Health
By Michele Leight
In his State of the Union speech on January 28th, 2003, President Bush stunned AIDS advocates around the globe by making the global AIDS epidemic the first foreign policy issue on his evening agenda. He urged Congress to approve $15 billion in funding for AIDS over the next few years for many African and Carribean countries.
The President's pledge of $15 billion over the next five years will benefit 12 African nations, and Haiti and Guyana. The goal is to provide treatment and care for 10 million Africans and orphans already infected, prevent 7 million new infections, and provide antiretroviral medications for 2 million people. A little over half the money will pay for drugs, 15% for treatment and care, and the rest will go for prevention - abstinence, education media campaigns and, surprisingly for the Bush administration, condom use.
Mr. 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.
The President has been skeptical about funding AIDS relief in the past fearing that American tax dollars would be wasted and the money carelessly spent. Jeffrey D. Sachs, Director of the Earth Institute at Columbia University, who has strongly advocated increased global AIDS spending, recalls “great skepticism” in early meetings with administration officials, including Secretary of State Colin Powell.
Professor Sachs describes the President’s recent initiative as a “historic breakthrough.” Observing that the President is both morally and geo-politically astute, Mr. Sachs maintained in an February 2, 2003 article in The New York Times editorial (2/2/03) that the President's call to war against Iraq needs to be balanced by the good that America stands for: “It's the notion of needing to deploy weapons of mass salvation, together with weapons of mass destruction,” he said.
Two years ago, Senator Bill Frist, who has volunteered his services as a surgeon on medical missions in Africa, pressed President Bush to do more to fight Global Aids when he was invited to ride with him on Air Force One. Since then, administration officials have seen the tragedy in Africa first hand: Dr. Anthony Fauci, a leading federal scientist, Tommy Thompson, the Secretary for Health and Human Services and Secretary of State Colin Powell were deeply moved by what they saw. Dr. Fauci told the President it was “a great catastrophe. Babies were dying infected. Dying mothers were infected.” When the price of the AIDS "cocktail" dropped from $12,000 to $300 per year - and the AIDS cocktail became simpler to take - successfully implementing relief seemed possible.
For critics of the President's previous hesitation in combating the global AIDS epidemic, Dr. Fauci, who visits the White House frequently to discuss bio-terrorism and vaccine research, confirms that he and other officials have been working on the AIDS initiative since last June, under the President’s explicit direction. In past months, Colin Powell, National Security Advisor Condaleeza Rice and Bono, the Irish rock star - among many others - have made a passionate case for AIDS relief on humanitarian grounds: “The administration isn’t afraid of rock stars and student activists – they are used to us. But they are nervous of soccer moms and church folk. Now when soccer moms and church folk start hanging around with rock stars and activists, then they really start paying attention,” Bono declared in a February 2, 2003 article in The New York Times.
Advocates recognize the importance of Mr. Bush using the authority of his office to take up their cause: “This is a moment where the United States has drawn a line in the sand. If they want to paint the drugs red - white and blue, I don’t care. And neither do the millions who are about to go on them," Bono maintained.
For anyone who has seen the enormity of the AIDS problem in developing nations that do not have health-care centers in every community like the West and cannot afford medications, skepticism about where the funds actually go is easier to understand. Widespread stories of corruption and misspent funds increase the need to administer relief through carefully screened national and international aid agencies - and individual non-government organizations (NGOs) formed by citizens who wish to help.
Wealthy nations writing checks will not end the troubles of developing countries that do not have the infrastructure to cope with the impact of massive numbers of new infections, as well as care for those already infected. It is overwhelming. If programs are not carefully monitored and supervised and accountability for funds made a prerequisite for further funding, corruption will rear its ugly head. This ultimately undermines the generosity and the efforts of those whose focus is moral, caring and responsible. In the long term, accountability ensures that those who are suffering will get the treatment and care they deserve, which is the whole point of sending aid in the first place.
Studying societal values and stigmas against people with HIV/AIDS in developing nations should be a prerequisite of any charity or aid organization sending relief and workers to help PWAs (people with Aids). Unlike some other diseases like smallpox that can be prevented with one vaccine injection, AIDS requires consistent, long- term treatment and care and an educated framework. Taboos, rumors and superstitions must be transformed into concern, involvement and knowledge about the disease. In many local communities in developing nations HIV/AIDS is often regarded in much the same way as people in biblical times viewed lepers, as “a punishment from God for wrong-doing,” or the hand of fate. It is only with committed local support, including the Government and hospitals in developing nations that the epidemic will be pushed back and the threat to the wider community eradicated. At present, most PWAs in India end up in government hospitals, learning for the first time of HIV/AIDS. By then it is often too late.
There are 42 million people estimated to be living with HIV/AIDS globally. Of this number, 38.6 million are adults, half women, and 3.2 million children under 15 are also infected. The virus is now in its third decade.
Estimates now indicate that there are 25 million persons suffering from AIDS in Africa and that 6 million have now acquired the virus in Asia. Asia is now the focus of many experts, with the sharpest rise in new infections: Dr. Peter Piot, executive director of UNAIDS (www.unaids.org), adds that in order to push back the epidemic, “a $10-15 billion dollar per year international collaboration in low- and middle-income countries involving governments and civil society, and public and private sectors from all countries” is needed. Dr. Piot concedes that such an expanded collaboration “does not mobilize spontaneously,” citing leadership and advocacy for effective action and the promotion of “civil society engagement.”
