How HIV-positive people with an uncertain residence status survive in Europe You can speak! Acknowledgements AIDS & Mobility Europe warmly acknowledges everybody who contributed, in any way, with their testimonies, interviews and advice. We thank AIDES for coordinating this Working Group, which has been a new experience and a positive one. We thank the preparatory committee for their patient work and their eye for detail. To all participants of the Working Group meetings, thank you for both your expertise and your enthusiasm. We thank the illustrator for his fine art, the designer for seeing to an attractive booklet, and the editors for dotting the i’s and crossing the t’s. Last but not least, we are grateful to the migrants for their candid testimonies and the health professionals for their valuable contributions. Thank you all for making this possible! Project committee Sébastien Mériau (AIDES - France) Thomas Demyttenaere (Sensoa - Belgium-Flanders) Andreas Berglöf (RFHP/HIV Sweden - Sweden) Astrid van der Steen and Kathelijne de Groot (AIDS & Mobility Europe) Organisations of the people participating in , AIDS & Mobilitys Working Group IV Sensoa (Belgium - Flanders) AIDES (France) RFHP/HIV Sweden (Sweden) Coordenação Nacional para a Infecção VIH/sida (Portugal) Training, Information and Counselling Centre / AIDS Foundation (Denmark) IRCCS L. Spallanzani (Italy) HivNorge (Norway) Médicos del Mundo (Spain) Cáirde (Ireland) Organisations involved in the meetings of , AIDS & Mobilitys Working Group IV PICUM (Belgium) Reden-STOP Kvindehandel (The Nest-STOP Trafficking in Women) (Denmark) Comede (France) Médecins du monde (France) Cimade (France) Editing and design Chris Canter (AIDS & Mobility Europe) Grace Cunnane (AIDES) Laurent Marsault (AIDES) Jean-Noël Roussel (TDC) Illustrations Sam Coordination AIDES You can speak! Preface The ideal of migrant-friendly health care For over fifty years, securing the ‘highest possible levels of health’ has been a stated objective of the international community cooperating in the organisations of the United Nations. The World Health Organisation (WHO) regards the attainment of health as a human right, requiring that governments work across the entire spectrum of social and economic policy to ensure that persons living within their national jurisdictions have access to the highest standards of health care. And though every country in the world is party to at least one human rights treaty that addresses health-related rights, including the right to health and a number of rights related to conditions necessary for health, the battle to ensure that public authorities meet these standards of respect for health rights has to be constantly renewed by health service providers, health workers and wider civil society. At the present time the attention of groups working in support of health as a human right has to be brought to the plight of a substantial group of people living in Europe as migrants with various types of insecure residence status. These range from refugees and asylum seekers, economic migrants on short-term employment contracts, and ‘undocumented migrants’ who are considered by immigration authorities to be in breach of national rules and regulations. The sheer complexity of immigration rules and procedures has generated vast scope for infractions on the part of migrants who do not have access to good standard legal advice and representation and whose confusion and bewilderment about what the law requires often means that they ‘go underground’ and avoid, as much as possible, contact with the authorities. 1 These people pay a heavy penalty in terms of their personal health, measured by both their proneness to infection and disease caused by poor housing, nutrition and arduous and physically dangerous types of employment, and also their mental health as the burdens of stress and anxiety wear many people down. Many European citizens assume that their national health services are at the disposal of vulnerable immigrant groups who are in clear need. Yet the fact is that disputes over immigration status frequently cut across the provision of care and treatment, leaving sick people untreated, supported only by others in the migrant communities who themselves subsist at a minimum wage and minimum social amenity standards. In these circumstances, ill health becomes endemic amongst the poorest and most vulnerable and locks them into a cycle of deprivation that is not easily overcome. It is ironic that migrants have contributed so much to the provision of health care across all the countries of Europe. As doctors, nurses, hospital porters, cooks, cleaners and carers, the level of their contribution is such that barely a health system across the continent would be able to maintain its current standards if it were not for the contributions of health workers from across the world. This publication gives an often harrowing account of the predicaments which result from immigration regulations which cut across the clear obligations of human rights to provide high standards of health care to all in need. HIV is now eminently treatable and good care provides every opportunity for HIV-positive people to lead a productive working life. Yet this report provides startling case studies of the things which can go so badly wrong if the authorities are allowed to trail the complexities of immigration status into the need to provide treatment to people who would benefit from it. These testimonies also provide examples of the ways in which humanitarian civil society can move developments beyond the ineptitude of poorly constructed immigration policies and shabby administrative practices in some sectors of health care. ‘Migrant-friendly health care’ is an ideal now actively promoted by experts and community campaigners across Europe. A veritable network of campaigners exists to promote alternative perspectives on the provision of high standards of health care. AIDS & Mobility Europe have performed a service in spelling out in such eloquent and moving terms what it means to be an immigrant in need of health care in Europe today. The stories recounted in the following pages must become what they are clearly intended to be: a call to action in defence of the human right to health! Don Flynn Chair PICUM 2 Table of contents 1 Preface: Don Flynn, chair of PICUM: The ideal of migrant-friendly health care 5 Introduction: Good intentions and reality: closing the gap 7 France: Christian Saout, Chairman of AIDES: If campaigners don’t say it, governments won’t do it 9 Portugal: Luís Távora Tavira, Medical Doctor, Specialist in Clinical Pathology, PhD in Tropical Medicine at the Institute for Hygiene and Tropical Medicine, Nova University, Lisbon: Constraints mainly in non-medical situations 10 Ireland: Buyiswa’s story: “I still have plans for my life and have hope” 11 Spain: P.M.’s story: “Everybody treats me well” 12 Belgium: an interview with Anne Van Lancker, Belgian member of the European Parliament: The cost of denying health care 14 Portugal: António Carlos, Medical Doctor and Public Health Specialist in a Lisbon Health Centre: Problems with health care in the ‘front office’ 15 France: Raymond’s story: “I decided to take myself in hand” 17 Spain: G.C.’s story: Getting by very well 19 Italy: Tullio Prestileo, MD, Ospedale Casa del Sole/Pisani, Palermo: The law, human rights, and services 20 Sweden: Article published in Situation magazine, April 2003: Hidden refugees forgotten in the health care system 23 Ireland: Hope’s story: “I didn’t know what to do - I was confused - I thought I was going to die” 25 Belgium: Inge Schepens, social worker with Zorgwonen: Migration policy… which policy? 27 Sweden: Mikael’s testimony about his friend Sebastian: Denied the medication he needed to live 30 The Netherlands: an interview with Mr. R.M.W. Smeets, chairman of the National Committee on Medical Aspects of Immigration Policy: “A policy meant to deter should still be humane” 35 France: André’s testimony: “In our country, we would have been dead” 36 Ireland: Maeve Foreman, Lecturer in Social Work, School of Social Work and Social Policy, Trinity College, Dublin: What does `direct provision’ provide for? 38 Spain: Paco Espinosa, internist and volunteer member of Médicos del Mundo Comunidad Valenciana: “The greatest problem is communication” 39 Sweden: A letter to the Somalia Health Team, Stockholm 40 Contacts 3 Introduction Good intentions and reality: closing the gap These testimonies were collected in the framework of AIDS & Mobility Europe’s working group on access to HIV/AIDS prevention, care and support for people with an uncertain residence status. The working group ran from 2004 to 2006 and brought experts from nine European countries together. It was coordinated by AIDES, the leading community-based HIV/AIDS NGO in France. Giving a voice With this booklet, we want to give a voice to the thousands of people in Europe who are HIV positive and who, due to their migrant background and uncertain residence status, live with the risk of being refused treatment and care, the threat of being deported, and the reality of stigma or exclusion within and outside their communities. On top of this, they are continually depicted negatively in the mass media. These painful living conditions prompted us to make an effort to counter the prevalent negative image of these people, and to address their needs rather than the threat they are assumed to pose. We want to show what is really happening in Europe with regard to their situation; what are their own experiences, concerns, fears, actions, points of view and solutions. Lives at stake The testimonies of migrant people themselves, medical doctors, social workers, et cetera, show us the difficulties of finding a job and housing, of obtaining a residence permit and of keeping faith. From these experiences, it is obvious that the situation of HIV-positive migrant people without documents or with an uncertain residence status is far from favourable. Even if they do obtain a residence permit, it is typically valid only for a short period, thus adding to the bureaucratic complications migrant people have to deal with on top of providing for themselves from day to day. The uncertainty of their status is a menace, considering that HIV is a chronic pathology requiring a lifetime commitment to intensive treatment. This is why lives are at stake in the case of deportation, because treatment is often practically unavailable or unaffordable in countries of origin. Also, people are often rejected by their families and cut off from social support in countries of origin because of the stigma attached to HIV/AIDS. 5 Not just victims But HIV-positive migrant people are not just victims and objects of vulnerability. They are also actors of their own existence. They are resilient, they hold out hope, and they find crucial support from sympathetic care providers. They very often find, as this booklet illustrates, the resources needed to find a job, to help their families, and to give something in return to their countries of origin, like becoming involved in the fight against HIV/AIDS and helping other people. Neither the social rejection nor the political expulsion of vulnerable people is tolerable, because it is a violation of human rights. We hope you will be touched by these stories and will join us, as a citizen, parliamentarian, policy maker, journalist, decision maker, community member, and so on, to