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Brief report
Freedom of movement across the EU: legal and ethical issues for children with chronic disease Cecilia Mercieca,1 Kevin Aquilina,2 Richard Pullicino,1 Andrew A Borg1 1
Department of Rheumatology, Mater Dei Hospital, Malta 2 Faculty of Laws, University of Malta, Malta Correspondence to Dr Andrew A Borg, Mater Dei Hospital, Msida MSD2090, Malta and University of Malta, Msida, Malta;
[email protected] Received 22 November 2010 Accepted 11 December 2010 Published Online First 24 January 2011
ABSTRACT While freedom of movement has been one of the most highly respected human right across the EU, there are various aspects which come into play which still need to be resolved for this to be achieved in practice. One of these key issues is cross border health care. Indeed, there is an increasing awareness of standardisation of health service provision and cross border collaboration in the EU. However, certain groups particularly children may be at risk of suboptimal treatment as a result. We present the case of a child patient which highlights the complexity of this matter spanning family law, health law, social security law as well as ethical issues. EU legislation needs to ensure that children patients have access to high quality care across the EU borders. Freedom of movement across borders has been one of the top priorities of the EU. The European parliament and council directive 2004/38/EC of 29 April 20041 makes clear the right of citizens of the Union and their family members to move and reside freely within the territory of the EU and European Economic Area member states. For right of residency the directive states that ‘one must have sufficient resources and health insurance cover so as not to become a burden on the host member state’. However, the EU does not dictate specifically any minimum amount or how each state must achieve this result. Although there is clearly an increasing awareness of the provision of standardised health services and cross-border collaboration throughout the EU member states,2 it is still not clear how national governments should respond to complex issues regarding cross-border health care. This may leave a number of people in a precarious position. We present a case of a child patient, which highlights various issues in cross-border care including family law, health law, social security law as well as ethical issues in the context of a growing EU freedom of movement.
CASE REPORT Juvenile idiopathic arthritis (JIA) is one of the most common chronic diseases in childhood comprising a spectrum of conditions varying from mild to severe progressive disease. Studies emphasise the long-term, often permanent disability and poor quality of life associated with this condition, which usually persists into adulthood.3 Increased understanding of the natural history, early multidisciplinary quality care and availability of highly effective anti-tumour necrosis factor drugs offers hope to children with JIA. However, despite these advances there are still children who suffer because they do not have access to these newer, expensive 694
therapies that could change the course of the disease. We report the case of an 11-year-old girl diagnosed with polyarticular JIA 6 years ago in the UK. Over the past 5 years she has resided intermittently in various European Economic Area countries including UK, Spain, Norway and Malta. She first presented to us accompanied by her mother and five other siblings 2 years ago, and was found to have severe polyarticular disease resistant to standard medications including methotrexate and steroids. Short stature, jaw underdevelopment, joint deformities and Cushingoid features were also noted. According to the birth records, the father was registered as unknown for all the six children and mother. We could not retrieve much from her past medical records since her medical care spanned a number of countries and the mother held no records. From what we could understand etanercept, a biological agent, was administered for some time in Norway but was then stopped for reasons that are unclear. An attempt to restart other biological agents (adalimumab or infliximab) was made; however, funding was not approved by the local authorities. Refusal was decided on the basis that although the child was an EU national she was not a resident of any EU country, as her parents had not resided for long enough in any EU member state to claim residency and had opted out of paying statutory national insurance contributions in any member state for the past 5 years. As a result, the patient was not covered by any medical insurance except for emergency care in EU member states. The patient was lost to follow-up despite multiple attempts at contact. She turned up again a few months ago. The mother had been abroad again due to the nature of her current partner’s work for the past 8 months and the child was not having any treatment except for steroids and methotrexate, which clearly were not controlling the disease. In addition, no monitoring tests had been done during that period despite repeat prescriptions for methotrexate being issued (methotrexate is not available without prescription throughout the EU). She had been missing school for many months because she could not walk due to stiffness and pain. We recently performed multiple fluoroscopic guided intra-articular steroid injections under anaesthesia to suppress disease activity further. At present this child has short stature, is steroid dependent, has osteoporosis, micrognathia, fixedflexion deformities and severe joint damage. Most of these complications were potentially preventable J Med Ethics 2012;38:694–696. doi:10.1136/medethics-2011-041475
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Brief report given the wide array of treatments available for JIA, especially biological agents. From the social aspect she has been off school for many months and is unable to play with her siblings.