According to a UNAIDS press release in October 2002, outside sub-Saharan Africa, Asia has more people living with HIV/AIDS that any region on earth. “The epidemic in Asia threatens to become the largest in the world,” warned Dr. Piot. “With more than half the world’s population, the region must treat AIDS as an issue of regional urgency. The question is no longer whether Asia will have a major epidemic, but rather how massive it will be.”
“This year, for the first time in the epidemic’s history, the number of women living with HIV has risen to 50% of the global total,” Dr. Piot declared in his World AIDS day message in December, 2002. “We need to remind ourselves," he continued, "of ways in which stigma and inequality push women to the end of the treatment queue, exacerbate HIV risks, sustain sexual violence and deprive girls of schooling. Yet we also need to remember that women’s organizing in care support and community education has been one of the keys to success against the epidemic.”
The tragic part of the increase in women with HIV is that - unlike men with HIV/AIDs - they face the “double-whammy” of being able to transmit the deadly virus to their babies through breast milk - most of these women are monogamous housewives or widows who lost their husbands to AIDS, followed by sex-workers and Injection Drug Users. It is women who represent the majority of HIV/AIDS infected citizens even though the actual number is 50% - because they can and do have babies.
The antiretroviral (ARVs) medications that make HIV/AIDS a manageable disease must be administered in the “infected” (HIV-positive) stage of the disease to prevent full-blown AIDS from occurring. Antiretrovirals are readily available for many people living with HIV/AIDS, but not for everyone. The dividing line between those who receive the medications and those who do not is money, exacerbated by the need for a “prevention and care” infrastructure that most developing nations do not possess.
As researchers and scientists pursue the vaccine for the cure for HIV/AIDS, the disease has begun to be contained in the West. However, even in the United States - the wealthiest nation in the world - there are babies being born to a life of AIDS. Their mothers were either infected through heterosexual contact, injected drugs with infected needles, or had sex with an HIV infected partner and did not know it. Those who now succumb to HIV/AIDS in the United States are no different from those who get the disease in “low income” countries: it is about gender, socio-economics, and lack of education – and youth. There is a disturbing rise in the prevalence of HIV/AIDS in young Americans of all socio-economic levels and backgrounds:
Recent statistics for the United States from the Center for Disease Control (http://www.cdc.gov/hiv/stats.htm) indicate a sharp increase of AIDS in the 19-29 age group, the most “experimental” sexual years, where one exchange of unprotected sex between heterosexual partners, sex with an injecting drug user, amongst othe causes, can result in HIV infection. The HIV virus can lie dormant for up to 10 years. Getting tested for HIV (the virus that causes AIDS) is vital for prevention of the disease. Once detected, the virus can be treated with medications called antiretrovirals.
There is also an increase in heterosexual women with HIV/AIDS in the United States. However, in low-income and developing nations - where the virus is gaining momentum at an alarming rate - women head the list of heterosexually transmitted HIV/AIDs. Total United States infections are 816,149, reported to the Center for Disease Control through 2001. Of the 147,000 women in the US with HIV/AIDS, 77,000 acquired the virus heterosexually. While the majority of those with HIV/AIDS in the United States are still MSMs (men sleeping with men, 368,971, the remaining numbers have become infected predominantly through heterosexual contact and IDU (Injection Drug User). Vigilant education/prevention through the use of condoms is crucial in combating the virus.
AIDs advocates have maintained from the outset that the neglect of those suffering with HIV/AIDS by discrimination, poverty and stigma deprives them of the fundamental human right to care and treatment. In the case of women with HIV the disaster doubles - because unlike men, women transmit the virus to their babies in breast milk without the “block” of an antiretroviral called Nevipirene. Breast-feeding is the food of choice for the babies in developing nations, both culturally and economically - it is free.
In his speech to opening session of the 13th Meeting of the Programme Coordinating Board of UNAIDS, Dr. Piot said: “ We have not yet begun to fully comprehend, let alone measure, the magnitude of the impact on human and economic development in the most affected communities and countries. The role of AIDS in compounding the famine in Southern Africa may be just a harbinger of what is to come….It is clear that our highest priority for action must be in those countries with high prevalence and those most threatened by rapidly rising rates of HIV infection….National responses must be multi-sectoral and at full scale. They will require human and financial resources that can only be maximized and sustained through effective partnerships between governments, civil society, religious and cultural institutions and businesses.”
The good news, according to Dr. Piot, is that even the most severe HIV epidemic can be turned back: “In every continent across the world, from cities and rural areas, we have examples of safe behaviors resulting in markedly lower HIV rates. The extension of access to care is slowly gaining momentum, and brings hope to millions….The World AIDS Campaign for 2002-2003 is all about stigma and discrimination - tackle them and we are well on the road to winning the fight against AIDS. I therefore challenge each and every one of you to fight discrimination related to HIV/AIDS wherever you find it.”
Stigma and discrimination endanger women far more than men in developing countries, where cultural pressures, lack of education and poverty often “set them up” for acquiring the HIV virus.
