Health
By Michele Leight
As citizens of the 21st century, we are constantly bombarded by an endless ticker tape of facts, information and media hype that sometimes threatens to blow a fuse in our mental circuits. Once in a while, however, an astounding fact makes it through the smokescreen we create to protect ourselves from information overload. According to many global health and security experts, (including UNAIDS and the CIA), 100 million people will be living with HIV/AIDS by 2010. By the end of the first decade of the 21st century, our world will also inherit 40 million AIDS orphans. At present, no one has any idea who is going to take care of them. One hundred million human beings and 40 million children orphaned by an incurable but preventable disease. That is an almost incomprehensible statistic, but it is perhaps inevitable that it will soon become a reality we will all be facing. In an attempt to raise awareness for this impending catastrophe, The Asia Society (www.asiasource.org) hosted a panel discussion on May 12th, 2004 entitled "The Next AIDS Generation: Orphans in Asia and the World." The featured speakers were experts in fields related to HIV/AIDS, and Peter McDermott, Global Chief of the HIV/AIDS Section for UNICEF (www.unicef.org) arrived directly from the airport, having spent the morning in London speaking with the British Government about AIDS. The panelists included Dr. Nafis Sadik, UN Special Envoy for HIV/AIDS in Asia; Sara Sievers, Director of advocacy and programs on orphans and vulnerable children at the Association Francois-Xavier Bagnoud; Chung To, Founder and Chairperson of Chi Heng Foundation; Dr. Steven Wang, Founder and President of the China AIDS Orphan Fund (COAF); and David Gartner, Policy Director for the Global AIDS Alliance. Although it is unconventional to quote the last speaker first, David Gartner of the Global AIDS Alliance ( www.globalaidsalliance.org ) summed up the gravity of the situation: "This is quite simply the moral crisis of our time. But it's not only that, it's also a national security crisis, one that frankly gets far too little attention in a world where attention is focused elsewhere, on other issues. Colin Powell gets it. He said 'AIDS is worse than any act of terrorism or than any weapon of mass destruction.' Quite frankly, I would argue it's the biggest threat we face in the next generation. And the orphans' crisis is the sort of terrible and natural extension of the AIDS crisis. Every fourteen seconds another child becomes an orphan because of AIDS. And if you look down the road to that hundred million infected by the end of the decade you can only imagine how many millions and hundreds of millions of orphans we potentially could have in the world." The Global AIDS Alliance is a Washington-based organization dedicated to achieving a comprehensive response to the global HIV/AIDS crisis which seems for the most part to have escaped the notice of the world's wealthiest nations including the tragic plight of children orphaned by AIDS. Mr. Gartner has played a leading role in drafting The Assistance for Orphaned and Vulnerable Children in Developing Countries Act (H.R. 4061), currently before Congress. All the panelists at The Asia Society program were united for the evening in an effort to educate what must seem to them to be a pathologically inert and disinterested public as AIDS cuts down villages and communities in sub-Saharan Africa and now marches onward in China and India, two countries with the largest populations in the world.
After each speaker, I found myself picturing the written history of the 21st century. I imagined the perplexed gaze of my future grandchild as he or she brought out the history book and questioned the universal unwillingness of our generation to act to what the historian described as the most detached response by civilized mankind to a disease that is incurable and deadly, but at the same time preventable; a disease that can be passed to anyone, but which is known specifically to spread vertically to an unborn baby in the womb, during childbirth and through breast milk, unless the mother is given medication in advance. In most cases, these mothers lived below the poverty line in developing nations and did not know they were passing the deadly virus to their babies. But we did. The 20th and 21st Century history book will certainly contain proclamations of wars won and lost; wars that cost billions of dollars, killing far fewer people than were being decimated by AIDS in towns and villages on neighboring soil and in faraway countries; deaths which might have been prevented at a fraction of the cost of bombs and WMDs. Historically, it might be interpreted that we chose to look the other way from widespread and unnecessary suffering because there was no urgent problem in our own country although one million Americans live with HIV/AIDS - and because there was no territorial, financial, or political advantage to be gained by intervening. From a historical perspective, this may well be cited as one of the greatest miscalculations of our generation, because AIDS is now predicted to be one of the greatest threats to the national security of powerful nations like the United States. The historians will write that the spread of AIDS was also due to millions of promiscuous heterosexual