Ex su ecu mm tiv ary e

The socio-economic impact of HIV at the individual and household levels in China – a five province study

Chinese Center for Disease Control and Prevention, National Center for AIDS/STD Control and Prevention (NCAIDS), and Beijing Institute of Information and Control (BIIC) in partnership with the United Nations Development Programme (UNDP)

Lin Dan. Research team leaders: Liu Kangmai. Basanta K. Gao Yuhua. Mao Tian Pu Hongbo.iniscommunication. Yuan Jianhua. Edmund Settle Research team members: Xu Xiyang. Jiang Siyu.This summary has been written by Yuan Jianhua. Pramod Kumar with inputs from Edmund Settle and Jiang Xiaopeng. Jiang Xiaopeng Technical support: Dr. Pramod Kumar July 2010 Edited and designed by Inís Communication – www. Jiang Tao. G. Bill Bikales and G. Deng Yuchen Xia Zhiyong.com . Wang Qiang. Pradhan.

Hubei and Shanxi provinces. . National Center for AIDS/STD Control and Prevention (NCAIDS). This summary has been published for the XVIII International AIDS Conference (IAC).This is the executive summary of a study on the socio-economic impact of HIV in five provinces of China: Yunnan. Guangxi. Sichuan. The study was undertaken by the Chinese Center for Disease Control and Prevention. Vienna. and Beijing Institute of Information and Control (BIIC) in partnership with the United Nations Development Programme (UNDP). 18-23 July 2010.

The socio-economic impact of HIV/AIDS at the individual and household levels in China BACKGROUND Although China is a relatively low HIV prevalence country. The survey analysed stigma and discrimination in the following areas: family. The research methods included quantitative and qualitative analyses. such as commercial sex workers. schools and some other settings. and the local impact in high prevalence areas may also be substantial. and men who have sex with men (MSMs). LIMITATIONS OF THE STUDY The survey was not conducted in the largest cities and some MARPs. One of the most insidious ways in which stigma and discrimination manifest themselves is in the unwillingness of PLHIV to disclose their HIV status. Hubei and Shanxi provinces. Guangxi. Current estimations suggest that by the end of 2009 approximately 740 000 people in China were HIV positive. focus group discussions. the number of households being affected is very large. a field survey was conducted in five high prevalence provinces of China. The survey findings regarding the impact of HIV/AIDS was affected by growing government and nongovernment organization (NGO) care and support activities. prevalence is fairly high among most-at-risk populations (MARPs) and in certain areas. Sichuan. KEY FINDINGS Stigma and discrimination. the impact at the household and individual levels is still considerable. therefore. The study found that a significant number of PLHIV Executive summary 4 . 654 males and 373 females) and 995 non-PLHIV households (472 males and 523 females). were not investigated at this time. Even though the overall prevalence of HIV is low. community. namely Yunnan. The objective of this study was to assess the socio-economic impact of HIV at individual and household levels and suggest appropriate impact mitigation steps. The survey included 931 PLHIV households (1027 PLHIV. In cooperation with local health departments and organizations. METHODOLOGY Sample households were selected by using a combination of multi-stage and systematic sampling methods. so the results of the survey may not all be directly caused by HIV/AIDS. disclosure and access to health Stigma and discrimination are present in virtually all interactions of PLHIV and their households. in-depth interviews and case studies. due to its large population it still has a high number of people living with HIV (PLHIV). Although the macroeconomic impact of HIV is likely to be relatively small compared to many higher prevalence countries. health care facilities. questionnaire surveys. The survey is unable to capture or monitor impact over a longer period of time due to its one-time nature.

