The Secretary of State for Health, Javier Padilla, has emphasized that the Patient Organizations Bill "talks about organizations at the state level," so it does not invade the powers of the autonomous communities, which he recognizes "all the right" to regulate in their own sphere.
Padilla, referring "to those who are wary (...) competentially, because they think this is an autonomous competence," has recalled that "there are already some autonomous communities that have embarked on the legislative process, such as Euskadi." "Some will do it with the rank of law, others will do it with a lower normative rank because they think they have the capacity to do so in their normative enabling," he has specified.
Regarding the total amendment registered by Junts, he has insisted that the competential fit "is well protected" and has expressed hope that it does not prosper so that they can move on to discuss "how it is enriched" the future law during its passage through the Cortes "with the opinions of the different groups." These statements were made during the event "The Patient Organizations Law: horizon or reality?", organized in Madrid by the Spanish Patients Forum (FEP).
He has also highlighted the relevance of the article that sets the definition of patient association. "Against those who want to dilute the concept," he has argued that organizations "have a singular element, which is linked to personal experience," whether "as a family member or caregiver of patients." In his opinion, this trait "confers not only an element of democratic legitimacy in the participation of decision-making but also an almost epistemic element of how to approach the knowledge of the disease."
As he has explained, the definition of patient organization is what "gives entry," so he considers "fundamental that the parliamentary processing does not dilute that concept because, precisely, that is the fundamental element to ensure that, subsequently, the law is successful." He has also added that the text "reflects that one of the rights is to have public funding for the performance of activities."
Funding and support for the most vulnerable associations
In the chapter on resources, Padilla has pointed out that "this is something that will be developed later," but has advanced that "these sources of funding have to come from specific items" of the Ministry of Health, always linked "to the recognition of rights and duties." He emphasized that "all organizations have to have the right to participate but, in addition, we have to make it easier for those who have the hardest time," and announced that the regulation will include an additional provision that guarantees "a specific operating regulation for those organizations that work in the field of rare diseases."
For the smaller associations, he has indicated that more flexible requirements will be considered in issues such as transparency and publicity, with the aim of "enabling spaces for everyone, but being especially careful with those we do not want to be left behind because they already have enough barriers."
Finally, after emphasizing that the proposal comes at a time of maturity for the patient association movement, he pointed out that the objective of the text is "to institutionalize and democratize the areas of participation" of these entities, as well as "to provide representativeness and protect them from the institutions." In this sense, he has guaranteed their "independence" thanks to this "specific legal recognition," which, he said, will allow patients to be "in the place where decisions are made."