and gay men - not just gay men - men with long term, faithful partners, because "grazing" (multiple relationships) while in committed relationships is now rated the number one cause of the rapid spread of the AIDS virus; promiscuity is the main reason why the most assiduous attempts to control the spread of the virus by health experts is being thwarted in South Africa, the country with the highest number of AIDS infections. In contrast "zero grazing" in countries like Uganda has resulted in an almost 50 percent drop in the spread of HIV/AIDS infections, which is a message imbued with hope for those who do wish to protect themselves and their families from one of the greatest scourges mankind has ever faced. Moralistic and judgmental attitudes towards those who have acquired the virus through "sexual misconduct," or drug abuse, are the chief reasons for our cumulative neglect of those who now live with the disease. No matter what spin is put on our avoidance of the subject of AIDS, it is perceived by the "moral majority" as a deserved punishment for promiscuity and excess. And, for better or worse, the moral majority has enormous clout, most everywhere in the world today. There is much to be gained and a great deal to be feared and regretted in moralistic attitudes. Both good and bad come from beliefs that penalize wrong-doers like rapists and pedophiles, but at the same time indict women who have been faithful their entire married lives but were unlucky enough to get AIDS from a promiscuous spouse - and then pass it on to their baby. History will be ruthless with us when it comes to AIDS and the unborn and newborn. For anyone who has seen the beds filled with tiny infants attached to tubes in hospitals in developing nations, sucking in air and clutching at life but dying every day, there is no reason to believe that history will spare us. We might end up branded the most callous society that ever lived. For a cost of a few dollars, mothers can receive AZT and Nevipirene prior to birth, and the infant is spared a life of suffering. However one chooses to deal with people afflicted with HIV/AIDS, it is clear that women everywhere had better watch their backs and protect themselves and their unborn children until the world wakes up to AIDS. A June 13, 2004 article in The New York Times Magazine by Helen Epstein describes the effect of widespread national commitment to ending the domination of a virus that threatens the stability of the citizens of Uganda: "In 1986 the Ugandan Ministry of Health started a vigorous H.I.V.- prevention campaign in which the slogans "Love Carefully," "Love Faithfully," and "Zero Grazing," Ugandan slang for 'Don't have sexual partners outside the home' were posted on public buildings, broadcast on radio and bellowed in speeches across the country. Religious leaders scouted the Bible and Koran for quotations about infidelity. Newspapers, theatres, singing groups and ordinary people spread the same message." Helen Epstein hit on another key factor that is vital to disarming the successful spread of HIV/AIDS: "Uganda's women's movement, one of the oldest and most dynamic in Africa, galvanized around issues of domestic abuse, rape and H.I.V. The anger of the activists, and the eloquent sorrow of women throughout the country who nursed the sick and helped neighbors cope, was a harsh reproach to promiscuous men. So was their gossip, a highly efficient method of spreading any public health message." Uganda has successfully reversed the spread of HIV/AIDS, which has resulted in a dramatic drop in new infections, especially amongst women. For nations like India, with arranged marriages and promiscuity, and a high prevalence of rape, prostitution and domestic abuse, there is hope in the dramatic turn around in AIDS infections in Uganda. Women must mobilize fast to prevent the kind of disaster we are seeing in Africa. Eighty percent of India's AIDS infections are heterosexually transmitted, and 40 percent of the total HIV/AIDS infections exist in women most of them monogamous. Besides strong national commitment and active women's groups, there is also the saving grace for millions already infected with HIV/AIDS of help from meaningful AIDS organizations and partnerships - and the commitment of many members of the press, like Elizabeth Rosenthal. At The Asia Society panel discussion on AIDS Orphans, Dr. Steven Wang and Chung To took great care to spell this out. Chung To, founder and chairperson of the Chi Heng Foundation, a charitable organization based in Hong Kong working on AIDS prevention and care, said: "I really want to thank Elizabeth Rosenthal of The New York Times because without her article," (the same article that galvanized Dr. Steven Wang into action to found the China AIDS Orphan Fund), "I think I wouldn't be able to hook up with Steven, and Steven wouldn't be able to do all the great work. I think she is here as well." Chung To then continued to give what was probably the most disturbing information of the evening: "In the AIDS epidemic landscape of China, one place called Henan stands out. During the early to mid 90s, many peasants in that area sold blood and because of the unsanitary practice, many of them got HIV. And now, ten years after that, a lot of them have died and are getting sick. In 1998, they (the government) cracked down