caught in a bind. We have to keep trying to afford it but it can be hard some months.
And now I’m on high blood pressure tablets, we now have to pay something every month, when we were starting to be able to skip a month of payment every 3-4 months. The fact that one of the cancer drugs can do heart damage isn’t taken into account. I also had to make a choice between getting an accurate diagnosis of Coeliac Disease and being ill continuously.
Thankfully I’ve been clear for almost 10 years now. I can only hope this continues.
Peter – I accept much of what you say – and, as the article points out (3rd last para), there is commitment from Government to tackle precisely the issues of drug and GP costs in a comprehensive way. Let them get on with it and spare me the righteous indignation because they’re declining to tinker with an outmoded scheme.
Danny, I sympathise with your position, and can see where you are coming from. Nevertheless I stand over my core point that the Government is moving in the right direction in terms of its overall health policy and needs to be encouraged to get in with it – not pilloried for declining to tinker with an outdated scheme.
I have RA for the last 9 years and for the rest of my life. Thankfully my employer pays for my health insurance as my medical bills are €2500 every month plus €70 for meds. If I lost my job, i lose my insurance, the gov won’t pay for this expensive treatment on the medical card so I wouldn’t be able to work or pay taxes.
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