Time for Lyme ASBL
TFL
L'association suscite et promeut des liens entre autres associations défendant la cause des malades de Lyme.
ID: 109714539308-52
Lobbying Activity
Response to Revision of the Union legislation on blood, tissues and cells
2 Sept 2022
Time for Lyme ASBL welcomes the opportunity to give feedback about blood transfusion safety.
Lyme disease (including Borreliosis), which is transmitted to humans by infected ticks, is the most common and increasing zoonosis in Europe.
The Eurosurveillance document shows how difficult it is to estimate the real numbers of Lyme patients
Epidemiology of Lyme borreliosis based on outpatient claims data of all people with statutory health insurance, Germany, 2019
https://www.eurosurveillance.org/content/10.2807/1560-7917.ES.2022.27.32.2101193
In the onset of Lyme Borreliosis, for most patients symptoms are mild, so these patients are not aware of the infection.
Many Lyme patients did not notice the tick bite, nor Erythema Migrans.
Non diagnosed and ineffectively treated patients are not aware of risks by donating blood.
The diagnosis of Lyme Borreliosis is difficult and tests are unreliable.
Tests are even less reliable to verify effectiveness of treatment.
As there is no benchmark, a big comparison of existing blood tests (at the beginning and end of infection) may give more information about their reliability.
Since blood tests are unreliable, it is impossible (unethical) to demonstrate contamination via human blood transfusion.
The European Parliament's resolution of 15 November 2018 on Lyme disease (Borreliosis) 2018/2774(RSP) calls for development of new Lyme diagnostic tests.
Additional precautions are taken in each Member State with respect to pretesting of Borreliosis, namely from national blood transfusion services.
The big variety in these precautions is shown on this web page.
https://timeforlyme.info/index.php/english/blood-transfusion-services
A list of blood transfusion risk research documents is available on
https://timeforlyme.info/index.php/english/blood-transfusion-research
A list of borrelia persistence after antibiotic treatment documents is available on
https://timeforlyme.info/index.php/english/borrelia-persistence-after-treatment
Time for Lyme ASBL recommends to be more restrained in using blood donated by Lyme patients.
Therefore more pretesting of Borreliosis is needed.
Read full responseResponse to Ex-post evaluation of Horizon 2020
2 Jul 2022
Time for Lyme ASBL welcomes the opportunity to give feedback on research projects.
DualDur blood test project is appreciated by Lyme patients.
The European Parliament's resolution of 15 November 2018 on Lyme disease (Borreliosis) 2018/2774(RSP) calls for development of new Lyme medicines and new Lyme diagnostic tests.
In Horizon 2020,
DualDur blood test is the only project that can have a useful outcome for Lyme patients.
Since the reliability of existing Lyme blood tests is not well examined, a big comparison (including DualDur) is needed.
For understanding the link with patient symptoms, the blood test results can be compared to a questionnaire.
Lyme patients use many antimicrobials.
Products based on plant extracts are unpatentable, so the funding for their research is critical.
As plant extracts can replace specific antibiotics or reduce their consumption, this alternative should be explored and subject to more investment.
No initiatives were taken, still not in 2022.
The priority asked by the European Parliament's resolution seems not to be given to future research projects.
That may be due to the fact that the precise needs of patients have not been fully described by the resolution nor anywhere else so far.
Thus, researchers and medical doctors lack of guidance on the patients' treatments.
The European Commission's expertise and funding would be a valuable contribution for a project of a kind, as a way of starting to implement the EP resolution.
This first stage research on the patients' needs must be patient-driven, as this should not be an academic-oriented study.
After the patients' needs are known and described, a second stage should be considered, be the tendering of the development of Lyme medicines and diagnostic tests, such as questionnaires and blood tests.
Applying companies will need:
- To be informed on how and where to find project partners;
- To coordinate among partners for the tender procedure, getting continuous guidance from the EC;
- Assistance to design and manage the projects, as this tends to be highly specialized;
- To be assisted in properly managing the financial contribution allocated by the EC;
- To get guidance in reporting the project progress (e.g. report templates).
The procedure to be tendered is too complex, too expensive and too risky for small companies.
So the investment risk is too high and needs to be addressed, otherwise no small or medium company will apply.
To sum up, we should be aware that this kind of research (with a view to designing questionnaires and innovative medicines) are not commercial-driven.
Time for Lyme ASBL would like to assist the European Commission on the implementation of the
European Parliament's resolution of 15 November 2018 on Lyme disease (Borreliosis) 2018/2774(RSP).
Please feel free to contact us.
John Vandeput (European policy-making contact): GSM +32 477 236965
Read full responseResponse to Interim evaluation of Horizon Europe
2 Jul 2022
Time for Lyme ASBL welcomes the opportunity to give feedback on research projects.
Lyme patients need support of European research initiatives, since needs are huge.
However there are no Lyme disease projects in Horizon Europe yet.
The European Parliament's resolution of 15 November 2018 on Lyme disease (Borreliosis) 2018/2774(RSP) calls for development of new Lyme medicines and new Lyme diagnostic tests.
In Horizon 2020,
DualDur blood test is the only project that can have a useful outcome for Lyme patients.
Since the reliability of existing Lyme blood tests is not well examined, a big comparison (including DualDur) is needed.
For understanding the link with patient symptoms, the blood test results can be compared to a questionnaire.
Lyme patients use many antimicrobials.