do what is in your power to close the gap between our human rights standards, human rights conventions and good intentions, and the reality of people being refused life-saving care and support. Sébastien Mériau Thomas Demyttenaere Andreas Berglöf Astrid van der Steen Kathelijne de Groot 6 Christian Saout, Chairman of AIDES FRANCE , If campaigners dont say it, governments won ,t do it This publication offers an insight into the assignment of Working Group IV of AIDS & Mobility Europe (A&M), which has been coordinated by AIDES, the French National Focal Point of the A&M network. It will help you gain an overview of what has been organi sed in the field of migration and HIV/AIDS, along with the current state of affairs in Europe, and how this measures up to the needs of people arriving from abroad and the health pro blems they sometimes experience on arrival or during their stay. If we look at the French experience, some people arrive in a very poor state of health, which for some is the reason why they left home in the first place. It is much more common, however, for a person’s state of health to change after they arrive. They fall victim to the priority of their requirements, i.e. the need to find a job and somewhere to live, with health coming much lower down the list. The French health system is one of the most advanced in the world. Still, as several reports reveal, this does not make it any more likely to offer everyone equal treatment. Poor people and foreigners are among the first victims. They are often one and the same person. The situation in France is therefore far from perfect. The recent law of 24 July 2006 on immigration and integration was passed in a general climate of rejection of migrants/foreigners, which is a fairly widespread phenomenon in the countries that make up Europe today. In fact, France has crossed a boundary by rejecting outsiders and has broken with a long tradition of welcoming new arrivals. Although the new law does not restrict the rights of ill foreigners, it does nothing to improve conditions for people from abroad, both on arrival and during their stay. Unfortunately, this is just like elsewhere in Europe. The implementation and enforcement of specific rights for foreigners suffering from illness represents a constant struggle in the fight against AIDS, and especially for AIDES in France. We are proud to have succeeded in establishing a specific provision that allows a foreigner whose illness would not be treated in their country of origin, and which would therefore pose a threat to their life, to stay in France. He or she is now entitled to a one-year residence permit. If the conditions for accessing treatment do not improve in his or her country, the permit can be renewed. In principle, the residence permit also gives them the right to work. This means that new arrivals enjoy a particularly privileged legal status in France. It’s not unique in Europe. Other countries have passed similar legislation. 7 The purpose of this work is to show all Europeans that this sort of legislation is possible, desirable, in compliance with international conventions, and just. It is feasible because it has not caused a wave of health asylum seekers. When you decide to leave your country for life in a new land, you have to have a good reason, but no one wants to develop a serious medical condition that cannot be treated in one’s country just to enjoy treatment abroad. It has enabled France to fulfill its international commitments, in particular those contained in the European Convention for the Protection of Human Rights and Fundamental Freedoms, of which Article 3 prohibits inhumane or degrading treatment. We obviously hope that this document will help campaigners across Europe involved in the fight against AIDS and those dedicated to defending human rights to promote the emergence of similar provisions. This specific provision, for foreigners living with a serious disease, is just. It’s normal that we should be expected to compensate for our past failure to make treatment available to developping countries. It’s true that The European Union has made a contribution by providing financial assistance to the Global Fund to Fight AIDS, Tuberculosis and Malaria. But European countries are still lagging behind. They have set themselves the goal of devoting 0.7% of GDP to official development assistance but, with the exception of northern Europe, Europe as whole is not up to speed. What’s more, few are involved in the International drug purchase facility (UNITAID), a French initiative supported by AIDES. Providing a home for people from the south and allowing them access to treatment in Europe forms part of an international assistance effort too. It’s important to reflect that all of this was only made possible with strong political support backed by an equally strong commitment from the public to achieving these goals. If campaigners don’t say it, governments won’t do it. You can speak! 8 Luís Távora Tavira, Medical Doctor PORTUGAL Constraints mainly in non-medical situations Presentation Luís Távora Tavira, 48, Medical Doctor, Specialist in Clinical Pathology, PhD in Tropical Medicine at the Institute for Hygiene and Tropical Medicine, Nova University, Lisbon. Presently, he is: • researcher in the Training and Clinical Investigation Unit on Tropical Diseases; • director of the Central Laboratory of Tropical Pathology (Institute for Hygiene and Tropical Medicine); • university professor for Microbiology and Parasitology at the Faculty of Medical Sciences, Nova University; • scientific coordinator at the Malaria and Other Tropical Diseases Centre – Associated Laboratory, Foundation for Science and Technology. Dr. Távora Tavira has worked with migrants since 1994, collaborating in interventions promoted by migrants’ associations and NGOs within the health area and, later, implementing research programmes such as Epimigra. HIV-AIDS STI-related problems felt in the work with migrants The constraints are felt at different levels. They mainly crop up in non-medical situations: notably, communication barriers with some migrant subgroups, and problems (especially for undocumented migrants) with access to health care services. The high mobility of some migrants raises big problems for any programmed treatment scheme. Other obstacles are within the legal and bureaucratic frame, constraining the continuity of diagnosis and treatment of HIV/AIDS and related infections, as well as constraining secondary and community prevention. Difficulties faced by documented and undocumented migrants in accessing health (prevention, care and support) The major problem, usually not well documented, is the access to treatment systems. This access is conditioned, among other factors, by the legal and economic (work) situation, time, linguistic and cultural barriers and incompatibility of health and other services with these conditions. In a non-formal scheme, such as in specific programmes for migrants, the migrant legal condition does not form an impediment. This is not always the case, however, in the National Health System. Constraints on the level of access have to do with a lack of motivation to agitate against stigmatising diseases such as HIV/AIDS. This has implications for the whole process: primary and secondary prevention, individual and community support, and treatment. 9 IRELAND , Buyiswas story1 “I still have plans for my lifeand have hope” “I came to Ireland from South Africa in 2003. I came to join my husband who was here already. We both sought asylum and were declined. I have now applied for Humanitarian Leave to Remain, and we are waiting on a decision to this day. At that time, I didn’t really know where Ireland was! My family and husband had to help me out to fund my trip; I just knew I had to get out of South Africa. I had already been diagnosed with HIV in South Africa; it was during a routine ante-natal screening. I was totally shocked and terrified at the time… terrified for myself, but most especially, for my baby. I did not get any medication to prevent me passing on HIV to my child, and she was not tested in South Africa when she was born. I waited until we got to Ireland to test her. When we arrived here, we went to a clinic for asylum seekers who referred me to the hospital. They also arranged for my baby to test and thankfully she was negative. I found my treatment in the hospital to be good, they gave me hope. They didn’t treat me any differently. I like that they keep the information confidential. I know I will be on medication one day and I am glad that I will have access to it. Back home, so many people have HIV… there is so much stigma around it. Because of my asylum status I am not allowed to work. I have to wait on a decision from the Department of Justice. This is very frustrating. It is hard in so many ways. I have no choice over where I live and I cannot work to occupy my day. I feel like a child, I have no choices and no control. The years are going by and there is still no decision in my case. This is very frustrating. My home is Ireland now and I like it here now. I feel I am strong and want to work; I still have plans for my life and have hope. But only God will help me and decide.” 1 This contribution was made possible by Buyiswa, the Social Work Team in the GUIDE Clinic in St. James's Hospital, the Dublin AIDS Alliance and Open heart House. 10 SPAIN Testimony of P.M., a 34-year-old woman from Guinea (West Africa) “Everybody treats me very well” “I have lived in Madrid for one year now. I came to Spain with the help of one of my relatives who established contact with the doctors of one of the hospitals. I came here to get free medication. The doctors in my country diagnosed an infection with the HIV virus, but there, it is almost impossible to get medication. So when I had enough money I bought a plane ticket and came to Spain. My husband stayed in Guinea. He also has AIDS, and it is difficult for us to send him medication. What we would like to achieve now is to bring my husband here as well. But it is so difficult to get legal documents. I do not have any either. We would like to live in Spain permanently. It is very hard to find work, and since I do not have legal documents, the work I get generally is only for a short time, and I have to work long hours. What concerns me most at the moment is to find work so that my husband can also have medication. As for the treatment I am receiving in the hospital in Spain, I have to say that it is very good. Everybody treats me very well. Even without a residence permit I received the ‘tarjeta sanitaria’ (a card giving access to public health care) without any delay, and thanks to this card they treat me in the hospital and give me even free medication. I am very happy, because I know that this medication is very expensive. I continue to have my examinations in the hospital, I am having blood tests there, and they ask me how I am doing. I have also been in contact with an NGO where workshops on HIV prevention and health education are given and the people help with employment problems wherever they can. Having AIDS is not what concerns me most at the moment. What is really hard on me is not having a job and not knowing whether or not I will receive the residence permit. I do not feel rejected in Spain for having AIDS, but I’m not going around telling it to everyone either. They already explained to me that if I continue to take my medication and take care of myself, things could go well. This reassures me. If I were in my home country now, like my husband, things would be different, because we do not have any means over there.” 