Health
By Michele Leight When the President of the United States makes the global AIDS epidemic the first foreign policy issue on the agenda of his 2003 State of the Union address, and India's Prime Minister Atal Bihari Vajpayee calls for an "effective and undelayed response from all sections of society" to the rising number of Indians with H.I.V. at India's first-ever National Convention of Elected Representatives on HIV/AIDS at Vigyan Bhawan, New Delhi on July 26-27, 2003, there is hope for millions around the world who suffer daily with HIV/AIDS. The convention was organized by Oscar Fernandes, Ministry of Health and Family Welfare, the National AIDS Control Organization (NACO) and UNAIDS. The Secretary-General of the United Nations, Kofi Annan, addressed the New Delhi gathering via video message:
"As elected representatives of the world's largest democracy, you can show leadership in many ways. By making laws, by passing budgets, by deciding policies," he said, adding "All of us can draw inspiration from Mahatma Gandhi, who fought stigma and discrimination against those living with leprosy. Today, our challenge is the fight against stigma related to HIV/AIDS." More than 1000 politicians from around India, including lawmakers, senior central and state officials, AIDS workers, mayors and local leaders attended the two-day conference. "Never before, in any nation of the world, has there been such a large and committed gathering of leaders from every level of decision-making, dedicated to the common cause of fighting AIDS," said Dr. Peter Piot, Executive Director of UNAIDS and Asst. Secretary General of the United Nations, the UN's top AIDS official, who attended the convention. "Today, this National Convention takes the commitment of Indian leadership against AIDS one step further. It marks the transition to a full-scale response taking leadership to every corner of the nation, in the largest democracy in the world. The global AIDS epidemic is already the most devastating humanity has ever faced, but even so, we are in the early stages," he said. Dr. Piot offered India a positive message: "India already has the resources available to turn the epidemic back, because the most important resource is leadership. The Parliaments, legislative assemblies, governments, municipal corporations and Zilla Parishads that you collectively represent, possess the power to halt HIV in its tracks." "H.I.V./AIDS is not only a grave global challenge, it is equally a national concern," said Mr. Vajpayee, whose speech came a day after the government of India announced that the number of people in India with H.I.V., the virus that causes AIDS, had surged to 4.58 million people from 3.97 million since 2001, narrowing the gap with South Africa, which currently has the largest H.I.V.-positive population in the world at 5 million. On July 27, 2003, a glorious Sunday morning in New York, it was heartening to read "Indian Premier Urges Major Push on AIDS" in The New York Times. At last, the assault on the HIV/AIDS virus had begun at the highest level of world leadership and in the media, both crucial players in the future of the epidemic: "The media can save lives," said Dr. Piot. There has been a noticeable increase in AIDS-related editorials and programming in the media recently. In June, the Bill and Melinda Gates Foundation sponsored Rory Kennedy's "Pandemic/Facing Aids" which aired on HBO (available on HBO On Demand) featuring the toll the epidemic is taking in five very different countries, including India. In July, Senator (Dr.) Bill Frist, Senate Majority Leader, spoke candidly on PBS about his commitment to the cause of HIV/AIDS; he has visited Africa numerous times and operated on Africans with AIDS who could not afford the cost of surgery. Mr. Frist stressed the necessity of a solid healthcare infrastructure to implement the anti-retrovirals successfully in Africa and in other developing nations. ( www.pbs.org ) Bill Frist has worked tirelessly for years to facilitate the $15 billion that the President has promised to Africa, the Carribbean and Haiti over the next 5 years. Whenever he has had the President's attention, Dr. Frist, who is a firm believer in saving lives, has taken every opportunity to push forward the global AIDS agenda, as have Secretary of State Colin Powell and Condaleeza Rice. The devastation that HIV/AIDS causes without the mercy of anti-retroviral medications is a horror outside the realm of experience of those fortunate enough to live in developed nations. In President Vajpayee's India of 1.2 billion, the World Bank has predicted that there will be 35 million infected with HIV/AIDS by 2005. If this is not prevented, it will far exceed the tragedy we are now witnessing in Africa, with 25 million infected - which is hard to imagine. "Many of those being infected are from the most vulnerable people in society: the poorest, sex workers, injecting drug users, men who have sex with men but increasingly many are also are middle class youth and women whose only `risk' for HIV is sex with their husband," warns Mr. Piot. India's Premier Mr.Vajpayee said "It is obvious that political parties in our country need to pay far greater attention to issues of health and care than they do now" and he expressed regret that in India, public health issues did not normally find a place on the nation's political agenda: "This is not so in other democracies, where sometimes even elections are won or lost on the basis of health issues."
