######### Introduction

The Durban Monitoring the AIDS Pandemic (MAP) Network Symposium, *The
Status and Trends of the HIV/AIDS in the World* was held on 5-7 July
2000. This was an official satellite symposium of the XIIIth
International AIDS Conference, 9-14 July 2000.

The three-day MAP Network symposium held in Durban was the seventh
symposium formally organized by this global network formed in December
1996. It was part of a continuing series of regional and global symposia
that have been organized to understand the trajectory of the HIV/AIDS
epidemics. Starting with *The Status and Trends of the HIV/AIDS
Epidemics in Africa Symposium* that was held in Kampala, Uganda in
December 1995, a team of internationally recognized technical
specialists in epidemiology, modeling, economics, demography, public
health, and international development was formed to monitor the dynamics
of the HIV/AIDS pandemic and various regional epidemics. By collecting,
analyzing, and disseminating information on HIV/AIDS, this team of
experts, which has grown rapidly over the course of four years into a
global network, seeks to assist governments, organizations and the world
at large to respond more actively and effectively to the challenges
posed by the HIV/AIDS pandemic.

The MAP symposium in Durban brought together 38 global and regional
experts, including MAP members and some specially invited participants,
to achieve the following objectives:

-   To present and share new information on the status and trends of the
    HIV/AIDS epidemics in the world;

-   To review the epidemiological and behavioral patterns among the
    HIV/AIDS epidemics affecting the different populations;

-   To identify specific data needs for monitoring and estimating the
    HIV/AIDS epidemics; and

-   To produce and disseminate a consensus report on the current status
    of the HIV/AIDS epidemics in the world.

This report, co-authored by the Durban MAP Symposium participants and
produced in less than 24 hours, reflects a consensus of the analysis,
projections and recommendations brought forward during the symposium.
Its aim is to provide information that can be used by international
bodies, to briefly review the most important aspects of the history of
the HIV/AIDS epidemics to date, to recognize the current status of and
trends within these epidemics, and to take immediate action to affect
the course of these epidemics in the future.

**Statement of the Global Network of People Living with HIV/AIDS
(GNP+):**

**Impact of data on the HIV/AIDS epidemic on the lives of people living
with HIV/AIDS**

The importance of data concerning the trends and determinants of the
HIV/AIDS pandemic cannot be denied. For people living with the virus it
impacts us in many ways. Data can help improve the level and scope of
care and treatment services which we receive and it can contribute to
mitigating at least some of the impact of the stigma and discrimination
which we face on a daily basis.

Governments, donor organizations, communities, NGOs and the private
sector all need HIV/AIDS monitoring data. Data can be used to mobilize
political will in order to increase the scale of both prevention and
care interventions, to identify priorities for the allocation of scarce
resources, to select and target activities, and to monitor the progress
in the response to the epidemic. True, accurate and reliable data
regarding the pandemic are essential to ensure that the scale of the
crisis is both understood and to improve our collective response.

People living with HIV/AIDS, organized under GNP+, are concerned when
different information about the epidemic is collected and presented by
different groups of people and institutions. Information about the
global and national trends which is not consistent cannot be used for
planning and setting priorities for prevention and care investment. This
directly affects the lives of people living with HIV in the respective
countries as time is lost in debating the validity of the sources of
information and preference is often given to the source that paints the
picture less gloomy. We are concerned that those who wish to deny the
true scope and nature of the crisis can also misuse data. In addition,
endless debate can yield ongoing inaction or misallocation of funds.

We therefore call upon the International Organizations, National
Institutes/Ministries of Health and the National AIDS Control Programs
to emphasize the need for reasonably accurate statistics on the epidemic
for planning and making the right decisions. Factors that bring about
the inaccuracies should therefore be isolated and corrective measures
put in place. At the same time, academic discussion about the validity
of the data should give room to concrete action for preventing further
spread of HIV and ensuring access to care for those infected.

People living with HIV/AIDS can be a valuable resource to assist
epidemiologists and program managers in their difficult work to provide
a true picture of the situation. From our participation in cohort
studies to assistance in identifying potential sample populations for
participating in behavioral surveillance investigations, we offer our
experience and abilities to assist in ensuring that data collected are
not only valid but are further transformed from mere numbers to action
and hope for our future.

**Milly Katana, Board Member for Africa**

**Joseph Scheich, International Coordinator**

**The AIDS Pandemic at the start of the 21^st^ Century**

**Global and regional overview**

At the turn of the millennium, UNAIDS and WHO estimated that 34.3
million adults and children were living with HIV/AIDS. More than 18
million have already died of the disease. The vast majority -- about 95
percent -- of all people living with HIV/AIDS (PLWHA) live in developing
countries. The proportion will continue to rise in these countries,
where poverty, poor health systems, gender inequality, limited resources
for prevention and care, as well as denial and stigma fuel the spread of
the virus.

![](media/image2.wmf)

#### Africa

As seen above the situation is worst in sub-Saharan Africa. With 24.5
million infections, almost one in ten adults 15-49 years of age is
already living with the virus throughout the sub-continent. The spread
is not equal within sub-Saharan Africa. While the first major epidemics
were described in countries of central and eastern Africa, the epidemic
is now far worse in the southern part of the continent. In South Africa,
infection rates increased from less than 1 percent in the adult
population at the beginning of the 90s to about 20 percent within less
than one decade. Twenty percent and more of the adult population are
also living with the virus in Botswana, Lesotho, Namibia, Swaziland,
Zambia, and Zimbabwe. The latest data show that more than one-third of
all men and women 15-49 years of age are now living with the virus. Such
rates were never thought to be possible and are hard to grasp.

Women are harder hit in Africa than men. About 55 percent of all adults
living in the sub-continent with HIV/AIDS are women. The difference
between men and women is most pronounced in those less than 25 years of
age. A population-based survey in Kisumu, Kenya, showed HIV rates in 15
and 16 year old girls of 8 and 18 percent while no infections were
documented in boys of the same age. In 19 year old girls the rates were
up to 33 percent, while that in boys was almost 9 percent. The reasons
for these extremely high rates in girls are not fully understood.
Biological vulnerability of young girls and the fact that girls
frequently have sex partners of much higher age -- with high levels of
infection -- likely play a role.

> **BOX: High Vulnerability to HIV Infection in Young Women in
> sub-Saharan Africa**
>
> Several studies in sub-Saharan Africa have noted that HIV prevalence
> is high in young women within the first few years of sexual activity
> but rises more slowly in young men. Recent data from four urban
> populations and one rural population confirm dramatic male-female
> differences in HIV prevalence in young adults (see Figure). To a
> degree, these differences could be an artifact due to inadvertent
> failure to include young men with higher rates of HIV seropositivity
> in the surveys but the consistency of the finding and the magnitude of
> the difference makes this unlikely as a full explanation.
>
> **HIV Prevalence in Young Men and Women in sub-Saharan Africa**
>
> ![](media/image3.wmf)
>
> Women may have higher HIV prevalence than men because they are more
> exposed to infected partners and/or because they are at higher risk of
> acquiring HIV infection from an infected partner. The risk of exposure
> to an HIV infected partner at a young age depends on the age at sexual
> debut, the number of partners, and the likelihood that those partners
> are infected. Reported age at first sex is similar for men and women,
> and even at young ages men generally report higher numbers of partners
> than do women. Since HIV prevalence increases with age, the tendency
> for young women to have older partners both within and outside
> marriage may increase their exposure to HIV-infected partners. Age
> differences between partners similar to those recorded in Mutasa have
> been found in a number of studies. In Mutasa, the older a woman\'s
> most recent partner, the more likely she was to be infected with HIV.
>
> Although age difference between partners provides a partial
> explanation for the
>
> (continued on next page)
>
> early rise in prevalence in young women, it does not appear to be the
> full answer. It has been estimated that, in Kisumu and Ndola, the risk
> of having an HIV infected partner is similar for young unmarried men
> as for unmarried women. This suggests that young women may be
> particularly susceptible to HIV. There is some evidence that HIV
> transmission from men to women is more efficient than from women to
> men. Several studies of discordant couples in Africa and elsewhere
> have found higher

## **Age Difference between Respondent and Partner**

> ![](media/image4.wmf) seroconversion rates in initially seronegative
> female partners of male index cases, than in the initially
> seronegative male partners of female index cases, though other studies
> have found similar seroconversion rates for men and women in HIV
> discordant partnerships. Susceptibility to HIV infection in very young
> women may be particularly high due to immaturity of the genital tract
> and laceration of the hymen at first sexual intercourse. Young women
> were also found to have high prevalence of other sexually transmitted
> infections, including HSV-2, in these studies. These infections, which
> are frequently acquired from older partners, increase susceptibility
> to HIV infection.

