Author Greg Behrman wrote: “The disease called AIDS is a treatable illness, and it is also a death sentence. How can this be? The answer is two words: money and geography. If you live in the USA and the developed world, it’s highly unlikely you’ll die from the disease. If you live in Africa or India, you’re doomed.” (from The Invisible People: How the U.S. Has Slept Through the Global AIDS Pandemic.)
For millions infected with HIV, not only in India but throughout Africa, Asia and Latin America, survival might well depend on affordable Indian generic drugs. For years, India’s pharmaceutical industry has produced and exported low-cost generic versions of the world’s most effective medications for diseases ranging from HIV to tuberculosis. In AIDS-wracked countries like Lesotho and Zimbabwe, more than 90 percent of lifesaving antiretroviral drugs are imported from India.
Now, pharmaceutical giant Novartis is suing the Indian government to change a section of the country’s patent law that safeguards public health. If Novartis wins this case, the production of Indian generic drugs could be cut back — and millions of the world’s most vulnerable people could lose access to the medicine they need to survive.
These drugs have been readily available in rich western nations for years, and to the affluent in any country. It does not seem morally permissible to allow such suffering when treatment is widely available to people who can afford it. Because HIV/AIDS disproportionately affects those already living without basic provisions of health care, education, and nutrition, it creates an apartheid between the rich and the poor.
We wonder why generations before us didn’t speak up as entire peoples were kidnapped from their home countries and enslaved. We ask how the world could have stood by and allowed six million Jews to be exterminated in the Holocaust. How will we answer when our children ask what we did while millions were orphaned by AIDS?
Join me in telling Novartis that people are more important than patents. Sign the petition against patent protection for drugs that can save millions of lives.
“What difference does it make to the dead, the orphans
and the homeless, whether the mad destruction is
wrought under the name of totalitarianism or the holy
name of liberty and democracy?” -Mahatma Gandhi
As I have written in previous posts, the Indian AIDS epidemic is destroying entire families and communities. In “The Missing Face of AIDS” I wrote about Vambay Colony in Andhra Pradesh and the all-too-common legacy AIDS has left there: grandparents supporting their orphaned grandchildren, and the other way around. In “Children Overflowing” I wrote about C.P. Kumar’s Little Hearts home for children who have been orphaned by AIDS.
There are more children living in India today with HIV-positive parents than children already orphaned. If far more drastic action is not taken to halt this catastrophe, the numbers alone tell us that the worst impact on children is yet to come.
The face of India’s future if it fails this battle lies in a small village called Cherlopalem in rural Andhra Pradesh. Not long after I returned home from India at the end of March, C.P. told me about this village that has been the subject of newspaper and television stories. Cherlopalem is home to 30 families of the Dalit or “untouchable” caste, a farming community surrounded by lush green fields that now stand empty. Three-fourths of the residents have been affected by AIDS. Seven people have died within the past eight months and dozens more are in the last stages, leaving many children behind without any sort of supervision.
A woman in newspaper article holds
a photo of her son who died of AIDS.
On April 8 the Eenadu newspaper reported, “The village, known for its hardworking lifestyle, is now ravaged by a cureless malady.” One infected woman who had been shown on a television newscast was so shamed she subsequently stopped eating or taking her medications, and soon died. The article accused officials of doing nothing. The remaining residents confessed that they knew nothing about the “dreaded disease.” They do not know how it transmits or what precautions will protect them.
Cherlopalem is a microcosm of the ability of AIDS to unravel the social fabric of entire communities. It is clear that a failure to address the looming crisis in India will have dire consequences for the country, its children and the world for generations to come. That we can know this and yet do nothing is, as Stephen Lewis of the United Nations put it, “mass murder by complacency.” A childhood cannot wait for the AIDS epidemic to subside, for poverty to be eradicated, for adults and governments to act, for the world to notice them. We wonder why generations before us didn’t speak up as entire peoples were kidnapped from their home countries and enslaved. We ask how the world could have stood by and allowed six million Jews to be exterminated in the Holocaust. How will we answer when our children ask what we did while millions were orphaned by AIDS?
Update: Divine Children’s Home
In mid-March in the southern state of Kerala – a lush, beautiful state known for its commitment to education and nearly 100% literacy rate among both boys and girls – I visited a special place called Divine Children’s Home.
Alice, me, and the children of DCH
Like so many incredible people I have met providing homes to children – Caroline, Papa, Manjeet, C.P. – DCH was started with a chance encounter that changed the course of a life. In 2000, Alice Thomas lost her husband in a car accident. Devastated, Alice struggled to make ends meet and to care for her two children alone. One day her job as a teacher at the local jail took an unexpected turn when a prostitute handed her baby over to Alice. Knowing that the child had no place else to go, Alice took him in.
Soon other people learned about it and began bringing other children to Alice. Once a mother of two, Alice is now mother to 29 children. She calls them “boarding children” because she feels that to call them orphans stigmatizes them. All she wants is for them to have a normal and happy life.
I visited Alice and her beautiful children in their very small home in Trivandrum. Alice and the home’s manager, Paul, explained to me their hopes and plans for building a new home on land that DCH owns – a plan that will allow them to accommodate twice as many children as well as build a library, clinic, kitchen and prayer room. They hope to begin construction in a few weeks.
Meanwhile, the new school session starts in three weeks. As always, Alice tells me that it is extremely difficult to find a way to cover the new expenses for uniforms, shoes, books and school fees. “However, I am sure god will see us through, just like he’s taken care of us till now,” she says.
