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Civil Society Involvement in National HIV/AIDS Programs

  • Joan KaufmanEmail author
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Abstract

Globally, the AIDS response relies on active participation of nongovernmental organizations (NGOs) and civil society. In China, the government is the main provider of health and social services, and the role of NGOs is more limited than in other countries. Despite this, China has opened the door for NGO participation in its AIDS response, initially because of donor pressure but increasingly due to official acknowledgment of the important role these groups play in controlling the epidemic. Since the first AIDS NGOs were established in China in the 1990s, Chinese AIDS NGOs have made unique contributions to China’s AIDS response in critical areas like access to drugs, support for treatment compliance, outreach to marginalized at-risk groups, and efforts to reduce stigma among marginalized populations. However, there has been a substantial drop-off in donor funding in recent years, and although the Chinese government has filled the funding gap, demonstrating its commitment to the sector, recent policy moves toward greater control over the work and funding of NGOs threatens their survival. Thus far, China’s AIDS response has been noteworthy, but these new NGO funding and regulatory developments pose significant challenges to the next phase of outreach, prevention, treatment, and care.

22.1 Introduction

In the last 15 years, China’s AIDS response has gone from denial to global example. The combination of a strong national authority with resources and political will and a determination to apply evidence-based approaches has demonstrated the importance of both. In the years following the SARS epidemic in 2003, China’s public health leaders have aggressively analyzed and addressed their HIV/AIDS epidemic, putting in place pragmatic new policies and programs like harm reduction for people who inject drugs (PWID) and test-and-treat programs for large numbers of previously unidentified people living with HIV (PLWH). In China, where government is the main actor for policy formulation and service provision, the role of nongovernmental organizations (NGOs) has historically been weak. Nevertheless, China’s HIV/AIDS response has provided an opportunity for its fledgling NGO community to demonstrate its importance as an essential partner in achieving national goals, in this case the control of China’s HIV epidemic. Globally the HIV/AIDS response relies on active participation of NGOs and civil society, and important progress has been made in the response due to their advocacy in critical areas like access to medicines, treatment compliance support, and outreach to marginalized at-risk groups. China has opened the door for NGO participation in the response, partly due to donor pressure, but also because of official acknowledgment of the important role these groups must play in controlling the epidemic. There is now strong policy support for the role of NGOs in China’s HIV/AIDS response, but this role is under threat as the political space for NGOs shrinks. This may threaten future efforts to control China’s HIV epidemic. In this chapter, the unique contributions of China’s HIV/AIDS NGOs and the expansion of the political space for their role over the last 20 years are reviewed. Additionally, recent government moves to more closely control NGOs, and their work and funding through more restrictive legislation is discussed as this may undermine China’s success in controlling the epidemic in the coming years.

22.2 Global Civil Society Engagement in HIV/AIDS

Since the beginning of the global AIDS epidemic, NGOs have played a decisive role in the response, both for advocacy and for services. Groups representing PLWH have a mandated role in most international and national AIDS policy, program, and funding bodies. Advocacy groups representing gay men and AIDS patients in the “global south” have put pressure on governments and industry to increase funding and access for treatment and prevention programs. This led to new norms about ensuring access to essential medicines and lifesaving drugs in poor countries. Services provided by AIDS NGOs, for outreach to gay men and other men who have sex with men (MSM), condom distribution and promotion for sex workers, syringe exchange for PWID, youth sex education programs, sex worker legal protection services, treatment and support to AIDS patients, AIDS orphans support programs, and many other critical parts of global and national AIDS programs, have been a key feature of successful AIDS responses in many countries. These groups have been able to reach and represent hidden and underrepresented groups with essential risk-reduction education, recruitment for HIV testing and treatment, and assistance in accessing care and support. These NGOs have also played an important role in representing the needs and perspectives of marginalized groups in policy and program formulation.

