The hands that heal
We've come a long way since India's first AIDS case was reported in Mumbai, in 1986. Despite greater awareness about AIDS and better facilities, challenges and hurdles in the form of social stigma and expensive life-saving medicines prevail. As World AIDS Day falls on December 1, Soma Das went behind the scenes with three life-savers who've been treating AIDS cases for decades now
Dr IS Gilada
Dr IS Gilada (55), President, of the AIDS Society of India and founder of Unison Medicare and Research Centre, has been at the forefront of the first AIDS campaign, since 1985. Dr Gilada, who was working at Sir JJ Hospital at the time, was a leprosy, skin and STD specialist. He recalls reading about news related to AIDS since 1981. From 1985 onwards, he started working on creating awareness among sex workers and in general, and collecting samples for blood testing. “At the time, people were confident that AIDS wouldn’t come to India as we have ‘culture’ and ‘the institution of marriage’.
They thought it was a publicity stunt and even abused me publicly for taking up the issue. But thanks to the awareness campaigns, the first HIV AIDS testing facility was made available at Sir JJ Hospital. When the first case was diagnosed in 1986 at Jaslok Hospital, there was special vigilance as the case happened in Maharashtra. Sir JJ Hospital was the first AIDS clinic in the city. Initially, there was no grant and we had to work on our own,” shares Dr Gilada. He recalls that the times were challenging and he felt he was battling two viruses -- AIDS and the government.
In 1990, he resigned and opened a clinic at Opera House; it had to be shut in a day, as the other doctors in the area were wary of contracting AIDS. “That’s when a donor approached me and with the funds, we started Unison Medicare and Research Centre in 1994. It publicly opened in 1995 and we haven’t looked back since,” he adds. At Unison, all facilities are under one roof: “Be it counselling, X-rays or sonography, there’s no window shopping required.
Patients don’t have to wait for reports; they are kept ready between 1 pm-5 pm, keeping in mind that 70% patients are from other parts of the state/country and incur expenses to stay back,” he states. He is also full of praise for the drug companies that provide medicines at subsidised rates: “Indian pharmacies have saved millions of lives without making innovative products.” While there are 2.4 million infected patients in India (National AIDS Control Organisation), Mumbai alone has more than 2 lakh HIV Positive patients, emphasises Dr Gilada. While the city numbers seem huge, Dr Gilada says that the new infection rate is low. He admits that tending to AIDS patients is a challenge but stands vindicated with both his daughters keen to follow in his footsteps.
>> The doctor initiated the Saheli Project where sex workers are called sahelis and they choose a leader or tai (Marathi: sister); eight tais are monitored by a bai. They supervise condom distribution, HIV testing and other aspects. “Strangely, with more education comes more discrimination. There is more stigma about it among the educated and well-heeled,” says Dr Gilada. >> Dr Gilada also started a consumer mobile clinic where the clinic visits areas across the city. “In Pune, we have a community kitchen for AIDS patients as well,” he explains.
Dr JK Maniar
A consultant in HIV Medicine at Jaslok Hospital and Research Centre, Dr JK Maniar (69), was prompted by colleagues in 1986 to take up challenges in the management of HIV infected patients. His specialty qualification was for Sexually Transmitted Infections (STI), HIV being one of the STIs. This former Professor of Dermatology and STI at Grant Medical College had set up the management of HIV patients, out-patients and in-patients, at the government-run GT Hospital back in 1986. Maniar spent 27 years treating HIV patients and has managed more than 86,000 HIV patients.
He also discovered the HIV-2 infection existence in Asia. “As a physician treating HIV patients, I have to be professional and not commercial to deliver efficient healthcare. Chronic HIV infection is similar to hypertension and diabetes, requiring life-long treatment,” he says. The doctor goes on to spell out how time is important to answer queries of the patients with compassion. Not every patient has a sound economic background and hence, it’s important to be considerate. Patient confidentiality is another must. “At times, we have to offer family and marriage counselling to patients and discuss parenthood options,” he shares. Dr Maniar believes a lot is yet to be done. “Discrimination at the work place has reduced, but it exists.
The healthcare cost is also a barrier despite cheap antiretroviral drugs being widely available. Side effects of drugs in a few patients are also a concern. The number of free anti-retroviral therapy centres might be increasing but more is needed. Nearly 50% of HIV infected individuals do not know their HIV status and play a significant role in transmission of HIV infection,” he adds. According to him, the AIDS statistics are grossly under-reported: “Many more HIV patients are coming forward from rural and urban areas with growing awareness and social acceptability. An increasing number of new HIV infections is being discovered recently, as a result of medical examination for insurance and corporate screenings, etc.”
Dr Raj Harjani
Dermatologist and HIV/AIDS specialist Dr Raj Harjani (60) is a consultant at Jaslok Hospital and Head of Department at Rajiv Gandhi Medical College; he also runs Ashirwad Hospital in Thane. Dr Harjani has been at the forefront of treating AIDS patients for two decades. In the 1980s, he was treating skin-related issues and STDs. Since he treated several sex workers, he got involved in HIV AIDS care. “By 1992, the first HIV AIDS patients had reached Sir JJ Hospital where I was working. Very few practitioners were aware about AIDS management at that time.
By 1995, we began offering counselling services. But we were helpless as people were dying and there were no treatments available,” he reminisces. Harjani is happy that things have improved: “Medicines help patients live a long life. Due to use of condoms, the chances of contracting it have reduced. There is better awareness about it as well.” Interestingly, Dr Harjani admits that it is among the uneducated and less affluent that the stigma is less. “Rich and educated people don’t like to discuss such things,” he admits. Several challenges, are due to the prohibitive cost of medicines: “If an entire family is infected, the medicines (even though subsidised) are unaffordable for all members.” The doctor hopes that medical reproductive advances pending approval might see an HIV-positive father and HIV-negative mother deliver a child without mother and child contracting HIV.
While AIDS is treatable, once you begin on medication, it’s important to ensure that this continues throughout one’s life. “We counsel patients and give them space before seeking their consent. The side effects of the medicines are such that they may cause infections and affect immunity, causing a person to fall sick. To start and discontinue is an unpardonable mistake,” the doctor emphasises. Dr Harjani has treated patients even from far-off Punjab (who head to the city due to the fear of stigma). At his 10-bed hospital, he has a team of specialists who can address all the challenges related to AIDS, from a nephrologist to a gynaecologist, under one roof.
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Did you know?
The AIDS topic received a lot of media coverage between 1986-1990. There were controversies as well with Bhagwan Rajneesh or Osho claiming an eventual AIDS holocaust.