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In the Gloom of AIDS,
a Few Candles Are Lighted
By Kris Herbst
Media attention has been focusing on the hopeful news that the number of AIDS deaths is dropping dramatically for those who can afford potent new drug treatments. As a result, the public particularly in developed countries is beginning to perceive AIDS as just another manageable disease rather than an acute health crisis that threatens the stability of entire nations.
In this case, the popular perception couldn't be more wrong. The worldwide epidemic is accelerating, but those battling the epidemic now struggle with donor fatigue and fading public interest. More than ever, entrepreneurial approaches are needed to provide strategies that resonate with local cultures and customs, and respond to local political and economic realities.
This issue of Changemakers Journal profiles three such entrepreneurs, Hana Malinova in the Czech Republic, Jose Marmo da Silva in Brazil and Natee Teerarojjapongs in Thailand. They typify a grassroots approach to the problem that proves worthy of replicating on a large scale.
It is difficult to overstate the threat posed by H.I.V. and AIDS-the human immunodeficiency virus and the disease it causes, acquired immune deficiency syndrome. An estimated 30.6 million people throughout the world were infected with the virus at the end of 1997. This means that H.I.V. infects one in every 100 persons aged 15 to 49. "This is the most important infectious disease of this century, and this will undoubtedly be true for the 21st century," says Dr. Paul Delay, chief of the H.I.V./AIDS division at the bureau for global problems in the United States Agency for International Development.
The Awful Numbers
We have a better understanding of the epidemic today, thanks to improved collection of data and knowledge about behavior and other factors that make people vulnerable to the disease. Unfortunately, all signs indicate that the epidemic is continuing to spread at an alarming rate, notably in sub-Saharan Africa, Southeast Asia and the Indian Subcontinent. "In Africa, comparisons with the medieval bubonic plague are not misplaced," said Dr. Peter Piot, executive director of the Joint United Nations Program on H.I.V./AIDS.
In many sub-Saharan African countries, H.I.V. infection rates are doubling or even tripling infant mortality and reducing life expectancy for young adults to levels not seen since the 1960's. Botswana and Zimbabwe are the hardest hit, with infection rates of more than 25 percent of the adult population. In many urban centers like Harare, the capital of Zimbabwe, more than 35 percent of women aged 13 to 18 have the virus.
"AIDS today kills as many people as malaria, and only tuberculosis kills more people" Piot said
Some countries in Eastern Europe have seen virus infection rates rise sixfold since 1994, and recent data suggest that explosive epidemics are imminent there, in Russia and in parts of Asia. The Global AIDS Policy Coalition projects that by 2000, Asia will surpass Africa in H.I.V./AIDS cases. A sampling of statistics shows the magnitude of the crisis:
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Overview
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H.I.V./AIDS cases worldwide since the start of the epidemic
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41.3 million
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H.I.V./AIDS cases worldwide today
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30.6 million
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Total persons worldwide who have died from AIDS
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11.7 million
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Persons worldwide who died from AIDS in 1997
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2.3 million
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Persons who die from malaria each year
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2.7 million
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The Spreading Epidemic
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New H.I.V./AIDS cases worldwide in 1997
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5.8 million
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Percentage increase from 1996
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30 percent
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Projected new H.I.V./AIDS cases worldwide in 1998
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6 million
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Projected H.I.V./AIDS cases worldwide within the next decade
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100 million
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Number of countries in which the rate of H.I.V./AIDS infection has doubled during the past three years
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27
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Of Note
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Percentage of new H.I.V./AIDS cases due to heterosexual transmission
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80 percent
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Percentage of new H.I.V./AIDS cases occurring in developing countries
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90 percent
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Approximate annual price tag for combination anti-viral therapies
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$16,000
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Typical annual health budget per individual in developing countries
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$10
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Africa
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Percentage of world's population living in Africa
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13 percent
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Africa's percentage of total H.I.V./AIDS cases worldwide
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70 percent
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H.I.V./AIDS cases in sub-Saharan Africa
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21 million
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Percentage of children in the world with H.I.V infection who reside in sub-Saharan Africa
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90%
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Percentage of women in the world with H.I.V infection who reside in sub-Saharan Africa
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80%
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Percentage of pregnant women in Botswana who have H.I.V infection
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40%
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H.I.V./AIDS cases in South Africa
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3 million
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Average life expectancy in South Africa in 1998
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60 years
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Projected average life expectancy in South Africa in 2010, due, in large part, to H.I.V./AIDS
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40 years
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Asia
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H.I.V./AIDS cases in the Asia and Pacific regions
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6 million
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Continent with the highest growth rate of H.I.V./AIDS cases
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Asia
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Increase in H.I.V./AIDS infection rates in the Asia and Pacific regions since 1994
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100 percent
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H.I.V./AIDS cases in Thailand in 1992
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100,000
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H.I.V./AIDS cases in Thailand in 1998
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1 million
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Country with the largest increase of AIDS among women
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Thailand
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Uninfected children in Thailand under age 12 projected to be orphaned by AIDS in 2000
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86,000
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Country projected to have the largest number of H.I.V./AIDS cases in 2000
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India
(10 million cases)
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Brazil
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Estimated H.I.V./AIDS cases in Brazil
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580,000
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Rank of H.I.V./AIDS in Brazil as cause of death among population aged 20
to 49 years
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2nd
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Beyond the immediate impact on health, the epidemic is threatening the social and economic viability of entire societies because the cost of preventing and treating the disease is mounting into the billions of dollars. These costs ripple outwards from those afflicted with the disease to their social circle, including dependents and relatives, friends, caretakers, co-workers, employers, and eventually to society at large. The devastating effects are just becoming apparent due to the time lag between viral infection, the development of AIDS and death, which is more than ten years on average.
