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AELMHU participates in the Public Consultation on the Draft Bill amending various regulations to consolidate the equity, universality and cohesion of the National Health System.

AELMHU participates in the Public Consultation on the Draft Bill amending various regulations to consolidate the equity, universality and cohesion of the National Health System.

On 16 November 2021, the Ministry of Health opened the public consultation on the draft bill amending various regulations to consolidate the equity, universality and cohesion of the National Health System.

Of the issues included in this draft bill, the most relevant from the point of view of rare diseases is that of strengthening cohesion and equity in the National Health System (NHS), facilitating the viability of the regulatory development of the Health Care Guarantee Fund (FOGA).

AELMHU believes that this is an issue that concerns us all - patients, professionals, industry and public decision-makers - and we have therefore participated by presenting an analysis and proposing recommendations to the Spanish Government, which we sent to the Ministry on 3 December, and which we would also like to make available to all those interested in learning about our contributions to the project.

AELMHU considers that, if with this law we really want to strengthen the National Health System, developing measures for the consolidation of the principles of universality, equity and cohesion capable of minimising inequalities and structurally reinforcing the good governance and legitimacy of our public health system, it is essential to open a more general reflection on inequity in the field of rare diseases through a broad and constructive dialogue that inexcusably includes the industry, it is essential to open a more general reflection on inequity in the field of rare diseases through a broad and constructive dialogue, which must necessarily include the industry, and in which the pressing problem of access times is addressed, as well as other specific issues on orphan drugs, such as evaluation, the funding model or equity in diagnostic methods.

In addition, we have specifically proposed that the provision of treatments for rare diseases and orphan drugs under the FOGA be expressly included. In order to achieve equal access to health care throughout Spain and to reinforce cohesion and equity in the field of rare diseases, we believe that the scientific and clinical recommendations of the Therapeutic Positioning Reports should be applied in all areas of health management (national and regional) and that they should be binding in the decision-making process of the Autonomous Communities in order to avoid unjustified inequalities.

AELMHU Contributions