Friday 16 November 2018

EUROPEAN PARLIAMENT RECOGNISES SERIOUS PROBLEMS WITH LYME DISEASE INCLUDING DIAGNOSIS, TESTING & TREATMENT

MEPs call for a European plan to combat Lyme disease


MEPs have today adopted, for the first time, a resolution on Lyme disease, or Lyme borreliosis, an infectious bacterial disease in humans and in various species of domestic and wild animals, caused transmitted to humans through the bite of a tick.

Lyme borreliosis is the most common zoonotic disease in Europe, with an estimated one million cases, which are expanding geographically.

The resolution adopted by MEPs today calls for on the European Commission to draw up a plan to combat Lyme disease, to accompany mandatory reporting in all Member States, better exchange of best practice, additional funding of the methods for diagnosing and treating Lyme disease and the promotion of research efforts.

Frédérique Ries MEP, co-author of the resolution, commented after its adoption today;

“For the first time, the European Parliament has adopted a resolution on Lyme disease, which is timely given the growing risk this disease poses to Europeans. We need a European plan to tackle this growing continent wide health problem.  ”

“Treatment gaps mean that one million Europeans are struggling to receive the treatment they deserve, in the face of an overly conservative medical response. We denounce the fact that so many patients are being let down; they are entitled to effective treatment, including 100% reliable serological testing.”

“Europe must continue to fund research on "Lyme" because its diagnosis is complex and it takes various clinical forms.”

ENDS



A number of Irish MEPs have welcomed a European Parliament vote calling for better diagnosis and treatment of Lyme disease. 

Therapeutic wandering
“There is no European consensus regarding the treatment, the diagnosis and the detection of Lyme disease,” the resolution pointed out.
“From country to country, the diagnostic and treatment guidelines prove to be very different, forcing some sufferers to undertake a form of ‘therapeutic wandering’, crossing Europe to find solutions adapted to their infection,” Rivasi explained.

Lyme disease (Borreliosis) (debate)

