By Michele Leight

The most encouraging news about the HIV/AIDS epidemic in India came within the first minute of my interview with Dr. Peter Piot, Executive Director of UNAIDS and Assistant Secretary General of the United Nations. I had cited a World Bank prediction of 35 million infected with HIV/AIDS in India by 2005. Dr. Piot said he had not seen such numbers and called the dire predictions "an exaggeration." "Now it is about 4.5 million, and perhaps by 2005 there will be a million more," said. Dr. Piot, who has just returned form a conference on AIDS in India. However, he said that immediate action is urgently needed to to avoid such possibilities in the future.

India's first Parliamentary Conference on HIV/AIDS on July 27th, 2003 was reported in The New York Times the following day. The report stated that 1,000 Indian leaders, from the district to the national level, together with AIDS advocates, activists and NGOs had come together in an unprecedented gathering to confront HIV/AIDS. Prime Minister Atal Bahari Vajpai had called upon India's citizens for "a complete absence of prejudice against affected persons." Ms. Nafisa Ali Sodhi, Chairperson of the NGO Action India (Aids Projects), responsible for the creation of "Ashraya" in New Delhi, attended the conference.

Dr, Piot was pleased with the conference:

"Breaking the silence on HIV/AIDS is very important. It is a good sign that Indian leaders are committing themselves to the situation. I believe it is real commitment. The conversations I had in India were not just talk," he said.

While Africa dominates the media's focus on the global AIDS epidemic in the United States, there has been a noticeable increase in coverage on AIDS in India this year. I mentioned to Dr. Piot that Rory Kennedy's series "Pandemic/Facing Aids" sponsored by the Bill and Melinda Gates Foundation aired on HBO (www.hbo.com) for an entire month of July on the East and West Coasts, in English and Spanish. The series featured 5 countries battling with HIV/AIDS epidemics, including India. I said Ms. Ali hopes that the series will be sponsored in India one day, where there is such an urgent need for more media coverage of HIV/AIDS. Dr. Piot said "The media play a vital role in the prevention of HIV/AIDS."

After addressing the Parliamentary Conference in New Delhi, Dr. Piot visited "Ashraya" Holistic Aids Care Center at the invitation of Nafisa Ali Sodhi, and Dr.Piot was clearly moved and impressed by what he found. (See The City Review article.)

"The stigma associated with AIDS is a problem in India," said Dr. Piot. When I suggested that if the leaders of the country held such a high-profile meeting it must surely be a sign that action will now be taken, his response was:

"The stigma and shame associated with HIV/AIDS persists at every level of society in India which impacts on politicians," said Dr. Piot. "It is the most important barrier to break down."

I asked Dr. Piot how this could be done:

"Do what Nafisa is doing at 'Ashraya.' Fight stigma and prejudice wherever you find it. Put a human face on AIDS. Raise awareness. There need to be hundreds of 'Ashrayas' all across India. I have visited a few AIDS care homes in India, but many more are needed."

Not that long ago, when AIDS first surfaced in the United States there was stigma and fear surrounding HIV/AIDS here in New York as well. But for the most part that has changed, thanks to awareness, though there are usually still hushed silences when the topic of AIDS is raised in areas outside New York. In other parts of the nation fears, secrecy and prejudice persist, mainly due to lack of accurate information and moralistic attitudes.

"Moralizing does not work anywhere in the world, especially with the young when it comes to HIV/AIDS," said Dr. Piot.

Dr. Piot and I discussed how New York has the highest number of people living with AIDS of any American city. I mentioned to Dr. Piot that many people who want to help have found it much easier discussing AIDS in New York than in India, where they feel the invisible wall of resistance to the subject.

Dr, Piot suggested some solutions for this:

"India needs more AIDS activists - and more role models. A cricketer, someone who would stand up and say: 'I have AIDS.' The 'Magic Johnson' approach."

The day after Dr. Piot's interview (August, 27th, 2003), I watched "Jimmy Kimmell Live" from Hollywood and he was very emotional when he introduced Magic Johnson, who he said was his favorite athlete. I remembered Dr. Piot's admiration for Johnson as he spoke to the audience of his continued commitment to basketball. The next guest, Gary Carlsen, a popular young basketball player, said he had taken a $7 million pay cut to play on Magic Johnson's basketball team, the Los Angeles Lakers. "I love this guy," said Carlsen, "He is the best. No one will ever come close to how great 'Magic' was as a basketball player."