Products based on plant extracts are unpatentable, so the funding for their research is critical.
As plant extracts can replace specific antibiotics or reduce their consumption, this alternative should be explored and subject to more investment.
No initiatives were taken, still not in 2022.
The priority asked by the European Parliament's resolution seems not to be given to future research projects.
That may be due to the fact that the precise needs of patients have not been fully described by the resolution nor anywhere else so far.
Thus, researchers and medical doctors lack of guidance on the patients' treatments.
The European Commission's expertise and funding would be a valuable contribution for a project of a kind, as a way of starting to implement the EP resolution.
This first stage research on the patients' needs must be patient-driven, as this should not be an academic-oriented study.
After the patients' needs are known and described, a second stage should be considered, be the tendering of the development of Lyme medicines and diagnostic tests, such as questionnaires and blood tests.
Applying companies will need:
- To be informed on how and where to find project partners;
- To coordinate among partners for the tender procedure, getting continuous guidance from the EC;
- Assistance to design and manage the projects, as this tends to be highly specialized;
- To be assisted in properly managing the financial contribution allocated by the EC;
- To get guidance in reporting the project progress (e.g. report templates).
The procedure to be tendered is too complex, too expensive and too risky for small companies.
So the investment risk is too high and needs to be addressed, otherwise no small or medium company will apply.
To sum up, we should be aware that this kind of research (with a view to designing questionnaires and innovative medicines) are not commercial-driven.
Time for Lyme ASBL would like to assist the European Commission on the implementation of the
European Parliament's resolution of 15 November 2018 on Lyme disease (Borreliosis) 2018/2774(RSP).
Please feel free to contact us.
John Vandeput (European policy-making contact): GSM +32 477 236965
Read full responseResponse to A New European Innovation Agenda
5 May 2022
Time for Lyme ASBL welcomes the initiative to improve the innovation ecosystems related to health issues.
The European Parliament's resolution of 15 November 2018 on Lyme disease (Borreliosis) 2018/2774(RSP) calls for development of new Lyme medicines and new Lyme diagnostic tests.
However, the priority asked by the European Parliament's resolution seems not to be given to future research projects.
That may be due to the fact that the precise needs of patients have not been fully described by the resolution nor anywhere else so far.
Thus, researchers and medical doctors lack of guidance on the patients' treatments.
The European Commission's expertise and funding would be a valuable contribution for a project of a kind, as a way of starting to implement the EP resolution.
This first stage research on the patients' needs must be patient-driven, as this should not be an academic-oriented study.
After the patients' needs are known and described, a second stage should be considered, be the tendering of the development of Lyme medicines and diagnostic tests, such as questionnaires and blood tests.
Applying companies will need:
- To be informed on how and where to find project partners;
- To coordinate among partners for the tender procedure, getting continuous guidance from the EC;
- Assistance to design and manage the projects, as this tends to be highly specialized;
- To be assisted in properly managing the financial contribution allocated by the EC;
- To get guidance in reporting the project progress (e.g. report templates).
The procedure to be tendered is too complex, too expensive and too risky for small companies.
So the investment risk is too high and needs to be addressed, otherwise no small or medium company will apply.
To sum up, we should be aware that this kind of research (with a view to designing questionnaires and innovative medicines) are not commercial-driven.
Read full responseResponse to Recommendation for strengthened actions against antimicrobial resistance
14 Mar 2022
Lyme disease (including Borreliosis), which is transmitted to humans by infected ticks, is the most common zoonotic disease in Europe.
It is often treated with antimicrobials, which work well if taken properly as of the first signs of infection (fatigue, fever, headache). However, if left unattended, the disease can have a huge impact on the body.
Thus, Time for Lyme ASBL welcomes the interest in new classes of antimicrobials.
The European Parliament's resolution of 15 November 2018 on Lyme disease (Borreliosis) 2018/2774(RSP) calls for development of new Lyme medicines.
Unfortunately, products based on plant extracts are unpatentable, so the funding for their research is critical.
Nevertheless, as plant extracts can replace specific antimicrobials or reduce their consumption, this alternative should be explored and subject to more investment.
This objective is linked to the review of the EU general pharmaceuticals legislation.
Read full responseResponse to Evaluation and revision of the general pharmaceutical legislation
25 Apr 2021
About section
B. Objectives and Policy options
Ensure access to affordable medicines for patients, and address unmet medical needs;
d) Consider the creation of specific incentives to promote the development of new classes of antimicrobials in combination with rules aiming to promote their prudent use and measures aligning use to patient needs, such as reduction of package sizes;
Time for Lyme ASBL welcomes the interest in new classes of antimicrobials, as Lyme patients use many antimicrobials.
European Parliament's resolution of 15 November 2018 on Lyme disease (Borreliosis) 2018/2774(RSP)
calls for development of new Lyme medicins. Time for Lyme ASBL suggests to mention this resolution in the recitals of the new legislation.
Products based on plant extracts are unpatentable, so the funding for their research is critical.
As plant extracts can replace specific antibiotics or reduce their consumption,
this alternative should be explored and subject to more investment.
Time for Lyme ASBL would like to assist the European Commission on the implementation of the
European Parliament's resolution of 15 November 2018 on Lyme disease (Borreliosis) 2018/2774(RSP).
Please feel free to contact us.
John Vandeput (European policy-making contact): GSM +32 477 236965
Read full response