11 An interview with Anne Van Lancker The cost of denying health care “Ensuring access to health care for undocumented people costs far less than denying them that right.” Anne Van Lancker is a Belgian mem-In some European countries, like Belgium, undocuber of the European Parliament for the mented people with a severe disease have the right Flemish Socialist Party (SPA). She was to medical treatment if they need it. In some other a member of the European Convention. countries it is illegal for medical doctors to provide She sits on the European Parliament’s medical care to undocumented people. What is your committees on Employment and Social opinion in this discussion? Affairs, on Women’s Rights and Gender Equality and on Development. She’s Undocumented migrants also have rights. Countries the president of the working group on that are party to the International Covenant on Reproductive Health, HIV/AIDS and Economic, Social and Cultural Rights recognise, for Development. example, the right of everyone to the highest attai nable standard of physical and mental health and the right of every child to education. Basic rights like access to education and medical care are essential to ensure a relatively decent existence in illegality. But many countries deny even their basic rights, restrict it to cover only urgent care or render health care inaccessible by charging high fees to undocumented migrants. Sometimes schools and hospitals are even obliged to report the presence of undocumented migrants to public authorities. These practices are unacceptable. Even though in Belgium undocumented migrants have access to ‘urgent’ health care, a lot has still to be done to ensure that necessary health care is given to migrants who need it. Informing and sensitising medical staff about migrants’ rights and spreading good practices is an absolute necessity. What is your reaction to the statement that is often heard that sick migrants will come en masse to Europe if we practice a ‘too human policy’ with respect to the rights of undocumented people with a severe disease? There are no clear data on the number of people who have migrated to Europe for medical reasons. Ensuring that people without legal residence have access to basic rights may have some effect of attracting more migration, but it is thought that purely ‘medical tourism’ has only a very limited share in global migration. The occurrence of this phenomenon might differ widely among the European countries, depending for instance on their links with countries of origin. It is much more an internal phenomenon within the European Union and even there, abuses are scarce. National policies that deny undocumented migrants access to 12 BELGIUM You can speak! 13 health care certainly did not stop undocumented migrants from coming to their territories, but puts them and the local population at risk for their health and even their lives. This is a very high price to pay for combating possible abuses. Do you think undocumented migrants should be covered by the Social Inclusion Policy of the European Union? What consequences could this have for undocumented people with a severe illness, or what perspectives could it offer them? Europe’s Social Inclusion Policy should aim to give the most vulnerable people opportunities in society and ensure their basic rights. Therefore this policy should not be limited to people with legal residence status, but also include undocumented migrants. Best practices in countries should be exchanged to improve member states’ policies with regard to access to health care and other services. This would certainly benefit undocumented migrants, because it would show that the cost of ensuring them access to health care is far lower than the cost of denying them that right. What policy would you recommend to the EU and its members states regarding assigning resi- dence permits on humanitarian grounds? The national legislation of most member states provides for the possibility of granting protec- tion outside the scope of the Geneva Convention, to individuals persecuted for other reasons than those laid down by the Convention, or who find themselves in exceptionally serious cir- cumstances which justify not sending them back to their country of origin. On the European level though, subsidiary protection status (protection to non-refugees) is limi- ted to only those people who cannot return to their country of origin because they fear being subject to torture or inhumane treatment. Residence status for humanitarian reasons should also be given to people whose lives would be in danger because they cannot get access to adequate health care if forced to return to their countries. But member states have to tendency to grant subsidiary protection status in a very restrictive way. PORTUGAL António Carlos President of an NGO Medical Doctor and Public Health Specialist in a Lisbon Health Centre Problems with health care in the front office The major problems migrants face in accessing health care are with the administrative personnel, in the ‘front office’. In Portugal, either you are in a legal situation and have the same rights as citizens, or you are undocumented and your access to care depends on the sensibility and goodwill of those dealing with your case. If you are undocumented and HIV positive, the situation may get worse, ending in refusal when you want to register in a health centre. Notwithstanding, there is legislation which clearly states that both documented and undocumented migrants have the right to health. Our legislation is among the most advanced in Europe, but theory and practice do not always come together. This is due mainly to administrative obstacles: in the health services there is too much bureaucracy and ignorance of the law. Some municipalities are unaware of their obligation to provide undocumented migrants who have lived in the country for more than ninety days with a health services card. Others are not willing to issue the card because of prejudice and xenophobia. There’s another big obstacle: migrants not knowing their rights, as a result of which they can’t stand up for their rights. Having good laws is not enough. It is necessary to monitor the implementation of those laws, to identify the reasons why they aren’t fully adhered to and to see if there is a link between access to health and social exclusion, problems which migrants face on a daily basis. You can speak! 14 FRANCE , 1 Raymonds story “I decided to take myself in hand” Born in 1957, Raymond lived in Douala, Cameroon until 2001. At the time of a stay in Europe, he found out he was HIV positive. He has never gone back to his country. He lives and works in the suburbs of Paris. “In 2001, I decided to go to Europe for holidays and some purchases. I took a two-month vacation which I had not taken for two years. I’ve never been home since then. I left Douala for Paris, in transit before going to Berlin for a few days. When I returned to Paris, I joined my family. During my stay, I decided to take some medical tests. I had a blood test and they told me to come back for the results. That day, they didn’t tell me anything. The doctor told me I had to do another test and come back a week later. It was then that I found out I was HIV positive. The doctor said he was sorry for me and that I had to stay in France for treatment. I never had health trouble before, never suffered from fatigue, absolutely nothing. I knew that I could have access to treatment in Douala but I also knew that my wages were too low to pay for it and to take care of my family. I had no choice but to stay in France. I was stunned by this news. I called my wife to tell her I am HIV positive and to advise her to take tests. By chance, she was not HIV positive. I explained to her what the doctor had said to me about treatment, and the need to stay in France 1 Testimony from the report of the French national forum on migrants/foreigners affected by HIV/AIDS, organised by AIDES, Lyon, November 2005 15 FRANCE to have good health care. I told her we had to separate. This decision was not easy to take. I did not know if and when I could go home, and it was the only way for me to protect her from HIV. I told my wife to inform our two oldest children (they are 15 and 17) but not our two small daughters who are too young to know my real reasons for staying in France. They think it is only for work. I have a lot of family in Paris: sisters, aunts, cousins, half brothers. When they found out what I had, nobody helped me. I was rejected by everybody, even those I helped financially at other times. Solidarity is ‘hot air’: everyone abandoned me. It almost destroyed me. I lost a lot of weight at this time. It was not because of the disease but because of the rejection. They built a barrier to protect their health. I had difficulties they knew about. I went from one place to another. I lived in squats and even in the street. My family never offered to help me. Everything changed when I met Annie, an activist in AIDES. She saved me, gave back my self-confidence. I still don’t know how she did it, but I know I owe her everything. I decided to take myself in hand. I sold one of the two houses which I had in Douala. With this money, I bought a car and I lived in my car, for many months, almost two years. I bought a dog (it protected me when I slept in my car) and I worked shifts as a security guard. Little by little, I managed to get by. Then, I worked in temporary jobs, got pay slips, and began a new career here. Now, I work in the building industry. Administratively speaking, I got three one-year residence permits. The current one will expire in September 2006. This time, with the help of AIDES, I have applied for a ten-year residence permit. I have prepared my file and provided all the necessary documents including my pay slips. I’m waiting for the answer. Fortunately for me, I didn’t have problems with my treatment and no side-effects. I changed my medication several times but never because of incompatibility. In Avicene hospital I was lucky to be in contact with doctors from the North African countries – Togo, Congo – with whom everything went well. My current doctor, a Congolese, is leaving for another hospital and I’m a bit worried not to know who will replace her. Today, I am rather proud of my success. I have met a young woman with whom I live. She knows I’m HIV positive and accepts it. It’s a good thing for me. Soon, I should have new professional opportunities which should give me a better lifestyle. I will be able to bring my children here whom I haven’t seen since 2001. But I’m waiting for my financial situation to improve. My children wouldn’t understand, and rightfully so, that I would bring them here without giving them the same life as they always had in Cameroon. I often ask about them, I miss them. My youngest daughter whom I spoke to on the phone a few days ago asked me: ‘Dad, when are you coming back?’” 16 SPAIN , G.C.s story Getting by very well G.C. is a 56-year-old man from Peru. He has stayed in Spain for seven or eight years now. He has come to Spain due to a legal problem in connexion to which he claims to be innocent. He sought refuge in a house in Madrid that is shared by various Peruvian persons, among others his 25-year-old daughter and a niece. He came with a tourist visa and the intention to stay in Spain. He did not find a job legally, but he did some work (removal man, waiter, cook, distributor of publicity in the streets) without contract for friends or acquaintances. For this reason, he travelled occasionally to Seville, Malaga, Barcelona, Jaén, and to some other places like small villages. In 2002, he discovered that he was carrying the HIV-virus by a blood test taken in the ‘Clínica Sandoval’ in Madrid. A friend of his had various ‘venereal diseases’ and recommended him to take an AIDS test. G.C. has not told it to anyone in his family and fears that his wife, from whom he is separated, might be infected too, even though he thinks that he has been infected in Spain, because he did not have contact with prostitutes before. Access to care Some of his jobs were very well paid so G.C. did not attach much importance to the fact of working illegally. He is not going to take measures to obtain a residence permit and he has a ‘tarjeta sanitaria’ (a pass giving access to public healthcare), although he thinks this might be a problem in the future. He admits some fear of being expelled from Spain, but he is aware that many people he knows live in the same circumstances. 