DRAFT MOTION FOR A RESOLUTION

further to Question for Oral Answer B8-0000/2018 pursuant to Rule 128(5) of the Rules of Procedure on Lyme Disease (Borreliosis) (2018/0000(RSP))

Alojz Peterle
Daciana Octavia Sârbu
Jadwiga Wiśniewska
Frédérique Ries
Merja Kyllönen
Michèle Rivasi
Mireille D’Ornano
Sylvie Goddyn

on behalf of the Committee on the Environment, Public Health and Food Safety B8-0000/2018

European Parliament resolution on Lyme Disease (Borreliosis) (2018/0000(RSP))

The European Parliament,

– having regard to the question to the Commission on Lyme Disease (Borreliosis) (O-000000/2018 – B8-0000/2018),

– having regard to the motion for a resolution of the Committee on the Environment, Public Health and Food Safety,

– having regard to Rules 128(5) and 123(2) of its Rules of Procedure,

– having regard to the report related to the systematic literature review on the diagnostic accuracy of serological tests for Lyme borreliosis of the European Centre for Disease Prevention and Control,

– having regard to the Expert Network consultation meeting on Lyme borreliosis surveillance in the European Union, in January 2016 in Stockholm,

– having regard the Decision No 2119/98/EC of the European Parliament and of the Council of 24 September 1998 setting up a network for the epidemiological surveillance and control of communicable diseases in the Community,

Amendment

Mireille D’Ornano
– having regard to Article 168(7) of the Treaty on the Functioning of the European Union, under which responsibility for the organisation and delivery of health services and medical care lies with the Member States;

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A. whereas the right to health is a fundamental right recognised by the European Treaties, in particular in its Article 168;

Amendments

Claudiu Ciprian Tănăsescu
Aa. whereas Lyme disease (Borreliosis) is an infectious disease in humans and in various species of domestic and wild animals transmitted by ticks;

Mireille D’Ornano
Aa. whereas the training of general practitioners in particular falls within the competence of the Member States;

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B whereas Lyme disease, or Lyme borreliosis, is a bacterial disease caused by the bacterium Borrelia burgdorferi, and is transmitted to humans by the vector of a tick bite, itself contaminated by the bacterium;

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C. whereas Lyme borreoliosis is the most common zoonotic disease in Europe with 650 – 850.000 estimated cases with a higher incidence in Central Europe;

Amendment

Urszula Krupa
C. whereas Lyme borreoliosis is the most common zoonotic disease in Europe with 650-850.000 estimated cases with a higher incidence in Central Europe; whereas infection occurs in the spring-summer semester (IV-X), and borreoliosis is recognised in those countries as an occupational disease for farmers, forestry workers and field researchers;

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D. whereas infected ticks and the disease seem to be expanding geographically, also in higher altitudes and latitudes; suspected to be caused by, among other things, changes in land use, climate change, and other activities related to human behaviour;

Amendments

Urszula Krupa
D. whereas infected ticks and the disease seem to be expanding geographically, also in higher altitudes and latitudes, as well as in towns and cities; whereas this is suspected to be caused by, among other things, changes in land use, inter alia through the afforestation of land of the lowest quality or through the expansion of invasive plants, climate change, and other activities related to human behaviour;

Sylvie Goddyn, Joëlle Mélin
D. whereas infected ticks and the disease seem to be expanding geographically, also in higher altitudes and latitudes; suspected to be caused by, among other things, changes in land use, climate change, and other activities related to human behaviour, in particular intensive agricultural production coupled with the widespread use of chemical inputs;

Claudiu Ciprian Tănăsescu
D. whereas infected ticks and the disease seem to be expanding geographically, also in higher altitudes and latitudes; suspected to be caused by, among other things, changes in land use, climate change, global warming, excessive humidity and other activities related to human behaviour;

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E. whereas there is no European consensus on Lyme disease treatment, diagnosis and screening and national practices vary;

Amendment

Luke Ming Flanagan
E. whereas to the detriment of its citizens, there is no European consensus on Lyme disease treatment, diagnosis and screening and national practices vary;

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F. whereas the bite by an infected tick and the symptoms of Lyme disease can go unnoticed or even be in some cases asymptomatic, leading to sometimes severe complications and permanent damage similar to a chronic disease, in particular when the patient is not promptly diagnosed;