If you would like to learn more about Divine Children’s Home or send an encouraging email or donation to Alice, please click here.
“Children are the living messages we send to a
time we will not see.” –John W. Whitehead
In 2010, there will be at least 100 million orphans and children affected by AIDS. The AIDS pandemic has a devastating effect on the millions of children who are orphaned and/or infected with the virus. In countries most affected, 15-20% of children have lost one or both parents to AIDS. This almost systematic loss of both parents is an unprecedented event in human history.
The purpose of World AIDS Orphans Day is to focus public and media attention on the distress of these vulnerable children and the consequences of their social and economic exclusion.
Imagine you are a 12 year old boy. You live on the outskirts of a town called Vijayawada in the state of Andhra Pradesh, India.
Your home is a tiny two-room concrete block, approximately 200 square feet, in a slum known as the Vambay Colony. Imagine that you live in this small home with your grandmother and your 9 year old brother. You live with your grandmother because your parents both died of AIDS – first your father, who brought the infection home, in 2001; then your mother followed in 2004. There was no one left to take care of you and your brother except your elderly grandmother. Almost crippled with severe leg problems, she can barely walk or take care of herself and never expected to be raising two more children at this age, never knowing how she will feed you and constantly worrying about what will happen to the two of you if she dies before you are grown.
Grandmother Durgamma in front
of the home she shares with grandsons
Your mother did not reveal her HIV status until shortly before her death to your grandmother – her mother. Soon after, you learned that although you are HIV-negative, your young brother is HIV-positive. He grows sick. He battles many infections. He cries in the night when he’s ill and calls for his mother.
There is no one else to provide an income for this new family you have formed, so at 12 years old, imagine that you must go to work. Your grandmother pays 200 rupees per month for the house – about five U.S. dollars – and this is a hardship. She has no income and cannot physically work; even if she could, someone has to care for your brother.
So you let your brother go to school, although for what future is painfully unclear, while you leave home for a week at a time to travel for migrant construction or agricultural work. You are paid 30 to 50 rupees a day on a good day – roughly a dollar or less.
You are 12 years old. You know you should be in school. You should have a childhood; but it has been traded in far too soon for adult work and worries, for hardships that no 12 year old should ever have to face. But what can you do? There is no one else. There is no other way. From a normal life with a mother and father, school, a childhood, possibilities – to this previously unimagined reality that is an all-too-common legacy of India’s exploding AIDS epidemic.
This is your new normal. Imagine.
I met this family on March 20, when I traveled to Vambay Colony with Abraham, a social worker with Vasavya Mahila Mandali (VMM). Vambay sprung up two and a half years ago, almost overnight, as thousands of people from the surrounding rural villages migrated to Vijayawada for work, setting up camps along the river. Soon the government built 8,000 of the small concrete boxes like the one Durgamma and her two grandsons live in, right up next to each other in row after endless row.
The homes are dark and poorly ventilated inside, a concrete locker, an arm’s length from the next one. In front of each home runs the open sewer, which you must step over to enter the home. The flies were incredible, swarms of them everywhere, an incessant presence. Bags of grain and bowls of food sat around, with no refrigeration and very little storage space. I thought of the flies and how they must land on both the open sewers and on the food. There seemed no such thing as sanitation, or hygiene, in Vambay. Children squatted by the side of the road to defecate. Other children played with simple things on the front stoops or in the small lanes – a small dirty ball, two or three jacks. I passed one little girl of about 4 or 5, in a yellow dress all by herself, twirling a piece of string around.
Keerthi Bollineni of VMM, which focuses on women and children, told me that the national and global response to the HIV/AIDS crisis in India has virtually ignored its impact on children. It is a sentiment which I have heard over and over from every single AIDS organization and activist I talked to. Keerthi explained that the government and international response to AIDS in India has primarily focused on high-risk target groups: the sex trade, the truckers who carry and spread the infection from town to town, drug users. But the epidemic has been spreading so rapidly, and for so long already in India, that the NGOs have known for years that it has long since moved from the high risk groups into the general population. 80% of women who are HIV-positive here are housewives. The ones who are bearing the brunt of what is widely considered the greatest humanitarian crisis of our time are the families and children.
The plight of Durgamma and her 9 and 12 year old grandsons has, distressingly, become an increasingly familiar story in Andhra Pradesh, the epicenter of the Indian AIDS crisis with the country’s highest infection rates. AIDS is an epidemic that wipes out the middle-aged generation, leaving the very old to take care of the very young – as well as the other way around. As AIDS devastates the 16-to-49 year old population, the very ages at which most people are raising families, it leaves hundreds of thousands of children in its wake.
The huge resulting trend of grandparents raising grandchildren has become so prevalent that VMM and other organizations like it have started what they call “Granny’s Clubs.” These are social and educational networks of women (and some men) like Durgamma who are caring for orphaned grandchildren. The granny clubs generally have around 10 members, who meet formally once a month. Each meeting includes education and information on a different topic – at one meeting, it might be about HIV medications and ART (Anti-Retroviral Treatment); at another, the topic might be nutrition and how to cook healthy meals inexpensively. The time is also used to make friendships, share problems, and offer solutions.
Durgamma told me, as Abraham translated, “Sometimes we play games or sing. We are older people who have watched our children die. We share our joys and our sorrows.”
I talk to Durgamma in her home
In spite of their plight, Durgamma’s two grandsons are some of the luckier children, for they have a grandmother to live with. Others without any extended family – or families who refuse to take them in because of the stigma of AIDS – end up in institutional homes or simply on the streets.
They are the missing face of AIDS, these children left behind.