The developing world bears the brunt of the epidemic. Ninety percent of the six million new virus infections this year will occur in developing countries. Education and diagnosis are difficult in countries where there is limited access to the media and public health services.
The annual health budget per person in a developing country typically is less than $10, putting even simple treatments to fight infections and diminish pain out of reach. The approximately $16,000 annual price tag for combination antiviral therapies renders them irrelevant to most patients in developing countries, where virtually all those infected will die of their disease within the next three to eight years most without ever knowing they were infected.
Not Infected, but Still Victims
And the effects will stretch far into the future because young people increasingly are at risk. Forty-four percent of the new infections occur in the 10- to 24-year age group. Even those who escape infection can be profoundly affected: Some 25 million children have been orphaned by AIDS, and this number is likely to rise to 40 million in the next ten years, according to Dr. Delay.
"A child does not need to be infected by the AIDS virus to be devastated by it," notes Dr. Nils Daulaire, president and chief executive of the National Council for International Health at the Global Health Council. "The death of a mother is often a death sentence for a young child in the developing world, and it is a sentence of rootlessness, exploitation and violence for the surviving children."
Complacency is not warranted among those who do receive the new combination therapies. They are not effective for everyone, they may have debilitating side effects and they are extremely complicated to take. Furthermore, treatment- resistant strains of the virus may emerge if patients stray from their treatment regimens.
In any case, recent medical research indicates that the new treatments will not cure AIDS. It appears that the virus remains hidden in inactive cells where it can re-emerge when treatments cease. Ultimately, a vaccine is needed to control the epidemic, and leading biomedical researchers say development of such a vaccine is ten years away.
Successful treatment creates its own problems for medical authorities: Longer survival periods, coupled with continuing increases in the infection rate, rapidly increases the financial burden of AIDS-related services.
The enormous challenges posed by the AIDS epidemic call for creative and vigorous responses. Fortunately, there are examples of sustained efforts, tailored to local populations, that have made significant headway. Such interventions have helped curtail or prevent major epidemics in countries like Senegal, Philippines and Indonesia; the infection rate among sexually active adults in Senegal has stabilized at less than 2 percent.
In other countries, like Thailand, Uganda, Tanzania and Brazil, intensive programs were developed after major epidemics erupted, and they have reduced infection rates. The prevalence of H.I.V. among a sample of 21-year-old male army recruits in northern Thailand dropped by half from 12.5 percent in 1993 to less than 6.7 percent in 1997. Changes in behavior played an important role in this change. Those reporting visits to prostitutes dropped from 81 percent in 1991 to 63 percent in 1995. Those who reported not using a condom during their most recent visits dropped from 39 percent to 7.5 percent during the same period.
In Uganda, the prevalence of the virus among pregnant women in urban areas dropped 40 percent from 1990 to 1996. The decline was most pronounced in the youngest women and is associated with a delay in the first sexual intercourse, increased condom use and fewer partners. Overall, the prevalence of the virus in Uganda has dropped by about a quarter, from 13 percent of the people in 1994 to 9.5 percent in 1997, and this decline was most noticeable in those aged 19 to 25.
In areas of northern Tanzania, where prevention programs are active, the infection rate in young women has dropped by 60 percent over six years. And although AIDS is increasing among women generally in Brazil and in mid-sized cities there, it is declining in cities with populations greater than 1 million, according to a recent government study.
How Communities Can Heal Themselves
Those combating the epidemic have discovered that grassroots efforts work far better than interventions by government or multilateral agencies. "We continue to encounter gross denial at the highest levels of government," says Dr. Delay. "We have to acknowledge that the most effective response to the pandemic cannot be externally driven. It must ultimately derive from societies and communities."
"Dealing with AIDS requires addressing the dynamics of social behavior and its most difficult subset, sexual behavior," adds Dr. Daulaire. "It requires fundamental changes in attitude and behavior, towards self and others, and a de-stigmatization of those already infected with the virus. It requires a sense of hope for the future that enables difficult personal and social action. These are not issues with which the international medical community has traditionally dealt effectively."
The social entrepreneurs featured here are deeply connected to the communities they serve. By spending time on the streets, and visiting businesses and homes on a regular basis, they gain an intimate knowledge of the attitudes that determine how, and to what extent, the epidemic spreads. They cast a wide net and learn to speak the language of marginalized people, helping them to affirm that their health and self-esteem are worth preserving.
Hana Malinova in the Czech Republic, Jose Marmo da Silva in Brazil and Natee Teerarojjapongs all have a flair for the dramatic. They deploy theater, music or other elements of culture to reach their audiences. In contrast to large-scale publicity campaigns that admonish the public to avoid proscribed behaviors, they engage people on a one-to-one basis with candor, a sense of humor, an uninhibited style and an ability to listen and empathize, as well as to educate.
They are pragmatic accommodating and engaging behaviors that are otherwise stigmatized, taboo or simply not acknowledged by the mainstream. They deal with "supply side" forces like a lack of opportunities, which tends to push people into the sex industry and other unhealthy practices, and "demand side" factors that generate the desire for sexual services. Along the way, they discover new means of education and prevention.
Such methods can include providing advice for dealing with drunken customers in Thailand or promiscuous spouses in Brazil, running a women's clinic in Prague where the atmosphere is congenial and nonthreatening, or simply recognizing that the human need for joy cannot be denied and requires healthy outlets. (Malinova's operation is called "Bliss Without Risk.") If the AIDS epidemic is going to be subdued, these techniques for triggering behavioral changes will have to spread faster than the disease itself.
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