17 He believes that his respectable age and appearance are an advantage to him, but there are things he cannot do, anything requiring an identity card or a visa. This makes him seek help calling on friends or on his daughter (the latter less frequently since he learned about having HIV). SPAIN At the centre where the test was administered and where G.C. continues to go with a certain regularity, they explained to him very well the nature of the virus, the problems it might cause, and what he has to do in order to check its development and how to prevent infecting other people. He admits that he is not too rigorous in going there, because sometimes his appointments will coincide with professional appointments. In these cases he considers the professional appointments as more important, also because he feels that he owes it to his friends who give him this work so he can earn his living. Living with HIV-AIDS G.C.’s state of health is good and he does not need any medication, which is why he thinks he was infected only a few years ago. He has a very good opinion of the treatment he received at the hospital where he went about eight times since the diagnosis of AIDS. He is convinced that only a few of his Peruvian friends know about his illness. No one in his family does. Some of his friends also have HIV and they also keep it secret. However, he knows of some people with HIV who believe that nobody knows about it. He is aware that the same might happen in his case. He had a few problems related to racism, but does not relate them directly to racism, rather to young people and to ways of entertainment, to alcohol and drugs. He received help from Caritas (via a church) and Caribú, organisations based on voluntary work, and did not need any help from Spanish people. All the help he got came from Latin- American people. You can speak! 18 Tullio Prestileo, ITALY Medical Doctor Ospedale Casa delSole/Pisani, Palermo (Regione Sicilia) The law, human rights, and services My personal experience in the care of undocumented migrants and foreigners can be summarized as follows: 1 .Legislative decree no.286 dated 25 July 1998 (paragraph no. 34 and 35) assures any foreign person the full rights and duties of Italian citizens as far as medical care, daily hospital or continuative urgent treatments are concerned; complete pregnancy assistance will be provided without any difference between Italian and foreign women; minors’ health will be safeguarded through a vaccination programme authorised by different Italian regions together with the adoption of international prophylaxis, diagnosis and treatment of infectious diseases. However, foreign people still have some difficulty, in the fields of prevention and treatment, to access Italian health facilities. Moreover, following a recent modification of Italian law it has become more difficult to obtain a residence permit bound to a job contract, and, consequently, more guarantees for health care. The impact of this law change has worsened the quality of life of undocumented migrants, especially those populations that are weaker and vulnerable, such as HIV-positive people. 2 -Healthcare workers, without any distinction of roles, have been looking for any solution to go around the limitations set by the current law. Volunteer organisations and NGOs have often been on the frontline in this regard. For example, at Palermo, Sicily, S. Chiara Outpatients Facility, and the Maddalena project take care of undocumented migrants. 3 .In some cases, journalists have documented human rights violations in Temporary Centres, where undocumented migrants are held when they enter Italian territory. 4 . In my opinion, undocumented do not pose a risk to public health. Cases of tuberculosis are few. I am publishing a study which shows that sexually transmitted infections, and especially syphilis, are as common in the general population as in migrants, with no social or racial distinctions. 5 .The Istituto Superiore di Sanità, the Italian National Focal Point of AIDS & Mobility Europe, has carried out a national study of centres that take care of migrants. It was found that there is a great heterogeneity in their offer of care and services. The main points of criticism are related to differences in language and culture, and to the relationship between health provider and foreigner/migrant. Shortcomings here form an obstacle to taking full advantage of the services that are operating in Italy for undocumented migrants. 19 Hidden refugees forgotten in the health care system The first of the sixteen medical ethics rules says: “When conducting his duties, a doctor’s primary concern shall be the patient’s health”. Naturally, this applies to all patients, except for those patients who are in Sweden illegally. He stands leaning against the wall at the doctor’s surgery, in the middle of the muddle of people and the first thing he says is that he wants to die. That he cannot understand why he should live, be on this earth any longer. Why should he be awake when he can never sleep, eat or think clearly? Why take the small white tablets that will calm the chaos just a little bit when the fact is that no one wants him? Not Sweden. Not Bangladesh. He is not allowed to be anywhere on the entire bloody planet. “I am not a person any longer,” he says and stares straight ahead with a gaze that does not see. He has tried to kill himself a number of times and his arm is full of small, fine scratches on his yellow skin. These are the wounds he has inflicted upon himself. Then there are the others, the ones the security police in Bangladesh inflicted upon him. Ripped out his fingernails and burned him with cigarettes and even worse things that he doesn’t think I will be able to stand hearing about. He strikes his temple with his hand and mumbles manically, more to himself than to those who are listening. “They ruined my mind too, made it so that my brain can no longer think quiet thoughts. It is always wandering about, first here then there. Never calm, never still.” He actually needs proper medical care for his wounds, both inside and out. He knows that but he has been in Sweden illegally for five years and cannot visit a hospital as the risk of being discovered and sent home is far too great. Not only that, patients who seek care at a hospital in Stockholm and whose identity cannot be established or who are not Swedish citizens must pay for the cost of a private visit. An acute visit then costs 1,100 kroner (118 euros) instead of 225 kroner (24 euros), the cost for a Swedish citizen. Money that most of those who are in Sweden illegally, live in hiding and are totally dependent upon other’s good will in order to support them, do not have. It has happened all too frequently that if a person stands at the reception counter at the hospital and cannot pay the 1,100 kroner for their doctor’s visit, the staff then telephones the Swedish Migration Board and asks who is going to pay for this sick person who is in Sweden 20 illegally. The Swedish Migration Board, in its turn, phones the police. This is how many illegal refugees have ended up on a plane back to their homeland. This is why he stands and waits there against the wall in the little room that, for the evening, has been turned into something that looks like a field hospital with people who are standing and sitting everywhere. He stands there and waits because he, in fear of the police, hardly dares to go outside the door of the little flat he shares with a fellow countryman after being homeless for a long time. But he is also at the surgery to get the small sedative tablets that he takes so that something inside him will actually live. Some higher force inside him doesn’t want him to slit his wrists and die. Secret doctor’s surgery The doctor’s surgery for illegal refugees is open one evening each week in a place that is kept secret for all except those who require medical care. The surgery is not for profit and medical staff work for free. At the moment, there are six doctors, three nurses and two mas- seurs. Some people call them heroes, but even as a Swedish doctor one is obligated to fol- low the Swedish Medical Association’s sixteen ethical rules. The first of the sixteen medical ethics rules says: “When conducting his duties, a doctor’s primary concern shall be the patient’s health ”. Not finances or refugee policies. It’s more like if you deny illegal refugees medical care, you follow the law but break the ethical rules. If you follow the ethical rules and provide care to patients who nei- ther have money nor a confirmed identity you are breaking the law. As in many professions, it is difficult to combine professional ethics and finance but Sven, the psychiatrist at the sur- gery for illegal immi- grants, feels that it is solely about civil cou- rage from the doctor’s point of view and no more difficult than that. They must be reminded about why they studied at the university for so many years, took on sky high student loans and wanted to become doctors. He is conscious that many doc- tors end up in a stress- ful situation when they have to think about bud- gets all the time but says with all certainty that there is always time to spend a half hour to take a patient who is seeking care aside and listen or care, despite the fact that the person’s iden- tity cannot be establi- shed. It is about being submissive or cowardly or standing up for what one feels is right. “But as usual, those who have the courage quit and those who agree with everything become managers,” says Sven and sighs. However, Sven’s job is becoming all the more difficult. He says that, in recent times, the Swedish Alien Appeals Board is becoming as hard as nails. No one is allo- wed to stay. It doesn’t matter what sort of cer- tificate one has from a doctor, how many suicide attempts one has made or if one has small chil- dren. Since some months ago, it has become impos- sible to get a residence permit. Now, in recent times the police have called on psychiatric SWEDEN You can speak! 