Once effective AIDS treatment became available in the 1990s, community groups and local NGOs became the backbone of AIDS treatment support in rural communities where trained medical personnel are scarce (Farmer et al. 2001). Many of the important advances in the AIDS response have come through NGO organizing and advocacy. For example, ACT UP in the United States (US) pushed for fast tracking approvals for AIDS medications. The Treatment Access Campaign in South Africa spearheaded a global movement for affordable AIDS drugs (Heywood 2009). And finally, Sonagachi in India demonstrated that protecting sex workers’ rights increased their condom use and found that in project cities, HIV prevalence among sex workers was 11% compared to other Indian cities where it exceeded 50% (Jana et al. 1999). These examples and many others attest to the effectiveness of both peer group approaches and prevention services provided by NGOs and their value for supporting treatment programs in their communities.

The participation of NGOs in the AIDS response is mandated in numerous international agreements from global agencies. The Joint United Nations Programme on HIV/AIDS (UNAIDS) and the United Nations (UN) General Assembly (GA) both support the essential role of civil society in responding to the epidemic, and UNAIDS includes NGO representatives on its board. The Global Fund to Fight AIDS, Tuberculosis, and Malaria (hereafter the Global Fund) requires civil society participation in its governance board, the CCM (country coordinating mechanism), for proposal submission and execution. Furthermore, the “GIPA” principle (“Greater Involvement of People Living with HIV/AIDS”) is promoted by UNAIDS and calls for the greater participation in the response of people infected and affected by HIV. This has become an important mechanism for patient groups to form and participate in policy and program decision-making as well as service delivery. These global norms have secured a novel and secure political space for NGOs in the global AIDS response (Sidibé et al. 2010).

22.3 China NGOs

While NGOs are fully part of the architecture for service provision, governance, and advocacy in many countries, they have a more restricted and different role in China. There has been rapid growth of the civil society sector in China in the last 20 years. As of 2016, there were approximately 7000 foreign NGOs in China and many times more domestic NGOs—roughly 675,000 that were registered and perhaps as many as three million unregistered (Hsu et al. 2016). In other countries NGOs often deliver direct services, but in China, the government system is the main provider of health and other social services to its vast population. As the number of Chinese NGOs has expanded, some have assumed roles in service delivery in partnership with government, but most operate as research organizations and as advocacy groups on issues like the environment, energy policy, HIV/AIDS, consumer rights, legal reform, and other issues of social and political concern. Many of these organizations are linked to global and transnational networks, which have provided important support both financially and on strategy development, often in collaboration with global agencies and bilateral and multilateral donors.

Unique to China is the GONGO sector—government-sponsored NGOs. These parastatal agencies operate under the leadership of respective technical ministries or Party-led organizations, and they are often led by former government officials. Many receive government funding to carry out community-based or donor-funded initiatives through their networks at province and local levels.

The NGO sector in China is highly restricted and governed by laws and regulations aimed at preventing anti-government political actions. The registration process for independent Chinese NGOs has involved registration with the Ministry of Civil Affairs, which has included identification of a sponsoring government agency and a minimum amount of operating capital. Requirements for social organizations include having an office, professional employees, and funds of 30,000 RMB, while requirements for “people-run non-enterprise” organizations include having an office, professional employees, and funds of 30,000–50,000 RMB. Many NGOs do not bother to officially register with the Ministry of Civil Affairs and operate either without any registration or register as a company, a much easier path to legal status. Some service-providing NGOs work closely with government agencies or with GONGOs either through direct contract work or as members of advisory and governance boards, like the Global Fund’s CCM. But other NGOs, especially those doing advocacy or research, can be viewed with suspicion by government leaders, especially at the local level, who see them as outside government supervision and authority structures. There are restrictions on establishing nationwide networks (except for GONGOs).

A new law, which went into effect at the start of 2017, has shifted oversight of foreign NGOs from the Ministry of Civil Affairs to the Public Security Bureau, a move that will likely increase local mistrust. Under the new law, foreign NGOs are subjected to close scrutiny by the government and by police who have been given the right to question workers, inspect and close offices, review documents, and seize assets. Only a fraction of foreign NGOs in China has yet re-registered under the new law, and it is expected that some will instead pull out of the country (Gan 2017).

