1Published in July 2004, UNAIDS’ most recent annual report on the human immunodeficiency virus (HIV)/ Acquired immunodeficiency syndrome (Aids) across the world does not hide the writers’ anxiety about an epidemic that “continues to outpace the global response”1 and that “in Asia is expanding rapidly”2. Indeed, in this Asia-Pacific region where at least 8.2 million children and adults are living with HIV3, the number of people infected with the virus is growing. This assessment is just as true for Taiwan, which is obviously not an island when it comes to infectious diseases. Thus, just as it was across the world, 2004 was a bleak year for Taiwan in its struggle against new infections. Indeed, despite the limitations of all statistical data on HIV/Aids, the figures going back to 1984, and provided by the Centre for Disease Control (CDC, Jibing guanzhi ju)4, reveal that Taiwan had 1,562 new cases5 in 2004, the highest figure ever recorded there (see Table 1). While today6, with 9,229 cases (0.040% of its population7), Taiwan is not the worst affected country in Asia, Taiwanese experts are worried about the growing proportion of infections among young people between 14 and 25 (50% of the total in 2004). What is worse, they are unsure how accurate the HIV/Aids statistics are, distorted as they are by people’s fears about Aids screening and the social consequences of divulging their serological status.

3The abolition of martial law in 1987 and economic prosperity are two factors key in explaining the island’s “associative revolution”8, which is characterised by the rapid growth in the number of civil associations. This does not mean that no associations existed before, quite the contrary. But under martial law, the Kuomintang’s practice of co-opting social forces, described by some as “mobilisational authoritarianism”9, had made the development of “non-traditional NGOs”10 almost impossible. In this new, favourable situation and in response to the growing number of cases of infection by the HIV virus, rapid growth occurred in the early 1990s in the number of associations dedicated to fighting HIV/Aids. Some were generated from the discussions of a group composed of people living with HIV/Aids and health professionals—Light of Friendship AIDS Control Association of Taiwan (Lofaa), Persons with HIV/AIDS Rights Advocacy Association (PRAA), Living with Hope Organization, Collective of Sexworkers and Supporters (Coswas). Others grew out of foundations wishing to diversify their interests—Students Against Aids, Garden of Mercy Foundation—out of the initiative of a former member of the government—Taiwan Aids Society (TAS)—out of a religious organisation deciding to re-focus its mission—Lourdes Home11—or again out of the government’s wish to widen the national application of associative action—Aids Care Association. Lastly, some organisations were born of the requirement to register in order to apply for financial support grants from the government—Harmony Home Association—or of internal tensions caused by the need to prioritise the fight against HIV/Aids—Taiwan Love and Hope Association.

6Their budgets, from what we know of them12, vary between NT$1.5 million and NT$6 million (from US$45,000 to US$190,000) and grow steadily, although national economic conditions do not particularly favour the non-profit-making sector.

7Sources of funding vary widely. Together with private donations, which are often a vital contribution, the organisations can count on sales of their own products (gadgets, T-shirts, flowers), support from the Department of Health and from the United Way Taiwan foundation13. The latter gives substantial financial help after examining the association’s plans and provided that its criteria for good management are satisfied—criteria such as transparency, efficiency, responsibility and capacity for self-evaluation. These demands are gradually being imposed, it seems, right across Taiwan’s non-profit-making sector and, accordingly, on organisations fighting Aids: organisations, in exchange for funding from this silent partner, commit themselves to respecting these rules.

8In recent years, Taiwan’s associative sector, whose rapid development has been compared to “bamboo shoots growing after rain”14, has frequently been criticised for its excessive number of “family NGOs”15 consisting of one member, or perhaps two, whose aims, structure and funding remain unclear. This situation, in many respects, dries up the flow of funding and support, which also harms the better-structured organisations. Unlike these “mini-NGOs”, Taiwan’s organisations for combating HIV/Aids have reached a certain degree of maturity in their structures by carrying out fieldwork over a period—sometimes discontinued—lasting at least six years in most cases16. This period may seem short when set alongside foreign experience, but it is substantial by Taiwanese standards, given the very recent development of the whole sector. Moreover, with a few exceptions, these organisations have achieved lasting financial stability, essential for effective activity. Even so, the search for funding remains vitally important in terms both of their survival and of the time devoted to it.

