The leaders of rheumatic patient organizations met during the II Pan-American Congress of Rheumatic Patients held in Quito, Ecuador, prepared the “Pan-American Declaration on healthcare needs of rheumatic patients”.
This meeting gathered in Quito more than 30 leaders of patient organizations representing the various regions of America that gathered to celebrate the II Congress promoted by the Pan-American League of Associations for Rheumatology (PANLAR), an organization that integrates rheumatology scientific societies, health professionals related to rheumatic conditions and rheumatic patient groups from all countries in the region.
The document consolidates patient’s requests and suggestions to implement successful public policies promoting a better access to therapeutic treatments, fulfilment of their rights and an active involvement in decision-making processes.
Rheumatic diseases grouped more than 200 conditions and syndromes that may cause different levels of pain, suffering, disability and poor quality of life. According to the WHO, these conditions may affect as many as 15% of world’s population, including children, youth, adults and the elderly. Together, these conditions constitute the main cause of pain and long-term disability.
The project of the Declaration emerged as a result of the work made during the first Pan-American Congress of Rheumatic Patients held in Argentina in 2018, wherein the realities of each region were noted and common needs of American patients were identified, concluding that they are all related with a comprehensive, person-centered healthcare.
Priscila Torres, president of the Pan-American Congress of Rheumatic Patients, pointed out the “importance of preparing these documents and statements in the region so that the health policies and strategies can meet the real needs of the patients”.
Dr. Carlo Vinicio Caballero, president of the Science and Education Committee and manager of the PANLAR congresses, said that “thanks to the JUNTOS initiative, both, health professionals and patients can now bolster efforts to improve the conditions of care”
“These types of studies allow us to contribute evidence considering the patient’s perspective, a key element in designing health policies and making decisions about the improvement of their quality of life”, stated Dr. Emilia Arrighi, principal investigator of the study.
Pan-American Declaration on Rheumatic Diseases
The following needs were highlighted in the Declaration: Early detection and timely care; comprehensive healthcare by a multidisciplinary team able to take care of the clinical, psychological, emotional and rehabilitation needs; the recognition of the patient organizations as referents in decision-making processes regarding public policies and in the education and empowerment of patients; as well as guaranteeing and promoting patient’s rights, especially those of the most vulnerable groups.
Furthermore, the document emphasizes the generation of alliances with scientific societies, the academy and government bodies in order to improve the quality of healthcare for people suffering from these conditions in America.
“A Declaration gives us the possibility to speak with one voice, to walk together and do it collaboratively towards the common goals of an early detection and a comprehensive healthcare and accomplish that nobody in our continent reaches a disability caused by a rheumatic disease. The Congress and the Declaration strengthen us because we can express our needs to the authorities with a great support of the whole region”, stated Cecilia Rodriguez from the Chilean foundation Me Muevo.
The Declaration constitutes a scientific document that represents the vision of the patients regarding healthcare needs and will serve as an instrument to improve the health policies in the different countries of the region.
About PANLAR
The Pan-American League of Rheumatology Associations (PANLAR), founded in 1944, integrates rheumatology scientific societies, health professionals related to rheumatic conditions and rheumatic patient groups from all countries of the Americas.
Our mission is to stimulate, promote and support research, prevention, treatment and rehabilitation of rheumatic conditions. The field of rheumatology includes the rheumatic affections of the connective tissue, locomotor apparatus and musculoskeletal system.
For more information, please contact:
Dr. Carlo Vinicio Caballero President of the PANLAR Science and Education Committee carvica@gmail.comJUNTOS Group (PANLAR)
Priscila Torres President of ASOPAN – redasopan@gmail.com
