Nov 30, 2008

Lifestyle - Hope after HIV


With nutritional management and medical care, a HIV positive person can live a reasonably long and healthy life. A message of hope on World Aids Day which falls tomorrow...

Good nutrition and medical care can increase bodily strength and delay the onset as well as the frequency of opportunistic infections.

In popular imagination, being HIV positive is seen as a premature death sentence, ridden with extreme pain and suffering. What is less well known is that with good nutritional management and prevention of infections, a HIV positive person can lead a long and reasonably healthy, normal life.

Early detection is crucial. If the virus is detected early on in an otherwise healthy person, if the person can afford two square meals a day, and if quality medical care is available whenever opportunistic infections occur, then a HIV positive person can live for several years even before ART (Anti Retroviral Therapy) becomes necessary. Contrary to popular perception, management of HIV does not begin with ART drugs. However, ART, together with continuing nutritional and medical support can further increase lifespan by 20 years or more.

This is not just a story of distant possibilities. I met several such positive people on a recent visit to Guntur and Rajahmundry. Both towns lie in the high prevalence HIV zones of Andhra Pradesh: districts Guntur and East and West Godavari.

Sarita is a healthy young woman of 33 with smiling eyes and a pleasant face. She tested positive nearly 13 years ago after her husband died of AIDS. So far she has not needed ART as her CD 4 cell count has remained well above the threshold of 200. CD4 are a variety of white blood cells that form the internal defence mechanism of the human body; they generate an antibody response to attacking organisms in the blood. It is these cells that the virus attacks, compromising the body’s immune system, and making it vulnerable even to those pathogens that would not cause disease in a normal, healthy immune system. The infections resulting from these pathogens in HIV positive people are called opportunistic infections. The frequency of opportunistic infections in a HIV positive person depends upon the bodily strength of the host and the virulence of the virus. Good nutrition and good medical care can increase bodily strength and delay the onset as well as the frequency of opportunistic infections. ART drugs, once initiated, suppress replication of the virus and delay weakening of the immune system.

Dr. Lalita, Sarita’s supervising physician, says that Sarita can carry on for another three years without needing ART. Once she begins ART, Sarita can live for another 25 years. Altogether, Sarita’s lifespan may well equal yours or mine.

Vital need

I met Sarita at a HIV community care centre in Guntur run by a church based group, the National Lutheran Health and Medical Board. Sarita and other HIV positive people like her have been coming to the centre for many years to understand how to manage their condition. Another faith based organisation in the region provides a fixed food ration of 10 kg rice and two kg of dal to HIV positive persons. This ensures that those with low incomes or even with no income manage to have two square meals a day. Nutritional intervention studies suggest that early improvements in the energy and protein intake of people living with HIV help to build their reserves and reduce their vulnerability to opportunistic infections. Sarita is not well off, but together with the free ration, good medical care, and her family’s acceptance and economic support, she has managed to remain healthy.

Seetha is a new patient at the Guntur centre. At 26 years, she had three children; the youngest she carried in her arms. She discovered she was seropositive when she went to the government hospital for a tubectomy. She had acquired the virus from her husband who tested positive more than two years ago but did not disclose his positive status to her. Dr. Lalitha examined Seetha and found no physical problems with her. She referred Seetha to the government hospital for a CD4 cell count test. It is vital to monitor CD 4 cell count in HIV positive persons so that ART can be started on time — neither too early nor too late. CD4 cell count is an expensive test and none of the patients who come to these centres can afford to get the test done privately. To get it free from the government hospital, the organisation and the local network of positive persons had to wage a long but successful battle. A strong network of HIV positives has grown in Guntur. This network, named “HAPPEN”, ensures that patients receive the services they are entitled to, especially free CD4 testing and a regular supply of ART.

So now, when Seetha goes to the government hospital to get her CD4 count tested, an experienced member of the HAPPEN network will accompany her for guidance and support.

I know that Seetha is in good hands. Yet, I am overcome with anger and regret, knowing that the virus that entered Seetha’s fragile body could have so easily been prevented. But Dr. Lalitha, who has no doubt seen hundreds of Seethas, allays my helpless rage with her quiet determination: “Now that she has come here we will prolong her life”.

