IAPO member, Psoriasis New Life El Salvador advance their efforts towards patient centred healthcare

Friday, 10 August 2018

Evelyn de Aguirre of Psoriasis New Life El Salvador shares her organization’s experience in their advocacy for people with Psoriasis and Psoriatic Arthritis in El Salvador which has culminated in a working alliance between them and the Ministry of Health of El Salvador.

Psoriasis New Life El Salvador (PSONUVES) was formed in 2009 with a vision of collaborating with local health authorities and related institutions for improved health outcomes. With this vision in mind, we have since come to the Ministry of Health (MINSAL) and presented ourselves as an Association that sought collaboration to achieve our mission which states: "To improve the quality of life for people with Psoriasis and Psoriatic Arthritis in El Salvador".

Our initial contact was with the unit of prevalent diseases, where unfortunately we were not successful, as they did not show interest in joining forces and collaborating on improving the quality of life for people with Psoriasis and Psoriatic Arthritis in El Salvador. As a result of this challenge, the idea of drafting a legal document that would commit the Ministry of Health to develop plans of collaborative projects was born.

In 2014, we presented a Letter of Understanding to be signed between MINSAL and PSONUVES, which would guarantee the provision of comprehensive health care for people with Psoriasis and Psoriatic Arthritis in El Salvador. The process of making this agreement happen was not easy. Moreover, since presenting the Letter to MINSAL, it became a constant struggle to follow up despite the several meetings held with the government.

Two years later, on World Psoriasis Day (October 31st 2015) representatives from MINSAL and PSONUVES, as part of the day’s commemoration activities, signed the Letter of Understanding with the promise that the Minister of Health would also sign it later in an official ceremony. This unfortunately did not happen. This set back once again motivated us to take further action by taking our case to the Office of the Attorney of Defence of Human Rights to denounce this act and request their support to make this agreement valid.

After several working meetings, the Procurator for the Defence of Human Rights on 2016 ruled in favour of the human right to health of people with Psoriasis and Arthritis and recommended that the Ministry of Health signs the Letter of Understanding. As a result, in May 2018, the Letter was finally signed and the working alliance between MINSAL and PSONUVES was galvanised.

As you can see, these gains have been hard won. As patient advocates, we need to be perseverant and not faint by fighting every day in order to achieve our goals. Many times we will encounter obstacles but we must not lose sight of our dreams. The main element is the passion we put into what we do. While we are proud of the progress made, we recognise that there is more to do and remain dedicated to aligning our resources and expertise to improving patient lives. Nonetheless, we did it!!!