Committee on Petitions Ordinary meeting
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Speaker 8
And, again, it has to be addressed, tailored. What works for one destination doesn't work for the other. Among the things that we can mention, there is data. Data is necessary not only to fix the problems, but also to predict and to anticipate. Transport, sustainable transport to reach destinations that are less known, and to decongest the hotspots.
Speaker 7
Cooperation between different authorities, local authorities, regional authorities, public and private. There are many good examples. Recently, we were in Copenhagen, meeting the cities and discussing precisely this topic. You might have heard about the initiative COP and Pey, a very nice initiative, very simple, that is actually growing into a global phenomenon. Other destinations are also adopting it.
So it's really using the concrete actions of the tourists, of the visitors that come to a destination. They help clean a city or do some things that are helping the locality, the destination. And in return, they are paid, but not with money, but in returning with the nice services and nice offers in tourism. So these kind of examples are already existing. We don't want to reinvent the bicycle.
What we want to do is to have a more comprehensive framework also to offer the dialogue for the destinations to have this peer to peer discussion and learning, concrete learning, going to the destination and learning from each other. There was a question on indicators, how to measure the pressure. We already have an EU tourism dashboard where we are measuring intensity, the concentration in regions and locality. So some data and some indicators are already there. We are also revising the European statistical regulation on tourism.
The budget line for tourism, we have heard, many times this suggestion and this offer. You know that the new MFF is on the table in the negotiations. I would say that we have seen from the experience in this programming period that, for example, cohesion policy has helped a lot to diversify tourism flows in many regions, also by cooperating across the regions. You have also asked about the concrete timeline and action plan. We do have in mind to accompany the strategy with a very concrete action plan, so it will be there.
And the good practices, again, will be shared and implemented together with the alliance, with the different stakeholders, and concretely with the work with the destinations. I hope I was clear. Without having the strategy on the table, it's a bit difficult to talk, but you will see in the coming months.
Mr. Paolo?
Speaker 37
Thank you, sir. But I don't think there is any question on the short term rental regulation, so I avoid losing time on the other panelists.
Speaker 9
Thank you, Mr. President. I switched to Italian to answer all these questions, very interesting. And no. The. Well,
I think the questions that you've put to me are all very interesting in the perspective that we all need to have on tourism. As I said at the beginning, all public policies are cross-cutting with tourism. So it's very welcome in future European budgets. If you think about having a budget focused on tourism, the current shock that tourism is undergoing due to the crisis in the Middle East, and the focus that we all have on travels, on arrivals, and on the upcoming season, all of this planning could lead to losses of up to 2,000,000,000 for Italy alone. So the income that tourism brings to our countries and regions can't be given or taken for granted.
Tourism is sensitive to external shocks because it depends on mobility, connectivity, stability, and security. And security both means perceived security and consumer trust. These are all important for tourism. We don't have a red line to stop tourism. Tourism should be welcome because, as I said before, the impact that it has, the positive consequences for other services, the income it generates are all very welcome.
In our experience, what have we done to better manage tourist destinations? First of all, we're the first country that has introduced measures for staff houses. So we give resources to businesses to ensure that they can guarantee accommodation for their workers in tourist destinations. The government has given a 10,000,000,000 to the housing plan, and that has a specific measure for seasonal workers and workers in tourism. And these are not small measures, because even moving our workers around within a country to ensure that you have the workforce that you need for tourism is not something easy to do.
Thank you for the questions about wine and gastronomy. Italy has the fortune of having had Italian cuisine recognized as UNESCO heritage. This has been done by UNESCO, and we have to do even more to ensure that it contributes towards the wealth of our territory and that this Italian heritage contributes to other regions as well. We want to ensure that people can go to regions and discover protected denominations of origins and so on. This already exists.
We already have wine producers in different regions. And throughout the country, we have different specialties and differences. We have, in fact, a record in the types of fruits and vegetables and specialties that are made based on these. Big events, we think that these are the strongest tools to move people and to bring in people outside of peak seasons. We're working to ensure that we can bring other big events to Italy, and we hope to be able to measure the impact of these and look at how we can properly manage them.
There are imbalances. Some events are focused in peak periods already, but we want to see how we can organize events or big events that can help to create urban regeneration or new infrastructure. We've just organized the Milano Cortina Winter Olympics this winter, and all of the infrastructure that was built for that should be our legacy and should be used in the months and years in the future. In Santa Giulia, in Milan, the arena is going to be used for both sporting events and also musical events and concerts. We need to be able to, this should become amongst the big international stadiums like the ones we have in Turin.
We have the ATP finals in Turin that has been reaffirmed. We also have the WWE in Turin, the Crown Jewel this year. We have the Mediterranean games this summer in Puglia. Going to have the America's Cup in Naples in 2036. We want to focus on the mountains and the south of the country, and to ensure that these events can bring infrastructure and to ensure that tourists can get to know more about these areas as well.
But the events themselves are not enough. We need proper investment, and the Italian government is working in this direction.
Thank you. Berto.
Bogdan Rzońca
Thank you very much. Thank you very much, thank you very much indeed. A huge thanks go to all the speakers, experts, and members of parliament. I think it has been very interesting. We have a lot of food for thought.
And as my colleagues have pointed out, in our committee, we get a lot of complaints about problems that need to be solved. But the entities working on infrastructure, hotels, cleanliness, those are the hosts that need to prepare their cities for the tourists. They have a different perspective. Tourism is a part of our economy. Tourism should be oriented towards those who are able to enjoy our beautiful world, our beautiful surroundings.
And now we will move on. We are moving on to the petitions, to the debate on petitions. I would like to thank all our guests. We are moving on to another part of the meeting.
Very well.
Point number nine. Item number nine on our agenda. Let us proceed. Zero zero two three slash twenty fourteen, submitted by Morena Pantalone, Italian, on the recognition in Italy of Fabryomyelagia as a debilitating disease. I think the petitioner is connected online.
Are.
We connected?
Good afternoon.
Francesca Roman Orlando
Thank you. Honorable members of the commission, my name is Francesca Roman Orlando, and I speak as the delegate of the petition and as the vice president of AMICA Association, active since 2003 in the protection of people affected by chronic and environmental diseases, such as fibromyalgia, multiple chemical sensitivity, and electromagnetic hypersensitivity. Next, please. Fibromyalgia is characterized by widespread chronic pain, fatigue, and cognitive disorders affecting approximately 2 to 3 percent of the European population. It is included in the World Health Organization's International Classification of Diseases since 2022.
Next, please. Next slide. Multiple chemical sensitivity is a multisystem condition. Next. Thank you.
Multiple chemical sensitivity is a multisystem condition in which the exposure to low concentrations of common chemical substances induces symptoms affecting multiple organs. A very recent epidemiological study estimates that in Italy, the prevalence of MCS may reach up to 5 percent of the population. MCS is included in the national versions of the international classification of diseases in several countries, including Germany, Austria, and Spain. Next. Electromagnetic hypersensitivity is characterized by multisystem symptoms triggered by exposure to electromagnetic fields at very low levels.