In an emotional moment, Magic Johnson, who cannot play basketball for any length of time because he has HIV/AIDS, said:

"Boy, when I heard that "Shak" (Shakiel O'Neal, a famous basketball player) and Gary were coming to play on the team, I looked up at my jersey and said: 'Maybe I can play for 10 minutes with these guys.'"

Magic was one of America's top basketball players and at the height of his popularity and fame when he discovered he had AIDS. One mistake in the prime of his life severed his ability to do what he loves most - play basketball. He did not hide; he brought his illness out in the open to show the public and other people living with HIV/AIDS that life - if not competitive basketball - can still go on after AIDS. Johnson is partial owner of the Los Angeles Lakers and remains involved in basketball, encouraging children to take up sports, choose safe lifestyles and stay away from drugs.

Dr. Piot and I moved on to the business and private sector in India and how they could be encouraged to become more involved in funding AIDS programs. I mentioned the long tradition of private and business philanthropy in the United States, and often when I am soliciting for donations here I realize that the perception of Indians by many Americans is that they are predominantly wealthy. This surprised Dr. Piot as much as it surprises me. One trip to India would be sufficient evidence that there are millions of poor who are on the verge of starvation.

Dr Piot made a very interesting observation:

"There are strong tax incentives for businesses and individuals to give to charitable causes in the United States. And wealthy Indians do give. The Tatas, for example, won an award for the work they have done in HIV/AIDS. But in general, in the private sector in India, if the businessman and the individual had the same tax incentives as their counterparts in the US, you would see much more giving. But India will still need the international community to help. It is a very big problem."

We discussed sex education in schools at length. As far as HIV/AIDS goes, the young are the most vulnerable everywhere in the world, not just in India. In the United States there is mandatory sex education in schools, both public and private, and it is considered a moral and ethical duty to inform children about the dangers of sexually transmitted diseases and HIV/AIDS, usually by 7th Grade. Dr. Piot said it is the same way in Belgium, where his children attend school. Even with education, the young need constant monitoring, as the global statistics for new infections amongst the young (13-25 year olds) are rising. This includes the United States.Unprotected sex with an infected person is the main reason for this, followed by injected drug use (heroin).

"There is no discussion about promiscuity, using protection and sex in Indian schools and even in the home between parent and child," said Nafisa Ali Sodhi in a recent McNeil/Lehrer Newshour program on AIDS in India, which aired August 6th, 2003 on Channel 13 (www.pbs.com). I mentioned to Dr. Piot that Ms. Ali said in the PBS interview that she had done AIDS related advocacy among sex-workers in the red light district and she had seen teenage schoolboys in the area.

I asked Dr. Piot if he thought sex education at an early age is the reason why our young in the West are more at ease discussing HIV/AIDS and STDs, and why they do not stigmatize or blame people with AIDS :

"Definitely," came the response."They are more understanding because they know more. HIV/AIDS can be present in fathers who have not used protection who then transmit it to a faithful wife. 50% of the global HIV/AIDS infections are in women; in India it is 40 %. Mostly monogamous and increasingly middle-class women," said Dr.Piot.

A discussion on condom use followed, and I mentioned that condom sales had fallen in India in the past year, which again was an unusual statistic. Bill Gates and many concerned advocates have raised the issue of preventing HIV/AIDS through the use of condoms - which are effective in blocking the transmission of a deadly virus. India, with a population of 1.2 billion, has many critics who denounce condom use because in their view it encourages promiscuity. For others, condoms indicate the presence of disease and birth-control. I spoke to Dr. Piot of the rural farming communities where a farmer once told me that his children (all 12 of them) were his security in old age:

HIV/AIDS is at present an incurable disease, and the majority of Indian youth - especially in rural communities where the disease is now spreading rapidly- are unaware of the dangers of contracting AIDS through unprotected sex or injected drug use.

I asked Dr. Piot why the young, even in developed nations were getting HIV/AIDS, even after sex-education and warnings:

"The young think they are invincible. 'It cannot happen to me' is the way they think."

Dr. Piot returned constantly to the stigma and the prejudicial attitudes that condemn people with HIV/AIDS in India to a life of hopeless isolation. I described to Dr. Piot my first awareness of stigma when I was a child growing up in India, when Mother Teresa opened her first leper colony in Asansol. I heard people speak of leprosy as being dangerous and contagious. They feared proximity to lepers and shunned them in the streets. My mother, of course, went and nothing happened to her, but it was worrying. Soon people grew to understand that leprosy was not easy to catch, and that it is treatable with medications, thanks to the high-profile advocacy on their behalf of people like Mother Teresa. Knowledge reduced fears and lepers were no longer as marginalized.

