Parliamentary LD questions and answers in Europe

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
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Yvonne
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Parliamentary LD questions and answers in Europe

Post by Yvonne » Thu 19 Aug 2010 10:29

http://www.europarl.europa.eu/sides/get ... anguage=EN


Question
Lyme-Borreliosis is an infectious disease caused by bacteria which can attack organs, the nervous system, joints and tissue. The bacteria are transmitted primarily by ticks belonging to the genus Ixodes.

The European Union's Orphanet database lists Lyme-Borreliosis as a rare disease, for which no statistics are given. In the European Union, diseases are generally classified as rare if fewer than 5 people in 10 000 are affected.

Current statistics held by the German statutory health insurance funds AOK, Barmer, DAK and Techniker Krankenkasse, which provide cover for 45.1 million policy-holders — more than half the citizens of Germany — indicate that on average 0.4 % of their policy-holders are infected. That would mean that, in Germany's population of 82 million people, at least 326 680 cases occurred in 2008, as unambiguously diagnosed in the light of a migrating skin rash. As, however, only half of all infections involve a migrating skin rash, Borreliosis infection may be assumed to be twice as prevalent.

The National Borreliosis Reference Centre in Oberschleißheim has admitted for years that 10 % of all Borreliosis cases are no longer curable, so that patients remain chronically ill. The German medical association for Borreliosis, Deutsche Borreliose-Gesellschaft e.V., assumes that more than a million people in Germany are chronic Borreliosis sufferers, many of whom do not even know what condition they are suffering from and are not undergoing therapy. The corresponding figures in many other EU Member States are similar.

Why is the infectious disease Lyme-Borreliosis still officially classified as a rare disease, thus playing down its importance, despite the fact that current figures show this to be incorrect?

Is there any prospect that the classification of Lyme-Borreliosis may be corrected and that the disease may in future be classified as a ‘chronic disease’, so that more public funding would be provided to tackle it?

Answer
Answer given by Ms Vassiliou on behalf of the Commission
The Commission is aware of the importance of Lyme-Borreliosis. As the Honourable Member says, it is currently classed as a rare disease. Rare diseases are life-threatening or chronically debilitating diseases which are of low prevalence. As a guide, the Commission uses a prevalence of less than five per 10 000 persons in Europe to describe diseases with a low prevalence. Lyme-Borreliosis, a bacterial infection caused by Borrelia burgdorferi, has an estimated incidence of 1-70/20 000 in Europe. Like other diseases, the incidence varies substantially across Europe, and is higher in the regions with the highest infection rates in ticks, the disease vector. Although the geographical distribution has been increasing, higher incidence has traditionally been reported in Central Europe. The latest available figures indicated an incidence of 4.1 for the EU‑27 in 2005 (ranging from 206 cases per 100 000 inhabitants in Slovenia to four cases in the whole of Italy). The latest available figure for Germany (1999) was 1.7/100 000.

In relation to Lyme-Borreliosis being classified as a chronic disease, the term ‘chronic’ has been applied to different groups of patients. One usage refers to people with the symptoms of untreated and disseminated late-stage Lyme disease (manifestations developing months or even years after the tick bite can include joint, neurological and cutaneous manifestations: chronic Lyme arthritis, lymphocythoma, acrodermatitis chronica atrophicans, encephalomyelitis or chronic neuroborreliosis). The term has also been applied to people who had the disease in the past and some symptoms remained after treatment (fatigue, sleep disturbance and cognitive difficulties). The cause of these symptoms and the definition of appropriate treatment are disputed. A third and also controversial use of the term applies to patients with non-specific symptoms who show no evidence that they have been infected with Lyme disease. Thus, the characterisation of Lyme disease as chronic remains a matter of debate within the scientific community.

Taking into account the available evidence and consensus, the EC lists Lyme-Borreliosis as a rare disease. The related advice from the European Centre for Disease Prevention and Control (ECDC) for prevention of disease includes fighting the vector, taking protective measures against tick bites when visiting at-risk zones and rapid removal of ticks if bitten.
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Question
The incidence of Lyme disease in the EU’s population is growing steadily. At present, Lyme disease is not notifiable in many EU Member States, meaning that diagnosis of the disease can be a prolonged process.

