Some days ago we saw you appeal to the European Commission to address the needs of 30 million Europeans and put forward a strategy for rare diseases. In the first instance, do you think that enough work is being done by member states in this sector, and secondly, if not, do you think that the EU can offer direct assistance in this sector?
Certainly when it comes to sectors like this, there are always things which we still have to do. We would gain a lot if we come together as a European Union to fight these challenges on rare diseases. That’s why on the day dedicated to rare diseases I, together with foreign colleagues with whom I form part of a European network, appealed through a letter to the European Commission to push forward a holistic European strategy in this regard.
We have cases where people suffering from rare diseases find it difficult to access certain services because the internal market and what is offered in different member states is very fragmented, so it’s very important to address this. A holistic strategy will be very important in this regard.
There are 30 million people suffering from rare diseases living in Europe This number isn’t a joke, nor is it a small one, and we need to see that we can offer the necessary services for them, even when it comes to reaching a diagnosis which many times takes time to happen.
For all this we need more research, more collaboration, and more coordination together as EU member states and we need to see that in laws and policies like the European Health Data Space, which relates to increased sharing of information and data between member states in the health sector.
A few days ago, you spoke about the collaboration with the Directorate-General for Research and Innovation, particularly Deputy Director General Joanna Drake, specifically about the EU Cancer Mission. What type of work is going to happen in this sector?
Firstly, I must salute Joanna Drake who is Maltese like us and who does a great honour to us in her work in the European Commission.
Sometimes people ask me, are you going to solve cancer? Directly, I definitely won’t, especially as I do not come from a medical background but as policymakers we can certainly contribute.
There are funds through Horizon Europe which relate to Research & Innovation between EU governments, the private sector, and researchers to ensure that we can find solutions for the challenges, like cancer, before us.
But it’s not just solutions: it is also important to give services. We need to give holistic services to cancer patients, their families who are also suffering, and to cancer survivors.
When I speak to patients or cancer survivors across Europe, including in Malta, they mention how much of a challenge it is, for example, to access loans.
So I look forward to keep implementing things together, even through the Covid-19 Post-Pandemic Strategy Committee. It is important that we care and learn from the impacts there were on people who have had cancer, what services they tried to seek out and didn’t manage to, why they didn’t manage, and how this can be addressed when going forward in situations when there is a shock to a system.
Some days ago – on 21 March, to be precise – we celebrated World Down Syndrome Day. We know that you do a lot of work in favour of rights for people living with a disability. What work is going on in this regard?
I want to first salute the Down Syndrome Association Malta, with whom I had a meeting some days ago. There are people in the committee who have Down Syndrome, but also parents of children with Down Syndrome. When we look at the disability sector we have to keep in mind the ‘nothing without us’ principle. Our politics has to include people with a disability, and it’s important to listen to their voices directly.
I form part of the Disability Intergroup within the European Parliament, which is a forum made up of MEPs from different countries and political groups where we put forward policies and amendments on certain files to ensure that there is inclusivity and equality in favour of people with disability.
I form part of the Committee on Transport and Tourism and the Committee on Industry, Research and Energy (ITRE) within the European Parliament and I always see how our transport and technology needs to be more accessible to people with a disability and more facilitating for their life.
On the day dedicated to Down Syndrome, we had people of different nationalities who live with this condition who came together and served us coffee – a cute activity, but one which also shows that it is important to create interaction and prompt a stronger self-esteem for these people.
Locally this is the first legislature where we have a law which permits the introduction of gender quotas in order for us to have better representation of women in Parliament. You were one of those who worked on this law. What do you think about the results this law is leaving in Parliament?
These aren’t gender quotas, but rather a positive mechanism. The general election was as usual and then, for the first time, we had this mechanism which gives an increase in seats if there isn’t a 60-40 balance between both sexes. In this case, the female sex was under-represented – if men were to be under-represented then it would apply for them.
I was part of the committee which put forward this reform before I was an MEP, and people do point out to me that I got elected without needing a mechanism. Yes, it’s true but we saw that locally we had a very low number of women in Parliament, and that there wasn’t the representation to reflect the population, so it was important for us to act.
There were people who agreed with it and some who were vociferous against it and said that women shouldn’t be in Parliament as a number. I agree that they shouldn’t be a number, but we had to do something concrete to give a platform to women who are interested in being in Parliament.
My message is refer to the women in the PL and the PN who were elected for the first time: let’s observe their work and see whether these women will be elected automatically without the need for this mechanism in the next election, as I believe that once people have a platform, if it is used well it can give them a boost and an advantage for the next time.
In your work, you handle concepts related to gender, including how EU funds can be better spent in this regard, and also in how women can be given better opportunities to enter STEM careers. Why do you feel that you need to focus a substantial part of your work to this sector?
Equality is a requirement on paper for the majority of EU member states, but there are areas where there was regression or where rights aren’t as strong as other areas.
It is a reality that first and foremost, rights related to equality are not present everywhere. As long as there is one country or region in the world which doesn’t practice equality then we have what to do.
We are speaking about a matter where there can be laws – and they are there in the majority of countries – but where there could be other obstacles which means that rights which are down on paper cannot be implemented or enforced effectively.
There is always work to be done.
An example is in STEM careers: we get more women graduating in the sector than men, but in careers the number of women is then lower than men. So we need to ask, why is this happening?
On this, I am Standing Rapporteur on Gender Mainstreaming in the Committee on Industry, Research and Energy (ITRE) at the European Parliament, and together with other colleagues, we work to see that laws and policies adopted by the EU have more sensitivity to the gender aspect – not necessarily in favour of women, but in favour of gender equality.
We were recently talking about STEM and about the issue that there are fewer women in the sector, and we had a debate where we heard directly from an older scientist who explained her journey and the obstacles she faced. She was lucky that she had support from her family. But support shouldn’t be just family – it has to come from the workplace too.
If we have fewer women in the digital and scientific sectors, we need to use EU Cohesion Funds to see how to address this existing gap. However, it also means that those funds need to be used on matters such as domestic violence and on helping women coming from regions where the geography – like in the case of our islands – is an inherent disadvantage.
There must also be provisions related to LBTIQ rights: we cannot give funding to areas which are hostile towards the LGBTIQ community.
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