Uneducated women in a small village in the middle of India or Africa - with very strict codes of conduct for women - will assume that sexual misconduct or drug use or some negative action has brought the scourge of HIV/AIDS to her as a punishment. The blame and suspicion never lies with the husband or the man involved. And - because of discrimination and stigma - they will punish her because they are afraid of catching the disease or because they think she is “bad” (extra-marital affairs, prostitution etc) by ostracizing her and her child - or children.
While this might sound harsh, to the uneducated, it is a life-preserving reaction that is ages old. Education about protection and prevention methods will help local women in developing and low-income countries understand that they cannot catch the virus by standing next to an HIV-infected person - as with smallpox. Viruses are commonplace in developing countries, but it is hard to explain AIDS to Upper East Side New York children let alone a woman in a tiny village with a regional dialect. Through education they will also understand that anyone - including celibate monks through shared razors with HIV- positive men - can get HIV/AIDS.
Monogamy does not guaranty immunity to HIV/AIDS anywhere in the world any longer, as the statistics demonstrate. Across the globe, east and west, heterosexual transmissions are on the rise. If one partner has had unprotected sex with an infected person -even once - he or she can become infected and then pass it on to a spouse or partner. Intravenous drug injection with shared needles is lethal. For all the categories of infection with statistics, check www.cdc.gov/hiv/stats.htm.
With a healthy mother, regardless of nation or culture, breast milk offers the best nutrition to a newborn. It is inconceivable to imagine the guilt and pain of an illiterate, impoverished mother when she learns that she is dying and that her baby will die because of a killer virus she unknowingly fed it through her own milk. Double the torment when she discovers that she might have prevented it, if she had been empowered by education, free medications and a support system to do so.
For a graphic illustration of this tragedy, one has only to look at photographs from Africa. The hospitals are inundated with row upon row of tiny newborns, with none of the perks - gifts, flowers, loving friends and relatives - that the arrival of a baby born to health and comfort in the West brings with it. Most of all, there are no loving arms to cuddle them, because mothers are wasting away helplessly from AIDS in the next ward, wondering what demon brought this horror into their lives. It is the most inhumane beginning for a small life. The infected babies live for up to two years - suffering - before the virus claims them. The sight of this skewers the concept of morality and humanity to the conscience of “civilized” mankind, demanding an accounting.
UNAIDS warns that, while the pace of the response to AIDs is rapidly accelerating, we have not caught up with the pace of the epidemic. In December 2002 in Portugal, at the 13th (UNAIDS) Meeting of the Coordinating Board, the evaluation report credited UNAIDS with creating a clear global mandate with objectives that can be used to hold international leaders to account.”
The degradation of a punishing, slow death by AIDS in Africa, India, China and numerous other developing countries is chilling, because people with AIDS often die shunned and alone. Well-intentioned, helpless doctors, clinicians, caregivers, family and AIDS organizations can do nothing to prevent the ferocity of the AIDS virus once the disease is entrenched in the patient.
As Headlines like “China Now Set To Make Copies of Aids Drugs: Says a Million Infected – Reversal in Policy,” (The New York Times, Sept. 7, 2002), are followed by “As Aids Spreads, India is Still Struggling for a Workable Strategy,” (The New York Times, Nov. 11, 2002), and in the same paper two weeks later “Aids Imperiling African Armies, Key to Stability of Many Nations,” (Nov. 24, 2002) on a weekly, even daily basis in the media, the urgency of implementing a world-wide strategy to block the path of the virus becomes clear.
In countries with huge populations like India and China, where the disease is exploding, the question of who will live and who will die in the short tern will be a matter of money - because of the cost of antiretrovirals, and the lack of infrastructure to cope.
The question of human rights is a tragically poignant one in this scenario because inevitably the rich will live (because they can afford to buy the medications) and the poor will die, and die horribly. People already infected with HIV/AIDS might conceivably be written off as “high-risk” by the bill-payers or financial distributors of individual nations - including their own - and sacrificed for the sake of the healthy because they are already dying. The “low risk” HIV/AIDS populations might be considered a more valuable commodity to a government - and therefore worth funding - because ultimately they will be more useful. In a “success” driven world, funds given for “prevention” end up looking better on paper, because the result is a healthy, useful individual.
This approach to the global HIV/AIDS epidemic may be interpreted by history as an insidious - even subtle - form of genocide, or as some have callously put it “population control,” because the medications that offer relief exist. This mentality can be especially dangerous in countries with large populations, where a “life is cheap,” philosophy prevails, the stigma against the disease encourages its increase and the diseased are considered a liability. A deadly combination for those already infected, who desperately need care.
The predicament of an Angolan soldier sadly demonstrates this trend. In a November 24, 2002 article in The New York Times by Henri E. Cauvin, Sergeant Leira in Angola is quoted as saying “If I was like other people who have a lot of money - they go abroad to buy medicines, they go to South Africa for treatment - then I could continue (in the army).” Weakened by HIV, and without an infrastructure in Angola to help him, Sergeant Leira will leave the army, a painful decision for someone who has known only a soldier's life - and his future prospects (at the time of writing) were hopeless. In South Africa, one in four soldiers has HIV/AIDS. When the soldier tested positive for HIV in 2000, the stigma connected with the disease resulted in his relatives turning their backs on him - a man who had spent his life defending his country in a war. He, like many in developing nations, considered suicide. However, an AIDS support organization helped avert that tragedy, and also recovered the support of some of his relatives through education against the stigma of the disease.
