Written answers

Thursday, 4 May 2017

Department of Health

Disease Management

Photo of Fergus O'DowdFergus O'Dowd (Louth, Fine Gael)
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169. To ask the Minister for Health if he will address the concerns raised in correspondence (details supplied) in relation to Lyme disease; and if he will make a statement on the matter. [21176/17]

Photo of Gerry AdamsGerry Adams (Louth, Sinn Fein)
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188. To ask the Minister for Health the current HSE protocol for identifying Lyme disease; the treatment options; if Lyme disease is classified as a chronic disease; if consideration will be given to classifying it as such; and if he will make a statement on the matter. [21251/17]

Photo of Gerry AdamsGerry Adams (Louth, Sinn Fein)
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189. To ask the Minister for Health if his attention has been drawn to the German model of detecting Lyme disease; and if consideration will be given to introducing a similar model here. [21252/17]

Photo of Gerry AdamsGerry Adams (Louth, Sinn Fein)
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190. To ask the Minister for Health the number of persons with Lyme disease here; and if he will provide a breakdown of diagnoses of Lyme disease in each year for the past five years. [21253/17]

Photo of Simon HarrisSimon Harris (Wicklow, Fine Gael)
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I propose to take Questions Nos. 169 and 188 to 190, inclusive, together.

Lyme disease (also known as Lyme borrelliosis) is an infection caused by a spiral-shaped bacterium called Borrelia burgdorferi.It is transmitted to humans by bites from ticks infected with the bacteria. The infection is generally mild affecting only the skin but can occasionally be more severe and highly debilitating. Lyme Disease is the commonest cause of tick-borne infection in Europe.

In general, it is accepted clinical practice in Ireland, the UK, Europe and North America that laboratory confirmation is unnecessary for a confidently-made, clinical diagnosis of erythema migrans (the initial primary skin lesion of Lyme borrelliosis). For later presentation Lyme borrelliosis, the two-tier system is necessary to ensure that false-positive rates are kept to a minimum. Serological testing for antibodies to Borrelia burgdorferiis the mainstay of diagnostic testing. There have been significant improvements in antibody testing in recent years, making diagnosis more certain than in the past. Testing for Lyme borrelliosis is currently undertaken in most of the larger hospitals in Ireland. The standard approach to Lyme diagnostics is a two-stage process and involves using a sensitive enzyme immunoassay (EIA – a test to detect proteins found in the Borrelia bacterium) as an initial, screening step. Screening EIAs can be insufficiently specific, giving false-positive reactions (i.e. leading to over diagnosis) in the presence of other infections such as syphilis, and certain viral infections including glandular fever. In addition, false-positive results can also occur in patients with autoimmune disorders and other inflammatory conditions including, rheumatoid arthritis, scleroderma, diabetes or ulcerative colitis. Samples giving reactive or equivocal results in screening tests are further investigated in a second-stage, confirmatory immunoblot (such as Western blot) tests. Use of immunoblot testing greatly increases specificity (i.e. it reduces the likelihood of these false positive results). Using this two stage approach gives a considerably great degree of certainty around the diagnosis of Lyme. All clinical (and other) laboratories in Ireland, must undergo continuous quality assurance to ensure that the quality of the laboratory tests they provide is maintained at conform to the highest internationally-accepted standards.

The HSE-Health Protection Surveillance Centre has established a Lyme Borreliosis Sub-Committee with the primary aim to examine best practice in prevention and surveillance of Lyme Disease and to develop strategies to undertake primary prevention in order to minimise harm caused by Lyme Borreliosis in Ireland. This will involve raising awareness among clinicians and the general public. The initial work packages of the Lyme Borreliosis Sub-committee involves a survey of laboratory methods for the diagnosis of Lyme borreliosis in Ireland, the development of Lyme borreliosis guidance for general practitioners and the publication of medical media articles to highlight diagnostics and laboratory methods relating to Lyme borreliosis available in Ireland for general practitioners. It is intended that the Sub-Committee will publish a final report on its findings.

Lyme borelliosis was made been statutorily notifiable in Ireland by the Infectious Diseases (Amendment Regulations) Regulations 2011 (S.I. no 452 of 2011). The notifiable entity is Lyme neuroborreliosis, the more severe neurological form of Lyme borelliosis. The Health Protection Surveillance Centre (HPSC) of the HSE collects and collates surveillance data on notifiable infectious diseases. The number of annual neuroborreliosis notifications over the last few years is as follows:

- 2012 – 8 cases;

- 2013 – 13 cases;

- 2014 – 18 cases;

- 2015 – 12 cases;

- 2016 - 21 cases (provisional).

There is extensive information available on the HPSC website including extensive general information on Lyme disease, Information for Healthcare Professionals, illustrations showing the characteristic rash of erythema migrans and relative tick sizes, and a new set of FAQs to answer the commonest questions about Lyme testing. Since 2013, the HPSC has held an annual ‘Lyme Awareness Week’ at the beginning of the tick biting season, the purpose of which is to draw attention - particularly in the media - to Lyme disease and the ticks that can spread this disease. This year Lyme Disease week will take place on 15 - 22 May.

Comments

anne duffy
Posted on 5 May 2017 6:04 pm (Report this comment)

Hello, 200 people demonstrated outside Dail Eireann, and tick talk ireland has a membership of 1700. As a person with Lyme disease and 7 co-infections I was too sick to make it to join the 200 (like so many others) MY GP tells me that "you don't get lyme in Ireland" and therefore does not report it. So how then can the HSE figures of 21 for 2016 etc be at all accurate.

(I have tested positive with the german lab mentioned, was bitten in 2001, and have been sick - and I mean really sick, not able to work, had to give up my phd studies two years into the programme, and mostly housebound sick - for 16 years).

Kerry Lawless
Posted on 5 May 2017 6:34 pm (Report this comment)

We need more accurate information out there. We need better testing and we need the Lyme Borreliosis Sub-Committee to actually meet and get some work done. Its not enough for the Minister to have set the Sub-Committee up they need to actually meet and, in consultations with patients, develop a work plan. Too much of what we have is already hit and miss and not reflective of best practice. For example why does the HPSC website list the bullseye rash as the first symptom? Not everyone gets the rash. Focusing on the rash undermines efforts at awareness raising. Why did the Minister not acknowledge the weaknesses of the current testing in Ireland? Even its manufacturer says it shouldn't be relied on for accurate diagnosis. There are better testing methods out there. Testing that can save time and money and human suffering. Why aren't we using them? Why is there no political urgency around this disease?

Ursula Power
Posted on 5 May 2017 8:45 pm (Report this comment)

As a person with Lyme and Co, I find it very frustrating when our Minister and the HPSC is not up to date with the wealth of knowledge available - my 3 children have Lyme and multiple Co infections but have neither been notified, nor did they ever have a 'classic' rash as they were born with it! Yes, it is congenitally transmissible.
My youngest has been seen by more doctors and Consultants than I can remember, since birth, yet Lyme was never suggested. When I finally figured it out and had him tested - his test in Ireland was negative. I sent all our bloods abroad and they were all confirmed positive, but even though the accreditation of said German lab is the same as our Irish labs, our results are not recognised here. Hence, we have no access to treatment. My GP admits he has no knowledge of use. There are thousands of others in exactly the same predicament.
Our European neighbours are taking this seriously and affording it the reverence it deserves. Our citizens deserve better and if we continue on the back foot we will have a nation of chronically ill people, many of them children. That is not a future anyone wants.

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