Executivesummary HIV China2010
Executivesummary HIV China2010
Executivesummary HIV China2010
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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)
This summary has been written by Yuan Jianhua, Bill Bikales and
G. Pramod Kumar with inputs from Edmund Settle and Jiang Xiaopeng.
Technical support:
Dr. Basanta K. Pradhan, G. Pramod Kumar
July 2010
This summary has been published for the XVIII International AIDS Conference (IAC), Vienna, 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, due to its large population it still has a
high number of people living with HIV (PLHIV). Current estimations suggest that by the end of 2009
approximately 740 000 people in China were HIV positive. Even though the overall prevalence of HIV
is low, prevalence is fairly high among most-at-risk populations (MARPs) and in certain areas. Although
the macroeconomic impact of HIV is likely to be relatively small compared to many higher prevalence
countries, the number of households being affected is very large; therefore, the impact at the household
and individual levels is still considerable, and the local impact in high prevalence areas may also be
substantial. 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.
METHODOLOGY
Sample households were selected by using a combination of multi-stage and systematic sampling
methods. In cooperation with local health departments and organizations, a field survey was conducted
in five high prevalence provinces of China, namely Yunnan, Guangxi, Sichuan, Hubei and Shanxi
provinces. The survey included 931 PLHIV households (1027 PLHIV; 654 males and 373 females) and 995
non-PLHIV households (472 males and 523 females).
The research methods included quantitative and qualitative analyses, questionnaire surveys, focus
group discussions, in-depth interviews and case studies.
KEY FINDINGS
Stigma and discrimination, disclosure and access to health
Stigma and discrimination are present in virtually all interactions of PLHIV and their households. The
survey analysed stigma and discrimination in the following areas: family, community, health care
facilities, schools and some other settings.
One of the most insidious ways in which stigma and discrimination manifest themselves is in the
unwillingness of PLHIV to disclose their HIV status. The study found that a significant number of PLHIV
Executive summary
4
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. Nearly 17 per cent of men living with
HIV have not disclosed to their spouse after one year, and 11 per cent have not disclosed even after five
years.
In other arenas the disclosure rate is much lower. Only half of PLHIV have disclosed their status in their
communities, which may not be surprising, given that one-third of PLHIV who have disclosed their
status report being subjected to discrimination in their communities. This ranges from verbal abuse and
teasing, to having their children’s marriages being broken off. 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.
Obtaining proper health care requires disclosure of status, but nearly 30 per cent of PLHIV report that
they have not disclosed their status, even in health care facilities (Table 1). Again, this may have a rational
basis, as one striking finding of the survey was that 12.9 per cent of men living with HIV and 13.8 per
cent of women living with HIV reported that after disclosure they had encountered discrimination at
health care facilities, including refusal of staff to treat them.
Table 1. Percentage of PLHIV who disclosed their HIV status at health care facilities.
A full 90 per cent of PLHIV report that they have not disclosed their status to their children’s schools,
because of fear of discrimination against their children. As many as 80 per cent of those who disclosed
their status reported that their children encountered discrimination as a result, mostly from other
children who refused to play or sit together with them, and in some cases subjected their children to
verbal or physical abuse.
The need for greater public awareness of HIV is vividly demonstrated in these findings, as inter-provincial
comparisons show that provinces where awareness is highest are the ones with the least stigma and
discrimination. 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. Therefore, useful lessons can be learned from different programmes
around the country.
5
The socio-economic impact of HIV/AIDS at the individual and household levels in China
20000 Non-PLHIV
households
15000
20000 Non-PLHIV
0 households
Yunnan Guangxi Sichuan Hubei Shanxi
15000
Nearly half of the PLHIV households fall in the low-income category, compared to only one-third of non-
10000
PLHIV ones. 19.3 per cent of PLHIV households live under the relative poverty line, much more than the
11.5 per cent ofFigure
non-PLHIV ones. force participation rate by age group
2 Work
5000
The work force participation rates of PLHIV and their family members are markedly different from those
%
in non-PLHIV households (Figure 2). While the rate is lower for PLHIV and their household members
100
during the peak work 0years of 15-59, it is higher among the younger and older 0-14members of PLHIV
90
households. Only 41 per cent of people over 59 in
Yunnan Guangxi Sichuan non-HIV households
Hubei work,
Shanxi compared
15-59 to 81.6 per cent
80
of PLHIV and 53.5 per70cent of their household members. This may reflect the economic
60+ stress that HIV
places on households.60
50
Figure 2. Work force participation rate by age group.
