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Application to ECtHR on patient’s exclusion from orphan drug programme

The HFHR has prepared an application to the European Court of Human Rights for S., the parents of a minor patient excluded from a state-financed programme for the treatment of an ultra-rare disease.

Since the annual cost of the treatment exceeded million zloty, the parents were unable to pay for the continuation of treatment of their son, which resulted in the child’s death. S. are represented before the ECtHR pro bono by Ms Paulina Kieszkowska-Knapik.


The applicants argue that Poland violated Article 2 of the Convention for the Protection of Human Rights and Fundamental Freedoms, which guarantees everyone right to life. According to the existing jurisprudence of the ECtHR, domestic authorities should make all practicable efforts to protect the life and health of patients, in particular by ensuring them sufficient access to medical services. In the case of S.’s son the state has failed to perform this obligation.

Unappealable decision?

The application also argued that the threat to the applicants’ son life had resulted from the absence of an appropriate state-operated framework for the coordination of medical services. There are major defects affecting the works of the Ultra-rare Diseases Coordination Team, which is responsible for the admissions of patients to drug treatment programmes and evaluation of treatment’s efficacy. According to the parents, the Team may make arbitrary decisions, which does not ensure fair proceedings for the patients. “Notably, the rules of the Coordination Team’s operations prevent any contact with patients whose lives depend on the Team’s decision. The patients and their loved ones are thus deprived of an effective right to present arguments in support of the reasonableness of their admission to life-saving treatment programmes”, says Michał Kopczyński, a member of the HFHR’s legal team.

“The absence of any appellate measure that could be brought against a decision of the Coordination Team, which is crucial for a patient’s life and health, is also clearly a violation of Article 13 of the Convention”, Foundation’s lawyer Katarzyna Wiśniewska adds.

Review needed

In an opinion to the Government-proposed amendment to the Medicine Reimbursement Act submitted in November 2016, the Foundation called for setting up a framework for the operations of coordination teams that would satisfy the requirements of both the Constitution and Convention (that is in a way that ensures objectiveness, transparency and proper appellate remedies).

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