Epidemiological studies on EHS indicate that this condition affects between 3 to 5 percent of the population in the world. Next, please. I would like to recall that the United Nations Conventions on the Rights of Persons with Disability includes conditions that limit participation in social life even in the absence of evident organic damage. The rights guaranteed include effective access to health care, reasonable accommodation in the workplace and at home, and removal of environmental barriers where possible. In practice, these rights are not guaranteed for these diseases, which have a devastating impact on patients' ability to work, to participate in social life, and to access health and social services.
Next. How can a person with electromagnetic hypersensitivity or multiple chemical sensitivity access a hospital or a public place where people use mobile phones or wear fragrances? Today, people suffering from these conditions can cope only by relying exclusively on their own family resources. Institutional interventions are fragmented. In Italy, for example, there are local regulations such as the prohibition of the use of certain pesticides near the homes of people with MCS, but more extensive regulation is needed.
Next. Hospital accommodation guidelines for MCS are needed, such as those described in the Italian scientific consensus published in 2021 in the International Journal of Environmental Research and Public Health. Next, please. Workplace protection strategies are possible and needed. For example, those described in the green paper on workplace adaptation for people with MCS and EHS developed by the Spanish network, CONFESS, with the support of the Fundación OMCE.
Next. A drastic reduction in the population exposure to electromagnetic field is needed to new safety standards that take into account the many non-thermal effects of electromagnetic fields. Restrictions on the use of fragrance products are needed in health care, work, and educational environments, as well as in public transport. An extension of smoking bans is needed, including in crowded outdoor public spaces. Next, please.
The absence of proper accommodation protocols and the difficulty of avoiding continuous and pervasive chemical and electromagnetic exposures not only constitute a concrete violation of the United Nations Convention on the Rights of Persons with Disabilities, but also create the conditions that contribute to an increase in the number of patients and to the worsening of their conditions. Taking care of persons with environmental disabilities would improve the environmental quality and the health of all European citizens.
Thank you.
Speaker 16
Thank you, honorable members, dear petitioner. The commission shares the objectives of improving the lives of people with fibromyalgia through better health care, research, workplace adaptations, and social inclusion. In this context, under the Treaty on the Functioning of the European Union, health policy and social protection systems are primarily the responsibility of member states. In the area of health, under Article 168, it is explicitly stated that member states define their health policies, including the organisation, financing, and delivery of health services and medical care. Under Article 153, it further clarifies that the EU has no competence to harmonize laws on social security or the recognition of disabilities, including fibromyalgia.
This means that the official recognition of fibromyalgia, whether as a disability or a chronic condition or within national health systems, falls under the national jurisdiction. And therefore, unfortunately, the commission cannot impose a one size fits all approach on member states in this area. But what the EU can do, we can support member states in fostering cooperation, funding research, and sharing best practices that can also benefit those patients with fibromyalgia. We already have a number of important health initiatives where we support member states and stakeholders. The Healthier Together EU NCD, Noncommunicable Diseases Initiative, is our main strategic framework to reduce the burden of major diseases by promoting prevention, early diagnosis, and screening, and equitable access to care and treatment.
We also foster best practice exchange. We have platforms like the joint actions, where member states can collaborate and be funded under the EU4 Health Programme to share information and knowledge on diagnostics, treatments, and patient support on fibromyalgia. And through Horizon Europe, our research programme, we fund research on better diagnostics, treatments, and management of chronic pain conditions, which can also be beneficial for fibromyalgia patients. In addition, an EU directive 89/391 requires employers to assess and mitigate risks to workers' health, including workers who are suffering from particular conditions like fibromyalgia. Finally, the EU strategy for the rights of persons with disabilities, which was adopted in 2021 and will run until 2030, we aim to ensure full participation in society for all, in line with the UN Convention on the Rights of Persons with Disabilities.
The commission remains committed to working with you, to improve the lives of people patients and people with fibromyalgia within those boundaries that I mentioned earlier. Together, we can ensure that no one is left behind due to the invisibility of their condition. Thank you.
Bogdan Rzońca
Thank you. And now.
We will give the floor to political groups. Mister Palladis, vice-chair.
Speaker 20
Thank you. I'd like to thank the petitioner for, at least 10 now has brought this to our committee. First of all, the nonrecognition of fibromyalgia as a debilitating and exhausting disease. Even though health is a competence of member states, this specific case shows how important it is to exchange best practices both on the recognition and the management of this disease, taking into account that inside and outside the European Union, there are different treatments. So I propose that it remain open in order to continue monitoring developments and enhance the dialogue between member states.
Thank you.
Sandra Gómez López
We'd like to thank the petitioner for her testimony, and we recognize this is the daily reality for many people who are suffering from chronic and complex illnesses. And they aren't always visible, as is the case of fibromyalgia. Access to health care is a fundamental principle of the European Union. It must be guaranteed. And a citizen who feels that they are excluded from this or are not protected needs treatment.
We need to be sensitive to this. At the same time, any political and health response needs to be based on solid and independent scientific data, guaranteeing public health standards, and avoiding any conflicts of interest, which might undermine trust. This is why we support the petition. We want it to remain open and can keep working on it. As member states, we also apply the WHO convention on rights for people with disabilities and access to public health when it comes to health and employment and protection for vulnerable persons.
Thank you.
Yes.
Two minutes for you.
Francesca Roman Orlando
I'm very grateful for the reply I received. At the same time, I would like to underline that in my experience, the main obstacle to the recognition of these environmental diseases, we consider them environmental because they are caused and triggered by environmental factors, is the conflict of interest in the committees that are called into the side about the evaluation of scientific papers. So in my experience, we find that these diseases are opposed by industry because we know that the triggering of environmental factors pose a problem about safety standards. And we would like to ask you to please consider the importance of the new regulations for a conflict of interest. In our opinion, it's not enough to declare a conflict of interest.
We would like to have scientific commissions in the EU that are totally independent and made by experts that work for the public institutions or NGOs founded by citizens. We don't want to see any more experts funded by industry or funded by industry NGOs. This is the main problem that we observed in 20 years. We know that we could have answers for the citizens if the evaluation of scientific evidence is made by independent scientists. So please consider this.
This is an investment that we are going to do for the health of all European citizens, not only for the people who are already disabled. Thank you.
Thank.
Bogdan Rzońca
thank you very much. This petition will remain open. In the meantime, we are waiting for the commission to reply. Thank you very much. We are moving on.
Item 10, number 1468/24 by Esther Roger Alcoba from Spain on behalf of the association on the diagnosis and treatments of patients with celiac disease in the EU. If I'm not wrong, the petitioner is connected remotely, so I hope we are connected. And there is a second speaker in the meeting room, if I'm not wrong. Another representative of the organization is in the room.
Yes, please. Stop.