21 surgeries and asked after persons who were suspected of being in Sweden illegally. The staff has been cooperative. Many have been sent home in this manner. This makes Sven’s job at the surgery almost impossible, as many of those who seek his help are extremely unwell and many times it is necessary to seek assistance from other health care departments. “For a while, I didn’t dare send anyone further to the psychiatric department even though I saw that a patient absolutely needed it. I didn’t dare risk their lives that they might be sent home. It is easiest to impose the law upon people who cannot speak their minds, refugees, substance abusers and the homeless.” So now, Sven’s job at the surgery has gone from writing certificates to the Swedish Alien Appeals Board and trying to warrant a continued fight for a residence permit to trying to get the patients to accept reality. In the present situation, they will not receive a Swedish residence permit and it is just as well that they come to terms with living in hiding for a while yet. No one in need should be denied care However, the problem actually lies in forming an opinion of what is acute and what is not. No one who is in need of acute care can be denied care, regardless of unknown identity or a lack of funds. But acute care becomes more expensive when a patient’s identity is unknown, so what is judged as being acute or not it done with a directive to keep down overall costs. Anita Dorazio, former Swedish language teacher for immigrants and now coordinator at the doctor’s surgery for illegal refugees, does not trust doctor assessments where a patient’s need for acute care is concerned. She has been involved in a case where a birth was counted as a borderline case. She doesn’t have much faith in the healthcare system. Consultant Bo Ringertz at the Karolinska University Hospital does not agree with Anita Dorazio’s critique but says that ethics always come before finances, at his hospital in any case. Guaranteeing a person’s health is always more important than guaranteeing his or her identity and no one is denied care. When asked why the doctor’s surgery for illegal refugees must exist at all if the hospital never denies anyone care, Bo Ringertz says that the problem often lies in the fact that it is so difficult to be accepted into the healthcare system. That it takes such a long time before one is given the opportunity to speak with a doctor but when one is able to do so, he doesn’t think that there are many doctors who would breach medical ethics and deny someone care. “The healthcare system takes no position where the immigration policy is concerned. We only take a medical ethics position and it is each doctor’s individual decision from case to case,” he says. However, he also admits that he is forced to limit the treatment of illegal refugees due to a directive from above. It is far too expensive when there isn’t someone to pay the bill. “Offering care to patients whose identity is unknown is not something we encourage but we trust that the doctor in question will take his ethical responsibility toward the patient,” says Bo Ringertz. Published in Situation magazine, Stockholm, April 2003 22 IRELAND , Hopes story1 , “I didnt know what to do I was confused I thought I was going to die” ‘My name is Hope. I am from South Africa. I came to Ireland to seek asylum in 2001. I was diagnosed with HIV the second week after my arrival. It was like my world is ending because I had two kids back in Africa. I didn’t know what to do – I was confused – I thought I was going to die. After I was told the news about being HIV-positive I had to move from the hostel in Cork where I was living. I came to live in Dublin. I had no friends or no family; I was too much isolated because I couldn’t talk to anyone about my HIV issue except the hospital. I attend the Mater Hospital. I told the social worker in the hospital about how isolated and afraid I am. He helped me a lot. He helped me to get private accommodation and to move from the hostel in Finglas where I was getting 19.50 euros per week, there was no privacy for me – I didn’t have a place to put my medication in the fridge. I was continually bleeding; I didn’t have enough money to buy pads for the menstruation. I moved to a private accommodation, then things became better. He also told me about Open heart House where I met the people who showed me what support, care and love are all about. I was so happy to see friendly and caring people like them. Their kindness gave hope and I felt: oh God, I entered the right place at the right time. I am now a member of the Open heart House. My asylum case was still going on. At some stage I was working because there was a need for my kids back in Africa. One day we were caught working, me and my friends and some others. Most of them were send back to Africa, ‘were deported’. I was so afraid I became confused and depressed. Then I went to seek advice on what I could do and the person who advised me told me that I was going to be deported as well so it would be better for me to go back. The person told me about the company that buy tickets for people who want to go back to their countries. I went to them, they bought me a ticket and I was ready to go. I knew I was making a mistake to follow the person’s advice. I was supposed to leave Ireland on Wednesday. On Monday I called the manager at Open heart House to tell him about my problem. He told me; “No, I must not go.” I was crying a lot, frustrated but he was so kind and so friendly and I felt good talking to him. I cancelled the ticket; I told them I was not going. 1This contribution was made possible by Hope, the Social Work Team in the GUIDE Clinic in St. James's Hospital, the Dublin AIDS Alliance and Open heart House. 23 IRELAND Sometimes I tell myself if I hadn’t gone to Open heart House that day maybe I would have been back in Africa suffering or dead. Some of my friends whom I met from Open heart House have been deported back to Africa. They call me and tell me how hard life is for them living with HIV in Africa. One of them is dead because of AIDS. There was no help for her and I always feel sorry for her; that if she was here she might not have died because she was on medication but she couldn’t get that type of medication in Africa. I am happy here in Ireland. I have never gone back to Africa since I came, my kids are now living with me and now I have a residence. I’m so happy. I always thank Open heart House because I could have been in Africa now if I hadn’t gone to seek advice that day.” 24 A social worker’s testimony BELGIUM Migration policy... which policy? The Belgian non-profit organisation Zorgwonen provides lodging in Brussels to underprivileged people living with HIV/AIDS, their children and their direct relations. Zorgwonen helps them find suitable and affordable housing and offers individually tailored support in collaboration with other services and organisations. The all-round assistance offered by Zorgwonen seeks to improve people’s health and general well-being. Inge Schepens is a social worker with Zorgwonen who has first-hand experience with the obstacles which HIV-positive migrants face in dealing with the Belgian Immigration Service. “At the start of 2006, I was confronted with a rather disconcerting decision taken by the Immigration Service concerning the regularisation procedure of a lady to whom Zorgwonen is providing assistance. She had travelled to Belgium on business from the Democratic Republic of the Congo (DRC) on a three-month visa. In Belgium she fell ill and was diagnosed with HIV. She had to start taking medication immediately. On the ground of her serious medical condition, she was granted temporary residence. When the term expired, she was refused an extension of her stay. According to the Immigration Service, treatment is available in the DRC. Doctors Without Borders have started up an AIDS project there which can deliver the specific treatment she requires. However, Doctors Without Borders have stated that their project should not be used as an argument to deport people. The project is still far from capable of accommodating all local people in need of treatment, let alone Congolese nationals returning from abroad. In spite of this, the Immigration Service took similar decisions a short time later. These did not only affect HIV positive people from the DRC, but also people from Burundi and Rwanda. These are people who received medical attention for several years and who were on tritherapy. One of them was a three-year-old girl, born in Belgium, whose life was narrowly saved by specialists in Brussels shortly after her birth. An unworkable procedure The Immigration Service are seriously in arrears in addressing the cases presented to them. The residence permit of the lady from the DRC expired before the Immigration Service could address her request to extend her stay in Belgium. As a consequence, she had suddenly become an illegal immigrant. The Immigration Service took three months to address her request for an extension. In the end, she was issued a new residence permit which would only be valid for three months. This seems most impractical, because it would mean that the Immigration Service would immediately have to consider another request for an extension which the permit holder would inevitably submit. This procedure is not workable. Moreover, the criteria according to which the files are reviewed are anyone’s guess, due to the complete lack of transparency at the Immigration Service. 25 BELGIUM Enforcing basic rights We see that people with a serious chronic illness often have to enforce support and a residence permit by way of prolonged administrative and legal procedures. In a constitutional state, are things taken care of properly when basic rights have to be enforced in this way? And where to get the energy to enforce one’s basic rights when one is suffering from the consequences of not enjoying them? Can anyone explain to me what exactly is my task? Why does the government invest in supporting these people and orientating them towards a liveable future? In the case of the lady from the DRC, she attended several courses, including a Dutch-language course and several business courses which she completed successfully. But to what end? An unreasonable stipulation attached to her temporary residence permit prohibited her from working in view of her medical condition. This doesn’t help the integration process! It also stigmatises people as being more gravely ill than they sometimes are in reality. Would it not be more sensible to allow people with temporary residence permits to find employment, if returning to their country of origin is not an option? I doubt that the current policy is benefiting the health of all our citizens. Perhaps the government should consider making the Immigration Service part of the ministry of Health, because sometimes I get the feeling that this policy is having negative effects on my own health as well.” 26 SWEDEN , Mikaels testimony about his friend Sebastian: Denied the medication he needed to live “I met Sebastian, 31 years old, in October 1999. He was my friend and an angel who touched my heart. He was a very sweet, kind, nice, beautiful, strong and thoughtful guy whom I fell in love with and it turned out that he felt the same way about me! We were extremely happy during the time we spent together but it turned out that we were living on borrowed time. Medication would start soon Sebastian came from Chile and hadn’t managed to become a Swedish citizen, although he wanted to. The first night we met, he told me that he was HIV-positive and had begun developing