A third letter to President Macron

On 12 October 2018 we sent a third letter to French President Emmanuel Macron.

A third letter to President Macron

12 October 2018

Monsieur le Président de la République Française
Attn: Mr. François-Xavier Lauch
Palais de l’Elysée
55 Rue du Faubourg Saint-Honoré
75008 Paris
France

Telephone: 01 42 92 81 00

Re: Lysiane Pakter – a French baby with a rare disease

Dear Mr. Lauch,

I am writing in response to your letter dated 22 August 2018, reference #PDR/SCP/BCP/BR/B093085, regarding Lysiane Pakter, our daughter, who suffers from a rare disease. On 19 May 2017, L’Assurance Maladie denied Lysiane her legal right to obtain a safe and medically proven rare disease treatment in Germany. L’Assurance Maladie’s rejection was a violation of EU cross-border healthcare law, a fact confirmed by a number of neutral and independent international organizations and experts.

Your letter suggests that President Macron was not aware of this situation involving our daughter Lysiane until now. However, in January of this year, the European Patients’ Forum, the largest patient advocacy organization in all of Europe, sent a letter to President Macron specifically alerting him to it. The European Patients’ Forum, which describes this situation as “shocking”, wrote to President Macron on 16 January 2018. They point out that the European Commission’s SOLVIT network formally agreed with us, Lysiane’s parents: L’Assurance Maladie, in rejecting Lysiane’s application for cross-border healthcare in Germany, violated EU law (SOLVIT Case #2569/17/DE). The European Patients’ Forum also included, with their letter to President Macron, two additional letters of support regarding our daughter Lysiane: (1) a letter dated 17 November 2017 from EURORDIS, the largest rare disease patient organization in the EU; EURORDIS has pledged to accompany us, Lysiane’s parents, in court, all the way up to the European Court of Justice, to reverse L’Assurance Maladie’s illegal rejection; and (2) a letter dated 18 December 2017 from a senior Member of European Parliament, Ms. Françoise Grossetête. Ms. Grossetête was the European Parliament’s special rapporteur for the 2011 Cross-border Healthcare Directive; she knows this law. In her letter of support, Ms. Grossetête confirms that L’Assurance Maladie’s rejection was legally unfounded, and calls this situation involving our daughter Lysiane “unacceptable”.

I can verify that President Macron knew about our daughter Lysiane, and that President Macron had all three of these letters concerning Lysiane almost one year ago, because you yourself, on behalf of President Macron, personally responded to the European Patients’ Forum. In your letter, dated 9 February 2018, reference #PDR/SCP/BEAR/B015095, you told the European Patients’ Forum to “Rest assured that the Head of State is giving his attention to this matter involving Lysiane Pakter” (“Soyez assurée de toute l’attention portée par le Chef de l’État à la situation de Lysiane Pakter”). In this same letter, you promised the European Patients’ Forum that they would be kept informed regarding Lysiane’s case. Unfortunately, they have heard nothing. The European Patients’ Forum recently followed up by submitting a formal report of Lysiane’s case to an official EU Parliamentarian Committee, which has been mandated by the European Parliament to study the implementation of the EU’s 2011 Cross-border Healthcare Directive. L’Assurance Maladie’s rejection of our daughter Lysiane’s legal right to a highly specialised and medically proven rare disease treatment in Germany represents a notable and particularly shameful failure by an EU Member State to respect the 2011 Directive. As such, Lysiane’s case has now entered into the European Parliament’s official documentary record.

Ms. Grossetête has followed up as well. Ms. Grossetête, who is intimately familiar with the 2011 Directive, has recently sent a detailed letter about our daughter Lysiane to the European Union’s Health Commissioner Dr. Vytenis Andriukaitis, directly alerting him to this flagrant violation of EU cross-border healthcare law. Ms. Grossetête also wrote a separate letter to Ms. Marie Fontanel, President Macron’s health advisor.

Mr. Lauch, neither you nor President Macron know our daughter Lysiane, but at this point you know enough: Lysiane is a French baby; she suffers from a rare disease; L’Assurance Maladie, in spite of EU law, and in defiance of all logic, illegally rejected Lysiane’s right to receive a safe, highly specialised, medically proven and cost-effective rare disease treatment in Germany. This illegal rejection must be reversed. The longer it takes to reverse it, the more poorly it reflects on the Macron government – and at this late date, President Macron can no longer say that he didn’t know.

I am including once again a copy of our heartfelt and detailed letter to President Macron, dated 23 February 2018, concerning our daughter Lysiane. We respectfully request that you and Ms. Fontanel work with President Macron to finally resolve this situation and put an end to this additional and unnecessary suffering which we as parents are facing. Thank you.

Sincerely,

Philippe Pakter
2 rue Gérard Maire
69100 Villeurbanne
France