The President’s State of the Union address pointed to the underlying - if not directly mentioned - concern for the fate of nations, especially Africa, succumbing to the HIV/AIDS virus. The disease is leaving soldiers wasted, parents dying and millions of orphaned children alone - easy targets for terrorist organizations waiting like birds of prey to recruit them. Without armies to defend them, nations can destabilize fast.
In his article, Mr. Cauvin wrote that “A new Central Intelligence Agency report on AIDS cites Nigeria and Ethiopia, sub-Saharan Africa’s most populous countries, as crucial American security concerns, and its rising toll on their armed forces is part of the reason.”
In the West, education and consistent anti-retroviral medications would make Sargeant Leira’s condition manageable – and probably allow him the dignity of inclusion within his family. He views his lack of control over his fate as poverty – even though antiretrovirals exist to help ease his suffering and prolong his life. At present his government is not in a position to help him. This soldier’s fate can be multiplied thousands of times in many African countries, and will most likely follow in other developing countries.
Defense Secretary Donald Rumsfeld was advised in November by Frank Griswold, presiding bishop of the Episcopal Church in the United States, that AIDS was destabilizing armies in Africa. Taking that scenario into the Indian sub-continent, where AIDS is exploding, a similar threat may occur if swift action is not taken against the virus: India is the only democracy in the region. At present a million troops are mobilized on its borders, which neighbor Pakistan, China and Bangladesh.
The tragedy of Africa, a country with more children orphaned by a specific disease than any civilization in history, will repeat in countries like China (1 million “officially,” but realistically far more if a meticulous head-count were taken) and India, with 3.7 million infected, (making it the country with the highest number of citizens living with HIV/AIDS after South Africa), unless swift action is taken. The Central Intelligence Agency has warned that AIDS in Africa, India, China and Russia pose a real threat to the national security of the United States.
Countries like Brazil, and more recently, Cambodia, have been torch bearers and a sign of hope in proving - without any doubt - that a combination of involved, active citizens and responsible government can contain the spread of the disease and offer its PLWHA relief – without being a wealthy nation with an educated population, as has been suggested in the past.
Tribal communities who speak their own dialect have been educated about aids in Brazil and provided with free condoms. Individually marked bags of medicines - with a magic marker sketch of the sun indicating daytime medication and the moon indicating night-time medication - helped to overcome the language issue, thereby disproving the theory that illiterate, uneducated people cannot administer medications to themselves. Now, with advances in medical science, the antiretrovirals are much easier to take and to administer.
The eradication of aids is not just a matter of rocket science, despite the mind-blowing advances in research and medications for those suffering with HIV/AIDs. One only has to see the ravages the virus wreaks – merciless -upon those who do not receive antiretrovirals. Curbing the epidemic is also a matter of implementing simple, hands-on procedures to help frightened, uneducated people feel comfortable enough within their community to seek and accept help in the treatment of a disease that will spread like wildfire if they do not.
The stigma associated with the disease is, at present, the most pernicious and insidious cause of its spread in developing countries like India - a country of over a billion people. Despite a concerted effort to control the disease by support groups and by the government and local health organizations - by supplying condoms to local stores, for example - a man going to buy condoms in a small village is a “marked person” because culturally condoms are not accepted or used. They are expensive and the purchase of one indicates - in some uneducated minds - the presence of disease. Then comes the stigma and discrimination.
Speaking at the World Economic Forum’s (WEF) East Asia Economic Summit, which he co-chairs, in October 2002, Dr. Piot warned: “HIV has already spread to more than 6 million people across Asia. By not tackling it now while it is still manageable, the epidemic will have far-reaching effects, destabilizing societies and damaging productivity.” This is the first time someone outside the business sector has been invited to chair the summit, giving an indication that businesses are growing concerned over the toll HIV/AIDS could have on productivity and stability long term if left neglected.
At the conference, attention was drawn to the information that China, with a fifth of the world’s population, registered a more than 67% rise in reported HIV infections in the first six months of 2001, 70 percent occurring among injecting drug users. The total HIV/AIDS reported in China is 1 million.
China is one of several countries reporting record rises in HIV infections. Haiti, which has the highest rate of HIV infections outside sub-Saharan Africa, were relieved at the timeliness of President Bush’s promise of AIDS relief. More clinics and laboratories will enable accurate data to be collected. Experts predict a 50 percent rise in the number of people identified as infected with the virus as a result of more sophisticated diagnostic services. Given the rudimentary clinics - if any - in many countries, especially in rural areas, it is impossible to tell how many people actually have the virus at present. The global totals are for known infections.
In 2002, after pressure from AIDS advocates, the World Trade Organization essentially granted countries the right to break (“bypass”) patents if the medications were “essential to combating a national health emergency” and were otherwise unaffordable. According to Elizabeth Rosenthal of The New York Times, insufficient access to medications has been especially infuriating for AIDS advocates in China, since China has an impressive pharmaceutical industry – well-known for its expertise in Western medicine. Desano, a company based in Shanghai, already legally makes the raw ingredients of the AIDS “cocktail,” and ships it overseas for profit.
