On July 26, 2024, the HRUG regular seminar on “Care and Respect: Research on Disease Management for People Living with HIV or AIDS in China” was successfully held. The seminar was chaired by Joe Finnerty, a policy analyst of the School of Applied Social Studies of University College Cork in Ireland, and reported by Xiao Xueling, an associate professor of Xiangya School of Nursing of Central South University. Professor Peter Herrmann and Li Juan (both are researchers of CSU Human Rights Center), and Professor Mehmet Okyayuz (a political science professor of the Middle East Technical University in Turkey) participated in the discussion, and shared, reported and supplemented the corresponding views. Focusing on the prevalence of AIDS and the formulation and implementation of relevant policies, this seminar discussed in depth China’s efforts and progress in disease management of people infected with HIV or AIDS, and briefly introduced the work of their medical research team.
Associate Professor Xiao Xueling first introduced the latest data on the prevalence of AIDS in the world and China, and reviewed the evolution of China’s policy on AIDS prevention and management since 1985. She mentioned that China established a national AIDS sentinel monitoring system to carry out AIDS monitoring in 1995. In 2003, China launched the electronic AIDS infected people reporting system. According to the characteristics of different risk groups, the government has formulated and adopted corresponding policies and measures, such as the implementation of the Blood Donation Law of the People’s Republic of China in 1998 to address the risk of transmission of AIDS among plasma donors.
Associate Professor Xiao Xueling emphasized the central role of the government in expanding AIDS detection, establishing a national monitoring system and implementing the policy of “four exemptions and one care”. She pointed out that the number of newly diagnosed infections in China has increased year by year, mainly due to the expansion of the scale of AIDS testing, such as the distribution of self testing reagents. The transmission mode of AIDS virus in China has also undergone significant changes, from the early transmission of injecting drugs to the current transmission mode dominated by sexual contact. Therefore, China has gradually established a nationwide AIDS monitoring system, which is in the charge of the Chinese Center for Disease Control and Prevention Sexually Transmitted Disease of AIDS Prevention and Control Center (NCAIDS/STD), and has set up institutions at the national, provincial and regional levels. At the national level, the agency is responsible for formulating AIDS prevention and control policies and regulations and providing scientific basis; At the provincial level, institutions participate in the formulation, implementation and evaluation of the national action plans to combat AIDS; At the regional level, the agency provides technical assistance and quality control for national monitoring and laboratory testing of people with AIDS. Associate Professor Xiao Xueling also mentioned one of the most powerful policies and measures for AIDS prevention and control in China, namely the “four exemptions and one care” policy: free counseling and initial screening tests, free anti AIDS drugs, free treatment and counseling for pregnant women with AIDS to prevent mother to child transmission, free compulsory education for orphans of AIDS patients, and inclusion of people living with AIDS in the scope of government assistance to provide economic assistance and social support.
In addition, Associate Professor Xiao Xueling briefly introduced the work of her research team. The team’s research focuses on early initiation of antiretroviral therapy (ART) and explores the potential mechanisms and effects of delaying the initiation of ART. Their study finds that although the world actively promotes the early initiation of ART as a key component of AIDS care, a considerable proportion of AIDS infected people still delays the initiation of ART, with an overall combined prevalence rate of 36.1%. This has led to higher incidence rate and mortality, lower viral inhibition rate and increased risk of AIDS transmission. The team also explores potential mechanisms for delaying the initiation of ART and receives support from the National Natural Science Foundation of China. Their study explores the impact of various factors on this phenomenon, including social stigma, inadequate access to medical services, and socio-economic barriers. In addition, it points out that the willingness to treat of people living with AIDS fully plays a mediating role between their awareness of ART and the delay in starting ART.