13Ten of the eleven organisations have opted to devote themselves to prevention, directing their message in particular towards young people. This choice is justified both by the rapid spread of HIV infection among young people and by a failure in terms of initiatives in this field—a criticism made during an international conference held last July in Taipei17. At the same time, some organisations are focussing on more specific communities among young people, such as homosexuals, people taking drugs intravenously (Lourdes Home, Living with Hope) or sex workers (Coswas).

14Generally speaking, the prevention campaign among young people is carried on in colleges, secondary schools and universities with their support. A frequent approach is to give mass presentations in lecture halls, where videos, celebrities, emotionally moving personal accounts and sometimes actual tears18 are all employed to raise young people’s awareness of a subject that most organisations try not to broach too directly19. Another approach to students consists of competitions, for the production of posters or short films about HIV/Aids, as organised by Students Against Aids, the winners being rewarded with prizes worth NT$80,000 (US$2,500). These posters are used later during public awareness campaigns. The fact remains that it is not unusual for educational establishments to refuse to host these sorts of activities, in particular private schools who “cannot understand why their pupils would have Aids”20.

18Lastly, some organisations also offer prevention and awareness services aimed at a wider public, at stations or during “patchwork of memories” exhibitions21. Their purpose is to overcome the obstacle—in Taiwan as everywhere else in the world—of groups perceived as being “at risk” being stigmatised; it is also to remind people that HIV/Aids infection is an issue affecting everyone and is never to be seen as the consequence of immorality.

19The message put across by these prevention activities tends to develop along the lines of the ABC22 policy (Abstinence, Be faithful and Condom) as recommended by the Health authorities, who prescribe with varying enthusiasm all three forms of protection. Thus, while some organisations (TAS, Garden of Mercy) weight their prevention discourse mainly towards abstinence and fidelity, leaving the condom as the last resort, others (PRAA, Living with Hope) are far more critical of this strategy. In their eyes23, this approach is too closely inspired and legitimised by American programmes promoting abstinence: programmes directed by, among others, religious organisations supported ideologically and financially by the President’s Emergency Plan for Aids Relief (PEPFAR)24. So the Taiwanese organisations reverse the order of priority, starting with the use of condoms and the importance of screening, while warning people not to rely on the other two prescriptions—abstinence and fidelity.

20On the healthcare and social security front, two types of activities are undertaken. For some organisations (Lourdes Home, Garden of Mercy), the main activity is visiting the sick, at home, in hospital or in prison, to care for them and bring them moral support. It is intended as the remedy for discrimination. Thus, in prison, inmates who are HIV-positive and barely informed about the consequences, are often separated from other prisoners, neglected and thus doubly punished. Those living at home find themselves particularly alone when their family and friends stay away once their state of health becomes known. Lastly, in hospitals, where some care staff do not want to work with HIV-positive patients, organisations are called in by the hospital authorities25.

21Another form of help consists of offering accommodation to HIV-positive patients, be it short-term (three months maximum for Lourdes Home) or medium- and long-term (Garden of Mercy, Harmony Home). These services are offered at the same time to people living with HIV/Aids who are out of hospital but still too weak to care for themselves, to patients in the last stages of the disease, to those with financial problems, to people visiting the capital city for treatment, and even—just recently—to young children whose HIV-positive parents are in difficulties26. The whereabouts of such accommodation is kept secret to avoid encountering opposition from neighbours fearful that their house values might depreciate27.

23Problems with this support are nevertheless considerable. The Aids Prevention and Control Act (houtian mianyi quefa zhenghou qun fangzhi tiaoli) was passed in December 1990 to set the legal basis for control and prevention28. Its Article 6-1 lays down that “HIV-infected individuals shall not be discriminated against, nor shall they be deprived of their rights”. However, at the same time, the “Control of Infectious Diseases Act, inherited from 1944 during the period of Japanese occupation29, leaves the door open to practices like isolation (art. 35) and defamation (art. 40), which may be used as legal weapons in the fight against activists. This law provides an ideal defence for some institutions which, bolstered by various specious arguments, are happy to cite it in support for their discriminatory words and deeds30. Thus in several respects, this latter Act is the sworn enemy of organisations fighting to support HIV patients.

