The World Health Organization (WHO) and the Catalan Ministry of Health say they will jointly support the dissemination of a programme that provides support to patients suffering from Chagas disease to manage their own health and promote self-care.
The Catalonian ‘Expert Patient Programme on Chagas disease’ involves interaction and sharing of information among people affected by the disease and is conducted by an expert patient. The programme is considered to have done very well since it was first initiated in 2017.
“Over the past few years we have seen remarkable increase in awareness and confidence among patients to pursue medical care and follow-up with physicians” said Dr Pedro Albajar Vinas, who is responsible for WHO’s Chagas disease programme. “When patients talk to one another there is better focus on overall perceptions of health, lifestyle, improving self-esteem, self-care and individual satisfaction.”
The programme also encourages self-responsibility and functions as part of the Chronic Disease Prevention and Care Programme of the Government of Catalonia. It is based on three key approaches:
- support provided by patients and observing professionals to those in chronic phase of the disease;
- promote interaction in groups through nine carefully planned sessions;
- evaluate performance of past sessions through questionnaires before a new session starts.
Many people who attended the programme over the years say they would recommend it to family and friends as it greatly helps to improve knowledge about disease.
Initiators of the programme are confident that the methodology used, and lessons learned can form part of a broader strategy to push for comprehensive care for a disease that continues to be largely neglected. For example, despite the efforts of the past decade, the global detection rate for Chagas disease is less than 10%.
Through this agreement, WHO will provide support in facilitating the translation of materials and documents in languages used in its Member States as well as assist in the development of any mobile-based application if the need arises. The Government of Catalonia will print and distribute for advocacy purposes.
To promote global advocacy for the disease, the World Health Assembly – WHO’s decision-making body – in 2019 adopted a decision to celebrate World Chagas Disease Day on 14 April.
Chagas disease was once confined to rural areas of Latin American countries where the main route of transmission is vectorial transmission.
But over the past decades, the disease has been increasingly reported in many countries outside Latin America mainly due to movement of populations and migration.
According to WHO estimates, around 6-7 million people are infected with Trypanosoma cruzi – the protozoan parasite that causes Chagas disease.
Vectorial transmission occurs when humans come in contact with the faeces or urine of triatomine bugs (known as ‘kissing bugs’, among many other local names).
These bugs – the vectors that carry the parasites – live in the wall or roof cracks of homes – where they hide during the day and active at night when they feed on human blood. They usually bite an exposed area of skin such as the face (hence its common name ‘kissing bug’).
Right after a bite, the bug defecates/urinates close to the bite area. The parasites enter the body when the person instinctively reacts to the bite and smears the bug faeces or urine into the bite, the eyes, the mouth, or into any skin break.
The parasite can also be transmitted by:
- consumption of food contaminated with T. cruzi through, for example, contact with faeces or urine of infected triatomine bugs or marsupials (this kind of transmission typically causes outbreaks with more severe morbidity and higher mortality – infecting groups of people simultaneously with more frequent cases of severe disease and higher number of deaths);
- blood or blood product transfusion from infected donors;
- passage from an infected mother to her newborn during pregnancy or childbirth;
- some organ transplants using organs from infected donors; and
- laboratory accidents.
There is no vaccine against Chagas disease. Domiciliary vectorial control and transfusional control, together with congenital transmission, remain the most effective methods of preventing transmission in Latin America.
Chagas disease was named after Carlos Ribeiro Justiniano Chagas, a Brazilian physician and researcher who discovered the disease in 1909.
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