Over 20 per cent of PLHIV report that their children’s marriage and employment prospects were negatively affected as a result of their HIV status. This ranges from verbal abuse and teasing.9 Female 28. and in some cases subjected their children to verbal or physical abuse.3 71. Nearly 17 per cent of men living with HIV have not disclosed to their spouse after one year. as inter-provincial comparisons show that provinces where awareness is highest are the ones with the least stigma and discrimination.8 Total 29. Table 1. Therefore. because of fear of discrimination against their children. given that one-third of PLHIV who have disclosed their status report being subjected to discrimination in their communities.8 per cent of women living with HIV reported that after disclosure they had encountered discrimination at health care facilities. even in health care facilities (Table 1). The average annual household income is 14 910 RMB for PLHIV households and 18 875 RMB for non-PLHIV households. Disclosure status Did not disclose Disclosed For those who disclosed. as one striking finding of the survey was that 12. and 11 per cent have not disclosed even after five years. Again.2 A full 90 per cent of PLHIV report that they have not disclosed their status to their children’s schools.5 69. As many as 80 per cent of those who disclosed their status reported that their children encountered discrimination as a result. Percentage of PLHIV who disclosed their HIV status at health care facilities. These results were found in all five provinces surveyed (Figure 1). which may not be surprising. In other arenas the disclosure rate is much lower. Older and less educated groups in the population are those with the lowest awareness levels and comparisons between provinces show that in some areas there has been considerable success in raising awareness. but nearly 30 per cent of PLHIV report that they have not disclosed their status. including refusal of staff to treat them. useful lessons can be learned from different programmes around the country. this may have a rational basis. Executive summary 5 . The need for greater public awareness of HIV is vividly demonstrated in these findings. to having their children’s marriages being broken off.The socio-economic impact of HIV/AIDS at the individual and household levels in China do not disclose their status even within their own households.3 13. mostly from other children who refused to play or sit together with them.5 12.9 per cent of men living with HIV and 13. Only half of PLHIV have disclosed their status in their communities. Obtaining proper health care requires disclosure of status.7 13. reported discrimination Male 30. Impact on household income and employment The survey found that household income of PLHIV households is markedly lower than that of nonPLHIV households.7 70.

Work force participation rate by age group.3 per cent of PLHIV households live under the relative poverty line. Yunnan Guangxi 80 60+ of PLHIV and 53. 40 30 Figure 2 20 10 % 0 100 90 80 70 60 50 Figure 3 40 30 20 Food 10 Clothes0 5000 Work force participation rate by age group PLHIV Non-PLHIV Non-PLHIV Non-PLHIV households PLHIV households 0-14 15-59 60+ Impace on consumption PLHIV households PLHIV Non-PLHIV Non-PLHIV Non-PLHIV households Executive summary Medicine Education Fuels and light PLHIV households Non-PLHIV households 6 Figure 3 Impace on consumption Durables PLHIV households Food Ceremonies .The socio-economic impact of HIV/AIDS at the individual and household levels in China Figure 1. Only 41 per cent of people over 59Sichuan Hubei Shanxi compared to 81. 19. it is higher among the younger and older members of PLHIV 90 15-59 households.6 per cent in non-HIV households work. This may reflect the economic stress that HIV cent places on households. While the rate is lower for PLHIV and their household members 100 0-14 during the peak work 0years of 15-59. Figure 1 Average annual household income by province RMB 25000 PLHIV households Non-PLHIV households 20000 15000 Figure 1 Average annual household income by province 10000 RMB 25000 5000 20000 0 Yunnan 15000 Guangxi Sichuan Hubei Shanxi PLHIV households Non-PLHIV households Nearly half of the PLHIV households fall in the low-income category.5 per70 of their household members. much more than the 11. 60 50 Figure 2. compared to only one-third of non10000 PLHIV ones. Average annual household income by province.5 per cent of non-PLHIV ones. force participation rate by age group Figure 2 Work The work force participation rates of PLHIV and their family members are markedly different from those % in non-PLHIV households (Figure 2).