The United Nations believes public ignorance is encouraging the spread of HIV/AIDS in India, and that the government has been slow to tackle the problem in part due to conservatives who oppose prevention methods that could be interpreted as promoting promiscuity. Attitudes are changing as the epidemic spreads like wildfire through India's vast population. A staggering 85% of infections are heterosexually transmitted, which together with intravenous drug injections are the primary infection routes of the virus. "Just as legislative, constitutionally-backed protection has helped to bring down the historic barriers around untouchability, so too, people living with HIV must be afforded protection and dignity and I hope such protection will be a prominent part of the national HIV/AIDS legislation being devised," said Dr. Piot. Tragically, 50% of global HIV/AIDS infections are amongst women, (most of them "set up" to acquire the virus through no fault of their own), mainly in the developing nations. Mothers can transmit the virus to their unborn children and also transmit it to newborns through breast milk, the food of choice for the poor, as cost is a factor. Gender discrimination, inequality and the vulnerability of women are a driving force behind the AIDS epidemic in developing nations, including India. "An effective response to AIDS can only be one that strongly incorporates a gender perspective," said Dr. Piot. For the prevention of sexual transmission of HIV he advised a combination of approaches: abstinence, being faithful and condom use. At the conference he said the stigma associated with AIDS made it tougher to handle in India, where 40% of people infected with H.I.V. were women. Secretary General Kofi Annan supports this view:
"It would be a terrible mistake to see AIDS as a problem affecting only the poor, or to dismiss those infected with HIV as immoral. For hundreds of thousands of HIV-positive Indian women, the only infection risk they ran was to have sex with their husbands. India still has the chance to curb the epidemic before it spins out of control by stepping up prevention efforts, and by ensuring that care and antiretroviral treatment go to those who need it."
"Young people are especially vulnerable and we must help them to make the right decisions in life. Let us not forget that for the decades to come, India will have the largest cohort of adolescents in its history. We have learned in the last two decades that people, particularly young people, change their behavior and behave responsibly when they are given choices and not simply lessons based on morality," he said. Amongst those gathered at the conference in New Delhi was Ms. Nafisa Ali, founder and Chairperson of the NGO "Action India," a citizens motivated Trust. A former Ms. India and a well-known movie star in a land of ardent Bollywood fans, Ms. Ali has been advocating for people living with HIV/AIDS for years, fearful of the dangers the disease poses for the future of India, especially the young(See The City Review article at http://www.thecityreview.com/aids3.htm.) Infected citizens who found their way to "Action India's" HIV Clinic in Central New Delhi were living proof that there was an urgent need for small NGO clinics for the desperate to turn to. The stigma associated with the disease keeps many more hiding in secrecy fearful of the retribution of moralistic attitudes and discrimination. Typically, the infected are ostracized and isolated. The taboo surrounding HIV/AIDS in India is a dangerous deterrent to containing the spread of the lethal virus. The subject is avoided or not discussed at all way it is in the US within families and in schools.