#### Asia

In Asia, rates of infection are generally much lower. They reach two
percent or more of the adult population in three countries, Thailand,
Cambodia and Myanmar. In many of the very populous nations of the
region, prevalence does not exceed 1 in a thousand. However, nationwide
average prevalence estimates do not tell the full picture. China and
India are home to more than one-third of the world's total population.
Each of these countries has more inhabitants than all African nations
together. As in Africa, the spread of HIV is different from one province
to another in China, or from one state to another state in India. In
fact, while HIV seems to be extremely rare in some states in India,
especially in the northern parts of the country, rates have reached 2
percent and more in the state of Tamil Nadu. One can easily imagine what
it would mean in terms of total numbers if HIV would spread at similar
levels to others states, given the sheer size of the country's
population.

> **BOX: China**
>
> China's transition since 1978 from a planned economy to an open market
> has led to an unprecedented period of economic growth. However, these
> changes have also been accompanied by changes in social norms and
> individual behavior. Up until this point in time, the number of
> reported AIDS cases is quite small, but all 31 provinces have reported
> AIDS. With a population of over 1.2 billion even a limited epidemic
> could affect millions of people. Indeed, the China
> Government/UNAIDS/WHO estimate that 500 thousand Chinese were HIV
> positive at the end of 1999. Given the right conditions, China's
> HIV/AIDS epidemic could begin to spread even more rapidly.
>
> One worrisome indication of the presence of just those conditions is
> the increasing number of reported cases of sexually transmitted
> infection (STI). Reported cases of STI have increased from 5.8
> thousand in 1985 to over 836 thousand in 1999. Considering the fact
> that reported cases are thought to be seriously underreported, these
> data suggest the increasing potential for rapid spread of HIV.
>
> ![](media/image2.wmf)

According to official estimates, there are a minimum of 3 million drug
users in China. Limited studies show that needle-sharing is common, with
more than 45 percent of injectors sharing needles. HIV infection is
reported among injecting drug users (IDU) from 25 provinces. In 1995,
data from eight IDU sentinel sites found HIV infection ranging from 0 to
0.2 percent. By 1999, based on data from 19 sites, prevalence ranged up
to over 77 percent.

There are also indications of increasing risk for heterosexual
transmission in China. With official estimates of more than 3 million
sex workers in China, condom use and HIV prevalence among sex worker
populations are important indications of heterosexual risk of infection.
Data from sentinel surveillance sites show that fewer than 10 percent of
sex workers reported always using condoms with clients, and more than
half reported never using condoms. Sentinel surveillance of this
population in 1999 shows prevalence ranging up to over 6 percent.

> China faces many challenges in the coming years in preventing rapid
> growth of HIV infection. Public resources for prevention are limited
> and some government leaders are not convinced of the potential for
> rapid epidemic growth. Information campaigns have been few and the
> level of knowledge of prevention measures is low. The illegal nature
> of injecting drug use and sex work make populations with these
> behaviors very difficult to reach. Finally, China's increasingly
> mobile population will pose challenges to effective implementation of
> public health interventions.

**Latin America**

In Latin America, the picture is diverse as well. Rates are generally
highest in Central America and the Caribbean where heterosexual spread
of HIV seems the predominant mode of transmission. In Haiti rates today
exceed 5 percent, the only country with such rates outside the African
continent. In countries of South America, the epidemics are generally
concentrated in sub-populations at highest risk, such as men having sex
with men (MSM) and IDU. Trends seen in these countries are similar to
the patterns in the United States. While overall incidence of HIV
infection is rather stable over the past several years, the proportion
of infections through heterosexual contacts and consequently in women is
increasing. Countries such as Brazil, Argentina, and Mexico have also
made strong efforts in the provision of adequate care for those
infected. In Brazil, like in other countries of the continent, access to
ARV (anti-retroviral) treatment through the public service is guaranteed
by a presidential law. As a consequence, these countries have seen
reduced morbidity and mortality from AIDS in recent years.

> **BOX: Brazil**
>
> The first Brazilian AIDS cases were diagnosed in the early 80's
> primarily in MSM and blood product recipients. Changes in the
> epidemiological profile have been observed over time. In the last
> three years, the incidence rate of new AIDS cases has stabilized
> around 14.0 per 100,000 inhabitants, the incidence among MSM and IDU
> has been decreasing and heterosexual transmission seems to be on the
> increase.
>
> The role of local or regional NGOs, supported by the government, has
> been crucial for innovative approaches as well as reaching target
> high-risk and vulnerable populations. During the 1994-1999 period, 900
> NGO projects were granted, involving an amount of US\$ 25.2 million
> dollars.
>
> Health promotion and intervention activities, considered the most
> important priorities, have been implemented all over the country.
> National campaigns have focused on information on modes of HIV/STD
> transmission and prevention, the preventive role of consistent condom
> use, as well as the importance of the human and civil rights of people
> living with HIV/AIDS. Educational school programs, including health
> promotion and sexual education, have been set up and teacher training
> has been done through long distance teaching by TV broadcasting
> networks.
>
> A national survey conducted in 1998/1999 showed significant sexual
> behavior changes. Results suggested that condoms were used by 48
> percent of all young males in their first sexual encounter. This
> proportion rises to 71 percent among individuals with higher
> educational level. Current use of condoms is 12 times higher than in
> 1986, when they were used by scarcely 4 percent.
>
> Data from the same survey also show that 24 percent of the population
> regularly use condoms and this proportion reaches 44 percent among
> young people aged 6-25. In sexual relations with non-steady partners
> among males between 16-65 years old, 63 percent report consistent use
> of condoms. Additional evidence shows an increase in commercial sales
> of condoms from 70 million in 1993 to 320 million in the year 1999.
>
> A national public laboratory network was set up to guarantee the
> availability as well as quality control of laboratory tests including:
> HIV infection diagnoses, opportunistic infections diagnoses, viral
> load quantification and CD4/CD8 count, HIV characterization and most
> recently, an HIV resistance monitoring and an HIV genotyping network.
> Free access to lab tests is guaranteed in the public health system,
> following the National ARV Consensus.
>
> The most important policy decision on HIV/AIDS was taken in December
> 1996, when the President signed a decree assuring free access to
> anti-retrovirals and drugs for opportunistic diseases to all people
> living with HIV/AIDS, allocating at the same time the required
> financial resources.
>
> By February 2000, 85,000 people living with HIV/AIDS were receiving
> ARV treatment provided by the Ministry of Health (MOH) 5 percent of
> them were children. Annual expenditures for ARV rose from US\$ 34.3
> million in 1996 to US\$ 335.0 million in 1999 and to an estimated US\$
> 400 million in the year 2000. The number of new patients has also
> increased over time, from about 24,000 in January 1997 to more than
>
> (continued on next page)
>
> 75,000 in December 1999. However, during the same period, US\$ 472
> million was
>
> saved due to the reduction in hospitalization and the cost of drugs
> for treating opportunistic infections. This amount does not take into
> account the reduction of retirements supported by public funds, or the
> wages otherwise lost to the economy. It does not take into account a
> non-measurable return: the welfare of patients and relatives, better
> quality of life, and longer survival.
>
> As a result of this policy, the AIDS mortality rate has decreased over
> time. At the national level, a reduction of 38 percent in the fatality
> rate is observed from 1995 to 1997. In Sao Paulo, where one-third of
> Brazilian AIDS patients are found, a reduction in mortality of 50
> percent was observed from 1995 to 1999.
>
> The decision of the Brazilian Government also covers technological
> support to national production of ARV. Five state laboratories are now
> responsible for providing almost 30 percent of MOH acquisition and
> this proportion will increase to 70 percent by the end of the year
> 2000. The state companies mostly produce generic copies of drugs. Due
> to the introduction of local state production, a very significant
> price decrease occurred over time. From 1996 to 2000, there was an
> average cost decrease of about 60 percent compared to a 9 percent
> reduction for drugs produced exclusively by multinational companies.
>
> In conclusion, the Brazilian case shows the positive impact of strong
> societal concern and commitment in responding to the HIV/AIDS
> epidemic, followed by a very clear government political decision. Even
> in developing countries, it is possible to change the face of the
> epidemic and to create new hope for the future.
>
> .![](media/image3.wmf)

**"Minority" countries: the small islands, nations and territories of
the Caribbean and the Central American Isthmus**

Rightly so, most HIV/AIDS prevention efforts and international resources
are being channeled to developing countries with a high HIV/AIDS
prevalence. However, some of the smaller nations and territories with a
worsening or potentially significant HIV/AIDS epidemic have not received
sufficient attention by the international community. The Caribbean has
one of the most severe HIV/AIDS epidemics outside sub-Saharan Africa.
PAHO/WHO/UNAIDS estimate that there are about 360,000 people living with
HIV infection in the Caribbean and that 1 in 50 persons between the ages
of 15 and 49 are already infected with HIV. As of the end of 1999, more
than 26,000 AIDS cases had been reported in 19 English and
Dutch-speaking small countries and territories in the Caribbean
representing a population of approximately 6.6 million. Yet, the size of
individual country populations -- ranging from 8,000 in Anguilla to 2.5
million in Jamaica (with a median of approximately 80,000 for Dominica
and Grenada) -- has limited both the availability of local full-time,
qualified personnel and the much needed international resource
mobilization efforts commensurate with the national and regional
magnitude of the HIV/AIDS epidemic.