AIDS. Earlier in the year, he had spent three weeks at the Karolinska University Hospital. Anti-retroviral medication was what was needed to help him but he could not begin treatment until he became a Swedish citizen. Time passed and things between us were fantastic. He was so strong, happy and positive despite all he had to bear. At times we actually forgot that he was sick, he felt so well. We were going to be engaged at Easter of 2000. He was the love of my life and will be so for eternity. Sebastian became ill in the beginning of March and after he had a fever for six days, I took him to hospital. They thought he had pneumonia and he was treated for it but it didn’t help. They then thought it was tuberculosis and began treating him for it but it didn’t help either. We became more and more worried. We asked several times a day if he could be allowed to begin treatment with anti-retroviral medication. Every day, they said the same thing, “Soon, in a few days.” Breathing problems I felt so helpless, so powerless and so incredibly sorry for Sebastian. He suffered from severe fever attacks four times a day, causing his entire body to ache. No pain-relieving medication helped him. He couldn’t sleep at night due to the pain and he was afraid of dying, his pulse raced. He also began having problems breathing and was transferred to intensive care for a blood transfusion and was given help to breathe. They also gave him oxygen. He couldn’t eat much anymore either. I lived with him at the hospital as he felt safer then. I nagged and nagged about them starting his treatment. Sebastian finally began his treatment on 5 April. Three nurses came in the next afternoon and helped him breathe; he was given a special breathing mask that Sebastian thought was the only thing that could help him. It was a bit difficult to handle, so later on that evening he was 27 SWEDEN moved back to intensive care (Mava). The doctor called me into her office; she told me that Sebastian didn’t have much longer to live. The medication had been started too late; he was too weak to take it now. I was in total despair but I tried to stay strong for Sebastian’s sake. Sebastian’s was now deeply worried, his pulse raced even faster and he had problems breathing due to his fear of dying. A doctor entered the room and said to us that Sebastian should try to calm down so that his pulse would go down and that his breathing problems were just his imagination. This was a lie. Sebastian tried to calm down a bit but was so terribly afraid of the fever attacks that caused him severe pain. Tuberculosis It was a very tough night; two nurses were in with him for several hours. Sebastian’s aunt was also there the entire time. The nurses fought hard so Sebastian would be as comfortable as possible. Sebastian didn’t sleep at all that night; he was in too much pain. Early that morning I wanted to get hold of a doctor so I went out and sat in the corridor. Then a doctor who was far down the hall shouted that I should get back in the room immediately as Sebastian had just been diagnosed with tuberculosis. It was terribly unpleasant. A doctor came in who said that Sebastian was to have a bone marrow sample taken that morning before he would be moved back to his room on the ward. A bit later, Sebastian wanted to get hold of a doctor but none were available. After several hours a person came in and said that the bone marrow test would be postponed. Then the porter came in and took Sebastian back to his room. A physiotherapist assured Sebastian that he would have a breathing mask with him, but Sebastian did not get one. It was too difficult and qualified for the staff to take care of. He was eventually given another mask and it went OK. Both of us still had hope. A doctor came in to try and calm Sebastian down but it was very hard. He wrote a note to the doctor because he had a difficult time talking. His writing was uneven and weak as he didn’t have much strength left. I said, “Why do all the doctors say that the breathing is normal?” He understood that they lied to try and calm him down. After a while another person came in who said that they were going to do the bone marrow test anyway. Sebastian wanted me to help him go to the toilet. I said that he could pee in a bottle but he was stubborn and didn’t want to bother the nurses unnecessarily. I helped him. He was very weak and his whole body was shaking but he did it. He was so very proud and I was too! It was so incredibly strong of him to do that. A doctor came in who was going to take a bone marrow sample. It meant that Sebastian had to lie on his stomach, something that was very difficult for him due to his breathing problems. He did as he was told to do and managed it. Despite everything, both he and I still had hope that he would make it. 28 SWEDEN Death! Several hours later, at 5:45 pm, Sebastian died. He passed away while I held his hand. He was so beautiful. I stayed with him for many hours. Part of me died at the same time but I know that he is still with me every day, every hour. It is so incredibly difficult to accept that a person in modern Sweden is denied medication, that bureaucracy counts when it’s about life or death. I feel an extreme emptiness and longing but also extreme warmth that I met Sebastian. I am going to Chile and see the area where he grew up and where he was buried.” 29 An interview with Mr. R.M.W. Smeets, chairman of the National Committee on Medical Aspects of Immigration Policy “A policy meant to deter should still be humane” The National Committee on Medical Aspects of Immigration Policy was set up in the Netherlands in May 2001 by the ministry of Justice and the ministry of Health, Welfare and Sport. The Committee was charged with investigating whether foreigners abuse the possibilities of being allowed into the Netherlands on medical grounds and if so, what consequences this has for admission policy and health care in the Netherlands. The report discusses health care and immigration law separately, but also dwells extensively on the relations between these areas. The following people sat on the Committee: - R.M.W. Smeets, psychiatrist, chairman - Prof. dr. I.D. de Beaufort - Prof. dr. H.B. Entzinger -Prof. C.A. Groenendijk, LL.M. - Prof. dr. N.S. Klazinga - Dr. J. Legemaate, LL.M. - Prof. dr. N.J. Schrijver, LL.M. - W.A.R. Shadid-Moon Sammy, physician - Dr. M. Buijsen, LL.M., secretary (until 31 December 2002) - Dr. A. Terlouw, LL.M., secretary (as of 1 January 2003) -Ph. A. Backx, LL.M., observer ministry of Justice (until 1 February 2003) - S. Terphuis, LL.M., observer ministry of Justice (as of 1 February 2003) -S. van Doorn, M.A., observer ministry of VWS (until 1 December 2001) - F.H. Clabbers, M.A., observer ministry of VWS (as of 1 December 2001) On 28 June 2006, AIDS & Mobility Europe interviewed Mr. Rob Smeets, the chairman of the Committee. Could you sketch the most important conclusions and recommendations of the National Committee on Medical Aspects of Immigration Policy? The Committee was set up because in parliament as well as in the media the notion was current that lots of asylum tourism to the Netherlands was taking place on medical grounds. The main conclusion of the Committee’s investigation is that this is in no way the case. Indeed, it is sooner the other way around: many Dutch people are availing themselves of medical services abroad. The oft-cited examples, Armenian refugees and refugees from the former Yugoslavia, turned out to be exceptions, some of whom had been invited over by the government. If families were sending members of the family to the West in order to profit and thrive from this, they would decline to send ill family members, but rather send people who are able to work. The reason for which the Committee was set up was itself invalidated. That was the main conclusion. 30 31 The Committee considered the legal and medical aspects, the relationship between these aspects, and the framework of ethical considerations. The investigation was based on the lite- rature and on hearings with a large number of institutions and experts. Additionally, part of the investigation was delegated to universities and research institutes. All this resulted in balan- ced conclusions and recommendations. The Committee made fourteen recommendations, each in one of the following areas: 1. Admission and deportation bans on medical grounds 2. Medical examinations during the asylum procedure 3. Positioning and working method of the Office for Medical Advice (BMA) 4. Medical care for foreigners staying in Dutch territory 5. Other Re 1: With respect to the first area, we have said that a ruling about admitting an asylum seeker should be based on the individual circumstances instead of generic ones. These indi- vidual circumstances should also be individually investigated. At the moment this is absolu- tely not being done. Furthermore, medical aspects are not weighed as a factor in the asylum procedure, as though medical findings were no facts. We also concluded that in the case of medical complications for which the Netherlands is responsible, this country is obliged to pro- vide treatment and the foreigner cannot be deported before the treatment has ended. A medical emergency also applies when foreigners are unable to travel due to medical rea- sons. The Committee suggests that this be termed a travel ban on medical grounds, as it is also called in the case of Dutch people. The following four factors are relevant for evaluating whether a seriously ill foreigner should be deported or admitted: • medical treatment the foreigner is on at the moment of evaluation; • article 3 of the European Convention for the Protection of Human Rights and Fundamental Freedoms; • the accessibility and attainability of care; • a travel ban on medical grounds. THE NETHERLANDS You can speak! 