In August, 2001, Ms. Ali invited this reporter to the village of Rajokri on the outskirts of New Delhi, near Indira Gandhi International Airport. She said she had committed herself to establishing the first AIDS care center in New Delhi, and that she hoped the government of India would help her by leasing the property we were about to visit: "I can try and raise funds to care for the patients, but I cannot afford rent as well," she explained as we drove through the dense throng of humanity mingled with bicycles, mini-buses, bullock carts and bumper-to-bumper cars. The entire scene made me marvel at her optimism and energy. Acquiring a building for an AIDS shelter in the midst of the bedlam, heat and blaring horns sounded like a dream, but she gave me a dazzling smile as if to say, "You just wait and see." She also spoke of the support of the government in helping local villagers and elders to understand rather than stigmatize the infected. There was ample time to hear Ms. Ali's concerns as the throng gave way to the quieter suburbs: gender discrimination, mother-to-child transmission of AIDS, the human rights aspect of denying anti-retroviral medications and operations to the infected, and stigmas over and over again. "It makes them feel like outcasts" she said " and they die alone, suffering." It was a photograph of a prostitute taken by Ms. Ali that caught the attention of this reporter a year earlier, included with a note amongst literature on Action India's projects. Without anti-retroviral medications to combat her HIV/AIDS infection, her physical condition was unlike any I had seen, and I have seen dire poverty and illness. I never turned away from HIV/AIDS again because of the power of that single image. It is my belief that anyone who saw the photo would do the same. Ms. Ali said the prostitute asked her to take the photograph "to help others, so this does not happen to them" she told Ms. Ali. Condoms were not required in the sex trade that earned her a living, and Ms. Ali said it was the plight of this woman that made her vow to commit herself to the cause of people living with HIV/AIDS with relentless determination. This woman had not received the chance, the education or the support in life to prevent the indignities that the ravages of the world's most vicious virus wrought upon her body. She died shunned and stigmatized, as if her entire fate was her fault. Condom sales have actually dropped in India in the last year according to a BBC World report (http://news.bbc.co.uk/2/hisouth_asia/3067325.stm) and continue to fall. One of the hotspots for transmission of the disease is in Bombay, where nearly 6,000 prostututes and sex workers live in just one red-light area. Many are struggling to survive and do not consider the condom a priority. Living in utter squalor, many of these women come from poor backgrounds and offer services for less than a dollar an hour. If a client is willing to give them more money, they agree not to use a condom. The next meal is more important than getting HIV and then dying a few years later. Moralistic attitudes and discrimination can be more vicious than bullets and knives in the manner in which they kill. The way HIV/AIDS kills without anti-retroviral medications is a violation of the most fundamental human right to die with dignity. A poor person in a developing country with HIV/AIDS is no less deserving of a shelter or hospice or loving family and friends around them than their brethren in wealthy nations, and it would be a tragedy if the commitment to care for the dying became lost in the race to eradicate the spread of new infections in developing nations. The village of Rajokari, near Indira Gandhi International airport, was tranquil and traditional, just the kind of community that might shun the person with HIV/AIDS, because there was nowhere in the narrow, medieval lanes hugging small rows of attached homes where anyone could keep a secret for very long. There was simply no privacy. The proposed AIDS shelter was set in a glorious two-acre plot of land, filled with trees. The birdsongs competed with the life-affirming sound of Rajokari school children at play next door. Ms. Ali brightened as we walked through the empty rooms: "It will be called 'Ashraya,'" she said happily.
It was hard to leave Rajokari and a few days later India itself, not knowing the outcome of the project. As the plane bound for New York swooped over the constellations of towns and villages I thought of Rajokari, and the need for AIDS shelters across the nation. The virus had begun its corrosive journey into India's population of 1.2 billion people. In December, 2002, a very special invitation arrived in New York: "Dearly beloved Friends, "It has been a long and eventful journey, our quest to start an AIDS care facility which eventually bore fruit. Our relentless crusade and dedication will translate this dream into reality on the 17th day of December, 2002.On this day `Action India (Trust) Aids Projects'Holistic Care Centre `Ashraya' will be formally inaugurated by the Honorable Chief Minister, Mrs. Shiela Dikshit at Rajokari. It is our proud privelige to mention that this is a pilot project, a Bhaagidari Scheme (Citizen-Government Partnership) of Government of NCT Delhi and Action India Trust." In June 2003, Ms. Nafisa Ali visited New York, and was much moved by the sight of Ground Zero, which she visited many times. "I wish for peace for both our countries" she said, "and freedom from terrorism." She spoke of her hopes for a support group in the United States for the work she is doing in India for people