22.4 The Evolving Political Acceptance for AIDS NGOs in China

In China as elsewhere, the highest-risk groups for HIV infection are often among the most highly stigmatized groups in society (e.g., gay men, drug users, sex workers). The necessity of reaching these groups with HIV prevention services has contributed to limited societal acceptance and to a more sympathetic attitude to the NGOs representing them. The HIV/AIDS response has often been cited as an example of how the policy environment has expanded for NGOs in China. The combination of internal recognition of the essential roles that such NGOs have played in the global response and external pressures and advocacy through funding mandates and global norms promoted by international partners has pushed forward a more embracing policy environment (Kaufman 2012).

The first time a government program involving NGOs became involved in China’s AIDS response was in 1997 and happened somewhat accidentally. This represented a milestone event in the history of NGO participation in China’s response to HIV/AIDS. Australia’s foreign aid agency, AusAID, provided 2 million Australian dollars as a supplemental grant to a 100 million US dollar World Bank Project in China on Disease Prevention, known as Health 7. Health 7 worked with the Ministry of Health and the Chinese Academy of Preventive Medicine, which was the predecessor of the Chinese Center for Disease Control and Prevention (China CDC). The initiative targeted 17 provinces and cities. The AusAID funds were exclusively to support NGO participation in HIV/AIDS programs. At that time, China had limited funding in the health sector and government institutes had little funding for HIV/AIDS programs. Even while government partners were surprised and a bit shocked by the AusAID mandate, China’s government felt obliged to follow the donor’s requirement. But China AIDS NGOs at that time had limited capacity and were unable to write project proposals or draft work plans. Thus, the government worked with the NGOs, wrote work plans for them, and gradually helped them increase their capacity. Following the example of Health 7, the United Kingdom’s Department for International Development (DFID) provided support for NGOs for the World Bank’s Basic Health Services Project (Health 8), which began in 1998.

In China, real action often only happens in response to political will demonstrated via public endorsement by political leaders. The importance of such endorsements cannot be overstated. Beginning in 2003, Chinese government leaders have increasingly endorsed the role of NGOs in the HIV/AIDS response. At the end of 2003, Wu Yi, who served as the Vice-Premier of the State Council from 2003 to 2008 and as the Minister of Health from 2003 to 2008, clearly announced her support for a greater role for NGOs in China’s AIDS response and endorsed efforts to build a framework for government and NGO cooperation to effectively control and prevent the spread of HIV (CCTV International, 2004). Her statements were echoed by many other high-ranking government officials including the then-Party secretary to the Ministry of Health, Gao Qiang. Officials in China’s Ministry of Health stated that they hoped to further promote cooperation between government and NGOs in HIV/AIDS control and prevention by way of public bidding and purchase of services.

A new policy entitled “Regulation on the Prevention and Treatment of HIV/AIDS,” drafted by the Ministry of Health and issued by the State Council in 2006, provided an official endorsement and framework for promoting NGO participation in HIV/AIDS prevention and control. This was further elaborated in the State Council’s “Decree No. 48” in 2010 (State Council 2010), which contained language endorsing the purchase and contracting of services from NGOs, as follows:

Mobilize social participation in HIV/AIDS response. People’s organizations (e.g. trade unions, Youth League branches, the All-China Women’s Federation, Red Cross and Association of Industry and Commerce), social groups, foundations, civil sector non-enterprise units and grassroots organizations (e.g. residents’ committees and villagers’ committees) shall be fully mobilized to participate in the HIV/AIDS response. The purchasing of services can be adopted as a means to encourage their involvement in outreach and communications (IEC), preventive interventions, care and support. Enterprises and volunteers shall also be inspired to participate in the HIV/AIDS response. Guidance and management shall be strengthened to promote social participation in HIV/AIDS response. The civil affairs departments shall facilitate legal registration of social organizations, and relevant government departments shall fulfill their responsibilities as sponsoring agencies.