The Chinese Government - not long ago in complete denial that they had an AIDS problem - ultimately threatened to break patents by the end of 2002, despite World Trade Organization restrictions, because of the toll the disease is taking in China.
In an article last fall in The New York Times entitled “China Now Set to Make Copies of Aids Drugs – Says a Million Infected – Reversal in Policy,” Elisabeth Rosenthal reported that one of China’s most outspoken aids advocates, Dr. Wan Yanhai, who disappeared in Beijing on August 24th, 2002, was in the custody of the “State Custody Bureau.” According to the article, Dr. Wan, who had been “followed and harassed by security officials all summer, had been taken into custody because he had “posted a classified document prepared by the Henan Health Bureau on the Internet in late August, showing that officials there were well aware of a serious HIV problem as early as 1995.”
Dr. Wan Yanhai exposed seven years of governmental secrecy while the practice of blood-selling by poor farmers continued. Farmers sold their own blood with the full knowledge of the government, for money, because they were desperately poor. The Government knew that the blood being collected was “drawn” by using communal needles. The “good blood” was used for blood products, while unwanted blood was re-injected back into the donors - thereby spreading the disease to innocent Chinese civilians.
Dr. Wan’s wife, who is studying in Los Angeles, said that one of Wan’s colleagues said that the State Security Bureau admitted Dr. Wan was being held “for disclosing the secret report.” Dr. Wan Yanhai, an aids activist and advocate, founded the Aids Action Project, a small organization that ran a web site and conducted AIDS advocacy work in China. He was to have received a prestigious Canadian human rights award in September.
In a November 11, 2002 article in The New York Times entitled “As Aids Spreads, India is Still Struggling for a Workable Strategy,” Amy Waldman tells the story of a widow living in a small village in Tamilnadu, whose husband died of AIDS and who, like many wives or widows in the area, were infected by their husbands years ago. Since then, others have learned through AIDS support groups that condoms prevent such transmissions and they are being used; but the women already infected, like the Angolan soldier, are left to battle the disease alone. The widow is in despair over the fate of her already fatherless children: “Her greatest concern is that no one in the village know what is making her ill,” wrote Ms. Waldman, adding that the woman maintained that "If they know, they will isolate my children.” she said. The woman was monogamous. “If you want to stay in your village, don’t tell anyone,” advised her counselor.
The state of Tamilnadu has the largest number of infections in India and is one of the most advanced in addressing the issue of HIV/AIDS but the government and local support groups indicate that despite supplying condoms in small village stores, there is the stigma, which can only be removed through education.
A disturbing trend in new infections at one Government hospital in Tamilnadu is that the patients belonged to a group previously considered “low-risk.” Most of them were monogamous housewives and most of them were women. Previously “high-risk” patients were commercial sex workers and truckers criss-crossing the country, who had significantly reduced their number of infections thanks to the combined efforts of local AIDS groups, Indian Government agencies, and financing from the United States Agency for International Development (USAID), at a cost of $6 million a year.
Educating local peer-groups in the state of Tamilnadu in India on safe sex and condom use resulted in an increase of condom use amongst sex-workers to 88 percent in 2001, from 56 percent in 1996, and among truckers to 78 percent from 44 percentm according to an APAC study.
On August 23rd, 2001, a hot, sultry day in New Delhi, India, I accompanied Ms. Nafisa Ali, Chairperson and founder of "Action India," a “citizens motivated trust” to the village of Rajokri on the outskirts of the city, near Indira Gandhi International Airport."
I had been invited by Ms. Ali to see the vacant building and land which she had asked the Government of India to donate to “Action India” for the purpose of caring for people living with HIV/AIDS (PLWHA). At that time, rent appeared to be the problem: “I can try and raise funds to care for the patients, but I cannot afford rent as well. We need this facility rent-free if there is any hope for the project,” she said.
Listening to the hopes and goals of the activist as we sped past a throng of humanity - bicycles, mini-buses, bullock carts and the dense traffic of central Delhi - made the reality of acquiring the building sound like a dream. The sheer volume of humanity in India’s magnificent capital is something to behold. Every set of traffic lights brought vendors swarming round the car peddling everything from sliced coconut and hot-pink visors to high-end Western glossy magazines and incense: “Sweeeeeeeet sandalwood,” bellowed the vendor through the rolled up window.
I listened in admiration to Ms. Ali who spoke matter-of-factly of taking on the responsibility of caring for people living with HIV/AIDS. As we drove, she discussed why many of the patients she knew had succumbed to the disease: it was a roll-call of Dr. Piot warnings. Most horrific of all were the stories of mothers who transmittied the deadly virus to their infants through their own breast milk. Without free HIV testing, they do not know they have the virus.
On the drive to Rajokari I learned that a single dose of a new drug called Nevipirene, administered to the mother, blocked the transmission of the AIDS virus to the baby. The cost of one dose of Nevipirene is $4 in India, considered cheap in the United States, but prohibitively expensive for someone who earns nothing.
“The holistic, the spiritual, side of healing is also very important – together with medications and treatment,” said my companion, who felt strongly that health care was a human right, especially in situations of great poverty. The stigma associated with the disease was a persistent and painful reality: “People with AIDS must not be discriminated against because of their disease,” said Ms. Ali.