Motion for a resolution 
 European Parliament resolution on Lyme disease (Borreliosis) (2018/2774(RSP)
B8‑0514/2018
The European Parliament,
–  having regard to the question to the Commission on Lyme disease (Borreliosis) (O-000088/2018 – B8-0417/2018),
–  having regard to the motion for a resolution of the Committee on the Environment, Public Health and Food Safety,
–  having regard to the European Centre for Disease Prevention and Control report relating to a systematic literature review on the diagnostic accuracy of serological tests for Lyme borreliosis,
–  having regard to the Expert Network consultation meeting on Lyme borreliosis surveillance in the European Union held in January 2016 in Stockholm,
–  having regard to 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(1),
–  having regard to Rules 128(5) and 123(2) of its Rules of Procedure,
A.  whereas the right to health is a fundamental right recognised by the European Treaties, in particular in Article 168 of the Treaty on the Functioning of the European Union (TFEU);
B.  whereas Lyme disease, or Lyme borreliosis, is a bacterial disease caused by the bacterium Borrelia burgdorferi, and is transmitted to humans through the bite of a tick, which itself is contaminated by the bacterium; whereas Lyme disease is an infectious disease in humans and in various species of domestic and wild animals, and is transmitted by ticks;
C.  whereas Lyme borreliosis is the most common zoonotic disease in Europe, with an estimated 650 000 - 850 000 cases and a higher incidence in Central Europe; whereas infection occurs in the spring-summer semester (from April to October), and borreliosis is recognised as an occupational disease for farmers, forestry workers and field researchers in the countries in which it is present;
D.  whereas infected ticks and the disease seem to be expanding geographically, with instances now also being recorded at higher altitudes and latitudes, as well as in towns and cities; whereas the suspected causes are, among other things, changes in land use, inter alia through the afforestation of low-quality land or the expansion of invasive plants, climate change, global warming, excessive humidity and other activities related to human behaviour;
E.  whereas there is no European consensus on the treatment, diagnosis and screening of Lyme disease and national practices vary;
F.  whereas a bite by an infected tick and the symptoms of Lyme disease can go unnoticed or even in some cases be asymptomatic, which can sometimes lead to severe complications and permanent damage similar to that of a chronic disease, in particular when the patient is not promptly diagnosed;
G.  whereas more reliable early diagnosis of Lyme disease will significantly reduce the number of later-stage cases, thus improving the quality of life of patients; whereas it will also reduce the financial burden of the disease, leading to savings of approximately EUR 330 million in healthcare costs already during the first 5 years, according to managers of the DualDur EU research project;
H.  whereas many patients are neither promptly diagnosed nor have access to suitable treatment; whereas they feel deprived and ignored by the public authorities and some continue to have persistent symptoms that can lead to chronic disease;
I.  whereas there is currently no vaccine available for Lyme disease;
J.  whereas the true burden of Lyme borreliosis in the EU is unknown due to the lack of statistics on this disease and the very wide variety of applied case definitions, laboratory methods used and surveillance systems;
K.  whereas there is no ICD code separation between early-stage and late-stage Lyme disease; whereas there are no individual ICD codes for the different late-stage Lyme disease symptoms;
L.  whereas the ILADS (International Lyme and Associated Diseases Society) treatment practice guidelines differ from those of IDSA (Infectious Diseases Society of America) and these differences between the two approaches to the disease also have an impact on treatment practices in the EU;
M.  whereas a profound understanding of the mechanism which turns Lyme disease into a chronic disease is lacking;
N.  whereas health professionals have been sounding the alarm about this health issue for nearly a decade, as have patients’ associations and whistle-blowers;
O.  whereas, although well known to medical science, Lyme disease is still underdiagnosed, in particular because of the difficulties encountered in the detection of symptoms and the absence of appropriate diagnostic tests;
P.  whereas the screening tests used for Lyme disease are not always able to provide accurate results, one such example being the Elisa test which only detects one infection at a time;
Q.  whereas many Europeans are constantly exposed to Lyme borreliosis through their professional activities (farmers, forestry workers, researchers and students carrying out field research such as biologists, geologists, surveyors or archaeologists);
R.  whereas the medical profession often follows outdated recommendations on Lyme disease that do not take sufficient account of research developments;
1.  Expresses its concern at the alarming proportions of the spread of Lyme disease in the European population, with around 1 million citizens suffering from the disease according to the census methods used;
2.  Recalls that all Member States, to varying degrees, are experiencing an upsurge in Lyme borreliosis, making it a European health problem;
3.  Welcomes the funding allocated to date by the Union for research into the early detection and future treatment of Lyme borreliosis (some EUR 16 million through projects such as ANTIDotE, ID-LYME and LYMEDIADEX);
4.  Calls for additional funding of the methods for diagnosing and treating Lyme disease; encourages, to that end, the promotion of research efforts, in terms both of increased allocation of funds and the exchange of epidemiological data, including data on the distribution and prevalence of pathogenic and non-pathogenic genospecies;
5.  Calls for additional international cooperation on research into Lyme disease;
6.  Encourages the Commission to collect as much information as possible on Lyme disease screening methods or on treatments administered in the Member States;
7.  Calls for mandatory reporting in all Member States affected by Lyme disease;
8.  Calls on the Commission to facilitate cooperation and the exchange of best practices among Member States in terms of the monitoring, diagnosis and treatment of Lyme disease;
9.  Welcomes the inclusion by certain Member States of Lyme disease in their national surveillance systems on the basis of a specific methodology;
10.  Calls on the Commission to put in place uniform surveillance programmes and to work together with the Member States on facilitating the standardisation of diagnostic tests and treatments; calls on the Commission to recognise borreliosis as an occupational disease for agricultural and forestry workers, as well as for field scientists (such as biologists, geologists, surveyors or archaeologists);
11.  Calls for individual tick prevention and control measures in the Member States in order to contain the spread of the Borrelia bacteria;
12.  Calls for the development of evidence-based guidance on clinical and laboratory diagnosis of Lyme borreliosis; calls for ICD code separation between early-stage and late-stage Lyme disease; calls also for individual ICD codes for the different late-stage Lyme disease symptoms;
13.  Requests that the Commission publish guidelines based on best practices within the EU with regard to the training of general practitioners so as to facilitate the diagnosis and screening of Lyme disease;
14.  Asks Member States to expand the use of clinical examination so that doctors can diagnose Lyme disease even if the serology tests are negative, in order to help patients break the ‘therapeutic deadlock’;
15.  Calls on the Commission to assess the magnitude of the phenomenon of some patients spending a long time seeking appropriate diagnosis and treatment of Lyme disease, in particular the cross-border movements of patients seeking treatment and the financial consequences thereof;
16.  Calls for the planning and creation of innovative projects that can contribute to improved data gathering and the greater effectiveness of education and awareness-raising activities;
17.  Welcomes the Commission implementing decision on the communicable diseases and related special health issues to be covered by epidemiological surveillance as well as relevant definitions(2), that includes Lyme neuroborreliosis in the communicable diseases list;
18.  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 that permits 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;
19.  Invites the Member States, which will be able to call 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;
20.  Calls on the Commission to draw up a European plan to combat Lyme disease that is commensurate with the seriousness of this silent epidemic; encourages the set-up of a European network on Lyme disease that includes relevant stakeholders;
21.  Calls on the Commission and the Member States to publish common prevention guidelines for those at high risk of getting Lyme disease, such as outdoors workers, as well as standardised diagnostic and treatment guidelines;
22.  Calls on the Commission to introduce preventive tests and a method for rapidly treating and monitoring the course of Lyme borreliosis infections among professionals in the agroforestry sector and scientists involved in gathering field data;
23.  Instructs its President to forward this resolution to the Commission.
http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-%2F%2FEP%2F%2FTEXT+MOTION+B8-2018-0514+0+DOC+XML+V0%2F%2FEN&fbclid=IwAR1c7LBdV1wEWaOCfVVo4Zu_Tp4DZqHlGPEz-1LouOKf_H41pEQ791daC6k 