Reflecting this change in attitude, top leaders now regularly express their support for HIV/AIDS NGOs and include NGOs in important relevant meetings. Former Premier Wen Jiabao invited NGO leaders to participate in a panel discussion and Premier Li Keqiang has done so as well. In November 2012, ahead of December 1, International AIDS Day, China’s then newly designated Prime Minister Li Keqiang promised to offer greater support to NGOs tackling HIV/AIDS in China and has kept this promise with a special fund to support their work.

These changes indicate the large government change in attitude toward AIDS NGOs and their important role in supporting the formal health system. As noted above, the initial inclusion of NGOs in China’s HIV/AIDS response was driven by external forces (bilateral donors), even with little confidence among Chinese officials that they had any real role to play. Now, government officials and health sectors, even at local levels, recognize the important roles that NGO and community organizations play in the HIV/AIDS response in China and that without their active participation and critical contributions, it would be impossible to achieve national goals.

Support for AIDS NGOs was enshrined in China’s 12th Five-Year Plan (2011–2015) and again in its 13th Five-Year Plan (2015–2020). The HIV/AIDS action plan portions of these policies and related monitoring and evaluation frameworks contain clear language about the roles of NGOs and include specific indicators for measuring it.

At the local government level, support for NGOs can vastly differ. Some local governments have had long-term cooperation with NGOs through work in poverty alleviation and social welfare and have had good experiences. For those, cooperation with HIV/AIDS NGOs has been easier. In many instances they have been able to establish effective models for shared service provision and have provided funding for NGO partners. For example, in Sichuan Province in 2008, the provincial government declared its intention “to promote social forces to participate in AIDS prevention and treatment” and passed China’s first local legislation to this effect. Item 14 of the legislation states that “non-profit organizations held by social forces (including enterprise, public unit, village/community committee, civil organization and other related organization and individuals) and aiming at HIV/AIDS prevention and control, after being examined and approved by their local health administration, civil affair departments should approve their registration in accordance with related regulations.” This provided professional authority for NGO participation in local HIV/AIDS programs. But in most places, local officials prefer to work with GONGOs, such as the labor union, communist youth league, and women’s federation, rather than independent NGOs. They are concerned about the political risk of engaging with independent NGOs, a concern that has grown in recent years. Although HIV/AIDS prevention and control efforts by GONGOs may be valuable, they rarely represent local communities.

22.5 The Main Chinese NGOs Working on HIV/AIDS

China has two main GONGOs working on HIV/AIDS, the Chinese Association for HIV/AIDS and STD Prevention and Control (CASPAC) and the China Preventive Medicine Association (CMPA), both with provincial and local branches, as well as many independent NGOs operating at the national and local levels. Both GONGOs are led by former government officials from the China CDC or Ministry of Health. Both have been active and valuable players in China’s AIDS response, serving as implementing agencies for government-supported and donor programs, especially the Global Fund and the Bill and Melinda Gates Foundation. In both instances they have served as pass-through organizations for many independent NGOs and provided capacity building training and assistance in operations and management of funds. The independent NGOs, however, are more legitimate representatives of their communities and to some degree have suffered in their own growth and funding by the concentration of funding to GONGOs instead of to them directly.

The number of independent Chinese AIDS NGOs has grown rapidly in the last 20 years and peaked during the years in which the Global Fund provided funding from 2003 to 2012. The earliest groups operated online newsletters, networking activities, and education and outreach efforts. As funding increased for HIV prevention and care, many of the volunteer groups working with marginalized populations and PLWH evolved and professionalized.

22.5.1 The Early Days of China’s HIV/AIDS Response (1999 and Prior)

China only openly acknowledged the extent of its AIDS epidemic in 2003 following the SARS crisis. Prior to that, the epidemic was played down, the government’s response was weak, and policy was poorly organized (Kaufman and Jing 2002). The epidemic was represented as mainly limited to China’s southwest border areas and mostly among PWID. There were few independent Chinese NGOs working on HIV/AIDS.