I asked how “Action India” was going to afford the constant round of medications and health care costs once the government gave “Action India” the center. I mentioned two articles in The New York Times describing the involvement (and apparently heroic contribution) of Dr. M. C. Habieb, chairman of the Indian pharmaceutical company, Cipla India, acknowledged by many as the first pharmaceutical company to offer affordable anti-retroviral medications to Africa “on humanitarian grounds” after he had seen the “holocaust” the disease had wrought on the African sub-Continent.
Cipla’s offer was made at the height of the debate over the “sanctity” or “inviolability” of patents established between the wealthy nations and the developing nations.
Cipla India also offered Brazil affordable medications, when prohibitive costs were threatening the containment of the disease there. Cipla is a supplier of antiretrovirals to Brazil and many other nations battling the disease. Cipla’s action had the effect of forcing the large multi-nationals to follow suit - or stand by and watch the governments break patents, as Brazil threatened to do - and produce the medications cheaply themselves.
As we passed a group of smiling, brightly dressed, Rajastani villagers on the way to Rajokri, Ms. Ali said the center would be the first of its kind in Delhi, a city with 22,000 HIV-positive and 600 AIDS patients. The AIDS project is one of several Ms. Ali has pioneered for her organization. An important program targets “gender discrimination” and is called “Empowering the Woman and the Girl Child." These educational programs are crucial to making inroads in the current HIV/AIDS epidemic in India. Having more control over their own lives – and bodies - will ensure women the protection they deserve. (For more information, visit http://www.actionindia.org.)
Ms. Ali stressed that government involvement was crucial to the Aids care center, both in terms of acquiring the property in Rajokari free of cost and as "perceived support" within the local community and Indian society at large that the government was a partner in fighting the stigma of AIDS in India. In her view, with government backing, other centers would follow: “We need hundreds of centers all over India to combat this disease. We will face an epidemic like Africa if we do not,” she said.
Unlike their western counterparts, the majority of women in Asia (in the uneducated, “low-income” bracket) still continue to suffer from the same social, religious, economic, political and legal discrimination that their mothers did. They do not have the “rights” that we take for granted in the West. Raising the standards of all women is crucial to the battle against the global AIDS epidemic To help inform citizens in remote rural areas, Ms. Ali has pioneered educational films and tapes on HIV/AIDS in her country, which are translated into several languages. India has over 200 languages and dialects, making HIV/AIDS education a particularly challenging issue.
The AIDS advocate spoke of the difficulties of winning support for her cause: “I have fund-raised for so many charities in the past,” she said sadly, “but I have never encountered such resistance as towards AIDS....They say, ‘We will give you money for another charity, but not for this.’ The stigma in India is deep-rooted and must be removed if we are to succeed and Government backing is vital.”
Eighteen months ago Ms. Ali, a former Miss India, photographer, National Swimming Champion, and well-known actress in the land of millions of Bollywood movie fans, gave me a collection of newspaper and magazine articles she had written on India’s AIDS situation. At the time, I was completely in the dark about the prevalence of the disease in India - a country I love deeply. Amongst the articles were photographs of a prostitute who had HIV/AIDS. As my plane bound for London and New York lifted up and away from Indian soil - always a sad moment - I realized for the first time that India had a severe problem. Even though I have seen great poverty, nothing prepared me for Ms. Ali’s photos of the poor woman, who had literally been eaten away by the virus with enormous open wounds - because she had not received antiretroviral treatment. She also had tuberculosis, a common side-effect of HIV/AIDS. I recalled my first horrified encounter with the photos on the drive to Rajokri. The woman had been the impetus for Ms. Ali’s commitment to people suffering with HIV/AIDS.
Because she had been a prostitute, the woman’s disease was perceived as her own fault and the stigma of it left her isolated. Her story can be multiplied in countries and communities around the world. No one wanted to touch her or go near her. The only support she had received was from her sister, a nurse, who attended to her daily needs when she eventually became bedridden, which included dressing bedsores the size of craters, leaving internal organs exposed.
No matter how great the love, it is tough territory to take on a dire health situation without assistance and education. The prostitute’s physical condition would warrant full time professional care in the west. Ms. Ali remembered every detail of the time she spent with this woman, who died a few days later. She said she was haunted by the woman’s smile and lack of bitterness or reproach against the community that had shunned her. The chilling fact remains that many men continue to become infected during relations with prostitutes - or infect them - and then return home to unsuspecting monogamous wives or partners.
The government and AIDS organizations have since then made concerted efforts to address the issue of condoms through education: “Men must understand that a condom is necessary for everyone’s sake,” said Ms. Ali.
It was a chilling to hear Ms. Ali describe being taken by concerned AIDS workers to villages where fear and ignorance had led the townspeople to leave those suffering with AIDS, including small children, in isolated rooms or enclosures from which they could not escape. For basic survival they would throw them left-over chapattis and food. Fear of catching the disease and an age-old instinct to protect their own young cause ignorant, poor people to take extreme measures. They see HIV/AIDS as something that can be caught like chicken pox or measles: only education will eradicate fears and panic.
As the density and congestion of central Delhi gave way to the release of the highway and signposts to Rajokri, I wondered if there were any people in the homes we passed suffering from the kind of isolation and indignity we had been discussing. Ms. Ali had said so often in the past that it was the stigma of AIDS that hurt the most, because it made the patients feel like outcasts.