The team’s research also explores the challenges faced by people living with AIDS in the process of disease adaptation, especially the mental health problems. She mentioned the adaptation mechanism of people living with AIDS. Their study shows that, based on the comprehensive task adaptation model, people living with AIDS can better adapt to the disease by completing a number of key tasks, including accepting the fact of the disease, adjusting their lifestyle, seeking social support, etc. Associate Professor Xiao Xueling pointed out that improving the self-efficacy of people infected with AIDS and promoting them to adopt positive coping styles are crucial to enhance the psychological adaptability of infected people, thus improving the overall quality of life. Finally, associate professor Xiao Xueling concluded that efforts are still needed to achieve the goal of ending the AIDS epidemic by 2030.
Professor Peter Herrmann asked how to promote rational methods to overcome irrational fears and discrimination in society, especially for people who are not infected but are afraid of AIDS? What measures should be taken to influence or transform social attitudes through education and lifestyle changes? Associate Professor Xiao Xueling responded that although there wasa phenomenon of “turning pale when talking about AIDS” in Chinese society in the past, the public’s awareness of AIDS has gradually improved in recent years, with the strengthening of science popularization and social education. Although the fear and discrimination against AIDS have reduced, some stigma still exists, especially in high-risk groups such as men who have sex with men. She stressed that improving the correct understanding of the AIDS in society and promoting social inclusion are crucial to the promotion of AIDS detection and treatment. At the same time, attention should be paid to the self-efficacy of infected people and the internalization of stigma.
Professor Mehmet Okyayuz asked whether the medical team has a feedback mechanism to collect prejudice and social stigma against people infected with AIDS, and how do these feedback mechanisms work? In addition, is there any cooperation between medical support activities and other civil organizations or institutions, and how are these cooperative relationships organized? Associate Professor Xiao Xueling replied that there are indeed multiple ways to collect data and integrate feedback on bias and social stigma feedback mechanisms. Firstly, the government and Chinese Center for Disease Control and Prevention (CDC) are actively paying attention to this issue. CDC collects data through evidence synthesis and obtains feedback from relevant research. What’s more, non-governmental organizations have played an important role in expanding AIDS testing among high-risk groups. The research team can obtain more direct and detailed feedback by collaborating with multiple non-governmental organizations that focus on high-risk groups. Regarding cooperation with other institutions, there are currently many organizations in China that support this group, including government agencies and non-governmental organizations. The government is gradually transferring the management of people infected with AIDS from CDC or designated AIDS clinics to the community level, treating them as chronic diseases for management. Most of the feedback at the community level comes from non-governmental organizations, which provide important support for the management of people infected with AIDS virus through regular meetings with CDC.
Associate Professor Li Juan expressed concerns about the latest report issued by the United Nations Programme on AIDS. She pointed out that international organizations call on leaders to pay more attention to the problem of AIDS and invest more resources in management. At the same time, world leaders commit to ending AIDS as a public health threat by 2030. She asked how to view the key role of the government in AIDS management, especially in the context of the current economic downturn? In addition, women and children are often the main victims of AIDS. Especially when it comes to human rights protection, this group is more vulnerable to coercion and abuse, becoming the most marginalized group. She further asked, what is the current situation in our country? Is there a significant difference in the protection of human rights among different groups? Associate Professor Xiao Xueling replied that in China, the government plays an important role in AIDS management, especially in financial support and policy formulation. The importance of government in the management of AIDS is evident, but it depends on how governments play their leading roles. With regard to the infection and human rights protection of different groups, China has significantly reduced the risk of AIDS infection among pregnant women and children through the efforts of the government. The current focus is mainly on infections transmitted through sexual activity, especially among men who have sex with men. Actually, those men face more severe social stigma.
At the end of the meeting, Professor Peter Herrmann criticized the role evolution of some non-governmental organizations in society, stating that they have gradually become large institutions and have lost their close connection with grassroots communities. He also explored the suppressive effects of developed countries on developing countries in economic and social development, as well as the impacts of this inequality on healthcare and social structures. He advocated that the real solution lies in fundamentally changing the social structure, not just improving individual behavior, so that people can better cope with the complex challenges of modern society. Associate Professor Xiao Xueling responded that in order to safeguard human rights, in addition to efforts at the individual level, more measures need to be taken at broader levels such as society and government to better address various challenges.