A medical miracle

During the 90s, most HIV+ children in the United States were not expected to survive more than a few years. If a child did survive beyond a short period, people considered it a “medical miracle.”

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At one center today in the US, the average age of HIV-infected children is 13 and rising, according to a New York Times Magazine article published this summer, because of the new line of AIDS drugs like protease inhibitors and other developments in the treatment of the disease.

In India today, the HIV+ children who are provided with nothing but the first line anti-retro viral drugs (drugs that were used a decade ago in the US) are surviving and thriving beyond the expectations of their caregivers.

Deepti has lived in an AIDS orphanage since she was eight years old. She is on the verge of reaching her teen-years.

How can you help?

Many of the readers of this blog have asked: How can we help the people in the orphanages and centers profiled on Lives in Focus. It is obvious but what they need most is money to provide the treatment, the care and the activities to keep the children healthy. Others need funds to help pay for representation in the courts.

Lives in Focus has compiled a list of places you might send a check. Remember the exchange rate between the dollar and the Indian Rupee turns even $5 dollars into a windfall for these places. The centers below are also international tax-deductible charities. Please do mention that you heard about them through Lives in Focus:

• Network of HIV Positive People (Family Counseling Center)
  ATTN: M. Swapna
  H.No. 8-3-167/30, Venkateswara Housing Society, Erragadda
  Hyderabad-38, India
• Lawyers Collective HIV/AIDS Unit
  Programme Management Unit (PMU)
  ATTN: Anand Grover
  Jalaram Kripa, Ground Floor
  No. 61, Janmabhoomi Marg, Fort
  Mumbai 400001 , Indiaemail: aidslaw@lawyerscollective.org
  website: www.lawyerscollective.org
• Freedom Foundation Bangalore
  ATTN: Ashok Rau
  Office - 180, Hennur Cross,
  Bangalore - 560 043. India
• Freedom Foundation Hyderabad
  ATTN: Dr. Troy Cunningham
  21 Cariappa Road, Bolarum
  Secundrabad 500 010, India
  Telephone: 011 91 40 2786 2148 or 011 91 40 2786 5530

The AIDS toll on children

Here are a few staggering facts that Ann M. Veneman, the United Nations Children’s Fund executive director, tossed out this week hoping to shake the world out of its complacency:

• “Every minute of every day, a child dies because of AIDS.”
• “Every day, there are nearly 1,800 new HIV infections among children under 15.”
• “Today, an estimated 15 million children have lost one or both parents to AIDS.”
• “Less than 10 percent of pregnant women are offered services to prevent transmission to their infants.”
• “Less than 10 percent of children who have lost parents or who have been made vulnerable by HIV/AIDS get needed support or assistance.”
• “Less than 5 percent of children in need of treatment for HIV/AIDS receive it.”

Slideshow: HIV positive orphans forming family bonds

The United Nations Secretary-General Kofi Annan added that “youth make up half of all new HIV infections worldwide, with a young person contracting the disease every 15 seconds.”

Mr. Annan and Unicef’s Ms. Veneman provided these statistics as they announced a new campaign that focuses on giving children living with the HIV virus a greater chance for survival while also trying to slow the rate of infection in that age group.

“Twenty-five years into the pandemic, this very visible disease continues to have an invisible face … a missing face … a child’s face,” said Ms. Veneman. “They are missing parents … missing teachers … missing treatment and care … missing protection … missing many things … except for the devastating effects of this disease.”

A harsh reality that Lives in Focus contrasts here with photographs of HIV+ orphans who are receiving treatment and care…receiving protection… receiving an education… receiving the things that should be every child’s birthright.

Condoms and morality

In my previous post about HIV/AIDS prevention public service announcements, I noted that they are “as direct as they can be in a culture that still shows very little kissing in its movies and television programs.”

But India is not alone in letting “morality” issues affect its fight against HIV/AIDS. Just last year, Texas voted to adopt health textbooks that focus on abstinence and barely mention the role condoms can play in preventing sexually transmitted diseases.