A similar situation prevails in some of the Central American nations
with increasing HIV prevalence such as Honduras, Belize, Guatemala and
El Salvador, where demand for HIV prevention and care services clearly
exceeds current capacity for response. Characteristically, the Caribbean
and Central American countries host highly mobile populations which
travel from country to country (e.g. migrant workers, CSW, truck
drivers, sailors) and have significant trade, tourism and migration
movements to and from other regions of the world, especially North
America and Western Europe. In a fast-moving and shrinking world, "size
really doesn't matter", and the impact of an unchecked HIV/AIDS epidemic
in the Caribbean and Central America may be felt around the world (see
also box [x]{.underline}).

######## The Former Soviet Union

In the countries of the former Soviet Union, the HIV epidemics continue
to be mainly concentrated in IDU. In the Newly Independent States, the
IDU-associated epidemic only started in 1995/6, but now affects a large
number of cities, and virtually all administrative regions in Ukraine,
Russia, Belarus, and Moldova. In 1999, more than 5,000 drug injectors
were identified as HIV infected in Moscow alone. Due to this outbreak in
the Moscow region, more HIV infections have been registered in 1999 in
Russia alone compared to all previous years put together (Figure CCC).
HIV prevalence varies between less than 2 percent of IDU registered
officially in Russia to about 30 percent in sentinel surveys in Ukraine
and Russia and more than 60 percent in Svetlogorsk in Belarus and drug
injecting sex workers in Kaliningrad. HIV prevalence among other
population groups seems to have remained low so far.

While about 130,000 Russians are believed to be already living with the
virus, the Russian Ministry of Health estimates the number of IDUs in
Russia at about 3 million, 2 percent of the total population, providing
for a large pool of highly vulnerable but not yet infected persons.
Although not confirmed in scientific studies, similarly high estimates
have also been made for Ukraine and other Newly Independent States. With
the economic situation of women deteriorating, the number of women
engaging in sex work, potentially at high risk of infection, is believed
to have increased considerably.

At the same time, large epidemics of syphilis and other STIs have been
reported from these countries. Between 200,000 and 400,000 new cases of
syphilis have been reported annually in the past few years from Russia
alone. And that my only be the tip of the iceberg, as under-reporting is
believed to be high. Although major spread of HIV via heterosexual
transmission in the population at large has not yet been confirmed, the
massive increase in STIs in the populations of Eastern European
countries does prove the potential for more wide spread epidemics of
HIV. Early and effective interventions are needed now to prevent what
could develop into one of the major epidemics around the globe.

![](media/image1.wmf)

As described in more detail later in this report, the epidemics in
industrialized countries follow a pattern with massive decreases in HIV
morbidity and mortality since 1995 due to the introduction of Highly
Active Anti-Retroviral Therapy (HAART). However, infection rates have
been stable over the last decade and risk behavior seems to be
increasing in some sub-populations.

####  

#### The Demographic Impact of AIDS

Since the beginning of the epidemic, more than 18 million people have
died of HIV/AIDS. However, with more than 30 million people currently
living with the virus, and more than 5 million new HIV infections every
year, this is only the beginning of the epidemic's impact. Globally,
HIV/AIDS is now well established in the list of the top ten leading
causes of death. It is only surpassed by disease groups such as
ischiaemic heart disease, cerebrovascular disease, and lower respiratory
infections -- all typical causes of death among old people. In
sub-Saharan Africa, where the epidemics are worst, AIDS kills by far
more people than any other cause of death. More than 1 out of 5 deaths
in the sub-continent are caused by HIV. And, unlike many other causes of
death, AIDS deaths will continue to rise in the coming years. And it is
highest in young women and men in their most productive years

As a result of high levels of HIV infection, estimated crude death rates
including AIDS mortality are greater by 50 to 500 percent in eastern and
southern Africa over what they would have been without AIDS. For
example, in Kenya, with an adult HIV prevalence of 14 percent at the end
of 1999, crude death rates in the year 2000 are estimated to be twice as
high (14.1 deaths per thousand population), than they would have been
without AIDS (6.5 deaths per thousand population). In South Africa, with
an estimated 20 percent adult HIV prevalence level, crude death rates
are also twice as high (14.7 per thousand population), than they would
have been without AIDS (7.4 per thousand population). In Asia and Latin
America the estimated crude death rates are also higher than they would
have been without AIDS in many countries, although by a smaller amount.

#### AIDS deaths cause reduction in population growth

At the beginning of the 21^st^ century the population growth rate in
Zimbabwe has been reduced to nearly zero due to AIDS mortality,
according to new population projections done by the U.S. Census Bureau.
Other countries with sharply reduced growth rates include several other
southern African countries: Botswana, Malawi, Namibia, South Africa,
Swaziland, and Zambia. In Asia, AIDS mortality results in slightly
reduced growth rates in Myanmar, Cambodia and Thailand.

By the year 2003, Botswana, South Africa and Zimbabwe will be
experiencing negative population growth, down to --0.1 to --0.3 percent
from the 1.1 to 2.3 percent it would have been without AIDS. This is the
first time ever that negative population growth has been projected for
developing countries. Lack of growth is due to high levels of HIV
prevalence in these countries coupled with relatively low fertility. In
other countries, populations will still grow despite high levels of
mortality, due to very high levels of fertility.

##### **International development goals will not be achieved due to HIV/AIDS**

Life expectancy and child mortality rates have been traditionally used
as markers for development. While major achievements have been observed
for both parameters in most countries over the past decades, AIDS has
caused a reversal of these positive trends in many countries.

Children born today in Botswana, Malawi, Mozambique, Rwanda, Zambia, and
Zimbabwe have life expectancies below 40 years of age. They would have
been 50 years or greater without AIDS. In Botswana, life expectancy at
birth is now estimated to be 39 years instead of 71 without AIDS. In
Zimbabwe, life expectancy is 38 instead of 70.

In Latin America and the Caribbean, the impact on life expectancy is not
as great as in sub-Saharan Africa because of lower HIV prevalence
levels. However, they are still lower than they would have been without
AIDS. In The Bahamas, life expectancy at birth is now 71 years instead
of 80. And in Haiti, life expectancy is now 49 instead of 57. In Asia,
Thailand, Cambodia, and Myanmar have lost three years of life
expectancy.

![](media/image1.wmf)

The impact on child mortality is highest among those countries that had
significantly reduced child mortality due to other causes and where HIV
prevalence is high. Many HIV-infected children survive their first
birthdays, only to die before the age of 5. In Zimbabwe, 70 percent of
all deaths among children less than 5 are due to AIDS. In South Africa,
that percentage is 45. In The Bahamas, 60 percent of deaths among
children less than 5 are due to AIDS. In Myanmar, Cambodia and Thailand,
1 percent of deaths among children are due to AIDS.

Due to these substantial increases in child mortality, only 5 out of 51
countries in sub-Saharan Africa will reach the International Conference
on Population and Development goals for decreased child mortality.

**AIDS mortality will produce population structures never seen before**

Particularly in those countries with projected negative population
growth, Botswana, South Africa and Zimbabwe, population "pyramids" will
acquire a new shape "the population chimney". The implications of such
new population structures are truly shocking. Large numbers of children
will have lost their parents before graduating from school. Many of
these will have to work to earn their living and that of their siblings.
Increased child labor will be unavoidable. There will also be profound
impacts on the labor force structure, which is already felt in many
sectors in many countries. As projected by UNAIDS and UNICEF (see
Progress of Nations, UNICEF, July 2000), the "teacher" to "pupil" ratio
will be substantially reduced due to death of teachers from HIV/AIDS.

![](media/image1.wmf)

#### Data on HIV infection rates and mortality do not tell the whole story

Many individuals have difficulty grasping the results of these high
prevalence levels. The resulting AIDS mortality is difficult to
comprehend. Given the current HIV prevalence rates, many more millions
of individuals will die due to AIDS over the next decade than have over
the past 2 decades. Many of the southern African countries are only
beginning to see the impacts of these high levels of HIV prevalence.