Esther Roje
Senoras, Ladies and gentlemen, members of the petitions committee, I appeared before you a year ago to try to convey to you a reality that millions of celiac people in Europe are living in a situation which renders them vulnerable in health, economic, and social terms. Today, I'm here once again not only to bear witness to this reality, but to take one further step. Since the last time I appeared, this petition has been declared admissible, and there has been a formal response granted by the European Commission. It has also been passed on to the public health committee of this parliament. This confirms that we're not dealing with a minor issue here, but we're talking about a real challenge at the European level.
During this time, the European Commission has recognized some key elements here: the lack of diagnoses on a significant scale, the significant economic impact, and difficulties in accessing treatment, therefore, vulnerability for celiacs. This is a problem that we have all managed to identify. But today, for millions of European citizens, nothing has changed. Europe has changed. Progress has been made on market harmonization, but there's been no guarantee of equal access to the treatment.
The reality continues to be the same. There's no shared approach between the member states. Support measures are unequal, and access to treatment continues to work, in practice, as a genuine postcode lottery. This is generating clear inequalities between European citizens who are dealing with the same illness. Ladies and gentlemen, as the member of the European Commission reminded us, we're not working in a legislative vacuum here.
The European Union does have instruments available, legislation on food information, control systems, finances for research, and coordination mechanisms between member states. The problem isn't the lack of tools available. It's about the lack of implementation and effective coordination. There are countries that have put structured models in place for support for people who are dealing with celiac disease, such as Italy, for example, which offer economic aid and access to gluten-free. They also have health systems and personalized systems, as well as early detection programs or screening.
This shows us that solutions do exist, and they are viable within the current European framework. At the same time, at the national level, we also see that progress is not materializing. In Spain, for example, there are a number of legal initiatives underway, but their development continues to be extremely limited, and there are parliamentary blockades. This all shows that without any clear and coordinated response at the European level, solutions won't arrive or they will, but too late in the day. Ladies and gentlemen, we're not talking about food choices here.
We're talking about medical and non pharmacological treatment that is mandatory and for a person's rest of their lives. This requires an excessive, this comes at a structural cost at about 1000 euros per year per person, which falls fully to individual patients. And because of the genetic component of this illness, often it affects multiple members of the same prob of the same family, and that multiplies the economic impact. Furthermore, access to treatment does not merely depend on the health system. It also depends on public services and the food environment.
This means that patient safety is at stake every single day, also in schools, hospitals, homes, or other public spaces. And therefore, it requires a broader, more cross cutting, and well coordinated public response. To that end, today, we suggest making progress on three lines of action. Firstly, bolstering coordination between member states, promoting the real exchange of best practice, and primer and foremost effective implementation. Secondly, making progress on harmonization of diagnostic criteria and early detection to reduce the high level of lack of diagnoses.
Again, we're talking about fifty percent of the patients who are not diagnosed. Third, put in place a European reference framework that puts equal minimal conditions that guarantee access to treatment across the whole of the European Union. Ladies and gentlemen, as we've seen, the problem is not the lack of knowledge. The problem is the lack of effective action. Europe has recognized this reality.
It has the instruments available, and it has examples that show that progress is possible. Now is the time to take this next step. And this, ladies and gentlemen, is very much in your hands, because we're not dealing with a new problem here. This is a problem that continues to have zero solutions. Celiacs are not asking for privilege.
They're asking for access to treatment and equal conditions. And this is what we've been talking about, guaranteeing the right to protection for health and equality for all European citizens. Thank you very much. And I now give the floor to my colleague, Veronika Rubio, who is the secretary general of the Coeliac's Organization from Europe, AOX, who has also cosigned this petition. Chair, honorable members of the petitions committee, I'm grateful to have the opportunity to be here today to support my colleague, Esther Roje, and to give a voice to people who are suffering from celiac and cannot be present.
Veronika Rubio
Today, we're not talking about a medical condition. We're talking about the daily experience of millions of European citizens where something as basic as being able to eat out in a restaurant, at their school, or in a hospital, traveling, or simply going shopping, continues to be a constant challenge. The AAOS, the organization which I have the honor of representing, brings together 40 different celiac associations from within and outside the European Union, and we want to be extremely clear. What we're talking about today is not a national problem. This is a pattern that is seen to greater or lesser extents in practically all member states.
In Europe, a celiac doesn't enjoy the same opportunities depending on where they live. In some countries, they receive some type of support. In others, nothing at all. In some countries, they'll receive a diagnosis in the space of a few months. In others, it will take years.
In some member states, there are safe and affordable products. Elsewhere, people face much higher costs even for basic products, such as bread. This inequality is not episodic. It's structural. The European Union has demonstrated leadership in food safety, and today, it has the opportunity to take an additional step in the right direction, strengthening coordination between member states, promoting an exchange of best practice, and making progress towards shared instruments that would reduce these existing gaps in research, diagnosis, treatment, and monitoring of celiac people and also offering support to the people who are celiac.
Celiacs don't change when they cross a border, and the same should not apply to their health and safety either. Thank you.
Thank.
Bogdan Rzońca
Thank you very much to our petitioners. Now I would like to give the floor to the commission, Digisankó.
Speaker 16
Thank you, honorable members, dear petitioners. The commission fully understands the challenges faced by individuals with celiac disease and gluten intolerance in their daily lives. Guided by a risk assessment from the European Food Safety Authority, the commission aims to ensure that clear, accurate and safe information about food choices is provided to consumers. To support these objectives, the food information to consumers regulation lays down provisions on food information to consumers. And the member states have the obligation to put in place control systems, which verify operators' compliance with the requirements set out in the agri-food chain legislation.
Speaker 14
The current legal framework also allows for member states, if they wish, to apply an exemption with deductibility of VAT paid at the preceding stage or a reduced VAT rate below 5% to the supply of food, including gluten free foods. In parallel, we have ongoing research through the Horizon 2020 and Horizon Europe research programs. And so far, over EUR 39,000,000 has been invested in projects on gluten intolerance, celiac disease, and to search for better tools to produce gluten-free foods. Member States are responsible for the organization, financing, and delivery of health services and medical care as stated in article 168 of the Treaty on the Functioning of the EU. And therefore, the EU's role is to complement national policies and to support the exchange of best practices.
In conclusion, the commission remains dedicated to supporting and protecting individuals with gluten intolerance and those with celiac disease within the remit of its competencies. Thank you.
Speaker 12
Thank you very much. Thank you to the organization in Catalonia. Thank you for your bravery. Thank you to the Spanish Association for Celex as well. But as a Spanish citizen, as a European as well, firstly, I'd like to talk about the work that the European Union has done because it's been said very clearly, DG Sante and the committee have been putting in place policies in Europe, which are complementary in the member states.
And the commission has spoken about labeling clear information to assist celiac patients. Secondly, there's the possibility that member states have to also offer VAT exemptions on gluten free products, and also then offering support to manufacturing industries, especially in the agri-food sector as well, to try to promote these forms of production of gluten free products. And therefore, there's this aspect of complementarity and also coordination across Europe. But from a Spanish perspective, I felt compelled to talk and, as another citizen who is suffering from celiac. And I would just like to say thank you very much to the representatives for what they've said today because they're actually putting a face on the reality that Pedro Sanchez's government and the government in Catalonia seem to be incapable of responding to.