In the village of Rajokri, we encountered a major obstacle; the road leading to the house was impassable, blocked by construction clutter. It appeared to have been re-paved. We concluded, optimistically, that the road works were an affirmation that the Government was showing resolve and commitment to the area, possibly because the Aids Care Centre was soon to become a reality, requiring reliable access to the site.
The alternative route sent us down medieval, winding lanes barely wide enough to allow the car to pass, which is typical of India’s small towns and villages, which were constructed hundreds of years ago. While it was an architecturally fascinating experience, we had to proceed at a snail's pace to protect the car from direct contact with buildings. I made eye contact with a lady exiting her front door, six inches from the car window and she had to stand in her doorway until we passed. It struck me that the concept of privacy was meaningless in small towns like Rajokari. If a woman or child became ill, everyone would know. If their illness persisted, they would be perceived as a threat to all the villagers because of the density of the living quarters. This was communal living.
A few minutes later it looked like we were going to have to re-trace our steps (in reverse) and return to Delhi because the road became even narrower. Frustrated, Ms. Ali asked a local man if there was any way to get to the big empty house with the garden and minutes later we driving beside a high stone wall.
Through impressive wrought iron gates, I could see a spacious and graceful “modernist” style house of about 6,000 sq ft, set in two acres of land, most of which lay to the front of the house. The house and grounds were stunning; a garden and beautiful orchard, with leaves glittering in the dappled sunlight, dominated the view. Along the wall to the right were what appeared to be garages: “Those will be the out-patients clinics and workers cottages,” said Ms. Ali, already mentally planning the site.
The construction was brand new and unused and I now understood my companion’s longing for the place. It was as serene as it was practical - an emotional oasis for anyone trying to keep a grip on life because of a devastating illness. From over the wall came the shrieks of delight of Rajokari school children released into the playground for recess. Another boon: a children’s school with the life-affirming sound children always lend to any environment they occupy. “The AIDS care centre will be called ‘Ashraya,’ said Ms. Ali as we walked toward the house. It means ‘sanctuary.”
Inside the house the ceilings were high, the proportions graceful, the rooms silent and windows open to the elements. It was a lifeless shell except for a shuffling sound which drew our attention to a dark corner of the entrance hall: from the shadows a delicate cow peered warily at us, defined by its cream-colored skin. Cows, of course, are considered sacred in India.
We had evidently invaded the cow’s private sanctuary, and as the intrepid Ms. Ali approached him, he made for the great outdoors. We laughed like children: “Very lucky, very auspicious, a good omen, that the cow was in the house,” Ms. Ali and I said to each other. First the newly paved road, and now the cow in the house - it had to mean something.
Ms. Ali identified the purpose of each room: “This one is for the babies and it will have bright colors and posters; this is for the very, very sick patients.” Light poured in from huge windows as we ventured upstairs, where Ms. Ali immediately headed for an enormous terrace: “The sick children will play here,” she said, beaming with delight. It was remarkable how many times Ms. Ali mentioned the future children of the center at play, given the circumstances of their young lives. Lives begun in the womb with a deadly companion – the AIDS virus.
The view across the rear of the property was a sea of green under a pale blue sky with only a hint of the gray clouds that had hung heavily above us all morning. As we prepared to leave, Ms. Ali beckoned me out onto a small terrace at the front of the house, overlooking the garden and orchard. All was peace and beauty. I felt a pang of sadness as doubt claimed me. What if the dream of “Ashraya” became lost in the realities of money, red-tape and bureaucracy? “Beautiful isn’t it,” said Ms. Ali. Optimism returned as we walked down the stairs. This house was not destined to lie empty for long.
We closed the heavy gates and I took a final look at the house, nestled in its serene setting. We rejoined the narrow, medieval road back to the city center. The pace of the village was ancient and tranquil - a timeless reminder of the relentless march of civilization.
The next day, as my plane bound for London and New York flew over India’s vast patchwork of multi-colored fields, with constellations of small towns and villages, I hoped that each one of them had an advocate like Ms. Ali for people living with HIV/AIDS, because India is going to need them in the years ahead.
Months passed.
In early December, 2002, a very special invitation arrived in New York from the Chairperson (Ms. Ali), Trustees and Staff of Action India:
"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 Holsitic Care Centre 'Ashraya' will formally be inaugurated by the Honorable Chief Minister of NCT Delhi, Mrs. Sheila Dixit, at Rajokari (Near Air Force and the Greens Farms). It is our proud privilege to make a mention that this is a pilot project, a ‘Bhagidari’ scheme with the Govt. of NCT of Delhi and Action India (Trust)."
Soon after, with great joy, I received the announcement from Ms. Ali, dated December 19th, 2002, that I had been waiting for: the announcement that Action India (Trust) in association with the Government of Delhi under the Bhagidari scheme had opened the dedicated care and support center known as Ashraya.
ASHRYA will include inpatient care facilities, counseling services, nutritional support, HIV/AIDS education and training, special services & facilities for women and AIDS orphans, and alternative therapies.
Srimati Sheila Dixit, Honorable Chief Minister of Delhi, inaugurated “Ashraya.” The other guests were Dr. David Miller, Country Advisor, UNAIDS, Dr. Meenakshi Dutta Ghosh, Additional Secretary & Project Director, NACO, Minister of Health, Govt. of India, Mr. R. N. Baishya, Director Health Services, Delhi Govt. and Ms. Dora Warren, Director Global AIDS Project.