Amendements

Mireille D’Ornano
Fa. whereas the European Centre for Disease Prevention and Control (ECDC) has not been mandated to find cures for certain diseases but has nevertheless collected information from Member States in order to better understand the epidemiology of Lyme disease and has published recommendations for health professionals, as the infection is sometimes difficult to diagnose;

Mireille D’Ornano
Fb. whereas this is not enough, however, because many doctors are unable to make a relevant diagnosis owing to the wide variety of possible symptoms, the best known being erythema migrans – an annular rash around the bite area – joint pain and fatigue, which can lead to misdiagnosis as a result of confusion with lupus, viral infections, multiple sclerosis or fibromyalgia.

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G. whereas more reliable early diagnosis of Lyme disease will reduce the number of later stage cases significantly, improving the quality of life of patients, and whereas it will reduce the financial burden of the disease, saving approximately € 330 million on healthcare costs in the first 5 years already according to managers of DualDur EU research project;

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H. whereas many patients do not have access to the treatments that would suit them, nor are promptly diagnosed; whereas they feel deprived and unheard of public authorities and that some of them continue to have persistent symptoms that can lead to chronic disease;

Amendments

Luke Ming Flanagan
H. whereas many patients do not have access to the treatments that would suit them, nor are they promptly or properly diagnosed; whereas they feel deprived and ignored by public authorities and that some of them continue to have persistent symptoms that can lead to chronic disease, Ireland a case in point at the moment where some Lyme disease patients are forced abroad for treatment, for which they themselves must pay;

Sylvie Goddyn, Joëlle Mélin
Ha. whereas Lyme disease is inextricably bound to rural regions and the countryside and these areas face social, economic and medical disadvantages in comparison with urban areas;

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I. whereas there is currently no vaccine available for Lyme disease;

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J. whereas the burden of Lyme borreliosis in the EU is unknown due to the lack of statistics of this disease and heterogeneity of applied case definitions and surveillance systems;

Amendments

Claudiu Ciprian Tănăsescu
J. whereas the burden of Lyme borreliosis in the EU is unknown due to the lack of statistics of this disease and heterogeneity of applied case definitions, laboratory methods used and surveillance systems;

Mireille D’Ornano
Ja. whereas the Commission has stated, in Mr Andriukaitis’s answer to written question E-002453/2017 of 2 June 2017, that it does not intend to launch a large-scale enquiry into Lyme disease and the issue of cross border movement of patients to receive treatment;

Mireille D’Ornano
Jb. whereas the Commission has stated that it does not systematically collect information on the screening methods or on treatments administered in the Member States;

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K. whereas there is no ICD code separation of the early states and late state Lyme disease; whereas there are no individual ICD codes for the different late state Lyme disease symptoms;

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L. whereas the treatment practice guidelines of ILADS (International Lyme and Associated Diseases Society) and of IDSA (Infectious Diseases Society of America) differ and the differences between the two approaches to the disease also impact treatment practices in the EU;

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M. whereas there is a lack of profound understanding of the mechanism which turns Lyme disease into a chronic disease;

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N. whereas facing this health issue, health professionals have sounded the alarm for nearly a decade, as have patients’ associations and whistle-blowers;

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O. whereas Lyme disease, although well known in medical science, is still underdiagnosed, in particular because of the difficulties existing in the detection of symptoms;

Amendments

Urszula Krupa
O. whereas Lyme disease, although well known in medical science, is still underdiagnosed, in particular because of the difficulties existing in the detection of symptoms and the absence of appropriate diagnostic tests;

Mireille D’Ornano
Oa. whereas Lyme disease remains very difficult to diagnose given that the infection does not manifest itself until 7 to 14 days after the tick bite, the skin reaction around the bite eventually disappears and a wide variety of symptoms may appear, thus making it difficult to establish a link with Lyme disease;

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P. whereas the screening tests used for Lyme Disease are not always able to provide accurate results, such as the Elisa test which only detects one infection at a time;

Amendements

Mireille D’Ornano
Pa. whereas a number of serological tests have been strongly criticised for their unreliability, with some subjects suffering from often highly debilitating symptoms declared negative, and thus find themselves misdiagnosed and deprived of the antibiotic treatments needed to combat the disease; whereas numerous complaints have also been lodged against the manufacturers of diagnostic tests and that some doctors have been criticised for offering unconventional tests and
treatments;