The mention of Mother Teresa prompted Dr. Piot to say:

"In other countries the church and some Imams are helping address the issue of AIDS, and the Buddhist monks in Burma are caring for people with HIV/AIDS," but he added with deep regret: "No religious leaders in India are involved in fighting the stigma and shame of HIV/AIDS - none at all."

I conveyed to Dr. Piot my deep concern for the future of India's poor who are infected with HIV/AIDS. The poor always seem to fall through the cracks of peoples' memories, no matter how horrific their circumstances. I said I feared the dreadful scenario where only the wealthy and middle-class Indians would be able to afford anti-retroviral medications, leaving the poor untreated and uncared for:

"You are right about this. It is happening in India already. The rich and middle class find treatment and care - the medications are available in India. That is not a problem. But the poor are being neglected," said Dr. Piot.

Dr. Piot was pleased when I brought up the article by The New York Times that stated that the first pharmaceutical company to offer anti-retroviral medications to Africa for $1 a day at the height of the international patent debate was Cipla, an Indian pharmaceutical company: "on humanitarian grounds" said its chairman, Dr. Yousef Hamied. Dr. Piot of course knew about this, but he said:

"Not in India. The poor are not getting the AIDS medications in India, and they are manufactured in India. I see them everywhere." It is hard to explain to people in the West that even at a generic price the poor in India cannot afford the AIDS medications.

I raised the issue of pharmaceutical patents and how Brazil had threatened to break patents and produce the drugs themselves when they were confronted with an AIDS epidemic and a large segment of their population who simply could not afford the medications, at any price:

"India does not belong to the WTO (World Trade Organizaton) so patents are not a problem," said Dr. Piot.

"Why then can they not be given free to the poor?" I asked.

"Because there is high sales taxes on anti-retrovirals in India," said Dr. Piot, "Which are used for social programs."

As it relates to Dr. Piot's concern for the poor of India who are not getting treatment and care, I will share a statement made by Dr. Hamied, the Chairman of Cipla, one of India's most successful and highly respected pharmaceutical companies, at the company's annual general meeting in September, 2002 (www.cipla.com):

"I would like to reiterate that we are not against patents per se and that the inventor has a right to just and fair rewards. Over the past few years, Cipla has also obtained a number of patents, both in India and abroad. Our fight is against monopoly caused by pharmaceutical patents resulting in high and unreasonable pricing of drugs, especially new drugs. Our fight is against denial of drugs to the masses at affordable prices," said Dr. Yousuf Hamied.

As far as India's poor are concerned, "affordable" would have to mean "free" in order for them to be treated with anti-retrovirals at all.

As I wrote up the interview with Dr. Piot to commemorate the launch of our support charity, I remembered the sunny day two years ago when Nafisa and I drove through the utter chaos of mid-day Delhi traffic on a baking hot day. The purpose of our 45-minute journey was to visit the building and grounds described by Ms. Ali as "The perfect place for my shelter for people with AIDS," as though private citizens provided sanctuaries every day.

One of the photographs I took that day is included below, of Nafisa with the tiny cow we found in the empty entrance hall of the proposed shelter. It was not amused by our intrusion and hurtled outdoors as fast as it could. Nafisa spoke of the function of each room as we went around together, and I hoped for her sake that this dream would materialize. At that time rent appeared to be the barrier, and my heart sank at the thought of the property remaining empty when so many people needed care:

"It will be called 'Ashraya,'" she said happily, never doubting for a moment that she would achieve her goal.

The Indian Government came up with the rent for the AIDS care home in Rajokari on the outskirts of New Delhi that is now called Ashraya; NACO (India's National Aids Control Organization) has sponsored beds, and the building is buzzing with educators, clinicians, and caregivers ready to serve people in the Delhi community suffering with HIV/AIDS. After struggles and obstacles - throughout which she remained steadfastly optimistic - Nafisa's dream has become a concrete reality. I have never read a happier email from her than the one describing Dr. Piot's recent visit to "Ashraya."

Dr. Piot's views on the stigma and prejudice associated with HIV/AIDS, inspired me to look in my own back yard in New York. I found a segment of the New York population that needed our attention. We have decided to incorporate the young, minorites and women of New York into our agenda at Ashraya-New York. All is explained in the "Our Advocacy in New York" section of this website.

I know Nafisa Ali Sodhi and all those who work so hard at Ashraya in Delhi will share my joy in hearing Dr.Piot, the Executive Director of UNAIDS, say:

"India needs hundreds of 'Ashrayas' across the country. Let me know if I can help in any way."

We look forward to taking you up on your offer Dr. Piot......many thanks for the interview!