25In a further legal attack, Article 14 of the 1990 Act “orders” foreign HIV-positive patients to “leave the country”31 and forbids such people to enter Taiwan32. While in November 2004 the government did propose relaxing this article, thus allowing foreigners who are HIV-positive to remain in Taiwan for up to 14 days33, this decision merely exposed the official vagueness about how the virus is transmitted, and did nothing to improve the intolerable situation for men and women with families in the country. It is true that Taiwan is not the only state to apply this kind of legal restriction, seeing that the United States, Norway, Uzbekistan and Thailand all impose, with variations, similar measures.

26Thus, the task of providing legal support for people who are HIV-positive, which some organisations undertake, must confront a real legal imbalance between the discriminators and those discriminated against34.

34This approach is the result also of choice, since these organisations generally seek to adhere to the health model known as “primary health care”35. Multidirectional prevention is thus the basis of their work, and the response to structural violence (discrimination, social disintegration) is its primary activity.

35Then, there seems to exist among these organisations a real division between health work and prevention activity, which means that they do not cross-check their activities in the same areas or at the addresses of the same people. This division renders medium or long-term cooperation almost non-existent. Only a few holiday activities, trips abroad and some gatherings require short-term co-operation. Moreover, this reality lends renewed urgency to the idea of an “Alliance of Taiwanese NGOs in the War Against HIV/Aids”, as recommended by the CDC36, an idea that some senior officials and most association members consider premature. Lastly, this division is exacerbated by undisguised competition in the hunt for grants, each organisation advertising its special merits to the funding authorities, which leads not infrequently to interpersonal tensions and a certain chauvinism among rival organisations37.

36To appreciate the relationships that these organisations maintain with the health authorities, one must look beyond the conflict theory followed by many studies of civil society, a theory that places society’s actors in opposition to the state. This dichotomy does not do justice to the “subtle and delicate” (WW, weimiao) relationship described to us by one Taiwanese association member38. In our search for an alternative approach, a bifocal study turns out to be revealing: we look at the interpersonal relations between these organisations and the official bodies, alongside the official support, both financial and material, provided for the various associative programmes.

37In light of this empirical study and with reference to the general classification of relations between the NGOs and the state proposed by Dennis Young39, we may identify three sorts of relationships between the Taiwanese organisations and the health authorities: complementary, collaborative and oppositional.

38In the case of complementary relationships, the organisations are seen as “fulfilling the demand for public goods left unsatisfied by government”40. As regards the fight against HIV/Aids in Taiwan, we are considering here the types of relationships of most of the organisations, whether they are concerned with prevention, prevention/services or prevention/research. We are also considering a complex relationship taking diverse forms. It is based firstly on a more holistic approach, enabling it to act where the authorities cannot or will not involve themselves. Further, it is characterised by the organisations’ participation in some activities of the Department of Health or the CDC, as well as by the physical presence of organisation leaders as observers in official institutions such as the Department of Health, the prison administration or the Ministry of Education. The relationship is expressed also in state financial support, which amounts to between 15% and 25% of the organisations’ resources, even though this funding is still irregular and depends on whether the organisations’ projects are in tune with the national health policy (thus, it is known that, while prevention programmes are well received, programmes offering services are less so). Lastly, relations between the leaders on both sides are often friendly.

39In the context of collaborative relationships, the organisation is the partner of the government, which helps to deliver the service and, in the main, finances it41. Particular examples are Lofaa (funded mainly by the government), and the Taiwan Aids Society (headed by the former Department of Health director Twu Shiing-Jer), which works hand in hand with the health authorities42. These two types of relationships, complementary and collaborative, contribute to the collective management of health problems in Taiwan43.