the illnesses of one generation could also severely impair the opportunities of the next. which are expenditures that 20 create longer-term benefits for households. the income of PLHIV and the contribution to family income falls substantially once HIV is detected. as reflected in consumption spending patterns. Unemployment increases Yunnan Guangxi from 18. PLHIV Non-PLHIV Non-PLHIV PLHIV households Non-PLHIV which will produce an even greater impact for the household. PLHIV contributed 44 per cent of their family’s income. Before finding out they were HIV positive. there is marked reduction in spending on education. borrow more and receive more government support in 60 order to maintain their consumption expenditures. overall consumption levels are not lower for PLHIV (Figure 3). Although the average income of PLHIV households is markedly lower than that of 80 others. the burden of medical expenditures on HIV households is 0 significantly greater than non-HIV households. 60+ 70 This suggests that PLHIV households save less. households Figure 3. the survey found that.9 per cent. This burden is certain to increase as their health declines. Income drops for PLHIV by an average of more than 25 per cent. this survey found clear evidence 50 that types of consumption by PLHIV households is dramatically different to those not affected by HIV. As a result of these changes in employment. is increasingly viewed as the key financial determinant of 90 15-59 human welfare.9 per cent. Unless actions are taken to correct this trend. 40 Compared to non-PLHIV households. PLHIV households spend more on food and health care. is also undermined. Figure 3 Impace on consumption Food Clothes Medicine Education Fuels and light Durables Ceremonies Others 0% 10% 20% 30% 40% 50% PLHIV households Non-PLHIV households While the increase in medical expenditures for HIV households is predictable. which 30 are essential day-to-day expenditures. At the same time. Impact of HIV status on consumption. after detection this share drops to 38.10000 5000 The socio-economic impact of HIV/AIDS at the individual and household levels in China 0 PLHIV are more likely to change or lose their jobs than those without HIV. The proportion who then take work elsewhere drops from 24 per cent to 17. Furthermore. on average. Figure 2 Work force participation rate by age group % 100 Impact on household consumption 0-14 Consumption level. Executive summary Figure 4 Percentage of households receiving social security support % 45 40 35 7 . despite the fact that most of the surveyed 10 PLHIV are still in relatively good health. It is not only individual PLHIV that are affected by their illness. rather than income.2 Hubei Shanxi sharply when PLHIV discover their HIV status. Sichuan per cent to 26 per cent. the well-being of their entire households and future generations. and less on education and durables. and for their family members by an average of 11 per cent.

Table 2.7 2.0 8.9 per cent compared to only 5. the great majority do have medical insurance.2 5.The socio-economic impact of HIV/AIDS at the individual and household levels in China Coping mechanisms The survey found that while most PLHIV have no life insurance and no pension. are also making a difference. However. government financial support programmes. The gap almost disappears when the value of free medical services received by PLHIV are included in total income. Executive summary 8 . most PLHIV households still have to resort to borrowing from friends and relatives when faced with economic difficulties (Table 2). sacrificing the economic future of their family members in order to cope.0 9.9 per cent (Figure 4). mostly through participation in the new Rural Cooperative Medical Service (RCMS). As the official safety net for PLHIV is still incomplete.0 32.4 per cent of the PLHIV surveyed had received free antiretrovirals (ARVs) or traditional Chinese medicine.7 14. RCMS generally excludes HIV-related treatments and only covers a relatively small amount of daily medical expenses. the survey found many PLHIV have difficulty borrowing from these traditional sources of support.0 25. and this proportion increases with the decrease in CD4 count.2 per cent of non-PLHIV households). with more than 80 per cent of total support coming from government sources. they are much less significant than government programmes. 40. In addition.7 In one respect the survey’s findings are quite encouraging: government medical care programmes targeting PLHIV are having a clear positive impact. this support makes a clear contribution to closing the income gap between PLHIV and non-PLHIV households.7 4. Coping mechanisms Borrowing from relatives and friends Loans from money-lenders Borrowing from small financial institutions Savings Medical insurance Liquidation of assets Spouse has to go out to work Children have to go out to work Have to do additional work PLHIV households (%) 60.5 14. possibly due to doubts about their ability to repay.5 10. Although some non-government sources of support exist. 83 per cent of PLHIV with a CD4 count below 200 had received at least one form of free treatment.3 9. Coping mechanisms employed by households.4 per cent of PLHIV households receive some form of financial assistance.5 Non-PLHIV households (%) 66. 63.9 9.1 8.3 9.0 5. It thus falls far short of adequately covering the medical expenditures typically incurred by PLHIV. especially the minimum living standard assistance (MLSA). However. The average amount of financial assistance received by HIV households is more than double the support received by non-PLHIV households (Figure 5).9 9. Overall. Far more PLHIV households have to resort to the liquidation of assets to get by (10. whereas the proportion of non-PLHIV households is only 12.