living with HIV/AIDS: "Please ask America and President Bush to help us in our struggle," she said, "This is the only country that really understands the problems of HIV/AIDS," said Nafisa Ali. In New Delhi on July 29th, 2003, after the National Parliamentary convention on AIDS, Dr. Peter Piot, Executive Director of UNAIDS, Ms. Penny Wensley, Australian High Commissioner and Dr. Anderson, Country Director, UNAIDS were invited to visit Action India's Holistic Care Home for HIV-positive people in Rajokari. Nafisa Ali told Dr. Piot that "Ashraya" is a positive story that can be replicated in all parts of India. Initially there was apprehension in the local community, but with accurate information given by Ms. Sheila Dikshit, the Chief Minister at the time of the inauguration, the doubts were removed. Ms. Dikshit said "Knowledge is the key to solving the problem of HIV/AIDS. Knowledge will save lives." "Today, Rajokari Village, with a rural population of more than 7,000, has accepted the AIDS care home with the active involvement of the Village Pradhan and other village elders. There has been no stigma and discrimination only understanding and sensitivity." Peter Piot, acknowledged the hard work that is being put into "Ashraya" and emphasized the importance of care. An "Action India" press release commemorating Dr. Piot's visit to Ashraya states: "Action India is a citizens' motivated trust working consistently with other NGOs to solve a variety of problems, extending all possible support to people who are voiceless, rendering services to them in times of need. We at Action India believe in a multi-prong approach which includes prevention, awareness, support and care and advocacy with the Government." Dr. Piot said the challenge was to rapidly scale up AIDS prevention programs nationwide, and to ensure that AIDS treatment is widely accessible to people living with HIV/AIDS. In his State of the Union address to American citizens President Bush spoke of an African doctor who told AIDS patients he could not help them, due to lack of funds: "In an age of miraculous medicines, no person should have to hear those words," said the President.
In the years ahead India will hope to hear those same words of reassurance form the most powerful leader of the free world. Laws that govern trade and patents will determine the survival of millions of Indians when the cost of anti-retrovirals is unaffordable to the downtrodden, sick and weary masses. Only world leaders and laws can help them. Mr. Atal Bihari Vajpayee, Prime Minister of India's 1.2 billion citizens called for an "openness and a complete absence of prejudice towards affected persons," in his speech at India's first National Convention on HIV/AIDS. Clearly, every community in India will need its "Ashraya" in the years ahead. It is not an unrealistic dream; it is an urgent reality.
Dr. Peter Piot concluded: "UN Secretary-General Kofi Annan referred in his message to the example of the father of the nation, Mahatma Gandhi, in his steadfast efforts to attack the stigma attached to leprosy. We must keep that example uppermost as we tackle the unwarranted and unconscionable stigma that attaches to HIV. Because we know that stigma kills. And because stigma is the best ally of HIV." Dr. Piot laid out a positive "foundation plan" for action: "Responding to AIDS is obviously a major responsibility of government, but government cannot do it alone," he told the conference, "The health sector is a vital factor but cannot be expected to shoulder the burden alone. All relevant sectors should join forces, just as we are doing in the UN system through UNAIDS. The vibrant NGOs, the mass organizations and the business community and unions, are all key partners in expanding the response."
India's leaders have shown courage and commitment and sounded the alarm which must be heeded in all sections of society if a massive health disaster is to be prevented. It is time for all of India and Indians living around the globe - to mobilize and to act. "The media can save lives," said Dr. Piot, by spreading knowledge and information. The spirit of private generosity and philanthropy in the United States is a unique and awesome phenomenon that does not exist anywhere else in the world. From the lemonade stand bearing a small American flag in a bottle set up on my New York street corner by 3 young children to benefit the widows and children of firefighters who died on 9/11, to the state-of-the-art black tie fundraisers that benefit every cause known to man and in every small town and village across this country where community and religious groups sustain, support and keep the flame of warm hearted charity and kindness burning, that generosity of spirit is one of America's greatest national treasures. In the years ahead, every Indian will have to emulate this spirit of giving toward their fellow Indians if a massive health disaster is to be avoided. Similarly, as high-profile leaders like Kofi Annan and Colin Powell embrace the plight of their fellow citizens a continent away in Africa, so too must influential successful Indians living around the world show support for their brethren in India. Ignoring the problem will result in tragedy. It is to be hoped that America's leaders and this country will lend its might, muscle -and heart - to the 21st century's battle for mass salvation. The New York support charity for "Friends of Action India/Aids Projects" will be launched via the web to support the work of "Action India/Aids Projects" in New Delhi. Stay tuned at www.FriendsofActionIndia.org on or after August 20th, 2003.