Speaking on the occasion Ms. Nafisa Ali, Chairperson, Action India (Trust) said:
“‘Action’ India has always been a forerunner in the fight for the fundamental rights of people with HIV/AIDS to the access and care and treatment. The birth of ‘Ashraya’ Care Centre is in continuation of our endeavor to ‘make a difference in the lives of people living with HIV/AIDS through care and support. We have always strived to achieve the objective of bringing the best health-care facilities within easy reach of the people of the country. ‘Ashraya’ will go a long way in not only serving the people of Delhi but also by providing counseling and guidance against the stigma and discrimination against people living with HIV/AIDS.”
Speaking in Hindi, Mrs. Dixit stressed that knowledge is the only key and the spread of knowledge can stop the spread of this disease. The Rajokari villagers were very responsive and listened to her attentively. Dr. Meenakshi Dutta spoke of “Action India” as a bridge between the government and the people for the care and support of people living with HIV/AIDS.
Dr. David Miller, Country Advisor, UNAIDS said he could already hear the sound of the laughter of children playing in the spacious surroundings of Ashraya and its beautiful garden. He congratulated Action India and the Government on this unique venture.
At last, “Ashraya” had been launched! If the cow is in residence it might become as great a delight to the children and patients as it was to us on that auspicious day in August, 2001. It must have been a sacred creature.
"Ashraya" is a testament to those rare individuals who dare to dream of making a difference in the lives of their fellow citizens. Hard work and love have gone into the “Ashraya’s” creation - and so many will feel its effect. There are endless hours of work ahead, but Ms. Ali now has a vital ally on board to help navigate the future - the Government of India.
I know what Ms. Ali will say when I see her in the Spring in India: “Now we need AIDS care centers all over India,” with a dazzling smile and a dramatic sweep of the hand, indicating villages far and wide. I am looking forward to hearing her say it.
In my mind I never lose sight of the myriad constellations of towns and villages in the vast sweep of the Indian sub-continent, which I have flown over by plane and traversed on land all my life.
HIV/AIDS must not be allowed to vanquish India’s ancient spirit and beautiful people. It must not be allowed to vanquish any human beings dignity in any country, as it is doing in Africa. While the President’s speech brought hope to millions in Africa, countries like India need help as well. China, Russia and all nations overwhelmed by the AIDS virus cannot be ignored. It is always the poor and the innocent who suffer the most - even in the United States.
Recent e-mails from “Action India” describe a once empty “Ashraya” filling up as Ms. Ali planned on that day when we visited together and stood gazing into the garden:
“We have a senior doctor as Chief Medical Officer, a coordinator for the Care home, 4 nurses, 2 careworkers, 2 security guards,2 sweepers, a cook, a MSW (Master of Social Work)…etc."
A little girl at “Ashraya” playing on the terrace, running in the garden, sunlight everywhere: that is a sight I am looking forward to.
As my favorite advertisement - on the side of a phone booth in New York - dictates: Dream Bigger.
Throughout its history, New York has been a sanctuary to many “impossible” dreamers. So let us imagine - as John Lennon, a native New Yorker, would have said - that the inventors of the vaccine for the cure for HIV/AIDS mandated in the patent that it be given free of cost to all people living with HIV/AIDS - as a human right. Governments and taxpayers could conceivably remunerate the inventors of the vaccine and the pharmaceutical companies. The United States has helped re-build nations at a fraction of the cost of eradicating AIDS. This is not a fairytale notion: the great Tim Berners-Lee mandated in the patent of his invention, “The World Wide Web” that it be given free of cost, setting in motion a universal communications revolution. This story on HIV/AIDS rides on the wings of Mr. Berners-Lee's free gift to humanity, reaching people around the globe.
The Center for Disease Control recently posted some important AIDS vaccine news that can be found at http://www.cdc.gov/hiv/pubs/facts/vaccinefact.html.
“To address the need for an HIV vaccine, Thai officials have been working with the World Health Organization, the Joint United Nations Program on HIV/AIDS (UNAIDS), the International AIDS Vaccine Initiative (IAVI), the Government of Japan, the U.S. National Institutes of Health (NIH), the U.S. Department of Defence, various universities, and the Center for Disease Control and Prevention (CDC) since 1991 to prepare for HIV vaccine efficacy trials. In February, Thailand became the first developing nation to announce a Phase III vaccine field trial. A Phase III Trial is done to determine if a vaccine is effective in protecting against infection or disease and is an important step in the evaluation process leading to licensure.”
Among the 60 million inhabitants of Thailand, as many as 800,000 people are currently believed to be living with HIV.
Despite innovative and persistent prevention efforts, HIV continues to spread rapidly, particularly among Thailand’s population of injection drug users (IDUs). Thailand has experienced a rapidly escalating and severe HIV epidemic since 1988. Methadone treatment, which treats the addiction to drugs, education and counseling on HIV prevention, and access to sterile needles have certainly helped to slow the epidemic. Yet, among IDUs in Bangkok, 6 percent continue to be severely affected by HIV. In addition to being one of the nations most severely affected by HIV, Thailand has emerged as one of the nations most committed to ending its toll.