Current prevalence data, horrifying as they are, do not convey the full
picture facing individuals in high HIV prevalence populations. Because
prevalence is a measure of current infection levels amongst living
individuals, it does not capture infections amongst those who have
already died or who have not yet become infected but will be in the
future. We can look at current incidence and mortality patterns and
estimate the lifetime risks of contracting HIV and dying from AIDS faced
by young people embarking on the sexually active phase of their lives.
This analysis shows that in a country such as South Africa, or Zambia,
where prevalence in the year 2000 has reached about 20 percent, a
15-year old teenager would face a lifetime risk of HIV infection and of
death from AIDS on the order of 60 percent if experiencing current
age-specific incidence rates throughout his or her life.

There have been success stories: Thailand, Senegal, and Uganda. In
Thailand and Uganda, concerted efforts at all levels of civil society
have turned around increasing HIV prevalence rates. In Senegal, programs
put into place early in the epidemic have kept HIV prevalence rates low.
These successes can be repeated. However, the current burden of disease,
death and orphanhood, will be a significant and increasing problem in
many countries of sub-Saharan Africa for the near future.

# **BOX: New Glimmers of Hope in South Africa and Cambodia?**

> Cambodia has the highest general population HIV prevalence in Asia.
> Prevalence in adult males and females aged 15-49 is estimated at 3.2
> percent, with many women now being infected by their husbands, who
> form a bridge population with sex workers and other casual partners.
> National surveillance has monitored HIV since 1995 and behavior change
> since 1997.
>
> Given the urgency of this situation, the nation has mounted a
> multisectoral, multilevel response. National AIDS Authority meetings,
> other national forums, and brochures on impacts have informed national
> and provincial authorities about the situation. The multisectoral
> National AIDS Authority, with 7 ministries represented, has enabled
> curriculum development for HIV/AIDS education in schools, condom
> promotion in the ministry of defence, and capacity building in the
> other ministries. Fourteen of 24 provinces have decentralised budgets
> for cross-sectoral HIV prevention and care projects, which are being
> mainstreamed into other activities. NGOs have been active in community
> level work with students, sex workers, police, military, and factory
> workers. Their Royal Highnesses the King and the Queen, held audiences
> for people living with AIDS on World AIDS Day in 1999 and His Royal
> Highness, Prince Norodom Ranariddh, chairs the National Assembly for
> AIDS Patients.
>
> These combined efforts have produced a number of favourable outcomes.
> Twelve million condoms were sold last year, 80 to 90 percent of which
> were used for HIV and STD prevention. Consistent condom use in
> brothels increased from 42 percent to 78 percent between 1997 and
> 1999, accompanied by declines in a range of STIs among sex workers,
> who now receive correct treatment for these infections. HIV prevalence
> among sex workers under age 20 declined in 1999. These data offer
> glimmers of hope that another national response is having a
> substantial impact on HIV transmission.
>
> Antenatal HIV surveillance data have been collected in South Africa
> since 1990, and indicate that HIV prevalence in pregnant women rose
> steadily until it reached 23 percent in 1998. However, there was no
> significant change in prevalence between 1998 and 1999. This slow down
> in prevalence change was due to very different trends in younger and
> older women. Teenage prevalence declined from 21 percent to 18
> percent, prevalence in women in their twenties remained unchanged at
> 27 percent, whereas trends in those aged 30 and over rose from 17
> percent to 20 percent. The decline in teenage prevalence occurred in
> most provinces, with the exception of West Cape (a low prevalence
> province) and North West and Free State. Age at first birth rose
> between 1998 and 1999, suggesting that the decline in HIV prevalence
> was very
>
> (continued on next page)

likely due to an increase in age at first sex among teenagers. Although
this is an

encouraging trend it might not lead to a sustained decline in HIV
prevalence, unless it is

followed by behavior change at older ages.

> ![](media/image2.wmf){width="4.345138888888889in"
> height="2.801388888888889in"}

**How reliable are antenatal clinic sentinel surveillance data?**

Data on HIV prevalence are among the most complete disease-specific data
available in the world. And countries in sub-Saharan Africa have some of
the most complete sentinel surveillance programs. In the absence of
widely available information from general population samples, the most
widely used method of estimating general population HIV prevalence
utilizes data on sentinel surveillance in antenatal clinics.

Despite this practice, HIV seroprevalence based on antenatal clinic data
may likely be a biased estimate of prevalence in the population. Not all
pregnant women attend antenatal clinics, and attendance will vary with
age, locality, education level, parity, ethnicity and religion\--factors
also likely associated with HIV status. Data from pregnant women only
provide information about those sexually active and tend to
over-estimate the prevalence of HIV in the community, particularly in
the youngest age groups. On the other hand, these data only pertain to
fertile women, and HIV is associated with reduced fertility. These
biases might lead one to question the use of data on pregnant women as a
proxy for the general population. However, several studies have shown
that HIV prevalence among antenatal clinic attendees still gives a
reasonable overall estimate of HIV prevalence in the general adult
population, although they tended to underestimate HIV prevalence among
women and overestimate HIV prevalence among men. As a result of these
concerns, there is a continuing interest in research comparing HIV
infection in pregnant women and in the general population.

A new study, using identical methods in each site, has compared HIV
prevalence measured in random samples of adults in the community with
that measured in sentinel surveillance in antenatal clinics in Yaoundé
(Cameroon), Kisumu (Kenya), and Ndola (Zambia). In Yaoundé and Ndola,
the HIV prevalence in pregnant women was lower than that in women in the
population, overall, and for age groups over 20. In those under 20 in
Yaoundé, HIV prevalence was higher in pregnant women than in the
population. In Ndola the overestimate in young women was only seen up to
age 18; thereafter HIV prevalence in pregnant women was lower than that
in women in the population. In contrast, in Kisumu the HIV prevalence in
pregnant women was similar to that in women in the population at all
ages. The age-standardized HIV prevalence in pregnant women was similar
to that in the combined male and female population aged 15-40 in Yaoundé
and Ndola, but overestimated in Kisumu (see figure). These results,
together with other studies, suggest that, in a generalized epidemic
where the predominant mode of transmission is heterosexual, HIV
prevalence data among pregnant women are a reasonable estimate of
overall (male and female) HIV prevalence in the population, and are
unlikely to overestimate HIV prevalence in women except in the youngest
age

group.

![](media/image8.wmf)

**Epidemics in Russia and the other Newly Independent States, China and
Vietnam: opportunities for focused prevention among injecting drug users
and sex workers**

In the countries of the former Soviet Union, as well as in China and
Vietnam, the HIV epidemics continue to be heavily concentrated in IDU.
Russia and many of the Newly Independent States have seen rapid growth
of HIV among injectors in the last 3 or 4 years. In both China and
Vietnam, over 60 percent of detected HIV infections have been among IDU.
Yet, prevalence among other population groups has remained comparatively
low so far. At the same time, large epidemics of other STIs have been
reported from these countries. Between 200,000 and 400,000 new cases of
syphilis are reported annually from Russia alone. China has seen a
steady growth of STIs over the last several years. HIV prevalence among
sex workers in southern Vietnam continues to grow, while studies of
street sex workers have found many now injecting drugs. These data raise
the possibility of major sexual epidemics that may bootstrap off of or
run concurrently with the injecting drug epidemics.

Epidemics of this type are particularly sensitive to early and focused
prevention efforts. Because the epidemic is concentrated in a limited
number of smaller populations, efforts that work with the communities of
IDU and with sex workers and their clients to reduce both their
injecting and sexual risk can be particularly effective in slowing the
spread of HIV to the general population.

However, as has been the case in many countries of the world, the major
barriers to effective prevention remain in the policy arena. HIV
prevention among marginalized groups such as IDUs and sex workers can
only succeed in an environment that is conducive to the adoption of safe
injection and safe sex behavior. Yet, IDU and sex workers face ongoing
criminal sanctions in many of these places. This makes it difficult to
work with the communities of drug users and sex workers and often keeps
them from accessing prevention programs for fear of identification or
arrest. Furthermore, public policies often prevent the distribution of
clean needles or the possession of clean injecting equipment or condoms.
For example, in other countries the police will often arrest those
carrying injecting equipment. In other places, police will use
possession of a condom as presumptive evidence of illegal sex work. Such
policies discourage safer behavior among both injectors and sex workers.
These public policies make it difficult or impossible for many injectors
and sex workers to protect themselves.