40When we come to oppositional relationships, the organisations “prod government to make changes in public policy and to maintain accountability to the public”44. This is mainly true of the advocacy organisation PRAA, which presents itself as very critical of policies on HIV/Aids. Its role is made possible by its minimal financial dependence on the health authorities (8% of its resources). In recent years, this opposition has taken various forms. Usually, the criticisms are expressed in its own review Quan (PRAA Taiwan Rights Journal), in newspaper articles or at press conferences, as was the case recently during World Aids Day, December 1st 2004, when subjects such as the rights of entry of HIV-positive foreigners and police pressure on people living with HIV were raised.

41 In addition, an “Alliance for the Protection of Personal Information” has been formed, PRAA joining with other organisations in Taiwanese civil society to prevent personal medical records from being included in the new digital health insurance card, launched by the Department of Health in January 2004. In the Alliance’s view, this situation increases both HIV-positive patients’ fear of having their status publicly disclosed and the discrimination against them within medical institutions45. A further example of this opposition is the setting up of an alternative forum on HIV/Aids, bringing together organisations and HIV-positive people, in response to the international conference organised by the CDC and the Health Department in Taipei in July 200446. These critical actions have led to an uneasy relationship between PRAA and senior health officials.

42Organisations maintaining complementary relationships with the health authorities seem to exert greater influence over them. Thus, Lourdes Home, after several years of applying pressure on various authorities, has succeeded in setting up a system of support and information for intravenous drug-users in prison and training for prison officers47. We should mention also the work of Living with Hope devoted to promoting the free supply of HIV tests for pregnant women in the north of the island, in Taoyuan; since January this year, their work has been supported by the CDC on a national scale48. Lastly, the promotion of condoms, now publicly supported by the Department of Health49, seems also to a great extent to be the result of work by organisations fighting against HIV/Aids and maintaining these kinds of relationships.

44Lastly, the only advocacy organisation, PRAA, exerts relatively little influence over the authorities. This situation is directly linked to the sensitive nature of the questions that it handles. For example, the question of reforming the present restrictions on HIV-positive foreigners entering Taiwan has been raised by the Department of Health50, but PRAA judges the results so far to have been inappropriate and unsatisfactory. As for the digital health insurance card, renewed last January, PRAA’s demands relating to the information included were ignored.

45In addition to assessing the influence that these organisations exert over the authorities, it is essential to look at the reverse process to create a dynamic picture. As regards the war against HIV/Aids, the health authorities obviously do seek to influence the organisation of civil society, particularly in the area of co-operation between the various associations. In recent years, all the moves towards large-scale co-operation have been initiated by members or ex-members of the Department of Health seeking to reduce competition between organisations. An early initiative was to set up an “umbrella NGO”, named the “Red Ribbon Foundation”, which, based on the American model of Aids Action51, was intended to group together all the Taiwanese organisations fighting against HIV/Aids. This initiative, launched by Twu Shiing-Jer, has had a chilly reception among the organisations. They criticise the project’s lack of clarity, fearing to lose their autonomy.

48Moving on from the national context of the fight against HIV/Aids, we should now look at the regional level and at transnational relations52. The regional and international levels are often perceived as spaces where NGOs working for people living with HIV/Aids are active “both at the level of challenging certain (medical) practices and in the defence of individuals’ rights”53. These are favoured areas for the exchange of information and ideas and for creating alliances that, in the long term, may help to strengthen the actions and the influence of NGOs locally54.

49In his last book, the specialist in Taiwanese foreign policy Chen Jie considers that “the role of the Taiwanese NGOs on the international scene has been distorted, in quantity as much as in quality, by Taiwan’s diplomatic isolation within the international community”55. For Taiwanese NGOs to play a role on the international stage is indeed made more difficult by Taiwan’s exclusion from the UN, as well as by Chinese pressure, exerted on countries organising international conferences, to keep Taiwanese delegates from attending or, when they are present, to prevent the very word “Taiwan” from being used to designate their place of origin56. This situation is paradoxical for those who, naturally enough, are uninformed as to the diplomatic interests of foreign states but are dependent on them for their activities abroad57. Chen Jie concludes that the vulnerability of the Taiwanese NGOs to Taiwan’s status within the international community explains their low profile in the region. While this situation is a reality across many sectors, it becomes indispensable when we look at the war against HIV/Aids to take a more detailed approach.