on illegal blood collection stations and confiscated over 6,000 bags of blood. And through a random testing of them, 99 out of the 101 bags were HIV positive." In unison, a gasp of disbelief went up from the audience, most of which had no idea of China's blood selling and blood buying practices in the past, which have now been outlawed. "And today," continued Chung To, "in some of the areas we are talking about as high as 60 percent of the adult population in some villages who are HIV positive. And those are also the productive force of the village." It was shocking to discover while writing another story on the global AIDS epidemic some years ago, that these Henan farmers were so poor they could not afford the re-payments on their homes, so they sold their blood to the blood collection stations, (some of them government run), situated in the region. The needed blood products were extracted from the blood pool, and the rest was re-injected into the donors often using the same needle, because many farmers and their wives had become so weakened from continuous blood selling. Many of the donors in Henan were women, because the men needed their strength to work in labor-intensive jobs. Another discovery at The Asia Society panel discussion is that education for children is not free in China, even though it is a Communist country; this places parents devastated by AIDS and unable to work in a double-jeopardy situation. Who is going to pay the school fees while they are ill and after they die? Chung To: "People who donated blood at that time were also people in their 20s, 30s and 40s. If you are talking about 60 percent of the adults having HIV, you are also talking about 60 percent of the children being orphaned by AIDS as well." A veteran of the Chinese AIDS epidemic, Chung To put a face on the disease in his country: "I've noticed a few trends. I've been to Henan 16, 17 times over the past two years. One is that the grandparents are assuming the role of the parents after the middle generation was wiped out. These are [photos of] grandchildren living with the grandparents. They are not siblings of each other, they are cousins of each other. The grandparents had four children, all four got HIV. Two have already died and two more are dying." Photographs of families minus the middle generation illustrated Chung To's comments. In many cases, the oldest child of afflicted families, perhaps 15 or 16 years old, became the head of household, assuming all the responsibilities of dead or dying parents. "Reconstructed families" also take the place of traditional families as shown in a photograph taken by Chung To: "The man is the father of three children (one is not seen here). They got together not because they are romantically in love, but because of survival. I think we see this in Africa as well, a lot of provisional families. I admire the children a lot because they not only have to bear the physical burden of doing the housework and making dinner but also the emotional burden of helplessly seeing the deaths of their parents in front of them. Most of us do not have to deal with the passing away of our parents until we are 40 or 50 years old." Chung To gave the most moving commentary on behalf of AIDS orphans that evening: "Many people have asked me why I've chosen to work on the orphans in that area. I think there are many reasons. Orphans will affect the future social stability tremendously. If China admits it has a million people living with HIV or people with HIV or died of AIDS...we are also talking about close to a million or more children impacted by AIDS. If they cannot get an education now, if they are not being cared for, when they grow up they will be gangsters and street kids, move to big cities. Most of them are HIV negative for 60-70 years to come, therefore creating a huge force for social instability. There is also a sense of urgency because the numbers are growing quickly and there is only a narrow window of opportunity for helping them because if they have missed school for a few semesters, it is hard for them to get back'" Chung To explained the comfort it offers dying parents to know that their children will at least continue with schooling after they die: "I know I'm hopeless. I know I'm dying, but I'm very concerned about my children. If I know my children can go to school, I can die in peace," an infected parent said. Chung To expressed the implications of neglecting these orphaned children now: "Providing schooling for these children would give them daily structure but would also 'send a message to these orphans, who might have a lot of hatred in them, thinking that the world is not fair to them and that their parents died unnecessarily, that there is love and hope in the world. That someone they do not know is giving them an education and hopefully they will reciprocate when they grown up. Also, education for the next generation is a social resources investment.'" Chung To's Chi Heng Foundation and Dr. Steven Wangs "China AIDS Orphan Fund" actively seek funding that enables young orphans in China to receive an education if their parents are too ill to work or have died from HIV/AIDS. David Gartner returned to the broader issue of orphans: "So first, why is there reason for hope? Well to take the AIDS pandemic. Only a decade ago, people weren't paying