The present epidemiological situation calls for an urgent coordinated
response, before the window of opportunity to prevent a further spread
from drug users and sex workers into the general population closes.
Together with drug supply and demand reduction to reduce the number of
IDUs exposed to HIV, harm reduction approaches, which international
experience has shown to be effective to prevent HIV transmission, need
to be adopted and operationalized. Similarly programs for sex workers
and clients need to be expanded and strengthened to ensure that they
have the coverage needed to contain sexual transmission. Approaches
focused on greatly increasing condom use in commercial sex have been
effective in radically slowing HIV transmission in Thailand and now
appear to be showing results in Cambodia.

These efforts need to be scaled up as a matter of urgency. MAP therefore
calls upon all government sector in the countries concerned, including
health, justice and internal affairs, as well as NGOs to join in a
collaborative effort to establish effective HIV prevention programs that
reach the majority of injecting drug users and sex workers in their
countries.

> **BOX: HIV/AIDS in Nigeria -- the fourth largest number of infections
> in the world**
>
> Surveillance is a crucial component of HIV/AIDS prevention and control
> in Nigeria. So, far four sentinel surveys have been successfully
> conducted among different sentinel groups in Nigeria: antenatal clinic
> women (ANC), STI patients, pulmonary tuberculosis (PTB) patients, long
> distant transport workers, and female sex workers. The last sentinel
> survey was carried out among ANC in 1999.
>
> HIV prevalence in Nigeria has increased from 1.8 percent in 1992 to
> 5.4 percent in 1999 among ANC women. However, some hot spots have been
> found to have prevalence of up to 21 percent. The age group mostly
> affected is 20-24 years (8.1 percent). Rates were substantially higher
> in some high risk groups such as female sex workers (34.2 percent).
> HIV prevalence among blood donors has reached an alarming
>
> 11.0 percent, probably due to the lack of a national blood transfusion
> service in the country. It is hoped that the National Blood
> Transfusion policy, having just been launched, will have an impact on
> the safety of the blood supply.
>
> Based on results of sentinel surveillance, the estimated number of
> adults and children living with HIV/AIDS in Nigeria is 2.7 million at
> the end 1999, the fourth largest number of infections in a country in
> the world.
>
> Due to the level of the current epidemic and its dynamics, it has been
> recommended that HIV sero-prevalence surveys among ANC be conducted on
> an annual basis. HIV/AIDS sero-prevalence surveillance and behavioral
> surveillance among high risk populations is planned in 12 sentinel
> sites. The results of these surveys will provide a better picture of
> the dynamics and determinants of HIV spread in the country.
>
> There is at the moment strong commitment by the Government to
> implement a multisectoral strategy with participation of all
> development partners to see how the epidemic can be controlled in the
> country. This has culminated in the inauguration of the Presidential
> committee on AIDS and the National Action Committee on AIDS to
> coordinate the implementation of this strategy.

HIV/AIDS in Industrialized Countries: Have We Done Enough?

The HIV epidemics in most industrialized countries are concentrated in
specific high-risk populations, primarily MSM and IDU. The epidemics in
these populations are evolving at different speeds in each country, and
in some, HIV is beginning to affect new population groups. Although
there are differences in the specific aspects of these changes between
countries, the major trends are common to many industrialized countries
and are described in this section.

#### Reduced morbidity and mortality due to improved treatments

The overwhelming good news comes from improved regimens for treatment.
The more effective Highly Active Anti-Retroviral Therapies (HAART)
available in industrialized countries since 1995/1996 have prevented or
delayed progression to AIDS and death in those treated. The resulting
improved survival has led to decreases in annual AIDS incidence and in
AIDS deaths since 1995 in industrialized countries, and data from the
United Kingdom are shown as an example in the following figure.

![](media/image2.wmf)

However, in the last two years there has been no further reduction in
AIDS cases and deaths in many countries, as exemplified for the UK in
the figure above. This is probably due to treatment intolerance, drug
resistance, and diagnosis of HIV/AIDS late in the course of disease
progression. Many newly diagnosed AIDS cases had not been tested HIV
positive prior to AIDS diagnosis. These individuals have had little or
no opportunity for treatment to halt progression to AIDS. Also, there
are a number of people living with HIV/AIDS who refuse to take
anti-retroviral treatments and those who are exhausted from taking large
amounts of drugs every day.

Another benefit of treatment seen in most industrialized countries is
reduced mother-to-child transmission of HIV. For example, the dramatic
change in perinatal AIDS in the USA during the 1990s is shown in the
following figure. This has followed the rapid implementation of the use
of zidovudine to prevent perinatal transmission and, more recently,
improved treatments for infected children, delaying the onset of AIDS
defining diseases in those children who were perinatally infected. Most
perinatal infections now occur in women with no antenatal care or in
whom HIV has not been diagnosed.

![](media/image2.wmf)

New treatments have not only improved survival, but also the quality of
life. This is demonstrated by a change in the pattern of care for
HIV-infected individuals. Decreased inpatient care (less hospitalization
for opportunistic infections) has occurred with a shift to less invasive
outpatient care. Outpatient care is now needed to monitor the efficacy
of therapy, to assess side effects, and to evaluate HIV infected persons
who are not yet on treatment in order to determine the optimum time to
commence therapy. While these new therapies have resulted in an overall
increase in treatment costs, there have been clear benefits in terms of
reduced hospital costs and improved quality of life.

Despite the above, there is a critical need to develop simpler drug
regimens, improved drug tolerance and ensure that all affected groups
can take advantage of these new treatments. Not all groups benefit
equally from the new treatments. For example, in blacks and women in the
U.S. there has been less reduction in AIDS incidence with the
therapeutic advances than in white MSM. In Canada, preliminary data show
that, at least in some sites, relatively few IDUs have been started on
anti-retroviral treatment within one year of being deemed medically
eligible.

To take advantage of the benefits of the new treatments, HIV infection
must first be diagnosed. However, data from several industrialized
countries show that up to one third of HIV infections are undiagnosed.
To bring treatment benefits to these individuals, industrialized
countries need to continue to improve their voluntary counseling and
testing programs for HIV.

Increasing numbers of people living with HIV/AIDS in most industrialized
countries

The encouraging news with respect to treatment is tempered by the fact
that there are still a considerable number of new HIV diagnoses each
year in industrialized countries and the numbers have been rather stable
after initial decreases in the mid and late 1980s.

Improved survival and reduced mortality has resulted in an increased
prevalence of people living with HIV in most industrialized countries.
For example, in England and Wales, the number of individuals living with
diagnosed HIV infection has increased about 13 percent per annum each
year since 1996. In Canada, the total number of prevalent infections
(diagnosed and undiagnosed) is estimated to have increased from 40,000
infections at the end of 1996 to about 49,000 at the end of 1999. This
will have a significant impact on the burden of known disease for costs
of treatment, care, and support.

#### Risk behaviors on the rise

In industrialized countries, there is now increasing evidence that in
some populations, reductions in risk behavior over the last decade are
reversing. For example, in England and Wales, the proportion of
injectors reporting sharing of needles and syringes has increased by
over 30 percent since 1997. In Canada, the proportion of IDUs who report
sharing of injecting equipment in the past six months has remained
steady at around 40 percent, despite extensive interventions that
include widespread availability of free needles.

Furthermore, sexual risk behavior also shows signs of worsening. Between
1995 and 1998 in England, there was a 25 percent rise in reported cases
of gonorrhea. Surveys in San Francisco, USA, have shown an increase
since 1995 in the proportion of MSM who reported unprotected anal sex in
the past six months, and late breaking data suggest increasing incidence
in selected urban sites. There have also been recent outbreaks of
syphilis reported in Seattle, USA, (among MSM), Vancouver, Canada (among
sex workers), and in some urban areas of England (among MSM).

These developments may be the result of a false sense of security
following the perception that HIV is now a "normal" treatable disease.
It might also be the result of a general fatigue in continuing with safe
behaviors. Whatever the reasons, such trends are alarming and show the
risks of complacency.

#### Vulnerable populations increasingly affected

Although the HIV/AIDS epidemic in most industrialized countries is still
primarily concentrated among the recognized high-risk groups of MSM and
IDUs, there are some important trends occurring in risk group patterns.
There is now an increasing HIV/AIDS problem among ethnic minorities. In
England and Wales, infections among heterosexuals are disproportionately
high among black Africans who form only 0.7 percent of the population
and yet comprise over half of the prevalent diagnosed HIV infections in
this category. Similarly in the USA, population-based AIDS incidence
rates among blacks are much greater than among whites (eight times
greater for men and 21 times greater for women).

Another pattern of change seen in industrialized countries is the slow
but steady increase in HIV and AIDS diagnoses attributed to heterosexual
transmission. Indeed, most industrialized countries are also seeing
increasing HIV/AIDS among women. Although these increases have not been
as dramatic as in many developing countries, they serve to reinforce
that the HIV epidemic in these countries is not confined to the MSM and
IDU risk groups.