Is the Commission aware of this problem? Does the Commission recognise the benefits of notifiable diseases? Furthermore, would the Commission consider it beneficial for Lyme disease to be classed as a notifiable disease?

Answer
Answer given by Ms Vassiliou on behalf of the Commission
Lyme-Borreliose, a bacterial infection caused by Borrelia burgdorferi, has an estimated incidence of 1‑70/20 000 in Europe. Like other diseases, the incidence varies substantially across Europe, and is higher in the regions with the highest infection rates in ticks which are the disease vector. Although the geographical distribution has been increasing, higher incidence has traditionally been reported in Central Europe. The latest available figures indicate an incidence of 4.1 for the EU27 in 2005 (ranging from 206 cases per 100 000 inhabitants in Slovenia to 4 cases in Italy). The latest available figure for Germany (1999) was 1,7/100 000.

The epidemiological surveillance of communicable diseases in the EU is regulated by Commission Decision 2119/98/EC(1) and by its implementing acts and by Regulation (EC) No 851/2004 of Parliament and of the Council of 21 April 2004 establishing a European Centre for disease prevention and control (ECDC)(2). In the specific case of Lyme disease, legal provisions come under Commission Decision 2000/96/EC(3) amended by Commission Decision 2007/875/EC(4). Under these legal provisions vector borne diseases, including Lyme disease, should be covered by the Network of surveillance at Community level, and criteria for surveillance and any relevant information should be circulated among the members of the Community Network.

The European Centre for Disease Control (ECDC) is currently reviewing the process of reporting of vector borne diseases, including Lyme disease, in order to identify how to improve the reporting of this disease in the European Union.

Finally the Commission considers sound epidemiological information on the spread of Lyme disease in the EU particularly important, considering also the potential association of Lyme disease to climate change.
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Question
Subject: Tick-borne diseases: mandatory notification and uniform standards within the EU Answer(s)

The incidence of tick-borne diseases in Europe has been rising constantly in recent years as a result of global warming. Borreliosis and ehrlichiosis differ from tick-borne encephalitis (TBE) in that there is as yet no Europe-wide requirement to notify their occurrence. There are likewise no uniform laboratory standards for diagnosis and no common guidelines for treatment. As a result, the many and varied symptoms of Lyme disease often go unnoticed, and the condition drags on, entailing serious consequences for patients and high costs to health services. Some sufferers are for years mistakenly treated as if they had multiple sclerosis or a mental illness.

Does the Commission agree that it would be desirable to establish standard Europe-wide testing and treatment procedures for tick-borne diseases? What steps will it take to improve the diagnosis and treatment of these diseases?
Answer
Answer given by Mr Dalli on behalf of the Commission
The Commission is well aware of the epidemiology of tick-borne diseases and of the potential risks they pose to human health. The European Centre for Disease Prevention and Control is monitoring the epidemiological situation of tick-borne diseases in the Union such as lyme disease, tick-borne encephalitis, Congo-Crimean hemorrhagic fever, tick-borne relapsing fever and tularaemia.(1)

However, the distribution of such diseases varies widely from one Member State to another, from total absence to presence at an important level. These significant differences are linked to biological and ecological factors.

EU legislation on surveillance and control of communicable diseases obliges the Member States to establish surveillance systems to cover tick borne diseases(2) and to inform the Commission and the other Member States in case of any outbreak of communicable diseases, including those caused by micro-organisms transmitted by ticks(3).

To further strengthen the surveillance and reporting of tick-borne diseases, the Commission is planning to propose identifying standards and criteria to define the most important diseases(4), including Lyme disease.
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Question
Lyme borreliosis (LB) is the most commonly reported tick-borne infection in Europe and North America. The disease is a multi-system disorder which can affect a complex range of tissues including the skin, heart, nervous system, and to a lesser extent the eyes, kidneys and liver. The illness is caused by a spirochaete (spiral-shaped bacteria), which is transmitted during the blood feeding of ticks of the genus Ixodes.

It is now known that LB occurs as a significant disease in thousands of European patients every year.

Can the Commission please advise of any current or planned EU community strategy with respect to LB or other tick-borne infections, including but not limited to sharing of best practice and policy, awareness raising, tick protection/prevention and encouraging early detection?