Speaker 18
Celiacs depend on their postcode as to whether they receive treatment or not. Celiac disease is not a fashion. It's a form of torture for anyone suffering from it because gluten is contained in 70% of the foods that they eat. And the slightest amount of cross contamination, even contact with the air, then turns this food into poison, a type of poison that will poison your own immune system and attack your own system. Unlike a pay patient suffering from diabetes, let's say, who has insulin that is covered by the national health system in Spain, or someone who has myopia who receives, say, state support for their glasses, for example.
Half a million Spanish families who have at least one member with celiac have to pay out of their own pocket day after day. It's an extra form of taxation placed upon them simply for being ill. It's a tax just for trying to live a normal life. A celiac pays per year €1,200 more than someone who is not suffering. And I have to say this, that the socialist party, instead of helping patients, is punishing them.
They're treating bread, pasta, or basic products as luxury products. And, you've told us that there is a solution, VAT exemption. So the solution is there, and the socialist government of Spain has it. But the commissioner said this loud and clear. So it's shameful, quite frankly, that a government in Spain in a European member state is, clearly, discriminating against half a million families.
And what I find the most outrageous is that Sanchez hasn't acted on this for electoral reasons, ideological reasons as well. But the same has happened with other people suffering from illnesses, with a law put in place by the PP, which had been approved, but the socialist government doesn't want to implement it. And the same is happening now with celiacs. The PP in Spain put forward a draft bill to the Spanish parliament to help celiacs. It was approved.
And then Sanchez's government did nothing about it. This is the problem that we have with the socialist propaganda and the proper governance of the PP in Spain trying to offer real solutions to people. And the socialist government, which is leading in Europe, and I have to say this because the commission representative didn't. The framework directive is there for a diagnosis, a die diagnostics, so they don't come in seven years later. Spain has put in place a national celiac register and is trying to, with money available for each patient.
Again, this is something that Sanchez doesn't want to implement, even though it was approved by congress. And also in the autonomous communities, in regions where you have PPE governments in place. It might be Madrid or Andalusia. We've put in place direct forms of support for families suffering from celiac disease. And out of, for reasons of justice, solidarity, and commitment to those families, Spain and Europe have to put an end to this situation where celiacs are vulnerable, and they're paying the price.
And the commission has mentioned the solution. We have to approve specific forms of support for these people because taxing health, it should be a source of democratic shame. It's a form of abuse that we cannot allow ourselves to get away with in Spain or in Europe. There are many families that are economically struggling, and they're finding themselves, but they're putting themselves at risk. They're having to eat gluten products because there is no other option.
In Spain and Europe, we cannot accept this reality. There cannot be one place in Europe where being healthy is a luxury, where other people can't afford to pay for their supermarket bills, where thousands of families are deciding whether they actually can get to the end of the month, with money in their pocket or protect their health. Therefore, the EPP, as part of this committee, we ask this parliament to keep the petition open and to demand Pedro Sanchez's government to apply this draft bill immediately, which was already approved by the Spanish parliament. Because this offers a real solution to celiacs in Spain, and we encourage the European Commission to continue doing what it's doing to harmonize treatment all across Europe for all families who have celiacs in the families, because we don't want to have a two speed Europe. We want to have a one-speed Europe where all celiacs have equal access to treatment.
Sandra Gómez López
After that party political broadcast, there are some legitimate concerns, legitimate questions, and the commission has raised them. Sometimes it seems that the just uses the petitions committee for its own ends, and so we never get anything done. We've, in the tourism hearing, we didn't have anyone from the PP. We know that the Spaniards are very well represented, however, in this committee. Now I'd like to thank Veronica, but I don't think she wants to hear a political meeting.
I think she wants to hear some solutions. And this committee has to do something. I think we can urge the commission to act. First of all, as I said before, I'd like to thank you for bringing visibility to this condition that affects millions of European citizens, and it's something that is underestimated, I think, in the commission. An illness is not a food preference, as you quite rightly said, and nor is it a lifestyle.
It's a chronic autoimmune disease and should be treated as such. Often, how you are able to manage this depends on your economic level, where you live, whether you have access to information, whether you have an early, clear diagnosis. This is a structural issue that we should be able to tackle. We welcome the fact that the commission has recognized certain key issues: the underdiagnosis, the significant economic burden that displaces some burden on patients, territorial inequalities that still exist. But this isn't going to solve the problem, and we have to ensure that we make progress in a more equal implementation of work on this.
We need proper labeling. We need to deal with this as an issue of consumer protection and public health. We need to emphasize the cooperation that exists between member states, and exchange of best practices, but this isn't enough. So we should be ensuring that we have equal criteria for early diagnosis, particularly in areas where we have under diagnosis. This should be a European framework reference framework with minimum criteria.
So we therefore want this petition to remain open, that the competent committee should continue with follow-up, including the SANT committee. And we want to see recommendations from the commission on cooperation to ensure that we can have effective treatment for people with celiac disease across the EU. And finally, we also, and I'm saying this for madam Montserrat. Remember that she was a health minister. We also have to think back to what happened when you had the opportunity to do something about this when this was in your area of competency, and there was no progress made on it by the Partido Popular.
There was no direct support, no support for schools, no initiatives about this. We need to cooperate more between the different parties to tackle a problem that does not have any political color. Thank you.
Madame de la Pisa, the patriots.
Margarita de la Pisa Carrión
Thank you very much. Ladies and gentlemen, thank you very much to the petitioners. Celiac is a chronic disease which affects between 5 to 10 million European citizens. Many of them still don't know they have it, and that's why it's so hard to track down. It requires a strict gluten-free diet.
There's no other alternative to it. Food for them is not simply a dietary option. It's a form of treatment, and it's medicine for other patients. However, that treatment is not covered by our public health system, and the cost of gluten free products is significantly higher than conventional foodstuffs. When it and we can it can cost an extra €1,000 per year per family for those suffering from it, and this falls, disproportionately upon patients.
Direct economic support is insufficient or either doesn't exist at all. Therefore, it's very important to exchange best practices between countries to ensure that there is some real support being offered. This could be vouchers or access to health care. The other problem is the lack of diagnosis. Between about 75 and 80 percent of celiacs still don't know that they have celiac disease, and that's why they don't receive the appropriate treatment.
The average time to obtain a diagnosis in Spain is 7 years since the appearance of first symptoms. The reason for this and there's a real need to improve information for health professionals, clear criteria. There has to be medical proto protocols in place where real action can be taken. The lack of action reduces the dimension of this disease. We need to detect diseases as soon as possible to reduce the damage.
The lack, we also need to see patient monitoring and support. Celiac is a disease that doesn't only appear in the digestive system. It appears elsewhere, including mental health effects, and that's why the approach to it must be multidisciplinary. When it comes to something as simple as eating out, it can be mission impossible for patients suffering from it. Even in a hospital canteen, they also find it difficult to cater for these types of diets at times.