Many useful examples of income-generation 2000 programmes of varying success are available from around the country. Figure 4 Percentage of households receiving social security support % 45 40 Figure 4 Percentage of households receiving social security support 35 % 30 45 25 40 20 35 15 30 10 25 5 20 0 15 10 5 PLHIV households Non-PLHIV households PLHIV households Non-PLHIV Figure 5. and have greater impact. because 4000 The dependence of PLHIV on government and social assistance poses health expenditure the coverage of these programmes is incomplete. Percentage of households receiving social security support. One critical lesson to date is that 3000 income-generation programmes targeting PLHIV and their households are less likely to achieve positive results than broader reaching programmes targeting all needy households. with many poor PLHIV households not receiving the MLSA. An important and promising alternative to direct financial aid are income4000 generation activities.0% 10% 20% 30% 40% 50% The socio-economic impact of HIV/AIDS at the individual and household levels in China Figure 4. the fiscal burden on local governments 3000 RMB may be impossible to manage. 1000 RMB PLHIV households Non-PLHIV households Executive summary 9 . households RMB 1600 Figure05 Average amount of social security support 1400 Figure 5 Average amount of social security support RMB 1000 1600 800 1400 600 1200 400 1000 200 800 0 600 400 200 1200 PLHIV households Non-PLHIV households PLHIV households Figure 6 Impact if HIV status on annual houshold health expenditure Non-PLHIV households 0 Figure 6 Impact if HIV status on annual houshold problems. including those affected 1000 Non-PLHIV households by HIV. In 2000 general. Broad programmes tend PLHIV households to be more professional and sustainable. As the number of PLHIV inevitably increases. the best way to address poverty among PLHIV households is to incorporate them firmly into a broad and effective national anti-poverty programme. however. Average amount of social security support. for example. allowing PLHIV who are in good health to continue to engage in productive activities to support themselves and their households.

using 108. In the poorest households the effect is particularly grave. such as Guangxi and Sichuan. Impact on education by annual household income. Impact on education There are presently about one million children affected by HIV/AIDS in China. The education of girls is most negatively affected.9 per cent (Table 3). The survey found that the education of children in PLHIV households is being severely weakened by the epidemic. but the future welfare of the next generation of China’s population.0 100. the average PLHIV household uses only around 80 per cent of the land that they have contracted.The socio-economic impact of HIV/AIDS at the individual and household levels in China Impact on agriculture Most of those surveyed worked in the agricultural sector. but among PLHIV households it was only 88.000 0. • The average non-PLHIV household surveyed was a net renter of others’ fields.9 93.838 186.000 0. and cultivation is the main source of income for both PLHIV and non-PLHIV households. the absolute amount of agricultural income earned by PLHIV households is likely to be much lower than for non-PLHIV.3 100. Among older children beyond the coverage of free compulsory schooling. PLHIV households.8 per cent.325 12.7 per cent in non-PLHIV households. Since total income is also lower.5 97.0 100.0 100.9 per cent continue to receive education in PLHIV households.9 Non-PLHIV households (%) 100.002 — — 0 Total * The relative poverty line is a household annual income of less than 4193 RMB. Impact on children’s education is one of the most powerful examples of how the disease is affecting not only those who contract HIV. only 48. suggesting that schooling for girls is one of the first expenditure items that poor PLHIV households cut to manage their financial difficulties.6 100.0 88. on the other hand. Annual household income (RMB) 0-4193* 0-9999 10 000-19 999 20 000-29 999 30 000-39 999 40 000+ Executive summary Enrolment ratio of children aged 10-14 PLHIV households (%) 71. Two key findings included: • The share of income earned through agricultural activities is lower for PLHIV households (31 per cent compared to 39 per cent for non-PLHIV households).0 82.4 per cent of their own assigned area. whereas for girls in non-PLHIV households it was less than 1 per cent.2 Chi-square 129. Table 3.2 per cent. using on average only 91. while this proportion is 69.781 9. children from poor PLHIV households had only a 71 per cent enrolment rate. children who have at least one parent living with HIV.000 0.69 p value 0.8 97. while those from non-PLHIV still had a 100 per cent rate. The drop-out rate for girls in PLHIV households was 13. In some provinces. this includes children who are living with HIV. are net renters of their own land.0 97.442 — — 144. 10 . and children who have lost at least one parent to the epidemic. The survey found that this economic foundation of rural life is notably disrupted by HIV.3 per cent of their assigned plot. as noted above.0 98. especially among poorer households. The school enrolment rate among 10-14 year old children (still eligible for free education) in non-PLHIV households was 97.