(Data from EUCALB — European Union Concerted Action on Lyme Borreliosis)

Answer
Answer given by Mr Dalli on behalf of the Commission
The Commission is aware of the epidemiology of tick-borne diseases such as Lyme disease and of the potential risks they pose to human health.

In cooperation with the Commission, the European Centre for Disease Prevention and Control prioritised in its 2010 Work Programme tick-borne diseases under the activities related to emerging and vector-born diseases. With a main focus on tick-borne encephalitis and Lyme disease, the objectives of these actions will notably be to raise clinical awareness and develop a surveillance strategy. In addition, the European Centre for Disease Prevention and Control is monitoring the epidemiological situation of tick-borne diseases in the Union.

The EU legislation on surveillance and control of communicable diseases also obliges the Member States to establish surveillance systems to cover tick borne diseases such as Lyme disease(1). As part of this legal requirement, the Member States should notably communicate and share any information (appearance or resurgence of cases, progression of the epidemiological situation, information concerning existing and proposed mechanisms and procedures for prevention and control, etc.) related to outbreaks of communicable diseases, including those caused by micro-organisms transmitted by ticks
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Question
Directive 2003/99/EC(1) on the monitoring of zoonoses and zoonotic agents aims to ensure that zoonoses, zoonotic agents and related antimicrobial resistance are properly monitored, and that food-borne outbreaks receive proper epidemiological investigation. The directive also aims to enable the collection in the Community of the information necessary to evaluate relevant trends and sources.

Given that diseases such as borreliosis (Lyme disease) are still prevalent, possibly becoming even more widespread in Europe, does the Commission take the view that this directive is being properly implemented at national level, especially in terms of the collection of information on zoonotic agents? Could the Commission provide an update on the fight against zoonoses and zoonotic agents and any forthcoming developments in this area?
Answer
Answer given by Mr Dalli on behalf of the Commission
National competent authorities submit annual zoonoses reports in accordance with their obligations in terms of Directive 2003/99/EC(1). Borreliosis (Lyme disease) is a zoonotic disease listed in point B of Annex I to this directive. Member States are obliged to report on this disease according to the epidemiological situation in the country.

Other relevant EU legislation on surveillance and control of communicable diseases(2) obliges the Member States to establish surveillance systems to cover tick borne diseases in humans. They report to and inform the Commission and the other Member States through the early warning and response system (EWRS)(3) in case of any outbreak of communicable diseases, including those caused by micro-organisms transmitted by ticks.

To further strengthen the surveillance and reporting of tick-borne diseases, the Commission is preparing the amending of the list of communicable diseases for epidemiological surveillance and will propose identifying standards and criteria to define the most important diseases, including Lyme disease.

A call for tender on the ‘Epidemiologic situation analysis of Lyme borreliosis in the European Union’ has been launched by the European Centre for Disease Prevention and Control (ECDC). ECDC is also funding a network of medical entomologists and public health experts (‘Vbornet project’) to facilitate arthropod vector surveillance within the European Union and consequently to improve preparedness towards vector-borne diseases.
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X-member
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Re: Parliamentary LD questions and answers in Europe

Post by X-member » Thu 19 Aug 2010 14:42

I quote:
In relation to Lyme-Borreliosis being classified as a chronic disease, the term ‘chronic’ has been applied to different groups of patients. One usage refers to people with the symptoms of untreated and disseminated late-stage Lyme disease (manifestations developing months or even years after the tick bite can include joint, neurological and cutaneous manifestations: chronic Lyme arthritis, lymphocythoma, acrodermatitis chronica atrophicans, encephalomyelitis or chronic neuroborreliosis). The term has also been applied to people who had the disease in the past and some symptoms remained after treatment (fatigue, sleep disturbance and cognitive difficulties). The cause of these symptoms and the definition of appropriate treatment are disputed. A third and also controversial use of the term applies to patients with non-specific symptoms who show no evidence that they have been infected with Lyme disease. Thus, the characterisation of Lyme disease as chronic remains a matter of debate within the scientific community.
This make me soo tired, because the medical term chronic (in chronic Lyme) stands for "of long duration", and then they should only talk about cases with long duration Lyme, when they talk about chronic Lyme.

But they also talk about (probably early) cases that have "rest-symptoms" and people that maybe don't suffer from Lyme.

They have to separate the cases that really suffer from chronic (still not cured) Lyme from all the other cases, otherwise they will never understand this!

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