The Texas Board of Education even considered one textbook that asserts that “respecting yourself and getting enough rest are two steps to preventing sexually transmitted diseases,” according to the San Antonio Express-News. As the second-largest buyer of textbooks, decisions made by the Texas Board have tremendous influence across the country.

While abstinence appears to be a good idea to conservative Americans, the reality is far from what they envision. An eight-year study released earlier this year by researchers from several universities, including Columbia, found that people who pledge to protect their virginity until marriage are almost as likely to contract sexually transmitted diseases (STDs) as kids who make no such pledge.

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“The sad story is that kids who are trying to preserve their technical virginity are, in some cases, engaging in much riskier behavior,” such as oral and anal sex, said Peter S. Bearman, a professor at Columbia’s Institute for Social and Economic Research and Policy, and the lead author of the study told the Washington Post. “From a public health point of view, an abstinence movement that encourages no vaginal sex may inadvertently encourage other forms of alternative sex that are at higher risk of STDs.”

President George W. Bush pledged $15 billion over five years for AIDS treatment and prevention in countries where the disease is running rampant. But one of the conditions of the legislation requires that one-third of the prevention funding go to abstinence-only programs.

Government-funded domestic HIV prevention programs that encourage people to use condoms are required to point out condom-failure rates despite scientific studies that show that condoms are 90 percent effective for preventing the transmission of HIV and other sexually transmitted diseases like syphilis and gonorrhea.

American television commercials bombard viewers with images of women with ample bosoms and long legs to sell everything from beer to cars. But the mere mention of the role condoms can play in protecting against sexually transmitted diseases is considered by many people (including President Bush) to be a moral lapse.

Understandably, the far more traditional Indian culture is now struggling to adapt to the need to openly discuss sex education with its youth. In this video clip, Anand Grover, an attorney and project director for the Lawyers Collective HIV/AIDS Unit in Mumbai, India, talks about this hurdle.

The Collective’s attorneys represent indigent people in court to help win them access to medicines or to protect their jobs against discrimination. The Collective is also trying to influence Indian legislation to make access to health services a government obligation.

This is a public service announcement

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This summer in Hyderabad, I walked past shiny new malls and mammoth glass buildings housing the growing number of outsourced American companies; through parks where men furtively sought other men for a quick, no-names-asked encounter; down roads lined with women selling their bodies.

I paced the platforms at train stations; interviewed people in their one-room homes in the slums and was hosted in an affluent neighborhood. In those 12 days in Hyderabad, the main city in Andhra Pradesh, a state that ranks among the top 5 Indian states with the highest rate of HIV infections, I saw one single poster with a message about HIV/AIDS.

The poster appeared, of all places, in front of a private hospital. I don’t recall seeing any public service posters in Bangalore, Chennai or Mumbai.

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The AIDS campaign appears to have shifted onto television, which reaches the richest and poorest audiences in India. Sometimes, several slum-dwellers share a single television or servants and their kids sit on the floor at an employer’s home to watch some of the popular programs. People find a way to watch television.

A television-based AIDS awareness campaign might actually be more effective in presenting an accurate and understandable message. Vivek Divan, a former project coordinator for the advocacy group Lawyers
Collective HIV/AIDS unit in Mumbai, India, told me in 2004 that posters left too much to the imagination.

“There is a problem of not making HIV real for the reader of these messages,” said Divan. ” It presented
messages in very abstract ways—a painted slogan. It doesn’t make any sense to me when I pass by it on the railway tracks.”

The advertisements I watched on television stressed that this was a disease everyone needed to fear. They depict middle class families that many Indians recognize as their own discussing this fast spreading
disease.

These Public Service Announcements appear on Doordarshan’s local and national channels. Doordarshan is one of India’s most watched stations. Many of the spots were dubbed into six local languages.