The associations are playing a key role here. They're working with restaurants to offer safe gluten-free options, training personnel, and avoiding any kind of cross-contamination. But it would be better for these efforts to be backed by institutions. Here, it's about offering support to the sector. It is not a burden.
It's an opportunity to offer services to more patients. A person with celiac always goes along with friends or family, etc. So this can be a ripple effect here. It's that there are major economic, health, and social challenges here, and they haven't yet been resolved. Our commitment is essential.
We have to demand a firm response from public health authorities, exchange of best practice, and successful action plans that have been adopted by member states. We can look at the countries that have gained the best results. We can also invest in research. In research needs to be focused on determining the causes of this pathology, because this pathology has not benefited from sufficient attention yet. And this has made it very difficult to come up with any new therapeutic tools, and they may well exist.
Therefore, the European Parliament and the European Commission have put in place strategies in areas such as cardiovascular disease and cancer, and this would be timely to come forward with a specific strategy for celiac disease as well. We believe that it is particularly relevant that this petition has come in now, and we want it to remain open, so that we can analyze it and work on it further. Furthermore, given that we were celebrating the day of celiac awareness next week, we want to raise awareness of the reality of the millions of people living with this disease day after day.
Bogdan Rzońca
Thank you. And now we can return to Madame Patricia. Two minutes. For you? Yes, please.
Start.
Esther Roje
Señor Diaz. Ladies and gentlemen, chair, thank you very much. Thank you very much to the representative of the European Commission for her words, and thank you very much to Miss Monserrat and Miss Pisa as well for your support, for your explanations. I believe that today, we've heard something that's very relevant to many people. Everyone who's spoken has expressed clear consensus on the lack of diagnosis, the economic impact, the lack of food safety that is effective, and also the inequalities that exist between member states.
All speakers have recognized these challenges. And that brings us to a different moment in time, because now we're not calling into question what the problem is. The question now is, what do we do about it? The representative of the European Commission mentioned instruments and laws that they've also been suggested beforehand, but they're not very useful if they're not being effectively applied. Mention was also made of the fact that there are many national competences.
That's true. But that's precisely why the role played by the European Union is essential. Because when there's no coordination, what we have then is not diversity, it's inequality. Today, the reality is that access to treatment and patient safety continues to depend on the country where the patient lives, and that's not in keeping with the principles of equality that the European Union was built upon. Therefore, today, we're asking for the European Union to step in and play the role of the member states to coordinate, to guide a company, and to ensure that we come up with some responses at EU level.
Ladies and gentlemen, thank you very much. I'm very grateful for the decision to keep this petition open. We believe that it is a step in the right direction because it recognizes that we now have our work cut out for us, and we have full trust that this committee can continue to oversee this process and can continue to make progress towards tangible progress, both at European level as well as at member state level. Thank you very much indeed.
Great. Thank.
Bogdan Rzońca
Thank you very much, dear colleagues. This petition will remain open. Thank you very much for submitting it. We will be waiting for the commission to reply. Thank you very much.
06, says the chair. Item 12. No. Item 11. 0083 slash 2025 by Augustine Becerarajo from Spain on Duchenne muscular dystrophy.
The petitioner is not present. Therefore, I will give the floor to Digi Health.
Speaker 16
Thank you, honorable members, dear petitioner. The commission understands the difficulties encountered by patients living with rare diseases and their families. The commission is aware of the need to develop new effective treatments for rare diseases since about 95 percent lack an approved treatment. This need is also important for neuromuscular rare diseases such as Duchenne muscular dystrophy. Since 2017, the commission has been supporting 24 European reference networks, which are structured around broad thematic disease areas dedicated to rare, low-prevalence and complex diseases.
Speaker 14
A specific European reference network, EuroNMD, for rare neurological diseases is bringing together health care providers to treat patients with rare neuromuscular diseases, such as Duchenne muscular dystrophy. Today, the European reference networks include more than 1,000 to 1,600 specialist centers in 375 hospitals across all EU member states and Norway. The European Commission has also supported research and innovation in rare diseases for the past 25 years with about 5,200,000,000, which have been dedicated to research projects on rare diseases through the framework programmes for research and innovation. There are currently 34 products under development in the EU for Duchenne muscular dystrophy. They are so-called orphan designated medicinal products, which are eligible for free scientific advice from the European Medicines Agency and national and EU incentives for research and development.
Speaker 15
A new product called Duvitsat has been authorized by the European Commission for the treatment of Duchenne muscular dystrophy patients from the age of 6. In addition, the revision of the pharmaceutical legislation aims to address areas without treatment options, especially for rare diseases. It proposes increased scientific support and regulatory incentives for treatments addressing unmet medical needs. There are about 6,000 to 8,000 known rare diseases, including Duchenne muscular dystrophy, which have been addressed in several EU-funded research projects in the past years. Those projects support basic research and translational research, and they contribute to the understanding of the pathophysiology of Duchenne muscular dystrophy for the development of new therapies.
There are several projects on this disease under Horizon Europe 2021 to 2027 that address the development of gene therapies, the repurposing of drugs, and the use of artificial intelligence for the diagnostics of rare neuromuscular diseases. Finally, the Commission has also launched a European partnership on rare diseases for 2024 to 2030. It aims to improve the health of people living with rare diseases through better prevention, diagnosis, and treatments. Thank you.
Speaker 12
You, the president. Just.
To add, that the commission has made great efforts to find solutions to medical issues such as rare diseases or pediatric cancers, as well as mental health. At the December, we had some trialogues and tried to adopt this, that final adoption will be in October. But we were able to adopt pharmaceutical legislation, which really placed at the heart of it, patients in pharmaceutical products and also looking at non covered issues such as rare diseases. And this is really a paradigm shift if you compare it to what was happening in the pharmaceutical industry twenty, thirty years ago, and I think it should provide hope for patients with all types of rare diseases. So I really just want to send out a message to people with rare diseases that we want to send a message of hope.
Speaker 38
We're working with member states. We're working as members here in this parliament, and we're working with the Commission on this. Thank you.
Thank you. Thank you.
Sandra Gómez López
Thank you. We'd like to thank the petitioner for bringing this petition because it allows us to share, shine a light on an issue that affects millions of people across Europe. This specific illness doesn't only affect those who suffer from it, but also the whole family. It's a progressive degenerative disease, and one that does not have a cure. Rare diseases, and particularly those affecting people in childhood, are one of the biggest health care challenges that we face.
And while we may think they don't affect a large number of people, the impact that they have on these people and their families is enormous, and we have a responsibility towards these people to ensure better research and better coordination. Yes. We need to develop instruments on this, and this can be done through the orphan diseases legislation or the European reference networks and the work being done under Horizon Europe and other legislative initiatives. We also want to focus on the European network on rare diseases as a key effort that's being made here for patients and their families. All of this, however, is not enough or is moving too slowly.
