Preventive pediatrics expansion: Center takes on eight more diseases

''The CPP has been carrying out a project on behalf of the State for 35 years and covers the needs of the entire population of the country free of charge on a voluntary basis'', says Fotini Tsiridou, the president of the Association of Friends of the Center of Preventive Pediatrics ''Amerikos Argyriou'' and councillor of DISY, to ''K''.

Ms Tsiridou, who recently submitted a proposal for a law to institutionalize prenatal and neonatal programs, says that it is the right of all citizens of our country to have access to preventive pediatrics services and screening programs. She stresses that now that the Center for Preventive Pediatrics is expanding its services to eight more diseases, "the institutional framework is more necessary than ever and support for it is imperative."

November was dedicated to preventive pediatrics. Are parents sufficiently aware of the various programs of the Américos Argyriou Center for Preventive Pediatrics?

- I can confidently say that the awareness in Cypriot society on prevention issues can be improved. Many parents are aware of the possibilities that exist on prevention in general and preventive pediatrics in particular, but we cannot say that the level of knowledge and information is adequate. Especially since the services, examinations and diagnostic programs of the Center for Preventive Pediatrics (CPP) are offered completely free of charge on a voluntary basis to everyone, we must work to ensure that the entire population of our country is well-informed about them.

That is why we have established the Month of Preventive Pediatrics every November and that is why we continue our fight through legislative proposals.

On top of that, how is the institutionalization of screening programs progressing at the legislative level?

- With the legislation that I am proposing and the legislative proposal that I have tabled, our country is moving full steam ahead in establishing a framework that regulates how screening of infants and pregnant women is to be operated and supervised. It is time to have a national legal framework to better operate the most important control: the health of our children.

Now that the Centre for Preventive Paediatrics is expanding its services to eight more diseases, the institutional framework is more necessary than ever and support for it is urgent. I hope that the government will embrace this effort and not waste any more time. With the proposed legislation, the goal is to bring all screening programmes for mothers and newborns under one institutionalised umbrella. Our intention as DISY is to have a full consultation with the Minister of Health and the relevant bodies as soon as possible to discuss the final details of the proposed law.

We aim to make the institutionalisation of the prenatal and neonatal programmes a reality in the new year, and we will insist on this direction. It will be prioritised by the Health Committee and from there it will be put on the road to implementation once it has been passed by the plenary.

How do these programmes and the establishment of a legal institutional framework help the Centre for Preventive Paediatrics?

- The Centre has been carrying out a task on behalf of the State for 35 years, meeting the needs of the entire population of the country free of charge on a voluntary basis. At the same time, it operates in a hybrid mode, at the crossroads of public health and private initiative. This success story, although it has been working extremely well for 35 years thanks to its people and its vision, cannot work without institutional support and recognition.

A National Framework is needed to regulate the way of information, the way of control and all those details that are so important for the daily life of the beneficiaries and health workers. It is not possible to base the health of our children on the goodwill and expertise of those involved alone without the necessary institutional framework to support it. Now that the CPP is about to be extended to eight more diseases, this National Framework is more urgent than ever. The establishment of an effective mechanism for monitoring screening as well as the creation of a national database for neonatal screening and prenatal programmes will go a long way in upgrading preventive paediatrics.

In general, the proposed legislation is considered an urgent need, since currently in our country there is no such legislation on neonatal and screening programs, unlike many other countries within and outside the European Union that have introduced such programs in their legislation aiming at early diagnosis, prevention and ensuring a standard of living suitable for health maintenance.

Is there currently any institutional obligation on the part of doctors to provide information?

- No, and this is something that needs to be ensured by legislation. We aim to regulate such details through the proposed legislation and also through amendments when and where necessary. The establishment of a system for monitoring programmes to facilitate cooperation between state and non-state actors at the national level and the provision of accurate information to parents by experts is imperative. It should be noted, of course, that over the years the cooperation between the CPP and gynaecologists and paediatricians has been excellent.

What is the message you wish to convey through the legislative proposal you have recently tabled?

