Vytenis Andriukaitis | Photo credit: Natalie Hill
By
Martin Banks
Martin Banks is a senior reporter at the Parliament Magazine
02 Mar 2018
Speaking in Parliament, Andruikaitis told this website he was concerned about the potential implications of the UK leaving the EU for continued cross-border cooperation in the health sector.
Andriukaitis cautioned that Brexit could put at risk the UK’s current close collaboration with the EU in this sphere, such as its participation in early warning systems which monitor public health threats in different parts of Europe.
The UK will participate in such schemes until at the end of March next year at least, but the Commissioner said the situation was “not clear” after that date.
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He said, “Do not ask me today what is going to happen to such cooperation in the health domain when the UK eventually leaves because, to be honest, I simply do not know.
“This is obviously causing uncertainty in this sector but it is really up to the UK to come forward and explain its position.”
One example he cited is the leading role the UK currently takes in the so-called European reference networks, or ERNs, which are aimed at people with rare diseases.
“The UK’s participation in ERNs is unquestioned at present but no one really knows what will happen after the end of March 2019,” said Andriukaitis.
There are 24 ERNs across Europe and one year after they were launched he said the scheme had been a big success.
The official was in Parliament on Wednesday to speak at an event to mark European Rare Disease Day, which aims to raise awareness of rare conditions, both among the public and health practitioners.
He said, “One of the challenges is the selection and integration of new members in the 24 current ERNs.”
He admitted that public awareness of ERNs is still relatively low and this was something the EU, member states and even hospital managers had a duty to address.
“We need to ensure that new members bring new knowledge to the ERNs and increase their geographical coverage so that more patients have access to the ERNs in their own country.”
He said, “ERNs need to become stronger, more productive and more readily accessible.
“I am aware that we still have a great deal to do and collaboration across all the different European healthcare systems is not always easy and sometimes bureaucracy can be extremely burdensome.
“But in the face of such difficulties we have to be mindful of the main goal: to increase the likelihood of early and accurate diagnosis and the effective treatment of patients suffering from rare diseases.”
The event was organised by the European Reference Network with the support of EURORDIS. The results of an ERN-BOND White Paper on diagnosis were released at the meeting, showing the need for better awareness of rare diseases.
One disease highlighted was osteogenesis (OI), also known as brittle bone disease, a genetic disorder that affects mainly bones.
Andriukaitis said that relatively lack of awareness of the disease, including among some health practitioners themselves, meant that the symptoms are sometimes mistaken for child abuse.
The ERN-BOND White Paper says, “The challenges in diagnosing OI directly impacts patients as delays can lead to inappropriate or delayed management or even unnecessary interventions.”
“Surveys show that patients and families as well as physicians had limited awareness of OI,” it adds.
“Symptoms are sometimes confused with those of child abuse given that they are not always evident to doctors, nurses or emergency personnel who are not trained in recognising the disease.”