Ana Coral Villar is 51 years old and suffers from Von Hippel-Lindau disease, a rare genetic pathology that causes the appearance of tumors and cysts in several organs. A chronic, progressive and incurable disease, which requires patients to undergo … difficult and ongoing surgical procedures to stop irreversible damage. She has been battling the disease for three decades and has had nine operations.. It’s at the limit. There is a drug, belzutifan, which is already administered in other parts of the country. The Toledo hospital refused him. Ana Coral Villar’s body can’t take it anymore. After nine neurosurgeries since the age of 21, the last in 2023, doctors warn him that going under the knife again presents an extreme neurological risk. His functional situation is very serious: he cannot control his head, he cannot focus his eyes, he can only write with his right hand and he suffers from multiple neurological disabilities.
Despite this, the Toledo University Hospital Complex has decided to deny access to belzutifan, an orphan drug authorized by the European Medicines Agency in February 2025 for patients with Von Hippel-Lindau, and which is already used in other autonomous communities in the country with positive results.
In Toledo, the answer was different: surgery or nothing. “They decided that either my sister would have surgery or nothing would be done for her.” He who raises his voice is Karine Villar, sister of Ana Coral, doctor, vice-president of the patients’ association for more than two decades and one of the people who know this disease best in Spain.
“They decided that either my sister would have surgery or nothing would be done for her,” he denounced in statements to ABC. “And this, after nine neurosurgeries, with a disability rate of 96% and with the real risk of losing what little he has left, is simply unacceptable.”
Von Hippel-Lindau, this rare disease from which he suffers Ana Coral Villar, This forces him to live with recurrent tumors in the central nervous system and other organs. Since the age of 21, he has gone through a constant medical pilgrimagewith surgical interventions that left serious consequences: cranial nerve palsies, severe ataxia, respiratory failure, paralysis of the vocal cords, hemiparesis and hearing loss in one ear.
During the annual check-up in October, the MRI confirmed new tumors in the cerebellum and a large cyst compressing the brainstem, a potentially fatal situation. Ana Coral, aware of what another intervention entails, made a firm decision: not to undergo another operation.
A medicine exists. But not for her. Belzutifan is an orphan medicine designed specifically for this disease. Its authorization is conditional, as is the case for many expensive treatments, and allows its use while clinical evidence continues to be collected.
“Patients are already taking it in Albacete, Madrid, Andalusia, Castile and León and Catalonia,” explains Karina Villar. “In some cases they come from clinical trials and they do very well. There is stabilization and reduction of tumors. Why not here?
The hospital’s official response is based on profitability criteria. A report that outrages the family. “They talk about humanization, but then they send you an economic report telling you it’s not profitable. Profitable according to what? “We are talking about a person’s life,” he denounces. Karine. “In other places it is profitable, but in the case of my sister, who has already been through nine hells, it is not.”
Ana, 16, kisses her sister Karina
The family tried every avenue possible. Buy the medicine in other countries, request exceptional authorization, contact the Spanish Medicines Agency. Always the same answer: only the hospital and the autonomous community can request it and assume the cost. “Legislation prohibits purchasing it outside for safety reasons. But if my sister must die, what safety do I care about? We already have the worst scenario,” laments Karina.
Meanwhile, time is running out. The cyst continues to grow. The brainstem remains compressed. And the surgical alternative invoked as “immediate treatment” has not been implemented for months. “Immediate? The MRI is from July, the answer comes in November and my sister is still at home. “I immediately call her something else,” he complains.
Strength and love
Karina Villar does not hide her indignation: “This country cannot function like this. Every community must take care of its patients. “We cannot talk about personalized medicine without focusing on a particular person.” Ana Coral doesn’t want to die. She wants to live without undergoing a tenth surgical operation which, she knows from experience, can leave her speechless, motionless or lifeless. The family does not give up. He hasn’t done it in 30 years and he won’t do it now. Karina has a lot of strength and love to continue fighting for her sister. What is missing this time is not a medicine. It’s the will.
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