We're using treatments from over twenty years ago while other cancers race ahead
Each year, thousands of Spaniards receive a brain tumor diagnosis that will reshape every corner of their lives — yet the treatments awaiting them are the same ones that existed two decades ago. José Luis Mantas, diagnosed with oligodendroglioma in 2022 and now president of the patient association ASTUCE, has turned his own fracture into a public reckoning with a system that allocates hope according to statistics rather than suffering. On World Brain Tumor Day, he and those who share his diagnosis ask not for miracles, but for the basic dignity of research that keeps pace with their need.
- Patients with brain tumors in Spain are being treated with therapies over twenty years old while other cancers have seen dramatic therapeutic advances — the gap is not accidental, it is structural.
- Between 4,000 and 6,000 Spaniards are diagnosed each year, yet no national registry exists to track them, leaving the disease statistically invisible to the institutions that allocate funding.
- Seven in ten Spanish citizens believe brain tumors receive too little media coverage, revealing a paradox: a pathology widely feared but rarely seen, mourned privately and forgotten publicly.
- The human cost is not abstract — seizures, cognitive erosion, surgical trauma, shortened lives, and families quietly reorganizing themselves around an illness that rewires everything it touches.
- ASTUCE is calling for coordinated action: greater public visibility, dedicated research financing, and accelerated access to experimental treatments and clinical trials for those who have no time to wait.
On July 10, 2022, José Luis Mantas received a diagnosis of oligodendroglioma — a rare brain tumor that originates in specialized cells of the central nervous system and announces itself through seizures, cognitive fog, and epileptic episodes. The news arrived, as he describes it, like a door closing on the future he had imagined. He learned to live under the permanent shadow of mortality, watching it ripple outward into his family, his work, and his sense of self. His partner's steadiness and his own mental resilience became the anchors that kept him from drowning.
Today Mantas is president of ASTUCE, Spain's brain tumor patient association, and his private ordeal has become a platform for a larger indictment. The standard treatment for his diagnosis — surgery followed by chemotherapy and radiation — has barely changed in twenty years. Meanwhile, therapies for more common cancers have leaped forward. Resources, he argues, follow prevalence rather than severity or need, and the result is a generation of patients receiving medicine designed for a previous era.
The silence extends beyond the laboratory. A survey by Ipsos and ASTUCE found that 72 percent of Spanish citizens believe brain tumors receive insufficient media attention, even as they rank among the most feared diagnoses. The country has no national registry to track the 4,000 to 6,000 people diagnosed each year, no coordinated picture of the disease's scope. On World Brain Tumor Day, June 8, Mantas issued a public call for greater visibility, more research funding, and faster access to experimental drugs and clinical trials.
To the newly diagnosed, he offers the message that hope exists and that research is moving forward. What his own position makes quietly clear, however, is that hope without investment is not enough — and that the distance between what medicine could offer and what it currently does grows wider with every year of inaction.
On July 10, 2022, José Luis Mantas's life fractured. A diagnosis of oligodendroglioma—a rare brain tumor that typically strikes adults in their late thirties and forties—arrived like a door slamming shut on the future he thought he had. Oligodendrogliomas originate in the oligodendrocytes, specialized cells of the central nervous system, and they announce themselves through seizures, migraines, cognitive fog, balance problems, and epileptic episodes. For Mantas, the news meant learning to live under the permanent shadow of mortality, watching it ripple outward into his family, his work, his finances, his sense of who he was.
Today, as president of ASTUCE, Spain's brain tumor patient association, Mantas has become the public face of a crisis that most people don't know exists. The standard treatment for oligodendroglioma remains surgery followed by chemotherapy and radiation—interventions that have barely evolved in two decades, that carry their own devastating costs, and that often fail to extend life meaningfully. The emotional and physical toll compounds daily. There are the scars from surgery, the cognitive aftereffects of treatment, the psychological weight of living with a disease that rewires everything. Mantas speaks of the need to accept the illness and find a way to live alongside it, to let the people around him see past the damage and the fear. He credits his partner's unwavering support and his own mental resilience as the anchors that kept him from drowning.
But Mantas's personal struggle has become a platform for a larger indictment. Between 4,000 and 6,000 Spaniards receive a brain tumor diagnosis each year, yet the country has no national registry to track them, no coordinated understanding of the disease's scope or patterns. Research funding flows overwhelmingly toward cancers with higher incidence rates. While treatments for more common malignancies have leaped forward—new drugs, new protocols, new hope—brain tumor patients are still receiving therapies designed more than twenty years ago. The inequity is stark and deliberate. Resources follow prevalence, not severity or need.
The silence extends beyond the laboratory. A survey conducted by Ipsos and ASTUCE Spain found that 72 percent of Spanish citizens believe brain tumors receive insufficient media attention, despite ranking among the most feared diagnoses. The public knows little about these tumors, fears them anyway, and sees them vanish from the news cycle. On World Brain Tumor Day, June 8, Mantas issued a call: more visibility, more funding for research, faster pathways to experimental drugs and clinical trials. He tells newly diagnosed patients there is hope, that research is advancing, that they should trust their doctors and join the community of patients and families fighting for recognition.
What he does not say, but what his diagnosis and his position make clear, is that hope alone is not enough. The machinery of medical progress has left brain tumors behind. The treatments are old. The research is starved. The patients are invisible. And the gap between what is possible and what is available grows wider every year.
Citações Notáveis
A brain tumor completely overturns your life— José Luis Mantas, ASTUCE president and oligodendroglioma patient
There is insufficient research and resources devoted to brain tumors. Most funding concentrates on cancers with higher incidence, which is why we emphasize the lack of equity in how these diseases are addressed— José Luis Mantas
A Conversa do Hearth Outra perspectiva sobre a história
When you say treatments from twenty years ago are still standard, what does that actually mean for someone sitting in a doctor's office hearing they have a brain tumor?
It means the doctor is likely offering surgery, then chemotherapy, then radiation—the same sequence oncologists were using in the early 2000s. There haven't been breakthrough drugs, no new protocols that fundamentally change outcomes. For other cancers, you see new targeted therapies, immunotherapies, things that didn't exist a decade ago. Brain tumors didn't get that.
Why? Is it because they're rare?
Partly. There are only four to six thousand new cases a year in Spain. Lung cancer, breast cancer—those numbers are much higher. Money follows volume. But rarity shouldn't mean abandonment. These tumors are devastating. They kill people in their forties. The research gap isn't proportional to the human cost.
You mentioned the lack of a national registry. How does that hurt patients?
You can't understand a disease you're not tracking systematically. No registry means no clear picture of who gets sick, when, what outcomes look like. It makes research harder, slower. It makes it easier for the disease to stay invisible—which it already is, given that 72 percent of Spaniards think brain tumors don't get enough media coverage.
What would change if there was more visibility?
Funding would follow. Researchers would prioritize it. Patients would feel less alone. Right now, someone diagnosed feels like they've fallen into a gap in the system. They're told their disease is rare, which somehow becomes code for 'we don't have much to offer you.'
What does Mantas want people to understand?
That this is a crisis of equity, not inevitability. The science could advance. The treatments could improve. But it requires the same commitment—the same resources, the same attention—that other cancers receive. Brain tumors aren't less important because fewer people get them.