32 Re 2: The Committee finds it necessary that asylum seekers be medically examined and that medical aspects be taken into consideration when evaluating a case. In case of possible men- tal trauma, the application for a resident permit cannot be decided in a 24-hour procedure. When the Immigration and Naturalisation Service (IND) interview an applicant, this is very stressful for the person being interviewed. It may strongly resemble situations in their past, which may activate their trauma and cause them to block themselves from the interviewers. Re 3: The Office for Medical Advice (BMA) is part of the IND, which in turn answers directly to the minister of Justice. When the IND considers a medical investigation to be necessary, it asks the BMA to carry this out. The Committee’s pressing recommendation is that the sem- blance of a conflict of interest be avoided by letting the BMA function independently from the ministry of Justice. Individual medical assessments should be independent from the admi- nistrative recommendation on admitting or deporting an alien (the general administrative recom- mendation). The Committee suggests that these two tasks be separated by making the gene- ral administrative recommendation a responsibility of another organ within the administrative system. Medical information may be required for the administrative recommendation, but the function does not need to rest with a doctor. In other words, the BMA should not be part of the justice system. The Committee stresses that all available information should be weighed for the medical advice and the general administrative advice, and if need be, investigations should be made to obtain information. As concerns the BMA’s working method, the Committee found that the BMA fails to adhere to norms and protocols of the profession. BMA doctors assess a foreigner’s medical situation by looking at files and documents requested from doctors in attendance. However, they themselves do not carry out medical examinations. Re 4: The Committee advises the government to take responsibility for, and to acknowledge, that all who are staying in Dutch territory have a right to medical care. The Committee has expressed its concern about the accessibility of care for uninsured people. Re 5: • If the Netherlands choose to deport someone, it should be explicitly established that adequate health care is available, accessible and attainable. • The Committee advises against the adoption of a mandatory HIV screening policy; for one because HIV is not a disease threatening public health in the Netherlands, and also because the rights of foreigners need to be protected. • The Committee recommends that the registration system be improved. THE NETHERLANDS You can speak! THE NETHERLANDS How was the report received in the Netherlands? Have any recommendations been adopted? The minister of Health, Welfare and Sport has adopted all recommendations. The minister of Immigration and Integration has only adopted four out of fourteen recommendations fully (nos. 3, 11, 13 and 14), and two partly (nos. 1 and 4). (See www.aidsmobility.org for the conclusions and recommendations.) The report has been fairly effective. The professional association for medics has indicated its agreement with the report and its support for the recommendations. As a result of the report, some disciplinary hearings have been held against a number of BMA medics. Some judges have used the report and its conclusions and recommendations in their argumentation in cases around deportations. The Council of State, the supreme administrative court, has in some of its rulings based its argumentation on the report, but without referring to the Committee or the report. The minister of Immigration and Integration has made it clear that the recommendations were not appreciated. All aspects have been discussed in a parliamentary debate, but this has not led to fundamental changes in the minister’s decision. According to the Committee, ‘it should be constantly borne in mind that article 3 of the European Convention for the Protection of Human Rights sets out the absolute minimum requirements. The Committee believes that the Netherlands can afford to do more than the absolute minimum’. What is your opinion about the often heard assertion that if the world learns that the Netherlands has relaxed its laws on care for illegal migrants and on resident permits on medical grounds, the country would become a haven and would be flooded by migrants? The complicated thing about immigration policy is that it seems to be meant to be a deterrent. Although this certainly plays a role, and a watch should be kept on possible attracting effects, the Committee believes this is no excuse for a policy which is not humane. A strict policy can go hand in hand with a just and humane procedure. What gives great cause for concern is the gap that has evolved between the political reality in The Hague and the reality of the ordinary man in the street. What do you think about the call to invest no money, or less money, in care for migrants here, but to invest this money in the countries of origin instead? I don’t think it’s a good idea to spend less or no money on migrants in Europe who are in need of help. I do find it logical that European member countries that deport many people to certain countries help to raise the standard of living in those countries. The development of adequate health care in refugee camps in war and disaster zones should also be stimulated, so that these camps conform to international standards. 33 THE NETHERLANDS The issue of care for illegal migrants is clearly very sensitive. Public opinion is veering more and more towards setting limits to solidarity. How would you advise politicians to deal with this? The introduction of the new care system is showing the limitations of the basic care package, also for the Dutch population. The basic package should include the same provisions as ‘medically required care’, which should be accessible to all, including uninsured people. Now there are still differences between the two. The government should create a fund to provide accessible care for uninsured persons. In a while, care will only be provided to people with a Citizen Service Number (BSN). The government does recognise that everyone staying in Dutch territory, irrespective of race, religion and so on, should have access to medically required care and should have this financed, but at the moment this takes so much administrative hustle that it’s cheaper for a care provider not to bother. What do you think about medical tourism? Firstly, I find it a deplorable term: I would rather describe it as using the asylum procedure to get medical care. The Committee’s investigations have shown that this hardly occurs. And in my opinion, the asylum procedure is not meant for that, either. It’s a different story when people pay for their own care. For instance, many Turks living in the Netherlands go to Turkey for medical treatment, and Surinamese family members of Surinamese people living in the Netherlands regularly come over. That is not a big problem. But if care becomes strongly market-orientated, making profits may become a more important goal and the quality of care may decline. Still, something had to change: there was no incentive for improvement. But expectations about the new care system have run too high. Why do you believe there is no specific attention for developing a European-based policy with regard to people living with HIV/AIDS? Immigration policy as a whole is one of the terrains for which a European policy ought to be developed. With borders like Europe’s, countries can’t make up the rules on their own on this issue. It is said that if a European immigration policy comes into being, it will adopt the rules and laws of the country which has the least advanced legislation. This is also one of the problems; the great differences between the member states. Spain, for instance, has issued a general pardon to asylum seekers, while this is absolutely rejected in the Netherlands. Moreover, policymaking at a European level is currently on a sidetrack due to the rejection of the European constitution. What do you think A&M should work on in the coming period? The most important at the moment, I think, is the emancipation of people living with HIV/AIDS, particularly in Eastern European countries. Compared with other diseases, AIDS is still very emotionally charged. People living with HIV/AIDS can lead a social life and participate in society to a far greater extent than the average European believes. Awareness should be raised about this. 34 FRANCE ,1 Andres story: “In our country, we would have been dead” Originally from Central Africa, André, 52, arrived in France in 2003. It is here that he found out his HIV positive status. He lives in Montpellier. “I came to France to visit a neighbour. During my stay, I fell sick. In the hospital, they gave me a HIV test which was positive. This news hurt me, but then I reasoned with myself and considered that if I were in my own country, the situation would have been even more serious for me. There, I would have been abandoned by my family, my friends and all the people around me, and I wouldn’t have got treatment. My wife, who is also HIV positive, came to France. She also found out here. We have six children, a boy and five girls, who stayed in our village 600 kilometres from Bangui. Our children know we are HIV positive. My brother spoke to them about it. My relatives are not informed. Those who know, understand that if my wife and I had stayed there, we would have died like chickens. They know it is very difficult to be HIV positive, but as we live in Europe, they are less worried because they know that we are both treated and looked after in France. I thank France for this service, for our treatment. I know very well that in our country, we would have already been dead. My life in France has not always been easy. Sometimes I did not get treatment because my administrative papers were not in order. It took me a long time with a lot of procedure to get papers. Those of my wife were in order. She and AIDES helped me in the various steps to finally get them. Today, I have a residence permit for one year, renewable each year. I have already had two: in 2004 and 2005. The problem is that I always need to present a medical certificate to obtain this residence permit, which does not allow me to work. So, I receive the Allowance for Disabled Adults (in French: Allocation pour Adulte Handicapé). I don’t know if one day I will be able to go back. I won’t forget that in my country, HIV positive status is not tolerated well. If you say you have AIDS, nobody wants to go near you. For them, you will die, you are already almost dead. Information about prevention, the illness and transmission are not the same there as in France. It’s a real problem.” 1 Testimony from the report of the French national forum on migrants/foreigners affected by HIV/AIDS, organised by AIDES, Lyon, November 2005 35 IRELAND Maeve Foreman Lecturer in Social Work, School of Social Work and Social Policy, Trinity College, Dublin, and member of the AIDS & Mobility network, Ireland1 What does direct provision provide for? The number of undocumented migrants living with HIV in Ireland is unknown, although people working in the area confirm that many HIV-positive service users have an uncertain residence status and are either in the asylum process or seeking humanitarian leave to remain. Both processes can take several years. The latter group includes those who have been refused asylum and those whose work or student visas have expired. Ireland does not yet have a formal system of subsidiary protection for those whose needs are not covered by refugee conventions, and numbers granted asylum or leave to remain are small. The largest group testing HIV-positive in Ireland today are women from sub-Saharan Africa. Support organisations and health services do not usually enquire about residence status, as services are not conditional on people being legally resident in Ireland. The information may be volunteered but is not necessarily recorded. This may change with the new Immigration and Residency Bill, which is proposing to limit access to health services for ‘irregular’ migrants, to emergencies only. Some of the key issues identified by those living with HIV and people working in the area include: • the effect of dispersal and ‘direct provision’ accommodation on those seeking asylum; • fear of deportation; • the perception of HIV as a stigmatizing and terminal illness; • fear of accessing services; • a lack of culturally competent health care; • a lack of rights and access to welfare services; • ongoing stigma and discrimination. Dispersal and direct provision Asylum seekers are dispersed around the country and accommodated in ‘direct provision’ camps or hostels. They are barred from working, studying or claiming benefits, regardless of their health status, and given 19 euros a week to live on. Essential items like condoms are not provided freely. Many of the centres are on the outskirts of towns, adding to a sense of segregation and isolation. Concern has been expressed about the legal basis and human rights implications of direct provision. 