#### Challenges for the future

Industrialized countries have not seen the generalized HIV epidemics
that are present in many African countries. However, HIV remains an
important issue and in spite of treatment advances and extensive
interventions, significant numbers of new infections occur every year.

The changes that have been observed in many industrialized countries
illustrate the need to supplement HIV/AIDS case reporting and targeted
epidemiologic studies with surveillance of risk behaviors focussed on
both those at risk for HIV and those already infected with HIV,
including information on HIV testing behavior. Improved methods are also
needed to assess HIV incidence.

In addition, systems must be developed to monitor the access to and
utilization of care by infected individuals, regardless of risk
category, race, or socioeconomic status. A necessary component of this
is the availability of voluntary counseling and testing programs that
are genuinely accessible and confidential.

Despite all the successes in treatment of those infected, we should not
overlook the constant increasing number of people who continue to be
newly infected with HIV in industrialized countries. Given the fact that
everybody has access to information and to simple means to avoid
infection, such as condoms, every infection that happens is one to many.

> **BOX: Ethnicity and public health data**
>
> There has been considerable debate internationally about the use of
> ethnicity as a classifying variable in public health data. Progress in
> civil and human rights has led to the conclusion that ethnicity itself
> has little or no relevance to societal issues such as disease
> distribution, educational potential or life achievements, but that
> societal disparities reflect persisting socioeconomic inequalities.
> Other variables such as socioeconomic status and country or region of
> origin can be equally or more relevant in risk factor analyses. As a
> consequence, documenting ethnicity in descriptive epidemiology and
> using it as a stratifying variable are controversial. Compounding the
> debate is the difficulty of defining race and ethnicity, concepts
> which carry different meanings in different contexts. For most
> applications, classification of ethnicity is limited by the categories
> used in the national census, but is self-defined by the persons
> enumerated. Even this approach is handicapped by lack of consistency
> over time, and thus the definition of ethnicity may be imprecise.
> Public health data in the United States
>
> (continued on next page)
>
> have traditionally included information on ethnicity as a descriptive
> characteristic almost as essential as age and sex. In contrast, some
> countries such as France have considered this inappropriate so that
> virtually no ethnicity-specific data are available there. In this
> brief commentary we discuss advantages and disadvantages of these
> opposing views.
>
> A Utopian view is that public health data are objective, have no moral
> value, and so are beyond such political discussions. The history of
> HIV/AIDS surveillance illustrates the complexity of public health work
> on diseases that attract widespread societal attention and concern.
> Arguments in favor of collecting ethnicity data are that such
> information gives more complete insight into the epidemiology of HIV,
> and helps to identify relevant risk factors, and vulnerable population
> groups in need of interventions. Knowing the detailed epidemiology of
> a disease enables appropriate targeting and evaluation of
> interventions. Tailoring interventions to specific groups in need
> means that public health actions are not only more effective but also
> more culturally appropriate.
>
> Mother-to-child transmission of HIV in England and Wales offers an
> example of the need for data on ethnicity. Because the majority of
> heterosexuals with HIV in this part of the United Kingdom are persons
> from sub-Saharan Africa, the overwhelming majority of children born to
> HIV-infected women are Black Africans (the census category used in
> UK). The United Kingdom lagged behind other countries in implementing
> antenatal screening and prevention for pregnant women, so that
> perinatal transmission of HIV continued at a higher rate than in other
> European countries. However, this was a problem selectively affecting
> African women, whose children suffered high rates of this lethal but
> preventable infection. Appropriate use of surveillance data could have
> led to earlier reduction of pediatric AIDS in African children. Other
> examples of the utility of ethnicity-specific data include syphilis in
> the United States, and tuberculosis in the United Kingdom. Syphilis in
> the United States is heavily concentrated in the African American
> community; efforts at elimination of syphilis, a national objective
> and achievable goal, have to take account of the epidemiology of the
> infection to succeed. Finally, there is good evidence that
> tuberculosis increased during the 1990s in Black Africans in the
> United Kingdom, partly in association with HIV infection. Targeting of
> tuberculosis prevention did not occur in a timely fashion because lack
> of routine data on tuberculosis incidence by ethnicity prevented the
> disparities in tuberculosis incidence from being recognized.
>
> However, serious concerns exist in relation to ethnicity data. Stigma
> and discrimination can very easily result from such information being
> used inappropriately, especially for sensitive diseases such as
> HIV/AIDS, tuberculosis, sexually transmitted infections, etc. Such
> data can reinforce beliefs that immigrants and foreigners are the root
> cause of such infections, and lead to discriminatory and ineffective
> responses such as recommendations to restrict the movement of certain
> persons, compulsory HIV testing, etc.
>
> On balance, MAP participants believed that, in countries where there
> is assurance that human rights will be protected, the benefits of
> collecting ethnicity data outweighed the disadvantages, but that great
> caution is needed in presenting, disseminating, and using these data.
> There should be guarantees that the recording of ethnicity, country of
> origin, and other personal data would lead to interventions for the
> groups identified. In countries where there is no tradition of human
> rights protection and/or no organized civil society, and where ethnic
> tension exists, such data collection cannot be recommended because of
> potentially severe adverse consequences. A neglected topic of
> discussion internationally is what limits should be set and how to set
> them, on non-public health uses of public health data that are
> collected confidentially (e.g. use of surveillance data by law
> enforcement agencies).

# **Behavioral Surveillance is not Enough**

#### What is behavioral surveillance?

Behavioral data collection is an integral part of 2^nd^ generation
surveillance for HIV. Behavioral data help in determining where HIV and
STI data should be collected to monitor the epidemic, help to validate
the biological data collected, and assist in interpreting the trends
seen in the epidemiological data. But as part of the overall system of
responding to the epidemic, behavioral data collection is also essential
to planning and evaluating prevention programs, directing prevention
resources to the communities of greatest need, and identifying
continuing risk behaviors and populations.

Behavioral surveillance surveys (BSS) are one of the most important
methodologies for behavioral data collection developed in the last
decade. They are considered to be an essential part of 2^nd^ generation
surveillance systems at any stage of the epidemic (see *Behavioral Data
Collection Needs of National Programs* and *Guidelines for Second
Generation Surveillance*). In a behavioral surveillance system, repeated
surveys are done in a limited number of populations selected for their
relevance to the spread of HIV in the country. Using rapid assessment
methodologies and mapping techniques, a sample frame is designed to
select as representative a sample of these important populations as is
possible. A sample size sufficient to detect a specific level of
behavior change is then chosen and a small set of key behavioral
indicators is gathered from this group at regular intervals (usually on
an annual basis). These behavioral indicators are then rapidly analyzed
and disseminated to those who can act on the information including
program managers, partners in responding to the epidemic, and, most
importantly, the members of the communities from which the data were
collected. (For more details, see *Behavioral Surveillance Surveys:
Guidelines for Repeated Behavioral Surveys in Population at Risk of
HIV*)

The recognition that behavioral surveillance is important has grown and
most national programs have a strong interest in implementing some form
of it. BSS has become "trendy." However, some major concerns have arisen
among the members of the MAP network about the use of behavioral
surveillance methodologies:

-   *People often "compromise" in implementing the BSS methodology*. For
    example, they may accept an easy convenience sample in one or two
    locations for a marginalized population rather than carefully
    mapping out risk behaviors and trying to select representative
    samples of these important at-risk populations. This may occur
    because they don't know how to access the most critical marginalized
    populations or because they are concerned about the higher cost of
    applying the behavioral surveillance techniques carefully.

-   *They expect more from behavioral surveillance than it can deliver*.
    BSS is specifically intended to track a *limited* number of
    *important* behavioral factors in *relevant* populations. It cannot
    answer all the questions that need to be answered in formulating,
    directing, implementing, and evaluating effective prevention
    efforts. However, a lack of understanding of the strengths and
    limitations of different behavioral approaches leads to an
    over-reliance on BSS to answer questions it is not capable of
    answering.

-   *Other important behavioral data collection techniques are
    underutilized*. Few national program staff are behavioral
    scientists. As such, they frequently lack a detailed understanding
    of the strengths and limitations of different behavioral data
    collection approaches. Because they expect too much of behavioral
    surveillance, they fail to apply the other techniques which are so
    essential to guiding the national response effectively.