on average.9 2. spend moresupport do. one policy priority should be ensuring that treatments for HIV/AIDS are better covered by these national social insurance programmes. They tend Figure 5 Average amount of social security when they to visit higher-level medical facilities.8 11. Another striking difference is that members of PLHIV households who did not seek health care while ill were far less 1400 likely to treat themselves at home than those from non-PLHIV. however. because these are more likely to have special facilities available. an HIV vulnerable group in themselves.8 Health care seeking behaviour PLHIV seek health care more often than non-PLHIV and. there of 200 insurance to cover HIV treatment. the failure to treat an illness can be very dangerous for them.4 0. to broaden coverage and gradually increase the reimbursement rate to make adequate health care accessible to all.7 13. Figure 6. 600 For the mobile population400 internal migrant workers. and Executive summary 11 . Figure 6 Impact if HIV status on annual houshold health expenditure RMB 4000 3000 2000 1000 PLHIV households Non-PLHIV households China is currently engaged in efforts to make sweeping reforms to its health care insurance. Impact of HIV status on annual household health expenditure. because it is often expensive and is generally not covered by existing 800 government programmes. it should be noted that treatment in these RMB 1600 high-level facilities is more expensive and transportation costs are greater (Figure 6). such as those providing services at the county level.1 Non-PLHIV households Non-PLHIV households 4. For PLHIV who can afford commercial is even less hope of receiving medical insurance the current options are not good.Figure 4 Percentage of households receiving social security support The socio-economic impact of HIV/AIDS at the individual and household levels in China % 45 40 Table 4. But OI treatment is precisely 1000 the greatest challenge for PLHIV. Impact of HIV on education by sex. As PLHIV are vulnerable to opportunistic 1200 infections (OI). 35 30 25 20 15 10 5 0 PLHIV households Sex Male Female Total Drop-out rate of children aged 10-14 (%) PLHIV households 7. no commercial insurance covers HIV-related 0 PLHIV households Non-PLHIV households expenditures. In order to make essential health care available to PLHIV.

widowed or divorced. In the immediate future an expansion of the free ARV programme to cover OI treatments would be of great help. and (c) impact on life quality is particularly harsh for unmarried and unemployed PLHIV. Table 5. Women take on this heavier income-earning burden outside the home. Quality of life The survey used the World Health Organization’s quality of life methodology to analyse and compare the quality of life of respondents from PLHIV and non-PLHIV households. due to their difficulty maintaining marriages. social.1 4.7 2. compared to non-PLHIV households. Impact on women The survey identified a number of important ways in which the impact of HIV is disproportionately received by women and young girls. the WFPR for women living with HIV is actually 6 per cent higher than for men living with HIV (Table 5).9 16.8 7.6 Total productive time Non-working time (Note: Non-working time includes personal health time. a higher percentage of the adult PLHIV respondents are still living with their parents because they need day-to-day assistance.) 12 . they are.4 Non-PLHIV household Male 8. the school drop-out rate for girls is much higher than for boys. In comparison with non-PLHIV respondents. But there is also a need for expanded grass-roots support programmes (through NGOs) to address the psychological and social problems that are often side-effects of HIV.8 3. as many PLHIV and their household members require urgent medical care that they cannot afford.The socio-economic impact of HIV/AIDS at the individual and household levels in China furthermore. dependent on them for their livelihood and disrupting the basic functioning of the household.3 Non-PLHIV Male 7. in part. the work burden on women living with HIV is much heavier than for men living with HIV. Time use pattern of family members aged 15-59 (hours per day).2 Female 5.1 7.4 14. As mentioned above. (b) the quality of life of men living with HIV has decreased more than female. it is elderly women who take on most of this burden. PLHIV household Time use pattern Male Work time Housework time Executive summary PLHIV Female 4. This methodology assesses quality of life by the following criteria: physical. Instead of supporting their children and their parents in the prime of their lives. Impact on marriage and family structure A much higher proportion of PLHIV are single. etc.6 1. environmental.3 Female 6. with a higher workforce participation rate (WFPR) than for elderly men. when the elderly members of households are forced to continue working to support family members with HIV. Although the WFPR for women in non-PLHIV households is 6 per cent lower than for men. Current programmes to assist PLHIV and their families focus on essential economic support. with income also being a major factor.8 2. As Table 5 illustrates.9 16. instead.1 5. Living with their elderly parents imposes economic and physical stress on their families. This pattern is found in other age groups as well.7 15. In addition.7 8.0 0. that these programmes are adequately funded.7 9. self-confidence and independence. psychological. Regression analysis found that the single biggest influencing factor on PLHIV quality of life is discrimination. and continue to be responsible for most housework as well. Key findings are: (a) the quality of life of PLHIV is markedly lower than for those who are not living with HIV. relaxation and sleep.8 8.7 18.1 0.6 15.