There are huge inequalities in diagnosis, clinical access, availability of innovative treatment, and patients' access to care. So the European framework has to be enhanced in a number of different areas. First of all, public-private investment in biomedical research. Secondly, we have to ensure that research and innovation reaches all patients in an equitable manner regardless of where they are or their country, and we need to strengthen education, psychological, and social support to families. So we think this petition should remain open and that we continue with the legislative work on this that is currently underway, and also that the SANT committee should look at this petition as well.
Thank you.
Thank you, madam.
Thank.
Margarita de la Pisa Carrión
You, chair. Ladies and gentlemen, today, I want to speak on behalf of over 30,000 Europeans who have rare orphan diseases and speak on behalf of them and their family, including Augustine. He is a young boy of 9 years old with muscular dystrophy. This is quite common among rare diseases, but his treatment options are very limited and not particularly effective. We need to use our resources for research and targeted research to tackle this illness, and to ensure that they have proper, therapeutical tools.
That will give them hope. Here, the European Union can make a difference. We need to ensure that Europe is a leader in research, and works on the development and production of medicines to ensure that we have attractive incentives for this across Europe. We need to do away with bureaucratic obstacles, ensure that we can be competitive. The loss of competitiveness of our industry means people who suffer from these diseases will in turn lose hope.
In the pharmaceutical package, we're working on proposals for rare diseases, and we hope that the result of this work will ensure that biotech will be converted into better health care tools, particularly for diseases that are not covered, such as in this case. Patents also have to be taken into account. This is how progress is made through small steps. We need to focus on the patient to ensure that they have care and support, and that we also ensure support for their families. Sometimes, the cost for families is completely unaffordable.
Some people need care twenty-four seven. So we need to prioritize health care policies that will prioritize these families, to forget ideological differences, and to work together to ensure fundamental rights and that people can live with dignity. So, therefore, I think this petition should remain open. Thank you.
Very.
Bogdan Rzońca
Well done. The petition will remain open. And, let me inform you that we will address. So the petition will remain open, and that's it when it comes to eleven. Let me move on to item 12. Zero six nine four slash twenty twenty five by Olena Apologie Romania on improving access to amyotrophic lateral sclerosis treatment and clinical trials in Romania.
The petitioner is not here. I'd like to give the floor to the Commission, DG Health. DG Sand.
Agnès Mathieu Mendez
Thank you. Good afternoon. My name is Agnès Mathieu Mendez. I'm the head of the unit in charge of clinical trials. Dear honorable member, the petitioner, thank you for the opportunity to address the petition submitted by Miss Olena Apalage regarding access to amyotrophic lateral sclerosis treatment and clinical trials in Romania.
In fact, the commission shares the petitioner's deep concern for patients facing this devastating disease, and we certainly recognize the urgent need for equitable access to innovative therapies across the European Union. But I have to mention two issues. Firstly, you call for access to clinical trials. And in this context, at European level, our role in clinical trials is limited to improving the procedure. But it cannot, in any case, force any company, unfortunately, to conduct a clinical trials in specific countries.
The authorization of the trial remains a national competence. And even if we would like to make sure that we have multinational trials, does not mean that we can force company to do so. So we are aware that there are some clinical trials on ALS, but unfortunately, we have noticed that those trials are not taking place in Romania. Now the second element that I would like to mention is that there are also a few authorized orphan medicinal products to treat this disease. It's not that those treatments are a revolution.
They are slowing down the progression of this devastating disease. And I'm quite positive that when we have authorized medicine, they will reach the European patient. But here, we also touch on the national competence when it comes to the spending of cost for pharmaceutical products. It's clearly a member state to decide on which product they want to put the investment. Is it more on orphan medicine?
Is it more on other therapies? But I must say, even though at European level, we would like to encourage access to medicine through pharma reform and legislative changes, for the moment, the final decision to reimburse or not a treatment is a national competence in Romania. Now let's go on a positive note. We have a couple of initiatives which support access to ELAs treatment. It's very close to what my colleague said on Duchenne disease a bit earlier.
First of all, on the clinical trials, maybe I go to the topic that is related to clinical trials and next to the European Reference Network. On clinical trials, we have a new proposal for the EU Biotech Act, where we will revise the regulatory frameworks. And the idea is to make Europe more attractive to foster clinical research on innovative treatments. We want to encourage the multinational clinical trials to make sure that patients across the union would benefit from early access to experimental treatment. Because for the moment, we are lagging behind in clinical trials in the European Union, but we hope and we are confident that with our proposal on the Biotech Act, we will encourage and push more trials in the European Union.
Now, more concretely, for the patient, how can they see where the clinical trials are taking place? There is also an EU clinical trials interactive map available in 22 languages, where we can encourage all member states to promote this tool because this is where we can find which trials are taking place in Europe. And currently, there are 18 clinical trials on ALS actively recruiting patients in 11 member states. Not yet for Romania, but we cannot exclude it for the future. Now the next positive thing is also the European reference network.
This is where the European Union has funded a lot of networks in the past and will continue to do so. For rare disease, the European Reference Network on Neuromuscular Disease provides specialized expertise for ALS patients, where we foster the cross-border collaboration between the health care centres to have a better diagnosis and follow-up of the patient. And on research funding, I would like also to mention that the EU has invested €5,200,000,000 in rare disease research over the last 25 years, including on this specific disease. And there were two projects like Euromotor and Tutka ALS that were specifically dedicated to this devastating disease. So in conclusion, the Commission is actively addressing the gaps highlighted in the petition. By strengthening EN, simplifying clinical trials, fostering collaboration across the member states, we aim to turn hope into tangible progress for ALS patients in Romania and beyond.
Thank you.
Thank.
Speaker 20
Thank you for bringing it to be discussed at our committee. It shows what the impediments are for patients to have access to clinical trials and innovative cures, which are available in certain member states for people suffering from amyotrophic lateral sclerosis. We need to enhance cooperation and exchange scientific data. So I propose that it remain open so that we can monitor progress at the level of European cooperation, and make sure that everybody has equal access to innovative treatments.
Bogdan Rzońca
This petition will remain open. We are waiting for a written reply from the European Commission. Item thirteen, 2183/25 by Alison Field from Ireland on delays in providing assessment of need, AON, for children in Ireland. The petitioner is not here with us. Therefore, oh no.
We have a petitioner. The petitioner is in the meeting room, are they?
Bogdan Rzońca
We will be waiting for the petitioner. But in the meantime, perhaps it would be a good idea to give the floor to the commission, the DG for justice and consumers.
Like.
Bogdan Rzońca
That, we will use all the time that we have. You could take the floor now if you wish.
Speaker 31
Thank you, and good afternoon. I'm from the disability unit in digital justice and consumers. My name is Palma and Kolaf. We are currently finalizing our reply to this petition. And the main issue raised in the petition concerns the organization of the disability assessment in Ireland.