- It is the right of all citizens of our country to have access to preventive paediatric services and screening programmes. And free of charge. And it is also a right to have access to a regulated and controlled environment. And that is free of charge. That did not exist, does not exist, and we want it to exist. It may have taken us 35 years, but better late than never. What matters is that it is done and done right.

What are the difficulties that the institution of preventive paediatrics faces today, at a social level?

- The institution of preventive paediatrics, which aims to prevent diseases and health problems through screening in infancy or even before a person is born, is currently facing a number of difficulties at the social level. These difficulties can be grouped into three categories: access, acceptance and education.

In terms of access, economic inequality affects access, as some families may not have the resources to receive the necessary preventive care. At the same time, the lack of resources in doctors and health facilities also has an impact. The Center for Preventive Pediatrics solves this problem by providing its services free of charge to everyone, regardless of their economic status.

In terms of acceptance, preventive pediatrics may face difficulties from parents who may feel that it is unnecessary. Lack of trust in health professionals, the belief that children are healthy and ignorance can be fatal. The Centre for Preventive Pediatrics helps with information campaigns to raise awareness. Finally, education and coordination are very important challenges for implementation.

The lack of coordination between agencies and especially the state, the training of qualified staff and the monitoring and evaluation system are things that the state needs to look at carefully. I aspire to solve all of the above through the legislative proposal I have submitted, which aims to institutionalise a single programme for all of the above with CPP at its core.

Is the "Amerikos Argyriou" Centre for Preventive Paediatrics an example of good cooperation between the private and public sectors?

- Absolutely. It is not only an example of good cooperation, but also an example of a partnership between the two sectors. After 35 years, the CPP serves as a model of such cooperation. Its model can be extended to other sectors and I am sure it will be a great success there too. International practice shows this. The Centre was set up and has operated with a vision and a way of organising itself for the future.

This has also been the merit of its sponsors and supporters who have consistently supported its services for four decades. With the Association of Friends of the CPP by its side, which acts as the 'lung' of financial support, as it undertakes to provide financial resources, the whole system works excellently with the ultimate beneficiaries being the Cypriot citizens.

Are there any statistics that can help the work of the Centre and national health policy?

- During these 35 years, more than 267,000 pregnant women have been screened by the Centre through antenatal newborn screening - these are the tests carried out at the 10th week of pregnancy with the main focus on the detection of down syndrome.

At the same time, the Centre examined more than 313,000 newborns through newborn screening for early diagnosis of metabolic abnormalities in newborns, such as hypothyroidism, which affects the child's physical and mental development. With early diagnosis, the infant can live a normal life without any health problem with proper treatment.

Finally, more than 141,000 newborns have been screened since 2004 in the Newborn Hearing Screening Programme, with the aim of early detection and diagnosis of hearing loss in newborns. What many people don't know is that thanks to the Centre, there are no children who are unable to speak because of their deafness. Even if an infant is born hard of hearing, with the early diagnosis that is made at the CPP, appropriate hearing aids are immediately given and the baby can hear and consequently speak.

The above evidence proves the obvious: prevention is an investment, not a burden on public finances. If one considers what the State would have to pay to support children with mental and physical disabilities who are now growing up normally, the importance of the work done by the CPP, which is completely free of charge, becomes clear.

What are the next goals and challenges of the Américos Argyriou Centre for Preventive Paediatrics after 35 years?

- The Centre is the national institution of our country. We are one of the few institutions in the whole of Europe and it is hard to find an institution that provides free health services to all the citizens of the country, without exception, even on a global level. We firmly believe that the goal of our country should be to expand the areas of screening that are currently done by adding more diseases to the national screening programme.

In August 2022, a Cabinet decision approved the expansion of the Neonatal Screening Program for another eight inherited metabolic diseases to be run by the CPP in collaboration with the INGC and the Ministry of Health. In terms of challenges, the financial aspect largely determines the sustainability of the project. I hope that the current government will continue to make it a priority as the previous one did, and also enhance it further.

[This article was translated from its Greek original]