#### Advantages of doing "rigorous" behavioral surveillance

Good behavioral research takes time and effort. While great attention is
often paid to the details of serological data collection, behavioral
data collection is frequently done with far less care and attention.
Sometimes this is due to mistaken assumptions about the "ease" of
behavioral data collection. Sometimes it is because one cannot
successfully access the relevant populations. Often it is due to the
lack of understanding of different behavioral data collection
methodologies and approaches. And other times it is due to unwillingness
to involve experienced behavioral scientists in the process or to obtain
the technical support needed to do a good job.

While these concerns apply to all forms of behavioral data collection,
they are particularly critical when conducting behavioral surveillance.
Developing a behavioral surveillance system is a process requiring
careful attention at each step: 1) determining which populations to
include in behavioral surveillance and the sample sizes required in
each; 2) building trusting relationships with the communities to be
surveyed; 3) mapping the risk territory so that the sample frame
maximizes the representativeness of the sample; 4) designing and
ensuring the local relevance and acceptability of the instruments; 5)
training and monitoring the interviewers; 6) collecting the data and
ensuring quality control in the field; and 7) analyzing and
disseminating the data.

Sometimes researchers cut corners at various stages of this process. For
example, because they haven't worked closely with marginalized
communities who are often at-risk, they may not take the time to build
support for the process within the communities, producing a lack of
cooperation. Instead of mapping, they may just take the one or two
locally known locations where members of the community meet, a
convenience sample. They don't obtain a representative sample. Thus they
remain uncertain that their data really represent what is happening in a
specific at-risk population.

Implementing behavioral surveillance requires careful attention at each
of these stages. But it pays major benefits. The data collected will
accurately reflect behavioral trends in the selected population as a
whole, rather than that of a small "convenience" sample. This makes it
more meaningful for monitoring behavior change and evaluating the effect
of combined prevention efforts in the surveyed populations. For those
with limited access to at-risk populations, learning to access and
building trust in the communities to be surveyed will open the doors for
later prevention efforts. The mapping will provide expanded knowledge of
the extent and forms of risk behavior, which will inform the targeting
and implementation of prevention programs. While the cost will be
somewhat higher, the benefits paid will more than offset those costs.

#### What behavioral surveillance can and cannot deliver

Even when a good behavioral surveillance system is implemented, it is
not enough to provide all the behavioral information a national program
needs.

Behavioral surveillance can fill a number of important needs:

-   *A sustained focus on relevant behaviors*. Behavioral surveillance
    helps to keep the attention on the most relevant behaviors driving
    the growth of the epidemic. Because it is repeated periodically,
    this focus is sustained over time.

-   *Trends over time in key behavioral indicators*. The most important
    behaviors such as condom use, risk behavior, or number of partners,
    in the populations selected for surveys can be tracked to determine
    if changes are occurring.

-   *Immediate effects of prevention efforts.* BSS provides information
    on whether the combined prevention efforts in the surveyed community
    are having an impact on those behaviors driving the epidemic.

-   *Understanding of HIV and STI epidemiological trends*. BSS helps to
    determine if epidemiological trends in serosurveillance populations
    are related to observed behavior changes.

But there are also many types of information that behavioral
surveillance cannot provide and should not be asked to provide:

-   *Contextual understanding of sexuality and local risk behaviors*.
    Understanding the multiple complex factors that influence risk
    behavior is not really possible in a short quantitative
    questionnaire of the type used in behavioral surveillance.

-   *Why?* BSS cannot answer why people continue to engage in risk
    behavior. Behavioral surveillance can point to those behaviors that
    are particularly resistant to change, but the system itself cannot
    answer the very important question of why they continue.

-   *The distribution of and level of risk in the overall population*.
    Behavioral surveillance focuses on specific at-risk populations. The
    act of identifying these populations initially, and determining
    *who* is at-risk in the larger "general" population is not possible
    with the types of focused surveys in specific populations used in
    BSS.

-   *The detailed information needed to design specific prevention
    programs*. Designing an effective prevention program for a given
    community requires far more information than can be gathered in
    behavioral surveillance surveys. Each new prevention effort requires
    a careful evaluation of contextual, demographic, social, access, and
    other issues which are better obtained by working closely with
    members of the target communities using qualitative techniques.

#### The role of other behavioral data collection techniques

But that does not mean that these questions must go unanswered. *Instead
national programs need to supplement behavioral surveillance with other
forms of behavioral data assessment*. A brief summary of the types of
information programs might need and the behavioral assessment
methodologies that can supply this information is given in the box
below.

###### BOX: Behavioral assessment techniques

+---------------------------------+------------------------------------+
| ***Information needed***        | ***Behavioral assessment           |
|                                 | techniques***                      |
+---------------------------------+------------------------------------+
| Levels of risk in the general   | Population/Household based surveys |
| population,                     | in the general population.         |
|                                 |                                    |
| demographic, social and         |                                    |
| economic                        |                                    |
|                                 |                                    |
| correlates of higher risk.      |                                    |
+---------------------------------+------------------------------------+
| Locations where risk behavior   | Social and geographic mapping,     |
| occurs and                      | rapid assessment methodologies.    |
|                                 |                                    |
| size of important at-risk       |                                    |
| populations.                    |                                    |
+---------------------------------+------------------------------------+
| Contextual understanding of     | Qualitative approaches including   |
| risk                            | focus                              |
|                                 |                                    |
| behaviors and sexuality.        | groups, in-depth interviews, key-  |
| Understanding                   |                                    |
|                                 | informant interviews.              |
| why risk behaviors do and don't |                                    |
|                                 |                                    |
| change.                         |                                    |
+---------------------------------+------------------------------------+
| Detailed understanding of       | Qualitative approaches including   |
| communities                     | market                             |
|                                 |                                    |
| and risk behaviors to design    | research, focus groups, in-depth   |
| prevention                      |                                    |
|                                 | interviews.                        |
| programs                        |                                    |
+---------------------------------+------------------------------------+
| Evaluation of specific          | Qualitative and quantitative       |
| prevention efforts.             | techniques                         |
|                                 |                                    |
|                                 | conducted in the project-specific  |
|                                 | target                             |
|                                 |                                    |
|                                 | population.                        |
+---------------------------------+------------------------------------+
| Impact of all prevention        | Behavioral surveillance.           |
| efforts in key                  |                                    |
|                                 |                                    |
| populations at community level. |                                    |
+---------------------------------+------------------------------------+
| Trends in risk behavior in key  | Behavioral surveillance.           |
|                                 |                                    |
| populations.                    |                                    |
+---------------------------------+------------------------------------+

In short, *behavioral surveillance is NOT enough* and those responsible
for national programs should make better use of other behavioral data
collection techniques to guide their efforts. The MAP Network recommends
the following:

-   Countries should expand the involvement of local behavioral
    scientists in the development of national behavioral data collection
    systems.

-   National behavioral data collection systems should use a combination
    of behavioral assessment techniques depending upon the type of
    information they need for their programs.

-   Programs should be as rigorous as possible in applying behavioral
    surveillance techniques. This will not only increase the quality of
    the data, but will open the doors for prevention efforts in
    important populations.

-   Programs should determine the gaps in knowledge of behaviors and
    determinants of risk, and then, with a careful consideration of what
    different behavioral data collection techniques can do, apply the
    appropriate technique to gather that information.

**Monitoring the Cost of Care for HIV/AIDS**

Collecting reasonably accurate and representative data in a periodic
fashion on the cost of care for children and adults with HIV/AIDS is
neither highly complex nor very expensive. In fact, the benefits in
improved allocation and management of health resources would likely
result in cost savings.

There are four major areas of decision-making that could benefit from
the availability of such data:

i.  ***Decisions about which prevention interventions to fund***. Since
    averting future treatment costs is one of the important benefits of
    preventing new HIV infections, estimating those costs can inform
    prevention decisions. Although averting future costs of care is an
    important benefit of prevention programs, it is obviously not the
    most important benefit -- that of averting the illness, death,
    suffering, orphans and impoverishment caused by the epidemic.
    Government decisions should consider all averted treatment costs,
    regardless of who pays for them, although the health ministry may be
    especially interested in averted costs for the government health
    care system. Private-sector decisions about prevention also depend
    upon averted future treatment costs.

ii. ***Decisions about which package of HIV/AIDS care services should be
    funded by the government health care system*.** These decisions
    could be informed by data on the likely costs and benefits
    associated with different packages of care services. Because of the
    heterogeneity of services currently available in most countries,
    information about the cost of providing different services is likely
    to already be available locally. Where cost information about
    different packages is not available locally, or is likely to change
    if implemented on a larger scale, then simple cost modeling can
    provide valuable additional information.

iii. ***Program decisions, such as affordability, planning and
     forecasting services.*** In any country with a significant
     epidemic, the decision about which package of care to fund is one
     that has major financial implications, regardless of whether the
     package is more or less cost effective than those funded for other
     diseases. By combining micro-level costing data with
     epidemiological data and projections of the number of patients who
     will need care, planners will have an indication of the resources
     needed to fund the program in the short- to medium term.

iv. ***Management decisions aimed at reducing inefficiency.*** One of
    the best ways to identify inefficient provision of services for
    people with HIV/AIDS is by collecting data on how the cost of care
    varies among institutions. This is especially useful when the cost
    data are associated with quality of care indicators.