DISCUSSION This unfortunate scenario clearly illustrates that polyarticular JIA is a serious disease that needs to be treated aggressively, consistently and early. Continuity of care, close monitoring and multidisciplinary support is crucial for a good outcome. In addition to the challenge posed by the medical condition itself, this child patient case brings up various legal and ethical issues. Essentially, the scenario here cuts across various areas of the lawdfamily law (relations between the child on the one hand and parents and ascendants on the other); social security law (payment of national insurance contributions by parent or should the parent be unemployed then s/he will have to register for work and receive unemployment benefit); social law (if the parent is not taking care of the child, then the minister might take custody of the child through a care order); and health law (irrespective of whoever is responsible for the child, the child’s health problems have to be addressed and the child patient has to be diagnosed, cured or treated by the healthcare professionals). With the treaty on the functioning of the European Union4 and the European parliament and council directive 2004/38/EC of 20041 residents and their family are free to move within the EU’s internal border. All ‘Union citizens shall have the right of residence on the territory of another Member State for a period of longer than three months if they . have sufficient resources for themselves and their family members not to become a burden on the social assistance system of the host Member State during their period of residence and have comprehensive sickness insurance cover in the host Member State. Union citizens acquire the right of permanent residence in the host member state after a five-year period of uninterrupted legal residence, provided that an expulsion decision has not been enforced against them’. What is meant by sufficient resources and how this can be ensured is a very complex issue that needs to be clarified. Although the child is an EU citizen, it must be borne in mind that her mother did not have a comprehensive sickness insurance and as the child is dependent on her mother, the child could not benefit from the provisions of article 7(1)(b) of the said directive. Consequently, the child is excluded from free treatment in EU member states. Given that the child is not Maltese but an EU national, then EU law comes into play. With EU accession recourse could be achieved through the European health insurance card, which was originally regulated by regulation (EC) no. 1408/71.5 This latter regulation has now been replaced by regulation (EC) 883/ 2004,6 which came into force on 1 May 2010. However, the European health insurance card only covers emergency care rather then long-term treatment. Given that the current partner is an EU national and a selfemployed migrant worker and the mother and daughter are his dependants, the partner is entitled to benefit from the social security measures that the European parliament and the council might adopt in the future under article 48 of the treaty. Until this action is taken, the child would not be in a position to benefit from free medical treatment in Malta. When analysing the facts of this case, the first question that has to be answered is whether the child has sufficient resources not to become ‘a burden on the social assistance system of the host Member State’ during the period of her J Med Ethics 2012;38:694–696. doi:10.1136/medethics-2011-041475
residence in Malta. The second question that has to be answered is whether the mother has ‘comprehensive sickness insurance cover in the host Member State’. With regard to the first question the mother ’s partner is providing for the mother ’s child and also for her child. So there does not seem to be any difficulties here. The difficulty arises with regard to the second question as the mother does not have a comprehensive sickness insurance cover in the host member state (Malta) as she has not been paying national insurance abroad nor in Malta and probably does not benefit from a private health insurance paid by the mother ’s partner. The solution seems to be in the direction of the mother ’s partner to invest in a private health insurance for the childdalthough, bearing in mind the health problems the child has, the premium might be on the high side, especially if her disease, whether treated or not, can be fatal. Alternatively, the mother can find a job in Malta and pay national insurance in Malta, thus entitling her and her child to free medical coverage in public hospitals. Recently the EU has published a draft directive regarding patients’ rights in cross-border health care.7 The aim is to facilitate accessibility to safe and high-quality cross-border health care