40
Education
Food PLHIV
Ceremonies households
10000
5000
The socio-economic impact of HIV/AIDS at the individual and household levels in China
PLHIV are more likely to
0 change or lose their jobs than those without HIV. Unemployment increases
sharply when PLHIV discover their HIV
Yunnan status; Sichuan
Guangxi from 18.2 per cent to
Hubei 26 per cent. The proportion who
Shanxi
then take work elsewhere drops from 24 per cent to 17.9 per cent. As a result of these changes in
employment, the income of PLHIV and the contribution to family income falls substantially once HIV
is detected. Before finding out they were HIV positive, PLHIV contributed 44 per cent of their family’s
income; after detection this share drops to 38.9 per cent. Income drops for PLHIV by an average of more
than 25 per cent, and for their family members by an average of 11 per cent.
Figure 2 Work force participation rate by age group
Impact on household consumption
%
100
Consumption level, rather than income, is increasingly viewed as the key financial 0-14 determinant of
90
human welfare. Although the average income of PLHIV households is markedly lower than that of
15-59
80
others, the survey found that, on average, overall consumption levels are not lower 60+for PLHIV (Figure 3).
70
This suggests that PLHIV households save less, borrow more and receive more government support in
60
order to maintain their50consumption expenditures. At the same time, this survey found clear evidence
that types of consumption
40
by PLHIV households is dramatically different to those not affected by HIV.
Compared to non-PLHIV 30
households, PLHIV households spend more on food and health care, which
are essential day-to-day20
expenditures, and less on education and durables, which are expenditures that
create longer-term benefits
10
for households. Furthermore, despite the fact that most of the surveyed
PLHIV are still in relatively
0 good health, the burden of medical expenditures on HIV households is
significantly greater than non-HIV
PLHIVhouseholds. This burden is certain
Non-PLHIV to increase as their health declines,
Non-PLHIV
which will produce an even greater impact
PLHIV for the household.
households Non-PLHIV households
Food PLHIV
households
Clothes Non-PLHIV
households
Medicine
Education
Durables
Ceremonies
Others
While the increase in medical expenditures for HIV households is predictable, there is marked reduction
in spending on education. Unless actions are taken to correct this trend, the illnesses of one generation
could also severely impair the opportunities of the next. It is not only individual PLHIV that are affected
Executive summary
by their illness; the well-being of their entire households and future generations, as reflected in
consumption spending patterns, is also undermined.
Coping mechanisms
The survey found that while most PLHIV have no life insurance and no pension, the great majority do have
medical insurance, mostly through participation in the new Rural Cooperative Medical Service (RCMS).
However, RCMS generally excludes HIV-related treatments and only covers a relatively small amount of
daily medical expenses. It thus falls far short of adequately covering the medical expenditures typically
incurred by PLHIV. As the official safety net for PLHIV is still incomplete, most PLHIV households still
have to resort to borrowing from friends and relatives when faced with economic difficulties (Table 2).
However, the survey found many PLHIV have difficulty borrowing from these traditional sources
of support, possibly due to doubts about their ability to repay. Far more PLHIV households have to
resort to the liquidation of assets to get by (10.9 per cent compared to only 5.2 per cent of non-PLHIV
households), sacrificing the economic future of their family members in order to cope.
In one respect the survey’s findings are quite encouraging: government medical care programmes
targeting PLHIV are having a clear positive impact. 63.4 per cent of the PLHIV surveyed had received free
antiretrovirals (ARVs) or traditional Chinese medicine, and this proportion increases with the decrease
in CD4 count. 83 per cent of PLHIV with a CD4 count below 200 had received at least one form of free
treatment.
In addition, government financial support programmes, especially the minimum living standard
assistance (MLSA), are also making a difference. 40.4 per cent of PLHIV households receive some form
of financial assistance, whereas the proportion of non-PLHIV households is only 12.9 per cent (Figure 4).
The average amount of financial assistance received by HIV households is more than double the support
received by non-PLHIV households (Figure 5). Although some non-government sources of support
exist, they are much less significant than government programmes, with more than 80 per cent of total
support coming from government sources. Overall, this support makes a clear contribution to closing
the income gap between PLHIV and non-PLHIV households. The gap almost disappears when the value
of free medical services received by PLHIV are included in total income.
Executive summary
8
0% 10% 20% 30% 40% 50%
The socio-economic impact of HIV/AIDS at the individual and household levels in China
Figure 4. Percentage of households receiving social security support.
