Sometimes, one incident can change the course of a person’s life forever. It can nudge you to examine the deeper purpose of your life and take the road less travelled to bring about a change. Director of ASHA Foundation Dr Glory Alexander experienced one such incident. ASHA Foundation is a Bangalore-based non-profit working for the welfare of HIV-positive individuals. In an exclusive interview with Soulveda, Dr Glory talks about her work at ASHA and what keeps her going.
Was there any incident in your career that made a lasting impact on you?
I had just joined a Bangalore-based hospital as a consultant in medicine in 1987. One day, during my rounds, I found a patient who was breathless. His tongue and his nails had turned blue and he was going into respiratory failure. But I could not figure out what the problem was. When I was about to leave, he asked me, “Doctor, could it be AIDS?” I did not know what to say. In 1987, AIDS was not even in the medical syllabus. I went to the library and read about the illness in The Oxford Textbook of Medicine. And it all fell into place.
The patient had the typical symptoms of pneumocystis pneumonia (PCP), a condition that generally occurs in people who are HIV positive. Without wasting more time, I sent his blood sample to Christian Medical College, Vellore, and started treating him for PCP. About 36 hours after we had admitted him, he passed away. Later, the blood test results confirmed he had indeed been HIV positive.
It was such a sad way to die–in an alien country, thousands of miles away from his home. I couldn’t stop thinking about him long after he was gone. This case affected me deeply.
You set up ASHA Foundation way back in 1998 when AIDS was a relatively new concept in India. What motivated you?
I had always thought that I would take up social work after I retire. Back then, AIDS had a huge impact on the medical community. It was a problem that haunted people. It got me thinking, ‘Why wait till I retire? Why not do something now?’ Then, I started treating AIDS patients at a Bangalore hospital after 1994. I was discharging a couple after treating them, when they confessed to me that they had no place to go as their family had disowned them. I realised how grim the situation was. That is when I thought I should do something about it. It was a huge decision for me to leave the safe environs of a hospital and step into the unknown. Yet, I felt compelled to do it. Four years later, I started ASHA Foundation.
Could you tell us about the initial days of the foundation?
In 1998, we saw few cases as AIDS was still new. But there was a growing concern that the disease would soon spread. So, I felt the need to provide a range of services to address the threat of misinformation and stigma. I travelled to Chennai to study the AIDS helpline set up by the state government. Then, I returned to Bangalore to raise funds and set up a helpline here.
When I was in the hospital, patients were waiting to see me. But once I started the foundation, I found myself waiting for corporates to provide me with funds. That was a big change for me. It made me more human and humble. I have learnt so much from these men, women and children.
HIV/AIDS has a social stigma and discrimination associated with it. How did you tackle it?
It was bad. At one point, there were hoardings put up in the city that carried the image of a fire-breathing dragon and the words, ‘HIV AIDS, the land of no return’. I remember reading the news of a mother and her child being burnt alive in a village in Tamil Nadu because they were suspected to have been infected. Then, the government and the NGOs started sensitising people. I too engaged in some awareness programmes for the society as well as the media.
In the course of your work, you must have faced several challenges. Could you tell us about them?
Watching patients die was terrible. Stigmatised families would quietly take the bodies and cremate them, fearing public shaming. Then we found out that western countries had found medicine for AIDS. Though we could import the drugs, it would have cost us Rs 25,000 to 30,000 per patient for a month’s treatment. Considering each patient needed lifelong treatment, it was not feasible.
Around 2000, we had started getting some drugs through foreigners who were working with charitable trusts and institutions in India. The National AIDS Control Organisation (NACO) also became very active. Today, if we can say that AIDS is a manageable disease in India, it is not only because of the drugs, but also the involvement of government. By 2004, the government had opened Antiretroviral Therapy (ART) centres where the drugs were given free of cost. Simultaneously, pharma companies too had been working towards getting the patent from the foreign countries. They had started manufacturing drugs in India, thereby solving the cost issue. These efforts then turned the epidemic from fatal to manageable.
Could you tell me about the approach ASHA takes while treating an HIV positive individual?
At ASHA, patients receive emotional, medical and financial support. Firstly, counsellors help patients cope with the psychological effect AIDS has on them. Then, we assess the severity of the condition and accordingly provide medical treatment. The patients are then referred to support groups where they can meet other patients and help each other cope. The patients are offered microcredit, if need be. They also receive help in finding jobs.
How empowered are HIV-positive individuals today?
When early victims of the disease faced stigma in the society, they started forming their own networks. Today, we have groups like Indian Network of Positive People (INP+), Karnataka Network of Positive People (KNP+), and various other such forums. Their voices have become united and they speak for themselves. These groups also facilitate a special marriage bureau.
There must have been a personal evolution along this journey. What has it been like for you?
Definitely. When I was in the hospital, patients were waiting to see me. But once I started the foundation, I found myself waiting for corporates to provide me with funds. That was a big change for me. It made me humble. I learnt so much from these men, women and children.