One of the main lines of action of the Foundation Fernando Pombo is the work focused on human rights. In this context, the foundation is focusing part of its activities to the promotion and the defense of the PATIENTS´ RIGHTS with the aim of contributing to the improvement of the quality of their rights. More precisely, it is aimed to patients with specific diseases whose characteristics make those groups especially vulnerable and generally more exposed to social exclusion:
This Project intent to involve the lawyers and the medical specialists in:
– Counselling and protection of the patients’ rights who are especially vulnerable.
– Promote improvements within the current regulatory framework, conducting researches and taking care of determined groups of patients.
– Collaboration on the social inclusion of these groups through the protection of their rights
What activities includes in this Project?
Fernando Pombo Foundation will implement this Project by executing three main activities:
– Creating a space for observation, investigation and analysis of the rights and the responsibilities of the patients, as elaboration and edition of legal reports that will provide practical and useful tools for the effective protection of their rights.
– Creating Academic legal clinics in collaboration with the main Spanish universities in order to resolve specific claims of organizations that work with persons with rare diseases. Currently, we are running a legal clinic with the Law Faculty of the University Carlos III of Madrid, providing a free legal assistance to the Association of people affected by Chronic Fatigue Syndrome and Multiple Chemical Sensitivities (SFC-SQM Madrid).
– Providing a legal support to FEDER, as to facilitate the legal knowledge and make it accessible to all organizations who work in the field of protection of the rights of people with rare diseases.
Practical initiatives implemented in relation to the Patient´s Rights
UNIR-Fernando Pombo Foundation Legal Clinic reports
The legal report “Labour inclusion of persons with disabilities” has been produced by Fernando Pombo Foundation upon request of the Spanish Rare Diseases Federation (FEDER). The report includes innovative legislative proposals and has been key to FEDER and the EUROPLAN project that aimed to make proposals to the Ministry of Health on specific actions on rare diseases.
Legal reports in defending the rights of patients: (i) to the Spanish Thyroid Cancer Association by the “Access to pharmacological treatments approved by the European Medicines Agency” and the “Referral of patients between regions to access reference centers” reports, and (ii) for FEDER by the “Educational inclusion of children with rare diseases” and the “Right to diagnosis” reports in line with the pilot plan to improve the genetic diagnosis of the Ministry of Health.
The work with FEDER
In 2012, Fernando Pombo Foundation started a working group composed of lawyers specialised in public law, labor law and commercial law and also, one student took part in order to give support to the working group.
The aim of this working group is to meet the demands of FEDER for advising on patients rights. The group has elaborated several reports and has carried out several particular researches sharing the same goal with FEDER, which is informing and promoting the effective enforcement of the rights of those who suffer from rare or infrequent diseases. Until the moment, the undertaken work has been implemented in the following way:
a.) Patients referral
b.) Approval system for medicines and medical devices in the Common services Portfolio of the National Health Care System
c.) Possibility to finance orphan medicinal products with community funds
On the other hand, since last March 2, 2013 Fernando Pombo Foundation became an integral part of the Committee of Experts for Rare Diseases. The priority work of this Committee is to give proposals identified by FEDER and to ensure that no child, youth or adult is left without access to health.
Finally, it is worth to mention that the Spanish rare diseases Federation (FEDER) awarded Fernando Pombo Foundation at the category of “Promotion and protection of the Human rights” for the agreement achieved between the two entities in order to respond to the “great injustices and needs” of rare diseases.
Derivaciones de pacientes entre Comunidades Autónomas
Nota legal sobre los diversos aspectos relativos al proceso de derivación de pacientes a centros de referencia del Sistema Nacional de Salud
Nota sobre el sistema de aprobación de medicamentos y productos sanitarios y de inclusión y exclusión de los mismos de la cartera común de servicios del sistema nacional de salud
Posibilidad de financiar los Medicamentos Huérfanos a través de los Fondos de Cohesión
Legal Clinic: Association of people affected by Chronic Fatigue Syndrome and Multiple Chemical Sensitivities
Fernando Pombo Foundation jointly with the University Carlos III of Madrid have created an Academic Legal Clinic in order to provide free legal assistance to the Association of people affected by Chronic Fatigue Syndrome and Multiple Chemical Sensitivities (SFC-SQM Madrid). This project is implemented through the following activities:
– Support in obtaining the certificate for recognition, declaration and classification of the level of disease or disability that is issued by the Ministry of Health.
– Support in obtaining the right to be accompanied at the moment of the health inspection at the General Directorate for Social Security
– Assistance in obtaining disability card to CFS patients in the Community of Madrid