any attention frankly. And it wasn't clear what could be done, to many. A couple of things have changed. One is the emergence of political will round this question, particularly around AIDS, hopefully soon around orphans. Second, the dramatic decrease in the price of medicines, which can keep people alive, dropped to a dollar a day. This didn't happen by accident, this happened through lots of hard work by activists and others. It is now as low as 37 cents under what the Clinton Foundation has negotiated with generic producers in India and elsewhere. So, for less than a dollar a day, people can be kept alive. The third reason is that there are new mechanisms out there, new models of how to respond to this crisis. One I want to talk about a bit is the Global Fund to Fight AIDS, Tuberculosis and Malaria. The reason that's so important is because it's particularly giving some attention to the crisis in China, in India, and elsewhere." The experts on the panel warned that the AIDS epidemic is still in its infancy. "Last year" said David Gartner, "the President made a path-breaking announcement at the State of the Union. Congress decided to pass legislation, and, frankly, Congress went beyond the President in its level of funding both overall and for the Global Fund." In addition to this law, two Congress people, Dana Rohrbacher, (a Conservative from California), and Betty McCollum (from the Twin Cities in Minnesota), decided that it was important to take on the AIDS orphans crisis as well. They introduced an amendment that proposed the allocation of ten percent of the proposed global AIDS funding to deal with the orphans crisis. The amendment passed, which signaled the beginning of political will around the AIDS orphans crisis. Laws are vital to changing the status quo on AIDS for millions suffering around the world, and that includes political will and leadership in the countries that are worst afflicted, not just the United States. All nations become vulnerable when millions of their citizens die a lingering death in the prime of their lives, not just developing nations. India, for example, is the only democracy in the region, with a vast population now threatened by a deadly disease. The reality is that despite the valiant efforts of global health agencies, NGOs and concerned individuals, currently the spread of the AIDS epidemic is outpacing our response to it as a global community: 40 million adults with HIV/AIDS and 13 million orphans is an extraordinary number of human beings. The panelists at The Asia Society informed us that the net result will be millions more infections and deaths and a significant increase in numbers of orphans as parents across the globe succumb to AIDS. In the first decade of the 21st century more human beings will become infected with or killed by a deadly virus than were killed by all the wars of the 20th century. The AIDS epidemic is in its infancy and Peter McDermott, Global Chief of HIV/AIDS Division, UNICEF, who had flown in from London and arrived directly from the airport warned: "The situation globally for HIV/AIDS is disastrous and people get tired of me saying that the worst is yet to come." McDermott said that sub-Saharan Africa, representing 70 percent of the grim statistics, is currently bearing the brunt of the epidemic. However, he went on to describe the early warning signals in India and China: "Globally, an HIV/AIDS pandemic in Asia will impact in a much more significant way because of the difference, between the percentage increase of one percent in India or China, and will dwarf anything that we have seen in sub-Saharan Africa." "The pandemic, in Asia as well as most other parts of the world, is young people," he said. " Of the 6,000 people currently getting infected every day, half are young people. Increasingly there is a female face, and this is particularly evident in sub-Saharan Africa but also in India." "For children, what we are seeing is that there is a greater disparity now between a child who is orphaned and a child who is orphaned because of HIV/AIDS and other poor children, in some of these crucial areas. And the evidence on the orphan generation published by UNICEF and by others shows this disparity on nutrition, healthcare, and massively on psychosocial impact," said Peter McDermott. India and China have populations of 1 billion and 1.2 billion, respectively. While the implications for India in particular are severe, Peter McDermott offered hope: "In Asia, one would hope, that the status of the health service, the status of the education service, the government's ability to provide welfare, social welfare, etc, especially in countries like India, is quite developed. The question is, can they withstand the shock of a significant additionality on their social welfare, social education systems?" McDermott also made reference to the increase in political will in Asia: "In Asia over the last few years we've had a number of successes, thanks to Nafis (Sadik) and many other colleagues, in getting global leaders in Asia the prime ministers, presidents, high personalities to come together. There has been a significant response by the Buddhist community, and that has been due to the hard work of Robert Bennoun and others. And I think that in India we are starting to see quite a successful rollout of mother-to-child