9 6.5 Table 7.1 7. better medical facilities (Table 6).8 Female 53.0 32. Gender and health-seeking behaviour in relation to money spent (RMB).4 33.5 23. As a result.The socio-economic impact of HIV/AIDS at the individual and household levels in China One striking finding was that a higher percentage of women—both among PLHIV and non-HIV family members—sought medical treatment at the local village-level clinic. while men are more likely to go to higher-level.9 16.1 19. Table 6.   Village Town County City Others Total Male 131 652 1204 1139 584 700 Female 225 168 493 800 564 326 Male 85 423 1126 4241 48 460 Female 286 632 589 1144 114 426 Executive summary 13 .7 Female 42.0 5.2 12.2 27.4 5.2 3. While most gender-based studies of HIV have focused on epidemiological issues.5 15.9 4. Gender and health-seeking behaviour in relation to accessing health care.3 4. an average male spends considerably more money on health care than female counterparts (Table 7). the survey findings suggest the need for a broader gender-based approach to understanding and mitigating the socio-economic impact of HIV.6 3.9 Non-PLHIV households (%) Male 53. Level of hospital Village Town County City Others PLHIV households (%) Male 29.

• Income-generation activities for PLHIV should be combined with broader anti-poverty and development programmes. including targeted measures to reduce their vulnerability. such as during financial crises. 3. 4. The expansion of anti-discrimination education and its integration into all information. PLHIV-households should be given special attention during periods of shock. and basic medical insurance and other programmes in urban areas. The contents of the Four Frees and One Care policy should also be expanded to provide education support and free skills training for older children. such as by the Ministry of Civil Affairs expanding the scope of the MLSA to cover PLHIV. Appropriate legal steps should be undertaken. A targeted education support system for PLHIV households should be established. in order to protect them from liquidating valuable assets. Interventions should be developed or strengthened to protect the education of children living in PLHIV-households. 2. 5. Executive summary 14 . but also to change the attitude and behaviour of people towards PLHIV. Interest-free credit. • Social support for PLHIV should be incorporated into broader existing government support programmes. By doing this and funding these crucial programmes adequately to cover everyone in need—including PLHIV—the government will achieve greater impact and equity. especially households with single parents and elderly family members. especially for girls. including through new legislation. with a particular focus on institutional discrimination and health care settings. Various efforts to provide day-to-day support to PLHIV households. Specifically: • Efforts to improve medical care for PLHIV should focus on implementing the policies for them in the new social insurance initiatives that the government is currently pursuing. should be combined. education and communication activities should be a high priority. More attention should be given to women living with HIV. The aim of HIV/AIDS awareness education should not only be to strengthen knowledge of HIV/AIDS. The social safety net for PLHIV and their families should be integrated into broader and wellfunded national safety net programmes to achieve greater equity and effectiveness. livelihood initiatives or cash transfers should also be made available for PLHIV-households who are under financial stress. This means that the needs of PLHIV and their households should be integrated into social security/protection schemes and food programmes. to protect PLHIV from stigma and discrimination. particularly in high prevalence areas.The socio-economic impact of HIV/AIDS at the individual and household levels in China KEY RECOMMENDATIONS The study findings suggest several related policy recommendations: 1. in order to advance the ability of PLHIV households to cope with various burdens themselves. the RCMS in the countryside.

.

cn July 2010 . China 2 Liangmahe Nanlu Beijing 100600 China Tel: 86-10-85320800 Fax: 86-10-85320922 www.undp.org.China United Nations Development Programme.