Management of opportunistic infections is another critical component of care for prolonging lives with HIV. Not all patients can be as fortunate as Sarita and Seetha in keeping acute opportunistic infections at bay. Venkatesh, 37, one such patient at the Rajamundhry HIV care centre which is part of the town’s old and historic Lutheran General Hospital, tested positive in 2005 and acquired the virus through blood transfusion during a surgery. Dr. Ramiya, the gentle young doctor at the centre, walked me through Venkatesh’s clinical case history: 9/2/07: cough with expectoration, fever and weight loss; 3/3/07: CD4 count down to 51, TB lymphadinitis, ART started at Kakinada hospital; 13/3/07: TB node swelling, gastritis, mouth ulcers; 11/4/07: jaundice; 14/4/07: rashes on chest and arms, oral candidiasis; 22/5/07: loose motions; 23/5/07: admitted with acute diarrheal disease; 4/6/07: cough, LN swelling; 18/6/07: pain over LN, cough, shivering; 3/7/07: loose motions 6 episodes; 3/8/07: loose motions; 8/9/07: pain in the throat; 5/11/07: itching and rash; 3/2/08: oral thrush; 19/5/08: tingling sensation in legs; 16/6/08: body itching; 30/7/08: pruritis.

Venkatesh has survived all these infections, many of which were potential killers, and still lives. His TB was cured and he regained much of the weight that he had lost. He has more strength now to fight against opportunistic infections. This is what quality medical care can do.

These centres run on limited resources with small teams of one doctor, one counsellor, and two or three nurses. At the Santhinilayam Hospice in Chilakaluripet, there is only a part-time doctor. Limited in-patient facilities are available for patients who need temporary hospitalisation. All three centres together manage around 3,000 HIV positive persons. All services are free or at very nominal costs as most patients cannot afford to pay. Patients like to come here because of the good medical care that they receive, the encouraging absence of stigma, and the pleasant and courteous staff. They are not made to feel like medical “untouchables”. Despite frugal staff strength, Lalitha, Ramiya, Ranga Rao and their competent teams live and breathe human rights as they handle their HIV patients with an innate, natural dignity and infinite compassion.

Comprehensive HIV management also requires that care and prevention go hand in hand. Around 86 per cent of HIV incidence in India is due to unprotected sex, primarily between sex workers and their clients, and also between MSMs (men who have sex with men). Men who engage in risky behaviour pose grave risks of infecting their spouses and unborn children.

Putting others at risk

What explains the behaviour of these men? I tried to find out more from Rajayya, a lorry driver who dropped in as a new patient, along with his wife, at the Guntur centre. They were both HIV positive and he was also afflicted with another sexually transmitted disease. Dr. Lalitha and I spoke with him about HIV prevention. Did he know how HIV could be transmitted? Yes, through blood transfusions, infected needles and by visiting sex workers, he replied. Did he know how sexual transmission of diseases could be prevented? Yes, by using condoms. Did he visit sex workers? Yes, sometimes, he admitted. Did he use condoms? No, not with sex workers, but with his wife he did… sometimes. Had he seen the baskets of condoms that are available at roadside dhabas on the highway? Yes he had seen them. Why did he not use condoms consistently? No response. Could he tell us what he knew about how exactly condoms prevent HIV from being transmitted? He looked lost and shook his head.

Venkatesh on the other hand had explained to me quite well how the virus was contained in semen and could be deposited in the woman’s body if a condom was not used. Not surprisingly, Venkatesh’s wife is still HIV negative!

Use of condoms

While I cannot draw conclusions from these two cases, I find them compelling examples for advocating aggressive and scientific promotion of condoms not only to prevent new infections in high risk groups, but also to protect the regular partners of those who have already acquired the infection.

This essay is as much about persons living with HIV as about their care providers and the services available to them. But, there is also another objective. Before my visit, I was told that the Board was finding it difficult to keep all their centres afloat and were considering closing down a few of the services. I hope that by writing this article I have convinced them not to do so.