Directors of the 50 most important pediatric hospitals in the world have met in Sant Joan de Déu, in Barcelona, ??the only Spanish center that is part of the network, in an annual meeting from which a manifesto has emerged. The document calls for collaboration between public administrations, companies, universities, health and research centers and patient associations to improve the comprehensive approach to rare childhood diseases.
Mark Wietecha (Detroit, USA, 1958), executive director of the Children’s Hospital Association (CHA) – a group of more than 200 centers around the world – is one of the main voices of a meeting that has highlighted I express the need to “achieve high-level multidisciplinary care, a precise and personalized diagnosis and the best treatments.” Between 6,000 and 8,000 rare diseases have been described, affecting between 6% and 8% of the population, mostly children.
What role do pediatric hospitals play within a health system?
Two things. These hospitals are the ones that treat patients with minority diseases and are the ones that in some way advocate for the needs and health of these patients. Socially, pediatric hospitals are the most visible when there is a need associated with children. In the case of Ukraine, for example, children’s hospitals took action to help.
How do they contribute to the good health of tomorrow’s adults?
Through health promotion programs in different lines. For example, environmental health programs to prevent asthma. Or encourage good nutrition to prevent diseases associated with excess weight. Or raising awareness about the various types of child abuse… These are things that go beyond treatment, such as encouraging the use of helmets among children who practice skateboarding or similar activities.
You have alerted authorities about the emergency situation in pediatric mental health in the US.
This is a big global problem. We are also talking about countries like Australia, Great Britain, Canada, and Europe in general. For many years our work has been dedicated to the treatment of physical situations but, especially with the circumstances around the pandemic, we are aware that there has been a mental health problem in children that even leads to an increase in suicides.
To what extent is equity relevant to children’s health in the world?
In this meeting of Chief (International Executive Forum of Pediatric Hospitals) some participants from China have shown that they intend to improve the environmental situation in their region to protect the health of children. The needs are similar all over the world. Families want their children to have a stable, secure situation, to be able to grow… The message is similar, there is a consensus among all participating hospitals.
Is children’s health coverage enough in the United States?
The treatment of pediatric patients in the US and Europe is basically very similar. What changes is the social environment that gives rise to how to provide coverage for this treatment. For example, in the United States, when a baby is born, the mother does not have the opportunity to spend much time at home, when in Europe it is the opposite: there is a lot of social willingness for fathers and mothers to stay at home to care for the baby. . The social structure of support for families with children is much more important in Europe than in the US. At the social level, in the US a poor family cannot provide support for the children, who will consequently have less. care and more illnesses. It is a problem, there is no political will to support this process, but that does not mean that in the US they do not love children, but rather that there is no social support.
Do you see it possible to change this perspective?
Yes. It is changing. There is provision, but there are not the resources and taxes for this type of support. In Europe there is a cultural element that has much more experience, perhaps more awareness. In the US, pioneer culture has not given rise to attention to these issues, although the situation is improving.
Are they prepared to respond to global emergencies?
In crisis situations such as those in Ukraine or Palestine, patients who have a chronic illness normally arrive at our hospitals, but it is a very slow process, it is not coordinated, time is lost… some die. One of our responsibilities is to make this process more efficient. We are trying to reach a consensus to coordinate these efforts between us, the hospitals and entities such as the Red Cross. We must act as a back office so that from our places we can provide support to NGOs that are in crisis areas. NGOs have told us that this is a necessity.
