The life of a social worker in the early years of the AIDS epidemic

Ashok Rau, a co-founder and executive trustee of the Freedom Foundation, a care and support center for HIV positive people, today plays a national role in India’s fight against AIDS. He was nominated by the President of India as a member of the Technical Resource Group on Legal and Ethical Issues of HIV/AIDS and he is a member of the National AIDS committee.

This recognition, however, came after a decade of police harassment and mistrust by neighbors.

Established in 1992, the Foundation was started to provide a treatment program for alcoholics and drug-addicts, but it did not take long to notice a link between addiction and AIDS. In 1995, the Freedom Foundation opened a separate center for HIV positive people—one of the first of its kind in the country.

Ashok Rau

Finding a landlord willing to rent space to accommodate a growing number of patients was a struggle in itself–the only property the Freedom Foundation managed to rent was an abandoned chicken shed outside Bangalore. Rau and co-founder Karl Sequiera, spent months washing away the stench of chicken droppings and working as masons to build livable quarters.

The reality of the epidemic drew patients from all over India, but few doctors and social workers were willing to work at the center out of fear. Rau and Sequiera took on the work themselves, cooking and caring for patients and living among them.

As time passes, it is important to acknowledge the struggles of those involved in the early years of the battle against AIDS in India—much like the National Institutes of Health now honors the work of western researchers by gathering oral histories in which they recollect their roles in discovering the cause of the illness.

Lives in Focus here presents an audio podcast of Rau recalling his life as a social worker caring for HIV positive people at a time when few acknowledged their existence.

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Illustrating how to prevent the spread of HIV

In an earlier post, Lives in Focus featured a prevention program called ASHA (”Hope”), which provides education to young women who are considered at risk because they have little or no education and are likely to be married at a young age.

Slideshow: Illustrating how to prevent the spread of HIV

The program stresses the need for peer counselors to visit people in their own communities rather than bringing them to an office. Another component to this outreach is the use of educational material that requires no literacy skills.

In an age of menu-driven DVD tutorials, simple, culturally recognizable illustrations are effective and inexpensive instructional tools. This series features several scans of the educational material that show how HIV spreads, how to protect oneself, and what adjustments one can make to remain healthy despite being HIV+.

Related Previous Posting: Prevention v. Treatment

A numbers game

In late January, the Chinese government, the World Health Organization and UNAIDS released a report which revised downward the estimate of the number of people living with the HIV virus in the vast country.

The revision states that 650,000 people in China are infected with the HIV virus–75,000 of whom have full-blown AIDS. An earlier study (released in 2003) had reported that about 840,000 people were HIV positive–of whom 84,000 had full-blown AIDS.

The new numbers, according to UNAIDS and WHO, are a result of China’s improved surveillance system. The Chinese Health Ministry expanded the number of sites from which it collects data from 194 in 2003 to 329 in 2005. It has also increased the population groups covered by the system, making the new estimate more accurate, according to the UNAIDS and WHO.

But with 70,000 new infections in China last year, international health organizations warned that the revised numbers leave no room for complacency.

India faces its own surveillance challenges. Political, social and economic issues complicate the process of gathering information to accurately reflect the number of HIV positive people in India.

In this audio podcast, Anand Grover, an attorney and project director for the Lawyers Collective HIV/AIDS Unit in Mumbai, India, addresses the gulf between the Indian government’s statistics and NGOs statistics on the number of people infected with the HIV virus. 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.

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Related Previous Posting: Anand Grover discusses condoms and Morality (Video Interview).

A mother’s love

Slideshow: A mother’s love

Fatima, 35, worries that one day her six-year-old granddaughter will have to look upon her as a mother instead. Fortunately, the child’s own HIV+ mother—Shabana–has remained healthy on an anti-retroviral treatment. As much as Fatima praises God for keeping Shabana alive, she knows that medicines also play a vital role and she is prepared to sacrifice to keep her daughter healthy.

“We will eat whatever we find so we can still buy the medicine,” says Fatima. “God will find a way—we have at least that much faith.”

In this audio podcast, Fatima talks about how her heart pounded when she first learned of Shabana’s illness and how her faith keeps her strong. (Click the photograph above for an audio slide show or here for audio only.)

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Related Previous Posting: Shabana’s hopes (Video Interview)