The China–UK HIV/AIDS Prevention and Care Project funded by the United Kingdom’s Department for International Development (DFID) was the first bilateral project to tackle China’s growing AIDS epidemic, even before official acknowledgment of the seriousness of the epidemic in 2003. Launched in 1999 and working in Yunnan and Sichuan Provinces in China’s southwest, the China–UK HIV/AIDS Prevention and Care Project provided important early funding to NGO outreach activities among MSM, commercial sex workers, and PWID and helped foster good working relations with local government. Groups like the Chengdu Community Cares group (working with gay men) and Daytop in Yunnan (working with drug users) received funding and technical assistance to work with marginalized groups at risk for HIV. The program replicated best practices from neighboring countries like Thailand for HIV prevention among sex workers and aimed to promote 100% condom use (Yip 2014).

From the early 1990s, the Ford Foundation’s China Office also provided support for independent AIDS NGOs in Yunnan, Beijing, and elsewhere. This funding built a backbone of technically strong, independent NGOs working on HIV prevention for MSM, sex workers, and youth and representing PLWH. Groups like Yiteng, based in Hong Kong, worked to educate and protect the legal rights of Chinese sex workers in Hong Kong and on the Guangdong–Hong Kong border. Aizhi Action, an online platform started by Chinese AIDS activist Yanhai Wan, documented the emerging and unacknowledged epidemic among paid plasma donors in Henan Province and profiled the work of Dr. Yaojie Gao, an outspoken doctor on the frontlines of the epidemic calling for government accountability and action. It was one of the earliest accurate sources of information on the AIDS epidemic among paid plasma donors in central China and has remained an important advocacy group for the villagers in Henan Province who were inadvertently infected. Positive Art, a Beijing-based art collective, and Mangrove Group at Ditan Hospital were two of the earliest support groups for PLWH. Finally, the Chinese Alliance of People Living with HIV/AIDS (CAP+), launched in the early 2000s, formed a larger coalition for grassroots groups, bringing together diverse groups such as rural women and young men living with HIV and linking them to the Global Network of People Living with AIDS (GNP+) and other global and regional networks of PLWH (Kaufman et al. 2014).

One important group, Friends Exchange (with modest support by Ford Foundation, then Barry and Martin Trust, and later UNAIDS), played a critical role in mobilizing HIV prevention among MSM in China. HIV infection among MSM continues to grow in China. While now an acknowledged problem, at that time it was still a hidden issue. As of the end of 2015, 28.3% of all newly diagnosed HIV cases in China were acquired via male-male sexual contact. It was up more than tenfold since 2006 from 2.5% (Pisani and Wu 2017). In the words of China’s top AIDS prevention official, Dr. Zunyou Wu, “the expanding epidemic among MSM is undoubtedly the gravest of these new challenges regarding transmission of HIV.” In the late 1990s, it was nearly impossible to find an entry point for work with MSM in China. Homosexuality and homosexual behavior were a hidden reality, highly stigmatized, and not acknowledged by the government, and there were no obvious groups with which to engage.

Friend Exchange, an underground magazine that was providing information on safe sexual practices for homosexual men in China, was the exception, with each issue passed hand to hand so that it reached a wide audience. The magazine played a unique role in providing AIDS education to MSM and also gave voice to a stigmatized and isolated community. The magazine eventually became official and began formal publication. The magazine’s editor, Beichuan Zhang, a professor at Qingdao Medical University, also gave voice to the community’s perspectives. The increasing tolerance and understanding of homosexuality in China is in no small way due to the influence of Friend Exchange and Beichuan Zhang’s tireless efforts to humanize individual stories of stigma, the power of family expectations and roles in Chinese society, and the journey and progress of sexual rights in China. At the same time, the publication opened political space for engagement and work on sexual rights and AIDS prevention, in part by challenging social conventions and forcing the Chinese Psychiatry Association to remove homosexuality from its list of mental diseases (Zhang and Kaufman 2005). Published for 11 years, Friend Exchange reached countless homosexual, bisexual, and transgender men and women in China with lifesaving information about AIDS prevention as well as psychological support and understanding for lifestyles and sexual orientations that are still highly stigmatized in China. It became the most respected and authoritative source of information on homosexuality and LGBT (lesbian, gay, bisexual, transgender) issues in China, conducting countless surveys among its extensive readership and thereby generating information from the community itself on critical issues (e.g., condom use, numbers of sexual partners, attitudes toward safe sexual practices) for the understanding of the HIV epidemic among this key, vulnerable population.