Figure 4 Percentage of households receiving social security support
%
45
Figure 440Percentage of households receiving social security support
35
%
30
45
25
40
20
35
15
30
10
25
5
20
0
15 PLHIV households Non-PLHIV households
10
5
Figure05 Average amount of social security support
Figure 5. Average amount of social
PLHIV security support.
households Non-PLHIV households
RMB
1600
Figure
14005 Average amount of social security support
1200
RMB
1000
1600
800
1400
600
1200
400
1000
200
800
0
600 PLHIV households Non-PLHIV households
400
200
0
Figure 6 Impact ifPLHIV
HIVhouseholds
status on annual houshold
Non-PLHIV health expenditure
households
RMB
The dependenceFigure 6 Impact
of PLHIV if HIV status
on government
4000 andon annual
social houshold
assistance poses health expenditure
problems; however, because
the coverage of these programmes is incomplete, with many poor PLHIV households not receiving the
MLSA, for example. As the number of PLHIV inevitably increases, the fiscal burden on local governments
RMB
3000
may be impossible to manage. An important and promising alternative to direct financial aid are income-
4000
generation activities, allowing PLHIV who are in good health to continue to engage in productive
activities to support themselves
2000
and their households. Many useful examples of income-generation
programmes of varying success
3000
are available from around the country. One critical lesson to date is that
income-generation programmes targeting PLHIV and their households are less likely to achieve positive
results than broader reaching
1000 programmes targeting all needy households, including those affected
by HIV. Broad programmes tend PLHIV
2000 to behouseholds
more professional and sustainable,
Non-PLHIV householdsand have greater impact. In
general, the best way to address poverty among PLHIV households is to incorporate them firmly into a
broad and effective national anti-poverty programme.
1000
PLHIV households Non-PLHIV households
Executive summary
9
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, and cultivation is the main source of income
for both PLHIV and non-PLHIV households. The survey found that this economic foundation of rural life
is notably disrupted by HIV. 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). Since total income is also lower, as noted above,
the absolute amount of agricultural income earned by PLHIV households is likely to be much lower
than for non-PLHIV.
• The average non-PLHIV household surveyed was a net renter of others’ fields, using 108.4 per cent of
their own assigned area. PLHIV households, on the other hand, are net renters of their own land, using
on average only 91.3 per cent of their assigned plot. In some provinces, such as Guangxi and Sichuan,
the average PLHIV household uses only around 80 per cent of the land that they have contracted.
Impact on education
There are presently about one million children affected by HIV/AIDS in China; this includes children who
are living with HIV, children who have at least one parent living with HIV, and children who have lost at
least one parent to the epidemic. The survey found that the education of children in PLHIV households is
being severely weakened by the epidemic, especially among poorer households. The school enrolment
rate among 10-14 year old children (still eligible for free education) in non-PLHIV households was 97.2
per cent, but among PLHIV households it was only 88.9 per cent (Table 3). In the poorest households
the effect is particularly grave; children from poor PLHIV households had only a 71 per cent enrolment
rate, while those from non-PLHIV still had a 100 per cent rate. The education of girls is most negatively
affected, suggesting that schooling for girls is one of the first expenditure items that poor PLHIV
households cut to manage their financial difficulties. The drop-out rate for girls in PLHIV households
was 13.8 per cent, whereas for girls in non-PLHIV households it was less than 1 per cent. Among older
children beyond the coverage of free compulsory schooling, only 48.9 per cent continue to receive
education in PLHIV households, while this proportion is 69.7 per cent in non-PLHIV households. Impact
on children’s education is one of the most powerful examples of how the disease is affecting not only
those who contract HIV, but the future welfare of the next generation of China’s population.
* The relative poverty line is a household annual income of less than 4193 RMB.
10
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
Table 4. Impact of HIV on
40 education by sex.
35
30 Drop-out rate of children aged 10-14 (%)
Sex 25
PLHIV households Non-PLHIV households
20
Male 15 7.7 4.4
Female 10 13.8 0.9
Total 5 11.1 2.8
0
PLHIV households Non-PLHIV households
Health care seeking behaviour
PLHIV seek health care more often
Figure than non-PLHIV
5 Average amountand, on
ofaverage,
social spend moresupport
security when they do. They tend
to visit higher-level medical facilities, such as those providing services at the county level, because these
are more likely to have special
RMB facilities available; however, it should be noted that treatment in these
high-level facilities is more1600
expensive and transportation costs are greater (Figure 6). 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
1200 than those from non-PLHIV. As PLHIV are vulnerable to opportunistic
infections (OI), the failure to treat
1000
an illness can be very dangerous for them. But OI treatment is precisely
the greatest challenge for PLHIV, because it is often expensive and is generally not covered by existing
800
government programmes.
