2024-08-07 08:20:56
A patient’s struggle to access unfunded medicine.
¿What would you do if you were diagnosed with a rare disease and your Community Health Service denied you the only pharmaceutical option approved by the health authorities for your treatment? Indeed you will fight to the end, just like the storyteller I came to tell you.
It all started when a patient was diagnosed with Leber hereditary optic neuropathy (LONH), a disease that involves loss of central vision (blindness) and atrophy (degeneration) affecting both eyes. Well, say the patient told the Extremadura Health Service about finding a treatment with the trade name Raxone, which helps to activate energy production, restore the work of mitochondria affected by mutations and prevent cellular damage and loss of vision .
This treatment was rejected by the Compassionate Use Committee, urging him to provide documentation and data, as his doctor had done. However, this was of little use, as the President denied that he had given the medicine again, at that point the patient decided to go to court, which, at first, ruled in his favor, because on October 3 In 2022, a judgment is made. filed by the Administrative Court No. 2 of Mérida. In it, the right to have the treatment provided by the Health Service of Extremadura is recognized, understanding that the request written by the Administration meets the requirements: prescription, report of need for rare disease treatment, duration and informed consent. That is, as the patient said, what follows are 49 cases in which, according to the Spanish Medicine Agency, access to prescribed treatment.
Subsequently, the Government of Extremadura appealed that judgment, which was annulled by the Supreme Court of Extremadura when it supported the aforementioned appeal, understanding, among other areas, that the lack of authorization of the mentioned drug does not affect health and much life; also accused of non-violation of the right to equality saying that medicine has not been distributed in Extremadura and it is not known how many patients from other Autonomous Regions have been denied or authorized.
However, the patient, as I told you before, fought until the end and the case was sued in the Supreme Court, which finally agreed with him, understanding that the decision of the Supreme Court of Extremadura was made against the principle of indifference. Considering that the burden of verifying the individual circumstances of other patients benefiting from the prescription of medicine should not fall on the patient, nor the refusal of the medicine cannot be justified due to the fact that he is not among those who have funds with everybody. money. Well, with this already 50 orders were issued for the drug Raxone. María Castro Telado. Prosecutor attached to the Prosecutor’s Office of Sabadell
#Health #Health #Medicine