programs where we can, because we have the technology, dramatically reduce infection between parent and child." Mr. McDermott said there was cause for extreme concern in the 5,000 percent increase in HIV/AIDS in Estonia, Ukraine and Russia, "where we have a severe problem." Although HIV/AIDS is predominantly transmitted through sexual intercourse without the use of protection condoms by the infected partner, intravenous drug use is "the fast track" for the virus, because it is planted right in the veins and then moves without impediment through the bloodstream, wreaking havoc in record time. This is why the virus has spread so virulently and fast in Russia, Estonia and the Ukraine. These populations have no information about the hazards of needle-sharing, and no clean needle programs to save the lives of those who know they should use them but who shoot up drugs intravenously anyway due to severe addiction, depression and despair due to lack of job prospects. Due to denial on the part of the Chinese government in the past and the practice of blood selling, HIV/AIDS has had a disastrous effect upon certain populations of rural China, which Dr. Stephen Wang, founder and President of the China AIDS Orphan's Fund drew to the attention of the audience at The Asia Society. Wang described the impact of reading a New York Times article by Elizabeth Rosenthal, entitled "AIDS Scourge in Rural China Leaves Villages of Orphans," on August 25th, 2003. "This is a section," said Mr. Wang: "200 villages of 600 families have one parent dead and another ill, often too frail to work or even rise from bed; they receive little government help; experts say the blow dealt by AIDS to villages like Donghu has been sharper and crueler than anywhere else in the world because of the unusual and efficient way the disease has spread there; in the 1990s, nearly the entire adult population of some villages was infected almost simultaneously as poor farmers flocked en masse to sell their blood at blood collection stations whose unsterile practices introduced hefty doses of HIV directly into their veins; now victims are falling ill and dying, almost in unison.' Dr. Wang brought home the misery of the child orphaned at a young age through photographs taken on a recent trip to China: "These are some pictures illustrating kids watching their parents dying. And this is a child, sitting in front of the cemetery of both parents. And those stones right here are the cemetery's housing the remains of the dead, often affected by the AIDS virus. In view of this health crisis, we decided to start the China AIDS Orphan Fund" (www.chinaaidsorphanfund.org). Steven Wang mentioned the creation of the Living Dreams in a Dying Village art/documentary exhibit in conjunction with Chung To of the Chi Heng Foundation (www.chihengfoundation.org), including winsome drawings and essays by children describing their hopes and dreams: typical titles and themes were "Doctor is treating patient" and "Tomorrow will be a much better day." With children, hope springs eternal. In describing the grass roots awareness and prevention methods used in India by the organization for which she works, the Association Francois-Xavier Bagnoud, (www.afxb.org), Sara Sievers demonstrated that even in the serious atmosphere of AIDS prevention, humor finds a place. A barber in India came up to the head of the organization and said: "'Countess, if you really want to spread the word, you need to be active in barber shops.' Now who would have thought? It turns out, that in the places where she was, the kind of discussions men have when they're getting their hair cut are the kind of discussions that probably need to have a little bit of AIDS prevention thrown in for good measure. We would never have known that from the outside, or it would have been unlikely, but this barber felt very empowered to come right up and explain what was going on, what was needed, and how to focus efforts." This became known within AFXB, (which is primarily funded by the Bill and Melinda Gates Foundation), as The Barber Intervention and it launched a whole initiative within the organization. In addition to targeting the children of sex-workers, migrant workers and truckers in India, populations especially vulnerable to contracting HIV/AIDS, AFXB also focus their efforts on fishing communities, bars, pubs and wine shops, trying to spread prevention and AIDS awareness. In an interesting alternative to traditional one-on-one counseling, AFXB have initiated a technological approach tele-counseling. This is particularly valuable in societies that are less inclined to seek AIDS awareness counseling in a public forum due to the stigma associated with the disease and the possibility of ostracization. This is no ordinary fear. A recent Wall Street Journal report on AIDS prevention efforts by the Bill and Melinda Gates Foundation in India stated that a woman had been stoned to death in a village in rural India when she admitted to being HIV-positive. As the evening drew to a close, David Gartner focused on the necessity of treatment and keeping parents alive to avoid the tragedy of increasing numbers of orphans, and the importance of education for the next generation: "One of the biggest barriers to the adoption of AIDS orphans is that nobody wants to pay the fees because public