Urszula Krupa
P a. whereas many Europeans are continuously exposed to Lyme borreoliosis through their profession (farmers, forestry workers, researchers and students carrying out field research – e.g. biologists, geologists, surveyors and archaeologists, etc.);

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Q. whereas the medical profession often follows outdated recommendations on Lyme Disease that do not take sufficiently into account the evolution of research;

Amendment

Mireille D’Ornano
Qa. whereas since 2007 the EU has contributed a total of EUR 33.9 million to Lyme disease research and the European Investment Bank has recently granted a EUR 25 million loan for the development of a vaccine against Lyme disease;

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1. Expresses its concern at the spread of Lyme disease in the European population in alarming proportions, since around 1 million citizens suffer from the disease according to the census methods used;

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2. Recalls that all Member States, to varying degrees, are experiencing an upsurge in Lyme Borreliosis, making it a European health problem of its own;

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3. Welcomes the funding allocated until to now by the Union for the search for early detection and future treatment of Lyme borreliosis (up to 16 million euros through projects such as ANTIDotE, ID-LYME and LYMEDIADEX);

Amendent

Monika Beňová
3. Welcomes the funding allocated until now by the Union for the search for early detection and future treatment of Lyme borreliosis (up to 16 million euros through projects such as ANTIDotE, IDLYME and LYMEDIADEX);

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4. Calls for additional funding on the methods for diagnosing and treating Lyme disease; Encourages, to that end, to foster the research efforts, both in terms of increased funds allocated and of exchange of epidemiological data, including data on distribution and prevalence of pathogenic and non-pathogenic genospecies;

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5. Calls for additional international cooperation on the research on Lyme disease;

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6. Encourages the Commission to collect the largest number of information on the screening methods or on treatments administered in the Member States;

Amendments

Claudiu Ciprian Tănăsescu
6. Encourages the Commission to collect the largest number of information on Lyme disease screening methods or on treatments administered in the Member States;

Claudiu Ciprian Tănăsescu
6a. Calls for mandatory reporting in all Member States affected by Lyme disease;

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7. Calls on the Commission to facilitate cooperation and exchange of best practices among Member States in terms of monitoring, diagnosis and treatment of Lyme disease;

Amendment

Claudiu Ciprian Tănăsescu
7a. Welcomes the inclusion by certain Member States of Lyme disease in their national surveillance system based on a specific methodology;

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8. Calls on the Commission to put in place uniform surveillance programmes and work together with the Member States to facilitate the standardisation of diagnosis tests and treatments;

Amendment

Urszula Krupa
8. Calls on the Commission to put in place uniform surveillance programmes and work together with the Member States to facilitate the standardisation of diagnosis tests and treatments; calls on the Commission to recognise borreoliosis as an occupational disease for agricultural and forestry workers, as well as for field scientists (e.g. biologists, geologists, surveyors and archaeologists, etc.);

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9. Calls for the development of evidence-based guidance on clinical and laboratory diagnosis of Lyme borreliosis; calls for the ICD code separation of the early states and late state Lyme disease; calls also for individual ICD codes for the different late state Lyme disease symptoms;

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10. Requests that the Commission publishes guidelines, based on the best practices within the EU, with regard to the training of general practitioners to facilitate the diagnosis and screening of Lyme disease;

Amendment

Mireille D’Ornano
10a. Encourages the Commission to publish guidelines on the reliability of erological tests and unconventional treatments for Lyme disease;

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11. Asks Member States to expand the use of clinical examination so that doctor can diagnose Lyme disease even if the serology tests are negative, in order to help patients break the “therapeutic deadlock”;

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12. Calls on the Commission to assess the magnitude of the phenomenon of patients looking for appropriate diagnosis and treatment for a long time which some patients face, and in particular the transboundary movements of patients seeking treatment and financial consequences thereof;

Amendment

Claudiu Ciprian Tănăsescu
12. Calls on the Commission to assess the magnitude of the phenomenon of patients looking for appropriate diagnosis and treatment of Lyme disease for a long time which some patients face, and in particular the transboundary movements of patients seeking treatment and financial consequences thereof;

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13. Urges the planning and creation of innovative projects that can contribute to improved data gathering and greater effectiveness of awareness raising activities;

Amendments

Urszula Krupa
13. Urges the planning and creation of innovative projects that can contribute to improved data gathering and greater effectiveness of education and awareness raising activities;

Daciana Octavia Sârbu, Nicola Caputo
13 a. Welcomes the European Commission implementing decision on the communicable diseases and related special health issues to be covered by epidemiological surveillance as well as relevant definitions, that includes the Lyme neuroborreliosis in the communicable diseases list.

