2004 Interview with Lawyers Collective HIV/AIDS unit in Mumbai, India

The following is an excerpt from an unpublished interview Sandeep conducted in 2004 in Bombay:

The battle against HIV/AIDS in developing countries will get even tougher starting Jan. 1, 2005. That’s the date the World Trade Organization’s TRIPS (Trade-Related Aspects of Intellectual Property Rights) agreement goes into full force. When the law first went into effect in 1995, it allowed developing nations to produce and sell at lower prices drugs patented by Western companies. This was a crucial exemption that allowed countries like India to make affordable antiretroviral drugs. But soon all countries will have to implement the trade agreement’s full patent protections, pushing the cost of some medications out of reach for the local populace.

"This is not just an HIV treatment issue–it applies to various industries–but it’s a matter of big concern in the HIV context," said Vivek Divan, an attorney and project coordinator of the advocacy group Lawyers Collective HIV/AIDS unit in Mumbai, India. "How will the West’s monopolies in pharmaceuticals patents ultimately impact access to these drugs at a fair cost? There are emerging treatments that over the next 10 years will provide more sophisticated antiretroviral drugs that will be out of reach for people in countries like India."

Divan recently took time to discuss the HIV/AIDS crisis in India, the effectiveness of the government’s efforts, and to layout the issues grassroots organizations will face in the coming years.

Q.  What are some of the most pressing issues facing HIV/AIDS grassroots organization over the next five years?

A.  The delivery of antiretroviral treatments is going to be a key issue in the next few years. How do you build the inventory? How do you build community preparedness? 

Vaccine research is also a great area of concern.  We have guidelines on the ethics of biomedical and behavioral research in India but we also have a history of abuse of those guidelines where subjects of research have been damaged. Women have especially been exploited for contraceptive research. How do you implement guidelines and ensure that researchers follow them?

Another big challenge is that surveillance [statistical surveying] has to improve. I don’t think they have the right numbers. Is it 4.58 million? Is it many more? How can they say that Bihar and Uttar Pradesh have a low prevalence of HIV? How can they possibly be providing such statistics? I know personally of 10 people who are dead in Bihar from HIV and they say they’ve only had 40 cases in the last 10 years. The numbers cannot be so low…

Fundraising–the worst part!

The hardest part of fundraising has been getting IGNORED by most NGOs that study, support or fund AIDS/HIV projects. We don’t feel hurt about not getting any $$$ from them (everyone must ask for $ from them all the time.) We are talking about just NEVER hearing back from them. No words of support, no words of encouragement. NOTHING!

Still, there is one person at the Ford Foundation, a major foundation, who has supported us with comments, suggestions, encouragement, and possibly an assignment in India that is equivalent to receiving some funding. A big thanks to you Elizabeth C.

The next stage of planning: setting our schedule

Sandeep was in NYC this past weekend to give a talk for the Dow Jones Newspaper Fund at NYU. Having the DJNF fly Sandeep out gave us a great chance to begin planning our trip to India. We talked about dates for leaving, interviews to set up, equipment we needed to take, sources to contact, the hardest hits places to visit, airplane and train schedules, etc…

That we have have a lot to do in the next month is an understatement…

SAJA Reporting Fellowships

As a Board member of the South Asian Journalism Association, Sandeep is not eligible to apply for the SAJA Reporting Fellowship. But any other journalists, photographers or documentary-film makers interested in funding for an indepth project about the long-term consequences of the Tsunami should DEFINITELY look into this new fellowship. The deadline is less than a month away, so apply soon!

$3,000…almost to $5,000 goal

We have raised just over a $1,000 in 10 days by letting people know about the project by email, word of mouth and over the Internet. $2,000 more to go…

Grassroots Funding from complete strangers

Despite the previous post, we are simply blown away by the power of the Internet. There are people out there–complete strangers!!–who have opened up their pocket books to support this project. This, in the age of phishing, spyware, nigerian scam email letters, and other nefarious electronic methods to separate people from their saving or identity.

If you are on the fence about providing support, please do. we are still short at this time and need to book our travel. Please donate at deepnews.org If already have provided support, THANK YOU!

Torn about fundraising

This is the first time that we are both involved in fundraising for our own projects. A very difficult experience indeed.

but
mostly difficult because we both ***hate**** asking anyone for $$$. But
so many people have responded with such great words of support–along
with some $$.

Others, both close and dear friends and family,
haven’t responded at all. That’s okay. We dont begrudge them at all.
everyone is busy, everyone wants support for something or another, and
they most likely value other causes more dearly.

it is awkward though, asking friends and family for money.

BBC Interview about grassroots journalism

Just a day after Glenn Reynolds posted a link to this project on his website Instapundit, the BBC called for an interview about the project.

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Grassroots Internet Journalism

Most of the large news organizations–espcially in broadcast–are owned by a handful of MEDIA companies. The criteria for what is considered news has shifted over the years to become more about entertainment news. While some news organizations–like the New York Times–certainly continue to report on critical issues of the day, many topics are not reported in great detail.

We are hoping to bypass the entertainment companies narrow interests to present this topic on the Internet. Grassroots here will mean posting the presentation on smaller web sites run by like-minded people who will tell others about it by email and word-of-mouth. Let’s see how far and wide the story can spread on the Internet.

What the project is about

In March 2005, India passed a new patent law that is likely to have global ramifications in the treatment of AIDS patients—especially those in the developing world—who depend on India’s generic drug industry to provide drugs well below the prices charged by multinational pharmaceutical companies.

In order to join the World Trade Organization, India had to fulfill the obligation to recognize and protect global patents. The bill that was passed in March meets this requirement.

Much of the mainstream press has emphasized a business perspective when reporting this development, focusing on India’s opportunity to tap the Western generic drug market while only briefly acknowledging the potentially devastating impact of the new rule on vulnerable populations.

During the summer of 2005, we plan to create a baseline record that establishes how India’s IV-infected populations depend on the Indian versions of Western patented Anti-retro Viral (ARV) drugs to survive.

The baseline will also establish how they think they will manage as drug prices surge and any stockpiled drugs are depleted.

Using audio recorders, photographs and video, Sandeep Junnarkar and Srinivas Kuruganti (see team information at: http://livesinfocus.org/aids/) plan to document the lives of families struggling to buy ARV drugs to keep a family member healthy; the challenges that stigmatized AIDS patients face in trying to earn enough money to buy the lifesaving treatment; activists desperately searching for new sources of inexpensive ARV drugs or lobbying the Indian government to grant compulsory licenses to continue producing cheap drugs.

We plan to visit AIDS shelters and hospices in and around Mumbai, Bangalore, and Chennai.

The project will harness the Internet to showcase an issue with global ramifications—not just as information but as a way to involve viewers.

A multimedia grassroots expose can completely bypass the traditional media gatekeepers to help people gain awareness of a pressing issue.

We hope the project will not only inform people around the world that India’s new patent law is likely to have a global impact, further aggravating the AIDS health crisis, but also allow them to spread the information widely using built-in Internet technologies.

We also hope the multimedia slide presentation moves them to take the next step by clicking on the links to send emails to the appropriate officials or organizations to acknowledge the potential health crisis.