schools don't exist in much of the world. Nobody wants to pay the fees that it takes for them to go to school. So AIDS orphans are left with a double bind. They can't afford to go to school in much of the world and nobody wants to adopt them because they don't want to take on the financial burden. They are part of a broader group, mostly girls, but that's over 100 million kids who never step into school for the first day." What happens to young girls without education or job prospects in the developing world is no secret for anyone who has lived there, and one has only to imagine the tragedy ahead when millions of female orphans are added to the growing numbers of disenfranchised 'girl children,' including young sex-workers and millions of street children. Diverting for a moment to a discussion paper accompanying the Third Asia Policy Workshop and the fourth WHR Rivers Symposium held at Harvard University (May 6-8, 2004) entitled "Social Development, Social Policy and HIV/AIDS in China," co-authors Andy West and Kate Wedgewood of Save the Children UK China Program wrote: "The easiest and 'gut' response of many agencies is to rescue or save children from their perceived predicament. Such a rescue attempt without full analysis may result in children entering worse circumstances. For example, preventing children being involved in labor work has led to some having to enter exploitive work (such as sex work) in order to survive. The question of what is in the best interests of the child must be taken into account in individual cases and through broader analysis of local situations when policy and practice is being planned. The notion of duty bearers (adults responsible for the children) seeks also to look at the broader picture. For example, the development for street children, that enables them to attend school, has led in some places to poorer families 'abandoning' their children so that they are taken in by these shelters in order to access education. A better response might be to find a way of funding education that does not require families to pay fees: there is a duty on governments to realize children's rights to education." Millions of children in India, mostly girls, have never set foot inside a school. In a dark, repetitive pattern, Andy West and Kate Wedgwood also wrote: In contrast (to circumstances of HIV/AIDS related to blood selling) on the borders of China, in the north-west and south-west, where routes of transmission of HIV/AIDS have predominantly taken different forms, there are other concerns, such as the susceptibility of children to the use of drugs (taken intravenously) and the exploitation of under-18s in sex work." Nafis Sadik touched on one of the most important points of the evening: the harsh reality of acceptable male behavior in Asia and much of the developing world and the deadly implications for millions of endangered women and children: "I think we have to remember that in many of our societies, male risky behavior is condoned or even accepted and is considered macho, but it is the female behavior that is not. And many women especially in South Asia but also in Southern Africa are getting HIV infection from their spouses. And all the data, for example, in Asia, South Asia, shows that 95 percent of them have just the one partner, but the infections come from that one partner. And they have got it from somewhere else." Chung To was asked to describe the reaction of the local Chinese government by a member of the audience when he ventured into rural villages to offer help to the afflicted. For years China denied it had an AIDS problem, but the government changed its policy after numerous lead editorials in highly regarded western newspapers highlighting China's AIDS menace and the disastrous effect of the outbreak of SARS. "Two years ago they were not very welcoming," said Chung To. "You must understand that a lot of them do not want the situation exposed. This is not like Hunan, where people got HIV mainly through IV drug use or sex work, which are individual actions. Many of these peasants got HIV through giving blood, some of them through government-owned blood stations. So the government felt they were more responsible for what happened. So even the Premier and Vice Premier admitted that there was a cover-up at that time, and that there was a lot of mishandling." "But now it is getting easier," he added, "but I am still cautious....The bottom line is to help the children. To me, AIDS in Henan is like a fire. It's still burning, and my priority is to save the people out of the fire, as much as possible. Finding out who the arsonist was is not my concern. And frankly, even if we persecute arsonists and put them in jail, it's not going to help the people who are dying and the orphans who are not getting an education." Chung To described a situation where grandparents had lost 5 of their 6 children to AIDS, only one survived: "'What keeps you going?' he asked them, 'I mean it is such a disaster for your family.' And the grandparents still had to work very hard to make a living and to take care of all the grandchildren. And they said: 'The grandchildren, the future, our hope. I know all my children have died of AIDS or are dying of AIDS. I know all my children will be wiped out by AIDS, but I still have hope because I have the grandchildren.'"