HIV patient needs compassion and not just treatment

A two-day Conference Ceremony of HIVe  aMysuru ART (Anti-Retroviral Therapy) Update 2017 was inaugurated at SDM-IMD auditorium in Mysuru yesterday. The Conference is being organised by Asha Kirana Trust, which is working for the cause of HIV/AIDS patients and people living with AIDS since decades. In this article, Sujata Rajpal traces the roots of Asha Kirana Trust in Mysuru and speaks to Dr S.N. Mothi, one of the Founder-Trustees. Now read on. — Ed.

By Sujata Rajpal

Every big thing starts small. In 1997 when Padmashree Dr. Suniti Solomon (who documented the first HIV positive case in India) visited Mysuru on an invite from Lions Club of Mysuru West to conduct awareness sessions on HIV, little did she or anyone else know that they were taking the first step in the formation of an institution called Asha Kirana Charitable Trust Hospital.

The first step led to another and then another. Encouraged by the response to the awareness sessions in colleges and hospitals, the enthusiastic members of the Club decided to take the initiative forward which had the potential to grow big entailing the involvement of other sections of society. As a result, in 2003 Asha Kirana Charitable Trust was formed. The founder trustees are Dr S.N. Mothi, Dr R. Mahesh Kumar, K.S. Guru Raja, R. Sukumar, Paramjit Singh (members of Lions Club of Mysuru West), Raian F. Irani and Hem Chand Jain, a metal merchant.

Thanks to philanthropists like Hem Chand Jain, for seven years, the Trust functioned from the first floor of Mahaveer Jain Hospital at Bamboo Bazaar. Rightly said, when intentions are noble, the entire humanity comes forward to help realize the common goal. Dr. Mothi shuttled between his own paediatric clinic in Yadavagiri to the HIV centre in Bamboo Bazaar to consult HIV patients while the other trustees provided the needed support.

Spouses too pitched in to help create awareness amongst the general public. Under the rural outreach program, 160 villages were covered and similar sessions were conducted for slum dwellers, factory workers and college students. The sessions were held anywhere and everywhere — under the trees, at office canteens or wherever there was an interested audience. The team had a common goal — to create awareness about HIV. It was the first time anything of such magnitude was being done in Mysuru to spread awareness about the deadly disease.

But apart from medicines and treatment, HIV patients require counselling. Isn’t it? “I acquired my skills as a counsellor before I became HIV physician,” says Dr. Mothi.

One day, the Trust received an SOS from a private company in Mysuru that one of the workers is being ostracised by fellow factory workers for his HIV positive status. No one wanted to sit with him, even accept files from his hand. Quickly, awareness sessions were organised for the employees of the factory. The efforts paid off, the HIV positive worker was not only accepted by his colleagues but the labour union also raised funds for his medication and treatment. “This case boosted us to stay steadfast in our journey,” says Dr. Mothi, his eyes gleaming with hope and joy.

The next step was a full-fledged hospital for AIDS patients. In 2003, one-acre industrial land was granted for this purpose for mere Rs. 3 lakh and with the contribution by well-meaning citizens, the construction of the hospital was started. Jain community, Rotary clubs, Darla family and other philanthropists supported in a big way. Every journey is bound to have hiccups especially so when one is dealing with emotions.

One day Dr. Mothi entered the ward of Mission Hospital to see Raju, a four-year-old child bleeding profusely from nose. There was blood all over. It was a terrible sight to see him in pain but it was even worst to see his mother howling. “Dr. Mothi please save my son, he is my only support system,” she cried nonstop.

“I couldn’t sleep that night. I wasn’t able to take away the image of a mother pleading me for her child,” recalls Dr. Mothi. Dejected, he informed the Trust that he wanted to stop working for HIV patients because he couldn’t see children dying but after having come so far, no one wanted to give up. Immediately, the money was pooled in to provide medication for 30 kids. “Today, Raju is a 19-year-old man and is not only supporting himself but also his sister,” says an emotional Dr. Mothi.

Inaugurated in 2004, Asha Kirana Hospital is the first standalone hospital for HIV patients in Karnataka. Initially there were apprehensions — the place will get stigmatised, it may not work as a model. Thirteen years later, it is a 30-bed hospital in addition to a two-bed ICU facility. After the withdrawal of National Aids Control Organization (NACO) grant, it was turned into a not-for-profit hospital. Currently, there are 9,000 cumulative HIV numbers including 230 kids at Asha Kirana. Every 2nd Sunday a paediatric clinic is held to engage children in high-energy activities.

Thirteen long years, what keeps you going? In answer to my question, Dr. Mothi tells me about a young child who was brought to the hospital in coma. Within three weeks of medication and treatment, the child bounced back and was all over the hospital winning the hearts of other patients with his cherubic innocence. “Such patients give me strength to continue in this journey,” he says with a smile.

In 2004, when the hospital was being constructed, Krishna was undergoing treatment for HIV. He had saved Rs. 1 lakh but didn’t want to spend on his treatment. Instead, he wanted to donate the money to the hospital. After much persuasion, he agreed to use the money on his medication. Cut to the present. Krishna is a healthy man in his 40s and is productively employed. He is married to a HIV positive like him. The couple has a child who is HIV negative. Krishna’s benevolence continued. He later adopted a girl child and they live happily.

“And I am not alone in this journey,” Dr. Mothi clarifies quickly. “Nothing is one person’s charisma, my 35-staff members are my pillars of strength and are torch bearers,” he says.

How do you keep your staff motivated? “I can’t help asking when I see smiles of contentment on the faces of para medical and other staff of the hospital. Dr. Mothi pauses briefly before answering, “I don’t believe in leading from front because leading from the front will create more followers but leading from behind will create more leaders.”

But all said and done, there is still a stigma attached to HIV. How do you handle that?  I am curious to know. “Stigma is there until one enters the hospital but not after that. It is like any other hospital without anyone looking down upon the patients,” he says.  Dr. Mothi has been practicing since 1981. He says, paediatric is not just treating but raising kids, connecting with them, touching them and helping the care-givers to do better. “I acquired the real wisdom much later. More than medication, an HIV patient needs compassion.” He signs off.