Belgium

Lyme is the fastest growing vector-borne disease. The numbers of infected ticks have never been higher. Many patients remain ill and end up disabled or a statistics. The government needs to take quick and decisive action.

The magazine ‘Infectious illnesses bulletin’ (Infectieziektebulletin issue 26 1999/2) addressed the issue of chronic Lyme as an occupational disease for forest rangers in Belgium. Lyme disease is recognized as such in Belgium. Diagnosed patients can receive social security benefits for the rest of their lives.

See Occupational diseases (in Dutch): http://www.beroepsziekten.nl/beroepsziekten/Lyme

Nevertheless, there is no recognition, treatment, reimbursement or help for anyone else than forest rangers. Lyme patients encounter problems with the RIZIV (institute for health insurance payment) and run out of money. The federal department in charge of reimbursing disabled and the VHAP (means and resources for people with a disability) regularly exclude patients suffering from Lyme disease.

Belgian political party SP-A has raised the issue of the importance of having a good treatment for Lyme disease. Nele Lijnen from the Open VLD political party held the following argument during the round table of April 23 2014 in Belgium:

“The policy in our country minimizes the impact of Lyme disease.  Patients are the living proof of how our country is grossly failing in providing treatment for the tick-borne disease.

Due to flawed test methods and ignorance by some doctors, many patients are diagnosed too late. It enables the disease to fester in their bodies for years. In certain cases, people have been carrying it for a decade without anyone knowing what the matter was.

According to the statistics requested from the Public Health minister, more than one thousand Belgians are diagnosed with Lyme disease. Yet, all indications suggest that the actual number of infections is much higher than perceived. Valerie Obsomer, researcher at the Catholic university of Leuven supported this point, as the spread of ticks and their numbers are barely charted in our environment.

In the name of Lyme patients, I declare war to the tick. A new prevention campaign is the first step. In Germany, at the edge of all forests, you can find large warning signs for ticks and instructions on what to do when you have been bitten. This is also perfectly achievable in our country as well as chartering the prevalence of the different tick species. Secondly, we must focus more on research and not turn a blind eye to foreign new insights. Thirdly, diagnosis and treatment must be urgently adapted to the complexity of the illness and the needs of the patients. Fourthly, I advocate newer and better testing methods as used at present in other countries and their reimbursement. Lyme disease is not only a physical and emotional nightmare, but also a financial one. The standard test currently used in Belgium only concerns 50% of all actual Lyme disease cases. The dozens of testimonials I’ve read are proof that the current approach is failing utterly.”

The Belgian government has approved a resolution twice, which means a policy must be developed. The resolution asks:

– To fund research

– To start effective treatment of persistent Lyme infections

– To allow / approve ILADS doctors

– To reimburse treatment

– To recognize the type of blood testing for diagnostic purposes as they are currently done in Germany, and adopt this testing method in Belgium

Less than 1 month after the resolution, the Public Health minister has stated not being able to help the Lyme disease patients in Belgium. Within 5 minutes she dismissed the whole argument.

The resolution: http://senate.be/www/webdriver?MItabObj=pdf&MIcolObj=pdf&MInamObj=pdfid&MItypeObj=appication/pdf&MIvalObj=83890425

What does this resolution mean?

Once a year, Public Health ministry cabinet must develop a policy plan. They must justify and inform what has been done in the past year. Despite 2 resolutions, nothing has changed so far and there is hardly any pressure to foster change. There are no criteria; no timeframe about how much needs to be done. As it is the case in The Netherlands, the responsible people are procrastinating leading to no concrete actions.

Because of this deplorable situation, the Belgian patient organizations Time for Lyme, Lyme België Belgique Protest and Lyme patients in Belgium are responding by means of a petition.

The petition: http://petitie.be/petitie/steun-open-brief-ivm-lyme-resolutie    (please sign and share)

The patients also joined hands and organized the event RUNtasTICK. During this event, money will be raised for testing, treatment as well as researching serious cases of Lyme disease.

The government’s failure in taking its responsibility has left us no alternative but to take immediate action.

AMBASSADOR

jc
John Crombez

Our Belgian Ambassador John Crombez is chairman of the Socialist Party in Belgium the SPA. John is known for his tough approach against fraud.
His brother Marc Crombez has Lyme disease which makes him quite committed to this disease. He has already successfully started a petition of 20,000 signatures to change the dire situation for Lyme patients in Belgium.
He is 100% supportive to the Lyme patients and is doing everything to push the government in the right direction so that recognition, treatment, compensation and help arrives.

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