50It may be admitted that, despite the opening up of the international health space58 among non-state actors59, Taiwan has been placed since 1971 in a situation of “health apartheid”60; this has prevented its national NGOs from making themselves heard or winning support. But it is useful for us, when considering HIV/Aids, to direct our attention to another health space, namely, the transnational networks fighting against the virus. The Asia-Pacific region has a number of them, including a coalition generally known as “the Seven Sisters” that combines seven regional networks fighting against HIV/Aids61. Among those most closely linked to Taiwanese organisations, we shall look at the Asia-Pacific Network of People Living with HIV/Aids (APN+) and at Therapeutics Research, Education, AIDS Training in Asia (Treat Asia).

52These more or less structured spaces have turned out to provide valuable exchanges and practical help for some Taiwanese associations. Thus, Living with Hope is in permanent contact via the Aids Research Centre of Yang-Ming University with the Treat Asia network, which has made the Centre one of its reference sites in Taiwan62. PRAA, Lourdes Home, the Aids Care Association and Harmony Home are in more or less regular contact with APN+.

53These transnational spaces, and in particular their websites, are used in different ways by the Taiwanese associations. They provide daily access to up-to-date information on HIV/Aids (treatments, legal developments, epidemiological situation)63. In addition, they improve the regional visibility of Taiwanese campaigners against the virus, as was recently the case with the head of Living with Hope, to whom Treat Asia devoted a page of its website in October 200464. The online forums run by these networks (SEA-AIDS Forum, PWHA-NET) are also perceived by Taiwanese organisations as an important influence on national policies relating to HIV/Aids. That idea was taken up by PRAA and the Aids Care Association who used them in December 2001 and August 2002 to publicise two petitions demanding that the Taiwanese government should revise its discriminatory policy towards HIV-positive foreigners65.

55The networks also enable Taiwanese NGOs to play a role at international gatherings, such as the annual meetings of Treat Asia and APN+, which are attended by delegates from the associations, regional scientists and a number of scientific experts from the rest of the world. The third annual meeting of APN+ was held in April 1997 in Taipei. We should also mention two other meetings: the International Treatment Preparedness Summit at Cape Town in 2003, organised by APN+, attended by two delegates from Harmony Home; and the Alternative Community forum organised by the Seven Sisters coalition in January 2004 in Bangkok, which was attended by two Taiwanese delegates66, including the leader of Living with Hope. Experience shows that individual and associative alliances may be formed at these gatherings, alliances that lead on to reciprocal visits. For example, Living with Hope has already hosted visits from several leading figures from the war against HIV/Aids in Asia, the most recent visitor being a Japanese professor from the International Aids Centre in Tokyo, who had come to share his experience and to acknowledge the organisation’s contribution to the national and regional debate.

56Lastly, international gatherings are also an opportunity for Chinese and Taiwanese delegates67 to come to know each other, to share information about each other’s national epidemiological situations and to debate the issues68. The point is significant, bearing in mind that, at the inter-state level, such relationships are still rare. When asked about their Chinese neighbours, most Taiwanese members of associations fighting HIV/Aids would say, “When it comes to research and Aids prevention, no tensions exist [. . .] Politics is just what happens on television!69” While this forthright remark does not tell the whole truth about the political and strategic relationship across the Strait, it does remind us that the classical analytical grid is by itself not satisfactory.

58Now that the Taiwanese government is under strong diplomatic pressure to take action beyond its own frontiers, some Taiwanese organisations have acquired greater freedom of movement. Today, in the field of Aids relief, in parallel with two government programmes (in Malawi70, and in Sao Tome and Principe), Taiwanese NGOs are directly managing no fewer than nine projects in the fight against HIV/Aids in the Asia-Pacific region. Of these nine, one is in the north of Thailand, and the others in China.

59Two organisations are behind these schemes. First, there is Harmony Home, working in villages in the provinces of Henan71 and Guangdong. In Henan, Harmony Home helps HIV-positive people with accommodation and provides financial help for families reduced to extreme poverty as a result of their HIV status. In addition, it looks after orphanages for children whose parents have died of Aids: in four different places, Harmony is looking after more than a hundred orphans, providing them with food and education. In Guangdong, Harmony helps sick people with accommodation, takes them for treatment in hospital and arranges free drug treatment for them at certain hospitals.