22.5.2 China Responds in Earnest (2003–2012)

After 2003, donor funding for HIV/AIDS programs in China increased substantially and more funds were directed to the NGO sector. The Global Fund contributed over 400 million US dollars, the Bill and Melinda Gates Foundation provided 50 million US dollars, and USAID supported work in China’s southwest provinces, all three with funding going directly to NGOs.

In China, the Global Fund entered the scene in the early 2000s and between 2003 and 2012, with six rounds of funding for AIDS programs, worked closely with the Chinese government on numerous projects aimed at supporting government and NGO efforts to prevent and treat HIV, with specific funding earmarked to support organizations within civil society (Huang and Ping 2014; Kaufman 2012). As part of the Global Fund mandate, a Country Coordinating Mechanism (CCM) was established with NGO representatives. This normalization of NGO participation in governance opened the door for the Chinese AIDS NGO community to really demonstrate their value and build effective partnerships with national and local government agencies. Empowered by donor engagement and funding, many groups professionalized and moved from volunteer organizations to organizations with greater capacity both technically and managerially. Government and donor funding supported this process with trainings and capacity building workshops. When the Global Fund was established in 2002, its own mandated governance mechanism required establishment of a “Country Coordinating Mechanism” (CCM) with civil society representatives to review, approve, and submit applications. China established a CCM, but initially it worked more as a “rubber stamp” for applications developed and executed by China’s Ministry of Health and the China CDC. Domestic AIDS NGOs had a limited voice in the process.

In 2006, the first NGO election was held to elect an NGO representative to the CCM. However, it was disputed, which precipitated a thorough review by the Global Fund and UNAIDS. The result was a new election that was uniquely transparent, participatory, and accountable. The election, facilitated by the International Republican Institute (IRI), a US NGO that has worked around the world to promote democratic elections, provided an opportunity for Internet discussions and networked disparate groups around the country. Several widely attended local meetings brought groups together often for the first time, with IRI, UNAIDS, and donor representatives to teach them how to conduct the elections. The election resulted in two elected representatives and two NGO committees, each constituted with 11 elected representatives from groups representing people with hemophilia, MSM, former blood plasma donors (FBPD), and migrant workers (Zhang and Kaufman 2012).

The Global Fund election controversy and resolution served as a door opener for NGO participation in the AIDS response in China and established a mechanism, albeit still limited, for input by NGOs into China’s AIDS response. The Global Fund’s Round 6 was seen by many as a further mechanism to institutionalize the role of AIDS NGOs in China’s AIDS response because all of the Fund’s contributions were to be dispersed by NGOs rather than by the government. However, its intended implementing agency (principal recipient) was switched at the last moment from a GONGO, the China Association for STD and AIDS Prevention and Control, to the government’s AIDS agency, the National Center for AIDS/STD Control and Prevention (NCAIDS) of the China CDC. After a negative review of the China program, China’s Global Fund program was suspended in 2011. Conditions tied to lifting the suspension of Global Fund moneys included the creation of a new sub-recipient that truly represented NGOs and a commitment to channel 25% of funding to NGO groups (Wong 2011). However, before that happened, the Global Fund’s Round 11 grant to China was cancelled amid pressure from some donor countries to deploy Global Fund resources to Africa instead of middle-income countries like China.

The Chinese government then announced that it would use domestic resources to substitute for cancelled Global Fund moneys and accelerated a process to contract directly with local NGOs for program implementation, indicating the government’s recognition of the essential role that NGOs play. The acknowledgment of the need for NGO implementation resulted partly from the initial pressure and requirement from the Global Fund and partly from networking and advocacy by the groups themselves aided by external partners like IRI, the HIV/AIDS Alliance, ICASO, PACT, and other international NGOs.