1This contribution was made possible by migrants living with HIV in Ireland, the Social Work Team in the GUIDE Clinic in St. James's Hospital, the Dublin AIDS Alliance and Open heart House. 36 IRELAND Deportation Deportation is always a concern for people with an uncertain residence status, and for those who are HIV-positive, it can be a terrifying prospect. Access to treatment is not always available in countries of origin, so for many, deportation can effectively mean a ‘death sentence’. The fact that people with HIV have been deported to South Africa from Ireland on the ground that treatment is available there has increased these fears. It is known that one of those deported has since died and one, who does not have access to treatment, is seriously ill. Perception of HIV as a terminal stigmatising illness Service-users from migrant communities often have little knowledge about the reality of living with HIV in Ireland, particularly regarding access to treatment. Their existing knowledge of HIV may be based on previous experiences in countries of origin, where access to treatment is limited and mortality from AIDS-related illnesses is high. Fear of accessing services Service-users with an uncertain residence status can be fearful of statutory and voluntary support services due to a lack of knowledge of the links between health agencies and the Department of Justice. People may fear coming to hospital or seeking advice and support around their residence status, due to concerns about deportation, or previous negative experiences with officials in their country of origin. Lack of culturally competent health care On a practical level, language and cultural barriers can lead to misunderstanding and misinformation. The use of translators, who are sometimes untrained, may lead to breaches of confidentiality, creating barriers for those wishing to access the service. Access to culturally appropriate written material in the service-user’s own language, is often limited. In Ireland, there is no registration system for translators, and no special training provided to work in this complex area. Lack of rights and access to welfare People with an uncertain residence status in Ireland may not always qualify for social welfare assistance. This may not become an issue until an individual becomes unwell and usual support mechanisms break down. While HIV services are provided free to those in the asylum or leave to remain system, people who are undocumented and outside these two processes may face charges for health services. Discrimination and stigma People from ethnic minorities experience stigma and discrimination in many ways, e.g. in accessing housing or employment. Those who are also HIV-positive face another layer of discrimination. While discrimination against people with HIV and AIDS is universally prevalent, it can be intensified in migrant communities. 37 SPAIN Testimony by Paco Espinosa, internist and volunteer member of Medicos del Mundo Comunidad Valenciana, working at the primary health care unit for immigrants in an irregular administrative situation (immigrants without official residency) in Valencia. “The greatest problem is communication” “HIV-positive immigrants in an irregular administrative situation have access to medical treatment from the Spanish National Health System as long as they hold a national health card. We have detected difficulties in obtaining health cards in several Autonomous Communities due to administrative hindrances, such as not having all the necessary documents. However, once the health cards are issued, these immigrants are immediately entitled to free medical attention and prescription drugs, just like Spanish nationals. Health promotion and disease prevention activities are generally carried out by NGOs with public financial support, but these activities do not take place in public hospitals or local health centres. The difficulties I have encountered attending to these immigrants have to do with the lack of information regarding their disease. Some of my time is spent informing them that in Europe, AIDS is not a fatal disease, and advising them on ways to avoid transmitting HIV to their partners. But the greatest problem is communication. We have to resort to cultural mediators to help us understand one another. Additionally, I believe that further training is required for the medical staff to be able to provide effective care. Another issue is the sense of being rejected by their community. I think it depends on their country of origin and their educational background. Some patients hide the fact that they are HIV-positive to avoid this type of reactions, but others do not. For example, three months ago I visited three HIV-positive Guinean women. I went to their homes and explained the situation to their families, who appeared to understand without any major difficulties. I take the view that women affected by AIDS in Africa are rejected because they cannot get married and this represents a burden for the families. However, it is not the person they reject but the disease as such.” 38 SWEDEN A letter to the Somalia Health Team1, Stockholm “Help me, please” I hope all is well with you and your family! My name is XX. I am 35 years old and I am an illegal refugee from Somalia living with HIV. I am writing this letter as my last plea. I have no right to ask anything from you, but I need your help! I have been denied access to Sweden by the immigration service several times. There’s nobody else here for me. I am afraid of the police for they might arrest me. I am afraid of going to the hospital because they could call the police as well. I’m in my twelfth week and second day of stay in this country; I thank Allah for every passing hour. My Somali friends attend your meetings as often as they can, but I never dare to follow. I am awfully reluctant to admit it, but my health is deteriorating and I believe it is because of the illness I’ve been told about from you. When my friends come back from the meetings they tell me all about circumcision and its much too familiar cost. My friends told me about HIV/AIDS. It is odd, I have been married to one man and one only, yet I am ill. I always make my friends ask you questions regarding this notion. Questions like how it is possible, why it is possible and what I could do to stop it! You answered my questions well and even handed out brochures to my friends. They are starting to worry about why I ask so much about HIV/AIDS, so I have confined myself to reading your brochures. What I still quite cannot grasp is that this is an illness that will slowly consume my body and then my soul; only to leave my mind to forever rot whilst pondering over how this could ever have happened to me. Forgive me if my imagination is rather infantile, but I have no other way of expressing my sorrow and hurt. I feel very betrayed and doomed. Today I feel well but tomorrow will be a different story. You see, I ‘share’ medication with some people here with the same pains as I. They go back to the hospital and say they’ve lost it, but I think they know it’s me which means it’s only a matter of time before they cut me off. I feel horribly ashamed of having to steal from ill people but I am dying too. I’m aware of my pain but it hurts me that no one else is! Please Dr. Amina, can you find time to help me? I do not want to die for a mistake I didn’t commit. The only reason I came to this country was to start a new beginning, yet now I am facing an end… Help me, please! 1The Somalia Health Team is an NGO carrying out preventive health work among Somali people living in Sweden. It informs people about health issues and gives interactive workshops to promote healthy behaviour. 39 Contacts Belgium-Flanders Sensoa Thomas Demyttenaere Kipdorpvest 48 A 2000 Antwerp Telephone: +32 3 2386868 Telefax: +32 3 2484290 E-mail: thomas.demyttenaere@sensoa.be Webiste : www.sensoa.be Denmark Training, Information and Counselling Centre AIDS Foundation (TICC) Peace Kabushenga Lille Kirkestraede 3, 2sal 1072 Copenhagen K Telephone: +45 3 6310808 Telefax: +45 33 910529 E-mail: peace@ticc.dk Website : http://www.aidsfondet.dk/forside France AIDES Sébastien Mériau 14 rue Scandicci, Tour Essor, 93508 Pantin cedex Telephone: +33 1 41834627 Telefax: +33 1 41834669 E-mail: smeriau@aides.org Website : www.aides.org Ireland Cairde Women’s Health Action Stephanie Whyte 19 Belvedere Place Dublin 1 Telephone: +353 1 8552111 Telefax: +353 1 8552089 E-mail: whamanager@cairde.ie Website : www.cairde.ie Italy IRCCS L. Spallanzani Dr. Nicola Petrosillo Via Portuense 292 00144 Rome Telephone: +39 06 55170486 / 06 5594223 Telefax: +39 06 5594224 E-mail: petrosillo@inmi.it Norway Ansikt til Ansikt Ghirmay Assemahegn P.O. Box 6590 Rodeokka 0501 Oslo Telephone: +47 23 121840 Telefax: +47 23 121821 E-mail: girmay@aksept.org Website : www.aksept.org Portugal Coordenacao Nacional para a Infecao VIH-sida (National Coordination for HIV/AIDS) Carla Martingo Palácio Bensaude, Estrada da Luz, 153 1600-153 Lisboa Telephone: +351 217 210 368 Telefax : +351 217 220 822 E-mail: cmartingo@sida.acs.min-saude.pt Website : www.sida.pt Spain Medicos del Mundo Blanca Nogues Melendez Comunidad Valenciana Carniceros, 14 bajo izq. 46001 Valencia Telephone: +34 96 3916767 Telefax: +34 963916693 E-mail: mdm-cv@wanadoo.es Sweden HIV-Sweden The Swedish Association for HIV-Positive People Andreas Berglöf Tjurbergsgatan 29 SE 118 56 Stockholm Telephone: +46 8 714 54 12 Telefax: +46 8 7140425 Email: ombudsman@rfhp.se Website : www.rfhp.se AIDS & Mobility Europe NIGZ P.O. Box 500 3440 AM Woerden The Netherlands Telephone: +31 348 43 76 36 fax: +31 348 43 76 66 Email: aidsmobility@nigz.nl Website : www.aidsmobility.org For further information and contact details of European organisations involved in issues concerning undocumented migrants and HIV/AIDS, please consult the website : www.aidsmobility.org 40 Co-financed by the European Commission Availability: www.aidsmobility.org Neither the European Commission nor any person acting on its behalf is liable for any use made of the following information. The contents of this publication do not reflect necessarily the opinion or the position of the NIGZ / AIDS & Mobility and AIDES. You can speak! © AIDES 0608 Good intentions and reality: closing the gap This booklet gathers testimonies of migrant people living with HIV/AIDS in Europe, medical doctors, social workers et cetera. They were collected in the framework of AIDS & Mobility Europe’s working group on access to HIV/AIDS prevention, care and support for people with an uncertain resident status. The contents of this publication give a voice to the thousands of people living with HIV/AIDS in Europe and who, due to their migrant background and uncertain residence status, live with the risk of being refused treatment and care, the threat of being deported, and the reality of stigma or exclusion from their communities. By this way, we want to make an effort to counter the prevalent negative image of these people, and to address their needs rather than the threat they are assumed to pose. We hope you will be touched by these stories and will join us to do what is in your power to close the gap between our human rights standards, good intentions and their reality.