Eliminate the obstacles rare disease patients face when trying to access rare disease care

Eliminate the obstacles rare disease patients face when trying to access rare disease care

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Stichting Pierre Robin Europe (the Pierre Robin Europe Foundation) started this petition to The European Commission EU Health Commissioner Stella Kyriakides

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Here in civilised 21st century Europe, will we make a commitment to ensure that every innocent child born with a rare disease receives the best treatment possible? Yes? Or no? Ultimately it comes down to that one question.

Rare disease patients desperately need cross-border healthcare!
One of the first painful lessons that a rare disease patient learns is that highly specialised experts, and highly specialised rare disease treatments, are unlikely to be found in the local hospital. Cross-border healthcare is crucial for rare disease patients; they have to rely on it in a way that other patient populations do not.

The 2011 Directive was supposed to finally remove the obstacles
The EU’s 2011 Cross-border Healthcare Directive promised to finally facilitate access to cross-border care for the 30 million women, men, children and babies who suffer from a rare disease in Europe today. The 2011 Directive declared that EU citizens had the right to access healthcare anywhere in Europe, without facing undue resistance, obstacles, obstruction or delay.

Cross-border healthcare for rare diseases makes financial, medical and moral sense
Firstly, cross-border healthcare makes economic sense. Why spend precious and scarce tax monies duplicating a complex rare disease treatment that will only serve a small local population? Secondly, cross-border healthcare makes scientific sense, since healthcare personnel in a center of excellence will see more patients and will come to understand the full spectrum of these rare conditions, gaining important experience along the way. Thirdly, approximately 85% of rare disease patients are children. Prompt treatment is critical, because children grow and develop rapidly, and one does not want to miss an opportunity to intervene when it will be most efficacious. Putting barriers in the way of highly specialised rare disease treatments is especially cruel since the parents are already overwhelmed with their child’s special needs, with the care of any siblings, and with the need to earn a living.

EU Member States CONTINUE creating obstacles to cross-border care!
Unfortunately, the most recent official reports on the 2011 Directive from the European Commission, from the European Parliament, and from the European Court of Auditors, together indicate that the 2011 Directive is being used very, very little – and that when EU citizens do try to use it, EU Member States are continuing to raise unjustified obstacles to prevent the patients from achieving their goals.

Rare disease patients are the ones hardest hit by the obstacles
Obstacles placed in the way of cross-border healthcare have a disproportionate impact on EU citizens who are already struggling with a rare disease. This is out of step with the 2030 Agenda for Sustainable Development; the UN High Commissioner for Human Rights reminds us that the 2030 Agenda’s commitments to “leave no one behind and to reach first those who are furthest behind are founded on the human rights principles of equality and non-discrimination, and of prioritizing the vulnerable and marginalized in society”. Rare disease patients should be prioritized, not burdened further.

The European Commission is responsible for enforcing EU law - it's your job!
The European Commission declared in its official statement 2017/C 18/02 that it is the European Commission’s job to enforce EU law: “The European Union is founded on the rule of law and relies on law to ensure that its policies and priorities are realised in the Member States. The effective application, implementation and enforcement of the law is a responsibility entrusted to the Commission by Article 17(1) of the Treaty on European Union.” And former EU Health Commissioner Vytenis Andriukaitis made a solemn promise to the European Parliament: “I would like to stress once again that the Commission will take deliberate action when the spirit and letter of the Directive is not upheld.”

We, Europe's rare disease community, and our allies, ask you, EU Health Commissioner Kyriakides, to enforce EU law!
EU Health Commissioner Stella Kyriakides, 30 million EU citizens suffer from a rare disease. Their legal right to access highly specialised rare disease treatments should be respected. As requested in our letter to you dated 5 December 2019, we ask you to launch an Infringement Procedure against France for violating EU law, at the expense of French babies suffering from a rare disease – and to take deliberate action whenever EU Member States violate the cross-border healthcare rights of Europe’s rare disease patients.

SIGN THE PETITION
This campaign is supported by the 30 highly respected signatories who included their names in the letter we sent you on 5 December 2019, and by all who sign this online petition. Thank you.

0 have signed. Let’s get to 200!
At 200 signatures, this petition is more likely to be featured in recommendations!