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Patient associations, such as the Respiralia Foundation, are going to be severely affected by the initiative promoted by PSOE / PODEMOS in the Reconstruction Commission and approved in Congress, through which they want to reduce the economic capacity and, therefore, of service to children with Cystic Fibrosis.
Respiralia, a member of COCEMFE, has asked the Balearic Government’s Health Minister for explanations to clarify the reasons for this initiative and, above all, if they have alternatives planned in case it becomes an effective rule. Since its creation, the Respiralia Foundation has based its economic viability on private financing, in which the aid of the pharmaceutical industry stands out in an important way, so that this decrease would have a very negative impact on the development and maintenance of its services in case of that is part of a future Law.
We reproduce the text of the press release of the Spanish Confederation of People with Physical and Organic Disabilities, COCEMFE.
COCEMFE regrets that Congress has not met its demands regarding disability and funding of its organizations.
* Congress has approved the opinion of the Health and Public Health area of the Commission for Social and Economic Reconstruction and rejected that of the Social Policies and Care System area.
* The Confederation rejects that the amendment allowing patient associations to receive funding from the pharmaceutical industry has not been included.
* COCEMFE asks parliamentary groups to reach a State agreement to define the future of the care system and social policies
The Spanish Confederation of People with Physical and Organic Disabilities (COCEMFE), as one of the entities participating in the Commission for Reconstruction through CERMI, rejects that the Congress of Deputies has approved the opinion of the Health and Public Health area without include the amendment that responded to the claim made by COCEMFE and its Associative Movement, so that instead of prohibiting, a regulatory framework be established that defines the financing by the pharmaceutical industry of activities carried out by patient associations.
In this sense, COCEMFE reiterates that restricting the funding of patient associations at a time like the present puts at risk the sustainability of organizations that provide an essential service to thousands of people with disabilities and chronic diseases.
“From COCEMFE we ask the Government to guarantee sustainability measures for patient organizations, regardless of the source of their funding, following ethical and transparency criteria and applying the existing sanctioning regime in cases where it is necessary to ensure that there is no conflict of interest ”, defends Queiruga.
On the other hand, the Confederation regrets that the Congress of Deputies has not approved the opinion of the Social Policies and Care System area, which included important measures in favor of people with disabilities.
“From the Associative Movement of COCEMFE we receive with great concern that the Congress of Deputies has not been able to reach an agreement to approve the roadmap aimed at defining the future of the care system and social policies to face the consequences caused by the pandemic and avoid its repetition in the event of a re-outbreak ”, points out the president of COCEMFE, Anxo Queiruga, who asks the different parliamentary groups to reach a State agreement on this matter.
Among the measures included in the opinion that has not been approved, are the review of the institutional care system of this social group to adapt it to the provisions of the Convention on the Rights of Persons with Disabilities, which explicitly recognizes the right to personal autonomy and independent life of these people, with special attention to guaranteeing their stay in the home whenever possible.
Likewise, it included the promotion of effective measures for the elimination of architectural barriers in housing and public facilities, reviewing the Horizontal Property Law and allocating a specific item in public works contracts to accessibility work in buildings and the planning of public policies taking in consideration of the 2nd Manifesto of the Rights of Women and Girls with Disabilities of the European Union.
Similarly, it was proposed to evaluate the Law for the Promotion of Personal Autonomy and Care for people in a situation of dependency in order to detect possible improvements in its functioning and greater efficiency in promoting personal autonomy, with special attention to care system and care in residences.
The Spanish Confederation of People with Physical and Organic Disabilities (COCEMFE) is a non-profit NGO established in 1980. Its objective is to achieve the full inclusion and active participation of people with physical and organic disabilities in all areas of society, Through the promotion, defense and vindication of the exercise of their rights, as well as the coordination, representation and promotion of its Associative Movement, thus contributing to the construction of an inclusive and diverse society. It is made up of 89 state, regional and provincial entities that bring together more than 1,600 associations.
