They ask to recognize oligodendroglioma as a rare disease

The Association of Patients of Brain and Central Nervous System Tumors (ASTUCE Spain) This Monday he urged the Ministry of Health to recognize the oligodendrogliomas as rare diseasewhich would help ensure equitable, quality care for patients, as well as promote research.

Oligodendroglioma is a primary tumor of the central nervous system which originates in the brain or spinal cord and causes symptoms such as seizures, altered thinking and memory, weakness, numbness, or problems with balance and movement. Patients are usually diagnosed between 35 and 44 years of age.

Treatment includes surgery, followed by radiation, chemotherapy, and participation in clinical trials, although ASTUCE has pointed out that, currently, none is available.

Within the framework of World Rare Disease Day, which is commemorated this Saturday, ASTUCE has detailed that the incidence of oligodendrogliomas stands at 0.27 new cases per 100,000 inhabitants per year in Spain, a figure even lower than the European average, of 0.4 cases per 100,000 inhabitants. The European criterion for a disease to be considered rare is that it has a prevalence of less than five cases per 10,000 inhabitants.

“We are facing an ultra-rare disease in practice, but one that lacks that official protection in our country. It is easier to win the Christmas lottery than to have an oligodendroglioma,” said the spokesperson for the Visitación Ortega association, who stressed that celebrating World Rare Disease Day “means remembering that low prevalence should not mean low priority on the public agenda.”

According to ASTUCE Spain, include oligodendrogliomas in the national registry of rare diseases would facilitate the creation of specific treatment protocolswould improve multidisciplinary care through referral to centers of excellence and ensure equitable and specialized care throughout the country.

Access to clinical trials and drugs

Furthermore, he highlighted that it would mean a impetus for research into these tumors, It would attract international clinical trials and speed up access to new treatments. At this point, the association has referred to vorasidenib, a drug approved by the European Medicines Agency (EMA), but which only new diagnoses can access in Spain.

“The approval of this type of therapy is of no use if it does not reach patients. The inclusion of oligodendroglioma as a rare disease would facilitate access to this type of drugs, which have been shown to be capable of stopping the progression for several years and delaying the mortality of some types of low-grade glioma,” said Visitación Ortega.

Along these lines, the association has demanded the launch of more specific clinical trials, remembering that the concept of health equity must also be applied to the field of research. To do this, he has requested the collaboration between scientific entities, hospitals, industry and institutions.

ASTUCE Spain supports the project ‘OligoSpain‘, which seeks possible targets and lines of treatment for oligodendrogliomas. The work is led by the researcher at the Maimónides Institute for Biomedical Research of Córdoba (IMIBIC) and the University of Córdoba Raúl Luque, and supported by the Reina Sofía Hospital of Córdoba and its head of the Neurosurgery service, Juan Solivera.

Meeting with Health

The association has held a meeting with those responsible for the General Subdirectorate of Quality Care of the Ministry of Health which he has described as a “step forward” to make the pathology visible and initiate dialogue for the inclusion of low-grade gliomas with IDH mutation in the registries of rare diseases.

During the meeting, ASTUCE Spain has conveyed to Health the clinical and social difficulties that patients face and the lack of equity in care, in addition to presenting specific proposals that could improve their quality of life.

“Collaboration between patients, professionals and administrations is emerging as key to moving towards fairer and more specialized care,” said Visitación Ortega.