Catherine Murphy (Kildare North, Independent) | Oireachtas source

This legislation has two aims. The first is to change reference pricing. We all realise we adhere to a very narrow band and if we were to reference against the other 26 EU member states it would considerably reduce the cost of drugs. The second aim is to allow for a greater use of generic drugs instead of branded drugs. I take the point made that generic drugs would not exist if it was not for the development that goes into branded drugs in the first instance but this is protected by patents for a specific period of time to cover the development.

The object of the exercise should be to free up money which can be spent in the health service, particularly in delivering primary health care or front-line services. However, exceptions should be made for some areas such as anti-epileptic drugs. There can be a very fine balance for somebody with epilepsy in remaining free of seizures and to upset this could be very problematic. In 2010 we passed legislation relating to an EU directive on the length of time people must be seizure free before they are allowed to drive. Included in this legislation are rules and regulations on changing medication. If one goes off one's medication one must be instructed not to drive for perhaps six months. If one receives different medication it could produce breakthrough seizures where the previous medication used had been keeping someone free of seizures.

It is very important that an amendment is made to provide specifically for this. Often people do not return to a consultant or see a neurologist but instead they are maintained on their medication by their GP, who may not realise he or she cannot substitute. Failure to address this aspect could cause individual problems, and serious problems could also be caused for those using machinery, or people may have falls and present at accident and emergency departments.

The other point relates to those who are on drugs that suppress seizures. Sometimes these drugs can have other side effects where it is a matter of finding the right drug and finding the right balance. There might be a 10% tolerance in finding exactly the right balance and to upset that balance will be very problematic for potentially 40,000 people who are doing well. For example, the changes that occurred for those with epilepsy in the past 30 or 40 years have been immense. It has been a good news story for so many because it has given them back their independence. It has made them feel confident again because they can have some control over their lives. Often epilepsy takes away that control at key times in a person's life, for example, when one is a teenager and has so much else going on. Recently, I was dealing with somebody where a youngster got a poor leaving certificate because she had epilepsy in that year, was going into college, was maintained on the drug and was doing well. We will spend a great deal putting that youngster through college but one wants her to go through at the best of her ability, and it is important to have her epilepsy controlled.

I cannot stress enough the importance of there being provisions in the Bill that allow for specific conditions such as epilepsy - I am sure it is not the only one. Such conditions will be the exception. Generics can contain very much the same ingredients and work well with most conditions, but conditions such as epilepsy are different. There are other countries that make exceptions when using generic drugs. Denmark, Germany, Portugal, Spain, Sweden and Switzerland all exempt epilepsy. Where there has been good reason to deviate, it makes for good health policy to do that.

One of the most expensive elements of producing drugs, which we cannot address in this legislation but which might be something that we can advance at the European Union, is packaging and the various individual sets of instructions. Clearly, there are language difficulties in the European Union. Having said that, there are significant variations in the health regimes in the various EU countries. That is costing significantly more than it needs and it is something that should be picked up at some point through the appropriate Commissioner in the European Union. It is important to point out that the variations involve a needless cost. Then there are some countries, such as Ireland and the United Kingdom, which do not have a difficulty with language, yet something that is sold in Northern Ireland could not be sold over the counter here because it has an entirely different set of instructions. One might not be able to do it for all of the countries but one might be able to provide for elements of uniformity in countries that would be similar in terms of language. This would be another way of cutting costs.

One of the big savings that was hoped for this year in the health service that did not materialise was the reduction in the cost of drugs. Some of that was to do with the basket of countries against which we price ourselves. Clearly, this legislation will provide for that for next year. It is important that we are not wasteful. Invariably, when people who are abroad on holiday and become ill or suffer from asthma, they can buy drugs over the counter which are only available on prescription here, and the variation in price is astonishing. Not only will this potentially save the State a great deal of money but it will save individuals, who are just on the margins of availing of a medical card, a great deal also. It is really important that we ensure that people retain money in their pockets if at all possible, particularly at this difficult time.

I want to raise a matter that is on the fringe of this. There is a need to have a health system that is about health, not about illness. Until we have a decent primary health care system, we will not have that. There are patients turning up very late for diagnosis and if there was a decent primary health care system we would save money and keep people healthier. Too much of what has happened is the result of the notion of measuring health in terms of the number of patients who are no longer on hospital trolleys or who are able to get procedures in the acute system. It saves a great deal if conditions, such as diabetes, are diagnosed and treated much earlier. We cannot get to a point quick enough where there is a decent primary health care system because we all will benefit from that.

There have been newspaper reports of cancer patients having to pay for their medications. That is not new. I recall a family member having to do it five or six years ago, and it took me completely by surprise. It seemed to be one of the few situations where a person turns up in a crisis, as one does when one has been diagnosed with cancer and is possibly only over a major operation, and then goes on to chemotherapy only to be handed a bill of €56, €70 or whatever. In some cases, one would question whether the person has such sums in their pocket. It seems strange. In most circumstances, that would not apply. I have never understood why it applies in the case of cancer. However, it is not a particularly new departure. I would like to hear a response as to why it happens in the first instance.

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