Although there are some differences in the data needs for each of the
four areas above, all fundamentally require results of micro-costing
studies that collect cost data for individual patients. The evaluation
of cost-effectiveness of prevention interventions \[**i.**\] requires
estimates of the average cost savings associated with averted treatment
per case. If interventions are targeted to specific sub-populations
(such as the workforce for a particular firm) then
sub-population-specific cost estimates may be desirable, but such
sub-population-specific cost estimates can be seen as a second-level
priority.

However, it is essential that the cost estimates capture the full
expenditure for health care. These must include costs borne by the
patient/family, those borne by insurers/employers, and those borne by
the government. They should also include a breakdown of the cost of
services obtained from the traditional/alternative sector, from the
range of private providers and from the public sector -- to the extent
that any of these represent an important proportion of total costs.

Comparative data on the cost of different packages of services
\[**ii.**\] can be collected as part of the above described
micro-costing, provided that a spectrum of packages are offered in
different health systems/services being surveyed. These estimates will
likely need to be adjusted for use in decision-making by government
health services because of differences in salary and procurement costs
that likely would exist between small-scale private provision of a
package of services and large-scale public provision of the same
package. This latter type of modeling/adjustment would need to be
tailored to the specific policy questions under consideration at any
particular time.

In countries considering the introduction or augmentation of ARV or
prophylaxis against opportunistic infections (OIs), then the cost
analysis must consider not only the additional costs of the new therapy,
but also the costs averted or postponed because OIs are averted or
postponed. A first step in this direction has recently been undertaken
in Brazil, where an estimate was produced of the hospitalization and
drug costs averted in one year as a result of the introduction of ARVs
\[See Box on Brazil\]. Further analysis will need to consider the level
of future costs; i.e., what will ARV costs be over time in a group of
patients compared to the costs associated with OIs. To the extent that
OIs are only postponed rather than averted altogether and to the extent
that ARV therapy is continued beyond the expected life span in untreated
patients, then the cost ratio \[cost of ARV / cost savings of averted
OIs\] will rise as the analysis is extended in time.

This discussion is limited to the net cost of different packages of care
("net" cost is the cost of providing the intervention minus the cost
savings associated with prevented illness). More difficult/complex
issues entail how to value the effectiveness/benefits of the range of
care alternatives.

Use of micro-costing data to estimate current and future affordability
of service packages and to plan for financing and organization of the
delivery of the planned services \[**iii.**\] requires examination of
the micro-cost data described above, albeit limited to the health system
doing the planning. It also requires health system-specific
epidemiological estimates and projections. These epidemiological data
should already be available at the national level. Health
system-specific data for many countries are simply the proportion of
people with care needs who use government health services. In some
countries, particularly in many Latin American countries, governments
have multiple health systems (e.g., different systems for employed
formal sector workers and for the poor/unemployed). Thus, the situation
is more complex because epidemiological estimates must be generated for
the different systems. Fortunately, countries with multiple systems are
typically upper-middle income or high-income countries with relatively
sophisticated epidemiological monitoring systems.

Finally, the use of cost data can be invaluable in a program to improve
the management/delivery of health services \[**iv.**\]. However, these
data must be sufficiently detailed and of sufficient sample size to
permit analysis at the level of individual facilities. The sample does
not need to be comprehensive (inclusive of all health facilities) in
order to be useful in describing the range of costs/efficiency among
facilities. However, at the local level, monitoring results will be of
relatively little use to facilities that were not included in the
survey. Similar to the use of cost data to compare the
cost-effectiveness of different care packages, comparisons of delivery
efficiency require linking cost estimates to estimates of
quality/benefit of the services. These quality/benefit indicators can be
relatively crude (such as mortality rate and average length of stay for
an indicator diagnosis) because the initial goal of the exercise is
simply to draw the attention of program managers to those facilities
where it appears that not only are costs higher, but quality is worse.

## **BOX: New model to estimate costs for prevention and care**

> An assessment of the resource needs to substantially scale up
> prevention and care programs is critical for advocacy and resource
> mobilization at global and national levels. The model that is
> presented here is a work in progress and is based on ongoing work of
> several institutions and experts, including the World Bank, UNAIDS
> Secretariat, the London School of Hygiene and Tropical Medicine, WHO,
> Options Consulting London, the National Institute of Public Health in
> Mexico, and USAID.
>
> Estimates for scaling up HIV/AIDS prevention and care activities in
> sub-Saharan Africa utilize targets for population coverage in the year
> 2005 that are ambitious, but achievable. Assumptions of target
> coverage for 2005 were made looking at successful programs. The costs
> represent the additional spending needed to bring the majority of
> countries to levels currently seen in countries with generally
> successful prevention programs, such as Uganda or Senegal. Countries
> whose programs are currently strong should, at these levels of
> spending, be able to increase the strength of their programs to
> significantly higher levels.

-   For prevention programs at least 1.5 billion US\$ are needed per
    year.

```{=html}
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-   For basic care programs at least 1.5 billion US\$ are needed per
    year. If limited access to anti-retroviral treatments is included,
    there would be the need for an additional 0.6 to 1.2 billion US\$
    per year. This assumes that the annual cost for the combination of
    ARVs per person year would equal 1,400 US\$.

> The following prevention programs components have been used in the
> calculations: youth-focused interventions, interventions focused on
> sex workers, increased public sector condom provision, condom social
> marketing, strengthening STI services, voluntary counseling and
> testing (VCT), workplace interventions, strengthening blood
> transfusion services, mother to child transmission (MTCT), mass media
> campaigns, start-up capacity development (for countries with very weak
> programs only), and surveillance, monitoring and evaluation. The
> following care programs components have been used in the calculations:
> palliative care, treatment of opportunistic Infections, HIV testing in
> treatment sites (excluding VCT centers), prophylaxis of opportunistic
> infections, service delivery cost (in- and outpatient visits), care
> for orphans, and ARV (including basic lab monitoring).Coverage and
> cost are estimated only for of the public portion of the health sector
> (no valid information exists about quality and coverage of the private
> sector for the vast majority of developing
>
> (continued on next page)

The following table presents the target care coverage for the year 2005.

  -------------------------------------------- --------------------------
  Major components of care                     Coverage of all who need
                                               care

  Palliative care                              40%

  Treatment of opp. Infections                 25%

  Prophylaxis of opp. infections               20%

  HAART                                        12%
  -------------------------------------------- --------------------------

The above cost estimates do not include resources needed to increase the
basic capacity of the health system (including the building and
upscaling of facilities) in order to achieve the scaling up to the
targets set for 2005.

# Durban MAP Symposium Participants

Chris ARCHIBALD

CANADA

Anabella ARREDONDO

CHILE

Stefano BERTOZZI

MEXICO

Tim BROWN

USA

Anne BUVE

BELGIUM

Carlos CACERES

PERU

Michel CARAEL

SWITZERLAND

Euclides CASTILHO

BRAZIL

Pedro CHEQUER

AREGENTINA

Jinkie CORBIN

USA

Kevin DECOCK

KENYA

Karl-Lorenz DEHNE

GERMANY

Barry EVANS

UNITED KINGDOM

Michael GBOUN

NIGERIA

Judith GLYNN

UNITED KINGDOM

Simon GREGSON

ZIMBABWE

Nguyen Tran HIEN

VIETNAM

A.M. Zakir HUSSAIN

BANGLADESH

Wassana IM-EM

THAILAND

Mitsuhiro KAMAKURA

JAPAN

Milly KATANA

UGANDA

Peter LAMPTEY

USA

Stefano LAZZARI

SWITZERLAND

Sophie LE COEUR

FRANCE

Geoff MANTHEY

CAMBODIA

Tobi SAIDEL

THAILAND

Mary O\'GRADY

USA

Tia PHALLA

CAMBODIA

Deborah RUGG

USA

Joseph SCHEICH

HOLLAND

Bernhard SCHWARTLÄNDER

SWITZERLAND

Karen STANECKI DE LAY

USA

Xinhua SUN

PEOPLE\'S REPUBLIC OF CHINA

Peter O. WAY

USA

Alan WHITESIDE

SOUTH AFRICA

Basia ZABA

UNITED KINGDOM

Fernando ZACARIAS

USA

Debrework ZEWDIE

USA