and to promote cooperation on health care between member states. It specifically contains provisions about reimbursement and the flow of patients, acknowledging the fact that this necessitates the coordination of social security schemes. While this is certainly an important step in cross-border health care, it does not safeguard children who are not covered by health insurance be it private or national. The case is particularly important because it centres on a child patient. Finally, is it ethically justified to make a distinction between children who are citizens and non-nationals? What is the distinction? One might argue that in order to have the right to welfare one should contribute to it through insurance and taxation. So those who have made no contribution should not have a right to welfare benefits. However, the situation here is more complex and various factors come into play. First this child patient relies on her parents to make social contributions and second many citizens who receive health benefits make little or no economic contribution to the state welfare. Once child patients are within a national state, it is hard to justify denying treatment ethically. Health policy has traditionally been a national responsibility under the principle of subsidiarity. By suggesting that health care for children with chronic illnesses should be freely available across the borders of the EU without restriction clashes with this principle of subsidiarity. Freedom of movement for children with chronic illness is a serious issue, not only in terms of continuity of care but also financially. Which country will pick up the bill? While emergency care is covered through the European health insurance card (E111), non-emergency care requires statutory health insurance. At present there is an unmet need in the EU legislation specifically to safeguard children with chronic diseases in crossborder health care. Efforts must be made to close legislative loopholes that allow parents to get away with the avoidance of statutory contributions to the detriment of children. EU legislation needs to ensure that children patients have a right to safe quality care. Competing interests None. Patient consent Obtained. Provenance and peer review Not commissioned; not externally peer reviewed.
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Brief report REFERENCES 1.
2.
3.
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Anon. Directive 2004/38/EC of the European Parliament and of the Council of 29 April 2004 on the right of citizens of the Union and their family members to move and reside freely within the territory of the Member States. Official Journal of the European Union 2004;158:77e123. WHO European Ministerial Conference on Health Systems “Health Systems, Health and Wealth”; Tallinn, Estonia. The Tallinn Charter: health systems for health and wealth. Copenhagen: World Health Organization Regional Office for Europe, 2008. Foster HE, Marshall N, Myers A, et al. Outcome in adults with juvenile idiopathic arthritis: a quality of life study. Arthritis Rheum 2003;48:767e75.
4. 5.
6. 7.
Anon. Consolidated version of the Treaty on the functioning of the European Union. Official Journal of the European Union C 2008;115:47e199. Anon. Council Regulation (EC) No 1408/71 of 14 June 1971 on the application of social security schemes to employed persons, to self-employed persons and to members of their families moving within the Community. Consolidated Version. Official Journal of the European Communities 1997;28:1e229. Anon. Regulation (EC) No 883/2004 of the European Parliament and of the Council of 29 April 2004 on the coordination of social security systems. Official Journal of the European Union 2004;166:1e123. Presse 167 10760/10 of the 8 June 2010 Council of the European Union agrees on new rules for patients’ rights in cross-border healthcare. PRES/10/167.
J Med Ethics 2012;38:694–696. doi:10.1136/medethics-2011-041475
Brief report
Correction doi: 10.1136/jme.2010.041475 Mercieca C, Aquilina K, Pullicino R, Borg AA. Freedom of movement across the EU: legal and ethical issues for children with chronic disease. J Med Ethics 2012;38:694-696. doi:10.1136/ medethics-2012-041475 This article was published in print with an incorrect DOI. The DOI should be 10.1136/ jme.2010.041475 as this is the DOI it was published online first with.
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J Med Ethics 2013;39:125–126. doi:10.1136/medethics-2011-100155
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Freedom of movement across the EU: legal and ethical issues for children with chronic disease Cecilia Mercieca, Kevin Aquilina, Richard Pullicino, et al. J Med Ethics 2012 38: 694-696
doi: 10.1136/medethics-2012-041475
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