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14. Urges Member States to facilitate the inclusion of Lyme disease in the European list of communicable diseases as it meets the selection criteria set out in the Annex to Decision 1082/2013 / EU;

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15. Emphasises that the addition of Lyme disease to the European epidemiological surveillance network will enable patients to benefit from the advantages of a robust and structured health system: permanent communication between competent national authorities, rapid and reliable identification of cases of Borreliosis Lyme in the Union, mutual assistance in the field of analysis and interpretation of surveillance data collected and deployment of devices necessary to stop its spread in humans;

Amendment

Daciana Octavia Sârbu
15. Emphasises that the addition of Lyme disease to the European epidemiological surveillance network is enabling patients to benefit from the advantages of a robust and structured health system: permanent communication between competent national authorities, rapid and reliable identification of cases of Borreliosis Lyme in the Union, mutual assistance in the field of analysis and interpretation of surveillance data collected and deployment of devices necessary to stop its spread in humans;

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16. Invites the Member States, which will be able to rely on the Commission’s logistical support, to set up an awareness campaign on the disease, first and foremost in the regions most affected by its spread;

Amendments

Sylvie Goddyn, Joëlle Mélin
16. Invites the Member States, which will be able to rely on the Commission’s logistical support, to set up an awareness campaign on the disease, first and foremost in the regions most affected by its spread, and to maintain in rural areas a level of public services (especially health care) equivalent to that in urban areas so as to ensure social equity in treating this disease;

Claudiu Ciprian Tănăsescu
16. Invites the Member States, which will be able to rely on the Commission’s logistical support, to set up an information and awareness campaign to alert the population and all those concerned to the existence of Lyme disease, first and foremost in the regions most affected by its spread;

Mireille D’Ornano
16a. Calls on the Commission to promote public awareness-raising campaigns on the isks of contracting Lyme disease following tick bites and in particular of the fact that the infection manifests itself some time after a tick bite and with a wide variety of symptoms;

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17. Calls on the Commission to draw up a European plan to combat Lyme disease commensurate with the seriousness of this silent epidemic encourages the set-up of a European network on Lyme Disease including relevant stakeholders;

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18. Calls on the Commission and the Member States to publish common prevention guidelines for those who have a high risk of getting Lyme Disease, such as outdoors workers, and standardised diagnostic and treatment guidelines.

Amendments

Sylvie Goddyn, Joëlle Mélin
18. Calls on the Commission and the Member States to publish common prevention guidelines for those who have a high risk of getting Lyme Disease, such as outdoors workers, and standardised diagnostic and treatment guidelines. calls on the Commission and the Member States to have Lyme disease recognised as an occupational disease when contracted as part of a high-risk occupation, farming, foresting or hunting for example;

Urszula Krupa
18a. Calls on the Commission to introduce preventive tests and a method for rapidly treating and monitoring the course of Lyme borreoliosis infections among professionals in the agroforestry sector and scientists involved in gathering field data;

Mireille D’Ornano
18a. Invites the Commission to assess the extent of the phenomenon of misdiagnosis affecting certain patients and in particular the cross-border movement of patients seeking treatment;

Liadh Ní Riada, Lynn Boylan
18 a. Recommends that the Commission promote research and awareness with a view to the prevention of Lyme disease;

Mireille D’Ornano
18b. Calls on the Commission to inform the Member States in full transparency of the scientific outcome of the many millions invested in research into Lyme disease and the development of a vaccine against it;

Liadh Ní Riada, Lynn Boylan
18 b. Calls on the Commission and Member States to research the increase of the tick population and the elimination of tick population by environmentally friendly means;

Liadh Ní Riada, Lynn Boylan
18 c. Recognises that the rise in number of persons affected with Lyme disease is as a consequence of climate change, due to migrating ticks.

Liadh Ní Riada, Lynn Boylan
18 d. Urges Member States to cooperate with each other with a view to prevention, through exchange of information, knowledge and best practice.

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19. Instructs its President to forward this resolution to the Commission.