600
For the mobile population400 of internal migrant workers, an HIV vulnerable group in themselves, there
is even less hope of receiving insurance to cover HIV treatment. For PLHIV who can afford commercial
200
medical insurance the current 0 options are not good; no commercial insurance covers HIV-related
expenditures. PLHIV households Non-PLHIV households
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, to broaden
coverage and gradually increase the reimbursement rate to make adequate health care accessible to
Executive summary
all. In order to make essential health care available to PLHIV, one policy priority should be ensuring
that treatments for HIV/AIDS are better covered by these national social insurance programmes, and
11
The socio-economic impact of HIV/AIDS at the individual and household levels in China
furthermore, that these programmes are adequately funded. In the immediate future an expansion
of the free ARV programme to cover OI treatments would be of great help, as many PLHIV and their
household members require urgent medical care that they cannot afford.
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. This methodology assesses
quality of life by the following criteria: physical, psychological, social, environmental, self-confidence
and independence. Key findings are: (a) the quality of life of PLHIV is markedly lower than for those who
are not living with HIV; (b) the quality of life of men living with HIV has decreased more than female; and
(c) impact on life quality is particularly harsh for unmarried and unemployed PLHIV. Regression analysis
found that the single biggest influencing factor on PLHIV quality of life is discrimination, with income
also being a major factor.
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. As mentioned above, the school drop-out rate for girls is much
higher than for boys. In addition, when the elderly members of households are forced to continue
working to support family members with HIV, it is elderly women who take on most of this burden,
with a higher workforce participation rate (WFPR) than for elderly men. This pattern is found in other
age groups as well. Although the WFPR for women in non-PLHIV households is 6 per cent lower than
for men, the WFPR for women living with HIV is actually 6 per cent higher than for men living with HIV
(Table 5). Women take on this heavier income-earning burden outside the home, and continue to be
responsible for most housework as well. As Table 5 illustrates, the work burden on women living with
HIV is much heavier than for men living with HIV.
Table 5. Time use pattern of family members aged 15-59 (hours per day).
PLHIV household
Non-PLHIV household
Time use pattern PLHIV Non-PLHIV
Male Female Male Female Male Female
Work time 4.6 4.8 7.1 5.8 8.0 6.7
Housework time 1.1 3.1 0.8 2.8 0.7 2.7
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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, better medical facilities (Table 6). As a result, an average male spends considerably more
money on health care than female counterparts (Table 7). While most gender-based studies of HIV have
focused on epidemiological issues, the survey findings suggest the need for a broader gender-based
approach to understanding and mitigating the socio-economic impact of HIV.
Executive summary
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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. The expansion of anti-discrimination education and its integration into all information, education
and communication activities should be a high priority, particularly in high prevalence areas. The
aim of HIV/AIDS awareness education should not only be to strengthen knowledge of HIV/AIDS,
but also to change the attitude and behaviour of people towards PLHIV. Appropriate legal steps
should be undertaken, including through new legislation, to protect PLHIV from stigma and
discrimination, with a particular focus on institutional discrimination and health care settings.
2. The social safety net for PLHIV and their families should be integrated into broader and well-
funded national safety net programmes to achieve greater equity and effectiveness. By doing
this and funding these crucial programmes adequately to cover everyone in need—including
PLHIV—the government will achieve greater impact and equity. This means that the needs of
PLHIV and their households should be integrated into social security/protection schemes and food
programmes. PLHIV-households should be given special attention during periods of shock, such
as during financial crises. Interest-free credit, livelihood initiatives or cash transfers should also be
made available for PLHIV-households who are under financial stress, in order to protect them from
liquidating valuable assets. 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; the RCMS in the
countryside, and basic medical insurance and other programmes in urban areas.
• Social support for PLHIV should be incorporated into broader existing government support
programmes, such as by the Ministry of Civil Affairs expanding the scope of the MLSA to cover
PLHIV.
• Income-generation activities for PLHIV should be combined with broader anti-poverty and
development programmes, in order to advance the ability of PLHIV households to cope with
various burdens themselves.
4. Various efforts to provide day-to-day support to PLHIV households, especially households with
single parents and elderly family members, should be combined.
5. More attention should be given to women living with HIV, including targeted measures to reduce
their vulnerability.
Executive summary
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