The messages are about condom usage; how HIV is transmitted; and about living and working with
people who are living with AIDS. The spots are as direct as they can be in a culture that still shows very little kissing in its movies and television programs.

The BBC World Service Trust created the following spots for India’s National AIDS Control Organization (NACO) and Doordarshan. The BBC World Service Trust owns the copyright but allows non-commercial use.

The caretakers

I hate to admit this, but here goes: at the end of each interview session, I would surreptitiously pull out my hand sanitizer and slather on more than the recommended “thumbnail” size amount.

I also struggled to control my career-long habit of chewing on my cuticles when on deadline or under stress to avoid having any cuts on my fingers. And I consider myself educated about how the HIV virus is transmitted but I still was paranoid.

The health workers and people who take care of family members who are positive are under constant scrutiny by those around them.

Slideshow: The Caretakers

One doctor said that his parents wondered why he would treat these kinds of patients when he could easily be minting rupees in a private practice. And of course, they feared for his health. When we interviewed people in their one-room homes in the slums, they kept peeking out their door to make sure their neighbors weren’t eavesdropping. Mothers and fathers traveled vast distances with a sick son or daughter to be as far from their home towns where they might be recognized.

This series of photographs is about the caretakers, who must ignore the hostility and suspicions of these neighbors, friends and other family members fearful because they provide medical services, food, shelter or emotion support to those with AIDS or those who have tested positive for the HIV virus.

Ambulance ride

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My 5 1/2 year old daughter entered kindergarten a few days back. The most exciting part of the experience so far for her has been riding the school bus.

That reminded me of how the HIV+ orphans at Bangalore’s Freedom Foundation get to and from school.

After this video, you may want to revisit a previous one about the kids at play.

Narasimha, a 30-year-old HIV+ auto-rickshaw driver, wonders about his future

Narasimha, a 30-year-old rickshaw driver in Hyderabad, found out he was HIV+ five years ago when he contracted TB.

He admits that he visited commercial sex workers a number of times. His wife, who he says he did not infect, left him shortly after finding out what exactly he had contracted.

After starting anti-retroviral treatment two years ago, he has slowly regained his strength and is back at work.

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In a haunting twist, his male passengers often ask to be driven to prostitutes around Hyderabad’s parks and main train stations.

I asked him if he warns them about the possible consequences. He shook his head, explaining that upon returning to work after his recovery from TB, one of his first passengers asked to be taken to a commercial sex worker.

When Narasimha tried to warn the passenger of the risks he was taking, the man yelled at him: “What do you know? You have it?”

Alarmed by the prospect of his HIV+ status being exposed, and his livelihood threatened, Narasimha backed off. Since that experience, he quietly fulfills his passengers’ requests.

In this video clip, Narasimha explains how he copes, knowing his body will build up resistance to the ARV treatment and that the next level of treatment will remain out of his grasp.

Exposing an Indian middle class illusion

The illusion that the Indian middle class is largely untouched by the AIDS epidemic is beginning to crack as people from this socio-economic group find friends and relatives close to them suddenly struck down by disease.

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The common perception is that commercial sex workers, truck drivers, and “other uneducated people” are the ones who invite the illness by their wanton carelessness.

But doctors who cater to middle and upper class Indians increasingly have their hands full.

Dr. Uttara Murthy, a Bangalore-based psychiatrist, counsels private patients who have found out they are HIV+ and are struggling with that fact.

Dr. Murthy counseled her first middle class HIV+ patient eight years ago. Her practice keeps her busy.

Video blogging

Sorry for not having any updates for a few weeks. I have been stumped by some techical difficulties.

At this moment, I am in the workspace of 4 pioneering videobloggers who have kindly helped me solve the technical issues that have riddled the videoblogging portion of the project.

So thanks to the following people for getting the project back on track: Jay Dedman, Ryanne Hodson, Michael Verdi and Josh Kinberg.

And if you want to get into videoblogging and want to avoid the problems I had, check out their online videoblogging tutorial at Freevlog.

Look for a new video per day!