Speaker 32
And from this point of view, it should be stressed that in accordance with the EU treaties, the organization and delivery of education, health care, and social care services, including assessment of need, fall primarily within the competence of the member states. In addition, when it comes to the charter of fundamental rights of the EU, which is mentioned by the petitioner, the charter protects the rights of all children, including children with disabilities under its articles 24 and 26. However, the charter applies to the member states only when they are implementing EU law, which in our understanding is not the case in this particular matter described. At the same time, I would like to point out that in spite of the fact that, the main issues addressed in the petition relate to national competences. At EU level, there are different policy and funding instruments in place to support and protect the rights of persons with disabilities.
Speaker 28
On one hand, we have the strategy for the rights of persons with disabilities that was adopted in 2021 and which aims to improve the lives of persons with disabilities in the EU and beyond, and takes into account the diversity of disability, which is sometimes invisible. I'm glad to let you know that today, the European Commission adopted an updated strategy for the rights of persons with disabilities, which contains new actions and initiatives for the period up until 2030. And as part of the strategy, the commission will encourage mutual learning on disability assessment methods among the member states, which is closely linked to the subject of this petition. This, mutual learning would build on our positive experience from the disability platform, a forum that was set up in 2021, and it allows for exchange with the member states and the organizations of persons with disabilities where we discuss both the implementation of our strategy as well as the UN Convention on the Rights of Persons with Disabilities, to which all EU member states and the EU are parties. We are also working on the implementation of the European disability card and the European parking card for persons with disabilities, which will provide legal certainty on the recognition of disability status throughout the EU when cardholders travel in other EU countries.
Speaker 32
Still, the directive that establishes the card mentions that it does not affect member states' competence to determine the conditions for assessing and recognizing disability status. With regard to policies targeting children and protecting children, I would like to mention the EU strategy on the rights of the child, which serves as a comprehensive framework to ensure that children across the EU enjoy their rights fully and are protected from all forms of discrimination and harm. The commission recommendation on integrated child protection systems encourages member states to support children with disabilities and their families as early as possible to promote their full inclusion in the community. The European Child Guarantee also recognizes children with disabilities as one of its target groups and calls on member states to take their needs into account when designing measures to improve access to services for children in need. With regard to the funding instruments mentioned in the petition, the technical support instrument and the recovery and resilience facility,
I would like.
Speaker 32
To mention that in the period 2022, 2026, Ireland benefited from two projects under the technical support instrument. One related to the implementation of the European Child Guarantee in Ireland. The second one is related to inclusive education. With regard to the Recovery and Resilience Facility, around 15% of the measures included in the Irish National Recovery and Resilience Plan have a focus on children and youth. And lastly, I would like to recall that Ireland is a state party to the UN Convention on the Rights of Persons with Disabilities and has committed to complying with its provisions.
Ireland has also ratified the optional protocol to the UN CRPD, pursuant to which an individual or a group of individuals can under certain conditions send complaints before the UN Committee on the Rights of Persons with Disabilities. The conditions that need to be met for such a complaint include the need to exhaust all available domestic remedies. Another possibility for the petitioner is to contact the Irish Human Rights Equality Commission, which is the body in charge of monitoring the implementation of the UN Convention in Ireland. Thank you, and I hope you find the information provided useful.
Bogdan Rzońca
Thank you so much. What is that, petitioner? Ah, yes. Of course. Okay.
Alison Fields
Hello? Thank you. Thank you for listening to Charlotte and me. We truly appreciate it. My name is Alison Fields.
Under the Disability Act of 2005, every child in Ireland is entitled to an assessment of need within six months of the application. This assessment is the gateway to therapies, educational support, and health care. However, 20,000 children are waiting for an assessment of need, with an average weight of nearly 25, four times the legal limit. Some families have been told to wait up to 6 years. These children are losing the most critical early years of their development, while the state does nothing.
These delays constitute a direct breach of the EU Charter of Fundamental Rights, and we are calling on the European Committee on Petitions to direct the European Commission to investigate Ireland's failure as a violation of EU law, recommend that Ireland access EU technical assistance and funding to fix this broken system, and monitor Ireland's compliance. We desperately require your assistance. If an assessment of need is carried out early, support can help a child to live to his or her full potential. Ireland has neglected children with additional needs for years. The whole system is broken.
We need action taken on the assessment and no delays in Ireland. Our government is not providing a duty of care to our vulnerable children. The day my son, James, who is totally nonverbal and has severe autism, received his assessment after a two-year wait. That day, we were told, and I quote, you won't get him a school place for years, because the lists are so long. And they were right.
There was no care, no support given when we received his diagnosis. The past eight years, James has not received a regular therapy appointment. In reality, very few. For a primary school place, we received 18 rejections from schools, after a long battle, we finally got him a place. So presently, for this September, James has no school place.
And come this September, over 1,000 children in Ireland will have no school place. They are left excluded from our state simply because they have a disability. I would like to ask the European Parliament and the European Commission to do three things. First, investigate Irish Ireland's government's failure as a breach of the EU Charter of Fundamental Rights. Secondly, to invite the Irish government to respond to our petition.
And lastly, to direct the Irish government to access the European technical assistance and monitor the progress. Our children deserve better. There are over 20,000 children waiting for an assessment of need. Therefore, we plead with you today to review this crisis, the broken system, and help in whatever way you can to change and improve it. On behalf of myself, my family, and all the families trapped in this broken system in Ireland, thank you.
Speaker 21
Today, I am not here as a campaigner or an advocate. I'm here as the mother of Kyra. My daughter Kyra was put forward for an assessment of need in 2021. What should have been a straightforward process became a five-year battle. And in that time, there have been three separate attempts to assess my daughter's needs, and not one of them has been completed to date.
Kyra has not received a single therapy session. No occupational therapy. No speech therapy. No early intervention of any kind. We have been bounced from waiting list to waiting list at every single stage of her life.
And over two years, I applied for school because with a complete assessment of needs, the doors were closed before we could even knock on them. I applied to over 60 schools across the country. I stood in the protests. I slept on the streets of Ireland to secure my daughter an education. This is not just a system under pressure.
This is a system that has failed my child at every single stage of her life. And Kyra isn't alone. There's over 20,000 children waiting for an assessment of need in Ireland. This isn't just a delay. It is a denial of their human rights.
Article 21 of the EU Charter prohibits discrimination on the grounds of disabilities, yet families like mine are forced into courtrooms to access the same childhoods that their nondisabled peers access very naturally. The state spends on average 27,500 per case defending itself against these very children. This could and should be spent on supporting these children instead. Article 24 tells us that children have the right to care, protection, and to have their voices heard. But how can children like Kyra be heard when they are denied the very supports that would allow them to access communication devices?
Article 24.1 of the EU Charter guarantees every child the right to be heard. Article 24.2 requires that the best interest of the child be the primary consideration, but that's not happening. Children like Kyra and thousands like her are being left waiting years for assessments of their needs. And without an assessment of needs, these children are denied the very thing that they need to speak up for themselves so they are not just waiting for services. They are being left without a voice.
This is not just an administrative failure. It is a failure to recognize disabled children as subjects of their own rights. It is layered systemic denial of participation, of communication, and of the dignity of the rights. What we are living through is not just a broken process. It is a breach of fundamental human rights at multiple levels.
