The Department is reluctant to extend this system to the adult population.
Carlos Mtz. Orduna – DEIA
The Basque Parliament yesterday urged the Department of Health to request the Inter-territorial Council of the Health System to authorize the current rare diseases unit in the Pediatrics Service of Cruces Hospital as a reference unit.
Rare metabolic diseases have a minimum incidence among the population, but the great number of them greatly hinders their identification and, above all, a correct diagnosis. Hypothyroidism, congenital phenylketonuria… are some of these strange diseases requiring a multidisciplinary approach when they are detected in the patient, since they affect several organs, and not taking in account the constant research that is vital in this field to advance in treatment.
Detecting them since child age is one of the keys to success to fight them effectively, matter which both the private and public Health Care have been working in the Basque country for almost three decades, through the application of a neonatal screening, known as the heel prick test, to infants in their first two years of life. Since its launching in March, there has been more than 470,000 analysis in the Basque autonomous region, being diagnosed with hypothyroidism 127 babies and with inborn errors of metabolism other 37.
Once detected these disorders, Cruces hospital has become the reference point of the public health network for its treatment in the child population: currently, the existing rare diseases unit within its Pediatrics service treats 125 children affected by these diseases, 20% from outside of the Basque country. In addition, 18 facultatives from Osakidetza lead a research in this field, with an annual budget for investigation of 1.3 million appointed by the Ministry of Health. Its minister, Gabriel Inclán, ponted out yesterday in the Commission of the Basque House that the Basque public system is a “reference” in this field supported by these data.
However, all the groups in the House – except EHAK, who abstained – urged the Health Ministry to authorize as a reference unit of rare disease this service provided in Cruces to the child population. Inclán pointed out here that although it has no specific authorization, this unit does function in practice as a reference unit.
Before the adoption of the compromise amendment that gave rise to this demand, the Partido Popular had wanted to be “more ambitious” demanding Inclán’s Department that these units of reference should also be extended to the adult population, given that 35% of the patients monitored at Cruces with rare diseases are over the age of 14. In addition, the popular Juana Iturmendi demanded Inclán’s team to expand newborn screening, as it has already been done in other autonomies, to increase the number of metabolic diseases that can be diagnosed.
Itziar Astigarraga, Chief of the Pediatrics Service at Cruces, who also attended the Commission, was favourable to continue with the current system, so that adult patients are treated in a multidisciplinary manner by different specialists from different areas of the hospital, according to their pathology. In addition, she recalled that the extension of the screening system to other pathologies is valued by an Expert Committee that it still thinks it is unnecessary. For example, diagnosing diseases that may not have treatment or others whose symptoms are very mild.