China Global Fund Watch, established around 2004, was an NGO that monitored compliance with Global Fund rules and published a regular online newsletter, modelled on a similar global watchdog organization (AIDSPAN, which publishes the “Global Fund Observer” online newsletter). China Global Fund Watch played a leading role in publicizing the suspension of AIDS funding to China by the Global Fund and in representing the position of China’s grassroots NGOs in calls for reform of the governance mechanism of the China Global Fund grants (Wong 2011). China Global Fund Watch played a watchdog role in raising and publicizing many issues and developments with China’s own substantial Global Fund grants. The organization formed close alliances with similar groups in the region and the world and served as a forum for raising other important issues related to access to essential AIDS medicines, laws compensating PLWH who were accidentally infected through medical procedures, and other sensitive issues.

An important group working on the frontlines of stigma against PLWH has been AIDS Care China. This group, started by a Guangzhou man who became infected with HIV and was evicted from his apartment when his HIV status became known, has gone on to become one of China’s most well-established AIDS NGOs, receiving funding from both the Chinese government and international donors. Originally focused on addressing stigma and providing shelter for PLWH who were evicted from their homes, the group received substantial funding from donors and developed and expanded into a professional organization working in four provinces with counseling and treatment education centers known as Red Ribbon Centers. These centers focused on improving treatment outcomes and adherence to medication by working with healthcare providers and hospital officials. AIDS Care China and its founder and leader, Thomas Cai, received the Red Ribbon Award from the UN for work supporting care and treatment of PLWH.

Funding for civil society from the Global Fund was critically important for the growth and development of China’s AIDS NGO sector. Many volunteer MSM and PLWH groups in many cities developed during this period and played a major role in China, reaching out to their communities with information and support often through contracted work to local CDCs. NGOs working with AIDS orphans in central China (e.g., Chi Heng, AIDS Orphan Salvation Association, and China Orchid) emerged and began working closely with government agencies. All had designated representatives of their communities on the Global Fund’s civil society board, the CCM.

The Bill and Melinda Gates Foundation also provided substantial funding for HIV prevention during this period, mainly focused on testing for MSM and prevention and treatment for PLWH (Yip 2014). While most funding was channeled through the Ministry of Health and China’s two main AIDS GONGOs (China Preventive Medicine Association and China Association for STD and AIDS prevention and Control), money passed through to local branches of these organizations, which engaged with local MSM NGOs to reach their communities with HIV testing. The testing program was controversial because those who chose to test were paid. However, the effort was important for helping to demonstrate the effectiveness of new, internationally recognized “test-and-treat” strategies, which are now a major thrust of China’s national HIV/AIDS program.

22.5.3 China’s HIV/AIDS Response Matures: 2012 to Present

The last several years have seen a substantial drop-off in international funding for HIV/AIDS programs in China as China’s economy has grown. Today, its own resources and technical capabilities are the primary driver of its HIV/AIDS response, and global donors have called for a re-direction of funding to countries in greater financial need (Chow 2010). The Global Fund cancelled Round 11 and ended its new funding to China. The Bill and Melinda Gates Foundation, USAID, and other donors have shifted their focus from supporting China’s own response to HIV/AIDS to a “China in the World” orientation, focused on how to work with China as a development partner or source for lower-cost drugs in Africa and elsewhere. An unfortunate consequence of the drop-off in funding has been the drying up of support for China’s NGO sector working on HIV/AIDS. After the Global Fund’s Round 11 program to China was cancelled, the Chinese government announced that it would use domestic resources to substitute for cancelled Global Fund moneys and accelerated a process to contract directly with local NGOs for program implementation. But while some organizations have continued to operate with Chinese government support contracted locally by local CDCs who depend on them for outreach, many others, especially those working on advocacy rather than service delivery, have struggled to continue their missions. As an indication of how valued the NGO service contribution to the AIDS response now is in China, the Chinese government set up a special fund in 2015, exclusively for the support of NGOs to ensure their continued input. The Ministry of Finance allocated 30 million RMB, but Premier Li Keqiang felt this was insufficient, so he used his Premier Funds to add another 20 million RMB, for a total of 50 million RMB in 2015. The fund supports NGOs to do outreach work with the MSM, sex worker, drug user, and PLWH communities.

