The
Ministry of Health (Minsa) has approved the 2021-2024 National Plan for Prevention, Diagnosis, Comprehensive Health Care, Treatment, Rehabilitation, and Monitoring of Rare or Orphan Diseases (ERH), which aims to establish strategies —at the national level— to improve the quality of life of these patients, from an ethical perspective and with respect for their rights.
Through
Ministerial Resolution No. 1059-2020-MINSA, the document stipulates the implementation of an epidemiological and management information system, promote education and training of health professionals in ERH, and promote the development of research on rare diseases.
It also seeks to improve patients' access to comprehensive care, with safe and quality care per lifetime, as well as to stimulate the participation of people suffering from ERH —together with their families and organized civil society— in the articulation of actions to be developed, an articulated work that is already being developed.
These efforts aim to contribute to reducing morbidity and mortality of patients suffering from ERH, under the principles of accessibility, universality, quality, equity, differential approach, and solidarity.
Likewise, the budget will be allocated to the bodies responsible for developing the above-mentioned activities, which is reflected in the Institutional Operational Plan (POI) and aligned with the 2021-2023 Multiannual Institutional Operational Plan.
The ERH are characterized as diverse and infrequent, but they are associated with severe and progressive chronicity, with a tendency towards disability and a great impact on the quality of life of people suffering from them and their families. They do not have a specific treatment; in most cases, they require palliative care.
In Peru, the treatment of some diseases included in the ERH list —approved this year by
Ministerial Resolution No. 230-2020-MINSA— has been financed through the Intangible Solidarity Health Fund (FISSAL) of the Comprehensive Health Insurance (SIS), which treated 20,618 patients with ERH in 2019.
However, there are still difficulties associated with high-cost treatments because they do not have scientific support or are not available in the national market.
(END) NDP/KGR/RMB
Published: 12/21/2020