60Lourdes Home works in Xian (Shaanxi) and in Shenyang (Liaoning) in tandem with diocesan service centres run by the China Patriotic Church. Its leader and some of its social workers give training to the priests on Aids-related questions. They also help to set up centres for treatment and training, and arrange for the Chinese health workers to visit Taiwan to share experiences and to learn about the local Taiwanese situation72.

61These activities are made possible, we should emphasise, not by long-distance aid but by maintaining a physical presence in China, thanks to several factors. Firstly, a key role is played by contacts abroad via transnational networks or informal encounters during international conferences. On this subject, tracing the careers of individual people can provide valuable insights. For instance, the head of Lourdes Home was educated in the United Kingdom and has kept numerous contacts there; the head of Harmony Home spent a year travelling to acquire experience abroad and to meet local workers in the fight against HIV/Aids. Thanks to such contacts, both these Taiwanese organisations were invited to China by international NGOs already established there and/or by local churches. Lourdes Home and Harmony were invited, respectively, by Misereor73 and Médecins Sans Frontières (MSF), and also by priests and nuns wishing to take action against the spread of HIV/Aids in their dioceses.

63Lastly, we come to the shared feature of these projects, which is the secrecy surrounding them. Indeed, given the political situation across the Strait and the sensitive nature of any foreign intervention in China, particularly at the health level74, the projects were originally set up in conditions of absolute secrecy. In the case of Harmony, its director has lost count of her clandestine travels across rural China seeking to contact HIV-positive volunteers to help with her organisation’s projects. Today, the work undertaken by the Taiwanese organisations is sometimes reported in the Taiwanese and Chinese media. Even so, its public profile remains low and could readily be kept lower still, in the interests of the people involved.

64These forays into China do, however, encounter some obstacles. The most recent example arose as the consequence of a televised report about Harmony’s work in Henan. The local administration, furious at being perceived as inactive, decided to close down one of Harmony’s orphanages, moving the children on at once to an official orphanage built in 18 days and now under its own responsibility75.

65Thus, the Taiwanese presence on the transnational scene of the fight against HIV/Aids is a reality. The simmering tensions over sovereignty on both sides of the Strait are not an insuperable obstacle. Sino-Taiwanese co-operation over HIV/Aids is based upon the commitment and the shared efforts of Taiwanese (the NGO staff) and Chinese (HIV-positive patients and health professionals) alike. The real problems are discrimination and the slow acknowledgement of the epidemic by some of the Chinese local administrations. Lastly, the ability of the Taiwanese NGOs to challenge certain practices and to support HIV-positive patients is now recognised by other transnational bodies (MSF, Misereor), which have come to rely on it. Today, the world spotlight has illumined the contribution by some Taiwanese organisations in structuring a new transnational health space, which includes “the people living with HIV/Aids, the health activists and the NGOs, the private sector and the extensive networks that they have created”76 on both sides of the Strait and throughout the region.

66In the context of what is commonly known as informal diplomacy (minjian)77, the advantages of which the Taiwanese government has been extolling for some years, particular emphasis is given to the NGOs and to the role they may play in improving Taiwan’s status on the international scene. One is entitled to wonder if the Taiwanese government, given the public visibility of some Taiwanese NGOs, does not seek to use them—as it does the Medical Professional Alliance in Taiwan—to promote Taiwan’s international status. In fact, in order to glean first-hand information about the Chinese health situation, health officials are reported to have asked a Taiwanese organisation to play some kind of “health spy” role on the Chinese side of the Strait. The organisation preferred to protect its autonomy and to pursue its work in China: it unhesitatingly rejected the proposition.

71Lastly, in the Asia-Pacific region, the response to HIV/Aids will determine, according to the latest joint report by UNAIDS and the Asian Development Bank, the future of the epidemic on a world scale78; in such conditions, the Taiwanese NGOs—despite the ostracising of Taiwan at the world level—have proved themselves to be active warriors in a transnational struggle.