While the space afforded civil society organizations and NGOs has expanded greatly over the past two decades, it appears to again be contracting. The Foreign NGO law, which was passed in April 2016 and took effect in January 2017, shifted responsibility for foreign NGO oversight to the Ministry of Public Security from the Ministry of Civil Affairs and significantly increased the bureaucratic and regulatory requirements for all not-for-profit foreign organizations that work in China or provide funding to China-based organizations. Restricting foreign funding to Chinese NGOs has adversely affected the operations of the domestic advocacy NGOs even further. And, in light of the reductions in foreign donor funding in recent years, this could have serious negative consequences for China’s HIV/AIDS response. Many of the organizations highlighted in this chapter that have played a critical role in advocacy and research had already felt the impact of the draft law, which was issued in 2015. In many cases, their foreign funders retreated for fear of being out of legal compliance. Yirenping, an NGO that has worked on employment discrimination against HIV and hepatitis B virus patients, had already been targeted by those tasked with enforcing this new law, most likely because of the foreign donor that supported its efforts. This law is one of a suite of new State Security-oriented legislation recently passed. The NGO law, while primarily aimed at preventing foreign-funded civil society groups from organizing political movements that might challenge the authority of the current regime, has spilled over into work in the social sectors, even in areas like HIV/AIDS which is fully supported by the government. The type of donor-supported efforts that led to the development of NGOs and the expansion of their roles in China’s AIDS response for stigmatized groups like MSM and criminalized populations like commercial sex workers and PWID is threatened at a time when access to these marginalized populations is essential for achieving national goals.

22.6 Conclusion

Global experience demonstrates, that it is nearly impossible to achieve success in AIDS prevention without actively involving the communities themselves in efforts to reach their members. In China, government is the almost exclusive provider of public services, and since 2002, the China CDC has done an admirable job of tackling many sensitive AIDS prevention challenges and achieved many successes in controlling and responding to the epidemic. The government frequently contracts with NGOs for service provision for marginalized groups, especially MSM and PLWH, and has helped to begin normalizing the sector and formalizing the partnerships. However, although government effort is necessary, it is not sufficient to achieve success in HIV prevention among MSM and other marginalized and stigmatized groups. NGOs representing these groups are becoming less able to play the roles required of them because of the tightening political situation for Chinese NGOs accompanying the new Foreign NGO law and reductions in overseas funding. These organizations, which are critical for reaching communities throughout China, are plagued by the lack of core financing (as opposed to project funding) especially in recent years and often depend too much on volunteers rather than staff. Many groups have struggled to grow beyond their original vision and leadership and often compete for the more limited donor and government funds that trickle down to groups on the frontline of the epidemic. This situation is likely to worsen and may lead to the demise of some important groups that are unable to secure funding. To some degree, financial competition contributes to a lack of cohesion in the sector, further constrained by a regulatory environment that prohibits establishment of branches in different places (except for the GONGO sector) or transnational networking. However, competition and poor capacity among China’s NGOs should not be used as an excuse to dismiss their value and necessity. Without genuine capacity, core funding, networking, and better governance, these organizations are unable to play their much-needed role. True partnership of these NGOs with government, the main service provider, architect, and enabler of policies and programs in China, is essential. Without active engagement of China’s AIDS NGOs in China’s HIV/AIDS response, the Chinese government’s effort to control the AIDS epidemic will be only partially successful. China’s HIV/AIDS epidemic response has been noteworthy, but these significant challenges to the next phase of prevention must be taken seriously.

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Copyright information

© Springer Nature Singapore Pte Ltd. 2020

Authors and Affiliations

  1. 1.Schwarzman Scholars ProgramNew YorkUSA
  2. 2.Harvard Medical SchoolBostonUSA

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