Because, sorry, because while systems delay, childhoods don't, time doesn't pause, and every year that passes without support for my daughter is a year that she cannot afford to wait, and neither can the 20,000 children behind her. We are asking you to please support us in this petition.
Thank.
Speaker 20
you. I'd like to thank you for presenting this very important petition petitioner. Health is the competence of member states, but children's welfare and their timely assessment are our common responsibility and our highest priority. We should, at the European level, see how we can substantially support the national competent authorities to deal with such challenges. So what I propose is that it remain open, and then we can continue monitoring this issue and also support the contribution of the European Union to improving the situation.
And at the same time, I think it would be good to send this as a point of information to the SAND and AMPO committee. And as petition committee, it would be useful for us to send a letter to the national competent authorities so that they send us updated information on the measures they will take, and also measures already adopted. Thank you.
Speaker 30
It's been my honor to spend the last 2 days with these incredible parents. They represent four families out of the 21,762 in Ireland waiting for an assessment of need. Their dignity, the power of their advocacy, the pain of their testimony are overwhelming. What they want is the most unradical of aspirations, the best for their child. These parents have had to campaign to pursue legal action to open up the most intimate details of their lives to public scrutiny, with the hope that someone in authority will take action to come here to this parliament because their own government would not listen.
It is perverse that to secure the best for their children, they must speak to lawyers and politicians, rather than medical and educational professionals. Their children do not belong at the back of the bus in the Happy Place to be unseen and unheard. They are full and equal citizens of the Irish Republic and of the European Union, and must be treated as such. So I am calling on colleagues and on the Commission to act. First, keep this petition open so families know that this parliament stands with them.
Second, refer it urgently to the EMPL and SAND committees and to the Intergroup on Disability. Third, for this committee and the commission to write directly to the Irish government, making it clear that the systematic denial of children's rights is a violation of EU law. Fourth, for the commission to deploy urgent technical assistance to Ireland on the assessment of need practices as it has done in Belgium, Greece, Lithuania, and Latvia. Fifth, for the commission to develop a common core standard of rights-based disability assessments across the EU, grounded in the EU Convention on the Rights of the Child. Everyone of these actions has been recommended by a study conducted by this very committee in 2023.
Ali, Charlotte, Rebecca, and Jane did not come to Brussels to be noted and filed. They came because their children and over 21,000 others are running out of time. Colleagues, your vote today is a choice to be another politician that has heard them or be one that has finally acted.
Speaker 22
Thank you very much, Chair, and I appreciate having the opportunity. I'm not normally a member of this committee, but I wanted to come in to support the incredible women that are here from Ireland campaigning for justice on behalf of their children and not just their own children, but as they said so eloquently in a meeting we had yesterday, all the other children. It's actually hard to come up with the words to describe a situation where 20,000 children are awaiting an assessment of needs, something that they should be able to access as a right. And we are a country that has a surplus. We have billions in surplus in Ireland, and yet we have 20,000 children awaiting an assessment of needs. And when those children actually get the assessment of needs, they would also be then on a further waiting list for various other services, whether it's occupational therapy, speech and language, or physiotherapy.
Every child has a different need, and it's a constant battle, and there's a constant waiting list in Ireland. It's something that I've come across not only in my time as an MEP, but previously when we were in our national parliament and before that at local government level. And, unfortunately, it seems like every single year, the situation gets worse. And I always describe it as children being treated as second class citizens because that is exactly what is happening. So many children and parents take for granted that when you get to the age of five, you'll be going on to school.
You're talking about starting school. You might go in for a day to have a trial. It's all very exciting. And, yes, if you're a child with an additional need, you don't know when you're going to be starting school. And then you have to take whatever school place that might be offered, even if it's not suitable, even if it's very far away from your home.
So this we have to break that cycle, and I commend the women for coming here, for coming to the petitions committee and stating their case. They shouldn't have to do that, and I think it's important that we acknowledge that the people shouldn't have to come to this level. And as MEP has said, people pouring out their lives. It's not fair to ask anyone to do that, but I want to support them. I want to support the asks of my colleague, MEP O'Riordan.
I want to see this petition kept open. And the other, I think there were 5 asks of, that he had. I want to support all of those. I also want to say that we are both as well on the MPL committee, so I strongly support this being sent to the MPL committee. I'm also a member of the Intergroup on Disability and would be happy to support it and raise it there, if it's sent to that group as well.
So I just really wanted to come here to support the women, in their ask, and just to thank them as well for standing up for all of the children who are currently on a waiting list and who face into other countless waiting lists as well once this battle is done. So I just want to support them again. Thank you, chair. Thank.
Bogdan Rzońca
you. Now here, we can return to madam practitioner. You have two minutes. Last concluded.
Speaker 29
So the EU is a party to the UNCRC and the UNCRPD. You are bound by a duty of sincere cooperation. Children have a right to be heard under article 12 of the UNCRC and article 7.3 of the UNCRPD. Article 26 of the EU Charter of Fundamental Rights outlines that children have a right to participate. Irish children with a disability have no participation.
There has never been a single child, disabled or not, who has been consulted in relation to the disability act, not by the state, and not by an NGO. This isn't a matter of tokenism. This is a matter of systemic denial and discrimination of the rights of children in Ireland. We plead with you to support this petition, because supporting our children in accessing their fundamental rights as enshrined in the charter not only lifts our children and enables them to realize their own rights, but it also ensures that Europe's human rights record is not tarnished by this rapidly deteriorating crisis. We can't say that children's rights are being upheld in a country that consistently silences them and denies them access to robust forms of communication.
Thank you.
Bogdan Rzońca
Okay. Thank.
Thank you very much. It's all clear. Thank you very much for your testimonies, for your petition. This petition will remain open. And as requested, a letter will also be addressed to Ireland.
We will ask the Irish government about the situation. We will also be waiting for the European Commission to give us an updated reply. I think that we at this stage, I'm giving you the best message I can give you. Thank you very much for being here, and fingers crossed. Good luck.
The very best of luck.
Speaker 34
Thank you, chair. Just on the five asks, keeping the petition open, you've recommended that referring it to MPL and Sand Committees. Just wanted clarity on that. You've mentioned writing to the Irish government. That's positive.
The commission to deploy urgent technical assistance to Ireland is also a requirement, and also for the commission to develop a common core standard of rights-based disability assessment across the EU. So there are five asks. You referenced two of them. I'm just wondering if you can just reference the other three. Thank you.
Okay. Okay.
Bogdan Rzońca
Thank you. As suggested, we will send it. Emperor has already received a letter on this, so we are just left with Sant, and we will do it. I hope it's all clear.
Bogdan Rzońca
Thank you very much. That concludes item 13. We will move to the final point. Is there any AOB? Is there something you'd like to add?
If not, this concludes our long meeting today. I will see you tomorrow, 9 a.m. We will continue our meeting tomorrow. Thank you very much. The chat kindly thanks.
Interpreters, have a great evening. Everyone, enjoy coffee or enjoy a walk. See you tomorrow.
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