The Spanish Association of Orphan and Ultra Orphan Drug Laboratories (AELMHU) has submitted its comments to the hearing and public information process of the draft Order of the Ministry of Health, by which the Observatory of Rare Diseases of the Community of Madrid is created. The aim of this observatory is to create a support and advisory tool for the planning of the improvement of the care for these patients in the Community of Madrid, which is carried out by the competent Regional Ministry of Health.
The associates that make up AELMHU defend that an early diagnosis is essential for the correct treatment. However, the data regarding the diagnosis of rare diseases in Spain are overwhelming. A patient with a rare disease waits an average of 6 years to obtain a diagnosis. Thus, such a long wait leads to an incremental deterioration of their health, which makes early detection a fundamental and determining factor, both for their approach and progression, as well as for their quality of life and their family, social and work environment.
In this sense, the Association welcomes the fact that by this order the Government of the Community of Madrid maintains and strengthens its commitment with rare diseases, betting on the creation of a Rare Diseases Observatory in the Community of Madrid. The creation and the establishment of the organization and operation regime of the Rare Diseases Observatory of this Community, as a support and advice tool in the planning of patient care, shows this commitment since the essential aim is to improve the health care for the people affected by rare diseases in the Community of Madrid.
The Madrid region is a national reference for its developments in the field of rare diseases: its 86 Centers, Services and National Reference Units or the Experience Units for 33 rare diseases made up of multidisciplinary teams that coordinate with other medical and surgical specialties according to the patient's healthcare needs, among others, are a good example of its commitment to these pathologies.
In the same vein, the Association welcomes the fact that the participation of the industry has been taken into consideration in the development of the tasks and objectives of this body, given that the situation of people with rare diseases challenges patients, professionals, public decision-makers and industry.
However, they point out that it would be very opportune to continue to deepen in new developments and proposals that give visibility to less frequent pathologies and their challenges, as well as to address new proposals for improvementThe authors also point out that it would be very opportune to continue to deepen new developments and proposals that give visibility to less frequent pathologies and their challenges, as well as to address new proposals for improvement, such as the recognition of the economic and social value of pharmaceutical research in this field, equity in access to treatments throughout Spain, the streamlining of bureaucratic processes or the improvement of the innovation evaluation process, among many others.
See the complete text sent to the CAM.