European Parliament 2014-2019 TEXTS ADOPTED Provisional edition P8_TA-PROV(2018)0465 Lyme disease (Borreliosis) European Parliament resolution of 15 November 2018 on Lyme disease (Borreliosis) (2018/2774(RSP)) 
http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-%2F%2FEP%2F%2FTEXT+TA+P8-TA-2018-0465+0+DOC+XML+V0%2F%2FEN&language=EN&fbclid=IwAR2PSFRPSH8D6BbkBYr9qcv5DL-Brwr0x7AGsoNqzHo6k_HK2JAlldOOEM8

'A. whereas the right to health is a fundamental right recognised by the European Treaties, in particular in Article 168 of the Treaty on the Functioning of the European Union (TFEU);
B. whereas Lyme disease, or Lyme borreliosis, is a bacterial disease caused by the bacterium Borrelia burgdorferi, and is transmitted to humans through the bite of a tick, which itself is contaminated by the bacterium; whereas Lyme disease is an infectious disease in humans and in various species of domestic and wild animals;
C. whereas Lyme borreliosis is the most common zoonotic disease in Europe, with an estimated 650 000 - 850 000 cases and a higher incidence in Central Europe; whereas infection occurs in the spring-summer semester (from April to October), and borreliosis 1 OJ L 268, 3.10.1998, p. 1. is recognised as an occupational disease for farmers, forestry workers and field researchers in the countries in which it is present;
D. whereas infected ticks and the disease seem to be expanding geographically, with instances now also being recorded at higher altitudes and latitudes, as well as in towns and cities; whereas the suspected causes are, among other things, changes in land use, inter alia through the afforestation of low-quality land or the expansion of invasive plants, climate change, global warming, excessive humidity and other activities related to human behaviour;
E. whereas there is no European consensus on the treatment, diagnosis and screening of Lyme disease and national practices vary;
F. whereas a bite by an infected tick and the symptoms of Lyme disease can go unnoticed or even in some cases be asymptomatic, which can sometimes lead to severe complications and permanent damage similar to that of a chronic disease, in particular when the patient is not promptly diagnosed; G. whereas more reliable early diagnosis of Lyme disease will significantly reduce the number of later-stage cases, thus improving the quality of life of patients; whereas it will also reduce the financial burden of the disease, leading to savings of approximately EUR 330 million in healthcare costs already during the first 5 years, according to managers of the DualDur EU research project;
H. whereas many patients are neither promptly diagnosed nor have access to suitable treatment; whereas they feel deprived and ignored by the public authorities and some continue to have persistent symptoms that can lead to chronic disease;
I. whereas there is currently no vaccine available for Lyme disease;
J. whereas the true burden of Lyme borreliosis in the EU is unknown due to the lack of statistics on this disease and the very wide variety of applied case definitions, laboratory methods used and surveillance systems;
K. whereas there is no ICD code separation between early-stage and late-stage Lyme disease; whereas there are no individual ICD codes for the different late-stage Lyme disease symptoms;
L. whereas the ILADS (International Lyme and Associated Diseases Society) treatment practice guidelines differ from those of IDSA (Infectious Diseases Society of America) and these differences between the two approaches to the disease also have an impact on treatment practices in the EU;
M. whereas a profound understanding of the mechanism which turns Lyme disease into a chronic disease is lacking;
N. whereas health professionals have been sounding the alarm about this health issue for nearly a decade, as have patients’ associations and whistle-blowers;
O. whereas, although well known to medical science, Lyme disease is still underdiagnosed, in particular because of the difficulties encountered in the detection of symptoms and the absence of appropriate diagnostic tests;
P. whereas the screening tests used for Lyme disease are not always able to provide accurate results, one such example being the Elisa test which only detects one infection at a time;
Q. whereas many Europeans are constantly exposed to Lyme borreliosis through their professional activities (farmers, forestry workers, researchers and students carrying out field research such as biologists, geologists, surveyors or archaeologists);
R. whereas the medical profession often follows outdated recommendations on Lyme disease that do not take sufficient account of research developments;'

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