A surgeon who contracted HIV in the course of his work 14 years ago describes his journey from despair to positive action: he now treats people with HIV and has founded an organisation for positive people
I graduated as a general surgeon from Sion Hospital, Mumbai, in January 1991 and worked there as registrar in the Trauma Care Unit in the early-1990s, a time when HIV was literally unheard of in India except for a case that was diagnosed in Chennai.
I had heard about HIV for the first time in 1983-84 during my second year MBBS exam. Actually I had prepared a short note on HIV, which at the time was known as Gay Related Immune Deficiency (GRID) syndrome. About the only thing I knew for sure about HIV was that it destroys the human immune system and the person eventually dies of multiple infections. There was hardly any more information to be got from our medical books.
Working in the trauma ward, where the workload was pretty high, put us at risk of exposure to HIV without us ever realising it. HIV testing was not available in Mumbai then, and the disease was spreading without anyone noticing it. As we know now, that was the asymptomatic phase of the disease.
I do not recollect any risky blood exposure during this period of my residency.
On October 17, 1994, I had a bout of high-grade fever for just one day. It disappeared with a simple antibiotic course but after this episode I started feeling weak. I had to cut down on my daily exercise and running as I began feeling increasingly weak. From January 1995 onwards, I started having low-grade evening fever, poor appetite and recurrent tummy disturbances.
By May 1995 I had lost about five to six kilos of weight. I used to fall asleep in my clinic but continued working since I did not know what was wrong. On July 16 the same year, I was admitted to a hospital in Ratnagiri, where I was working at the time. I forced the doctor to start an intravenous line to counter the dehydration. When my fever did not respond to routine treatment, a physician was called in. After examining me he advised an Elisa test.
Nobody told me the result of the test but the next day I was shifted to KEM Hospital in Pune for treatment under Dr V R Pai. I knew him to be an HIV medicine consultant because we had arranged a lecture on HIV in Ratnagiri in June 1995. This gave me some inkling about what was the matter with me and what lay ahead. A Western Blot test confirmed that I was HIV-positive.
When I asked my physician about my diagnosis, he told me curtly that it was HIV and I had AIDS.
It is very difficult to explain my feelings when I heard this. Overall, I experienced a feeling of horrible loss; I was unable to take on any family responsibilities, my career was lost and so were 30 years of education. I felt ashamed and was unable to face my wife and my parents. I thought it was better to die than to live with this disease.
Though I suffered innumerable opportunistic illnesses, that included cerebral atrophy, I still did not die. One day, lying in bed in the afternoon, a thought struck me: maybe I was not destined to die with HIV.
This was sometime in July 1997. The thought made me decide to fight back. The first thing I decided to do was to take my health in my own hands and be aware of every little thing that goes right or wrong in my body. This was the first step towards achieving mind-body co-ordination. I listened to no one who gave me advice, including doctors and the medical books. I started living by my own intuition and by trial and error.
By the grace of God I have improved over the years and I am still working after undergoing 14 years of ART and seven regimen changes. Nobody ever thought that a person with cerebral atrophy would ever be able to work. I am very proud to say that despite being HIV-positive I have been working as a clinician for positive people.
In May 2002, after seven years of struggling with my health, I started a clinic only for positive people. In August 2003, I started an NGO called Guruprasad. It’s a group of positive people ready to help others. In April 2004 we got the Drop in Centre project from Avert Society, Mumbai, for the whole of Ratnagiri district. In October 2005, we established a sub-centre at Chiplun under the same project. We implemented the Avahan project of the Bill and Melinda Gates Foundation from January 2006 to October 2007 in Ratnagiri district. We were also given the Access to Care project by the Global Fund for AIDS, TB and Malaria in March 2005.
Guruprasad has been honoured with the Motilal Joshi Award 2005 of the Rotary Club of Western Maharashtra, the Exemplary Service Award 2006 of the Parkar Medical Foundation, Ratnagiri, Special Recognition Award by the local MLA in December 2006, Pulotsav Samaj Ratna Award, July 2008, and the Lokmanya Tilak Award of the Konkan Marathi Sahithya Parishad in August 2008.
Working in the field of HIV has given me a different kind of satisfaction and sense of achievement though I still miss my first love, surgery. An HIV-positive surgeon has lots of difficulties practising his profession: big hospitals will not employ him and he will be barred from operating. Even if he is allowed to continue working, he will have to reveal his status to the client, which becomes a breach of confidentiality for the doctors apart from the fact that no patient will agree to be operated on by an HIV-positive surgeon. A truncated career is a stark reality for any healthcare worker who tests positive.
Currently there are no guidelines or fixed policies for the rehabilitation of doctors who test positive. Recent studies done in Spain and elsewhere in the Western world have shown that when positive surgeons and positive dentists operated on negative individuals the risk of transmission was absolutely minimal. Only one case has been reported in France among thousands where HIV was transmitted from the surgeon to the patient. But in our country, it is unlikely that positive doctors will realise the dream of a professional career in my lifetime.
Our country has a complex healthcare system. We have luxurious private clinics and hospitals run by trusts that offer quality healthcare. And we also have government-run hospitals, public health centres and rural healthcare centres frequented by a large chunk of the population that are poorly managed due to lack of manpower and funds.
In the latter environment, Universal Barrier Protection (UBP) is unaffordable and this exposes doctors as well as patients to HIV. Sometimes doctors themselves are not keen on UBP for every client as that increases the cost of treatment. Though sex is the main mode of transmission of HIV infection, we must work harder to plug the gaps in our healthcare facilities to reduce the risk to healthcare personnel. Doctors who test reactive due to occupational exposure to HIV should have a fallback scheme in place so that their careers are not destroyed. Doctors who know that they are reactive should have enough courage to accept their status, be open about it, and try and find alternative careers such as working for positive patients. After all, being HIV-positive gave me an insight into this disease and has certainly helped me in management of HIV patients who attend my out-patient’s department.
I appeal to the Indian Medical Association and other professional medical bodies to formulate a scheme as suggested above. I also appeal to healthcare workers who test positive to come together and work for the benefit of the needy and suffering. After all, what you give is more important than what you earn.