Today is National Rare, Infrequent or Orphan Disease Education and Awareness Day. That is why the Ministry of Health (Minsal) announced the creation of the National Office of Complex Chronic Conditions (CCC).
It should be noted that the main objective of the center will be to determine the priority strategies and lines of action for these health problems and that the rest of the requirements determined to be evaluated by the Technical Advisory Commission for the validation of high-cost pharmacological treatments without coverage (MAC).
On the occasion, Health authorities met with representatives of the Chilean Federation of Rare Diseases, the Chilean Federation of Rare Diseases and the Chilean Alliance of Patient Groups, as well as parliamentarians.
In this regard, the Undersecretary of Public Health, Cristóbal Cuadrado, assured that this type of disease can affect 6 to 8% of the population and that, due to its difficult diagnosis, they are often not recognized. “95% of these diseases do not have a known therapy and therefore are pathologies that can lead to situations that are very dramatic for the people who suffer from them and also for their families,” said the authority.
It is also important to mention that according to the Minsal, this office will be in charge of non-oncological health problems that could require the use of high-cost drugs without regular coverage and that, in addition, meet some criteria, such as being prioritized health problems. by the Health Authority, that require high-cost drugs that have a sanitary registry in the Public Health Institute or that there is a feasibility of implementation in the healthcare network.
In the same context, the undersecretary added that work is being done together with patient associations “which are the engines of change in this matter, and together with Parliament with a commitment from the Executive branch to expedite a bill in which We are working on this matter.”
Regarding the law on rare diseases, Senator Juan Luis Castro pointed out that tomorrow it will be discussed in the Senate Health Commission in order to give urgency to “the sense of change, the clamor and the anguish that children have today , young people and women affected by these diseases that sometimes have a strange name, that are unusual, expensive and that mean a social drama and a pilgrimage to access the specialist or the medicine finally have a solution” indicated the parliamentarian.
For his part, Alejandro Andrade, president of the Chilean Federation of Rare Diseases (Fecher) declared that “it is important that these projects continue to be supported, because what we seek is not only to give visibility to the situation presented by these communities, but also to Importantly, we are concerned that there is finally an authority that takes charge and is competent and responsible for the situations that occur”.
