Opinion - News Analysis   

HIV: financially debilitating as well

Ramya Kannan

The financial burden on people living with HIV-AIDS is enormous.

LIVING WITH HIV is a costly business. A National AIDS Control Organisation (NACO) document records, "HIV is now beginning to be perceived as perhaps a somewhat more manageable, chronic illness, although devastatingly debilitating in the long run." Over the years it has become apparent that the debility is not merely physical; HIV-AIDS delivers an equally crippling blow on the financial well-being of its victims.

For the majority of the estimated 5.7 million (according to UNAIDS) people living with HIV in India, it is a drain on their incomes. Sustaining themselves and their families, which might include other HIV-positive persons, is a daunting task. Many have become impoverished.

A recent study on the socio-economic impact of HIV on the Indian population done by the National Council of Applied Economic Research (NCAER) and supported by NACO and the United Nations Development Programme (UNDP) points to this fact. It highlights "the negative impact HIV is likely to have over the next decade on economic growth and livelihoods of people, particularly the poor, if current trends are not heeded."

In the foreword to the study that examined realities in six high prevalence States, Sujatha Rao, NACO director-general, said: "There are many issues of concern highlighted in this study. The additional financial burden imposed on households with PLWHA [People living with HIV-AIDS] is forcing them further into poverty."

An important indicator was the reduction by around nine per cent in the aggregate income of the PLWHA households surveyed. "This has a devastating impact considering that most of the sample households were from the low income group," she adds. Exactly the point that the PLWHA are trying to make.

Problems remain

While the Government provides anti-retrovirals (which significantly slow down the progression from infection to disease) free of cost in high-prevalence States, the subcontinent has not solved all its problems in this regard. Networks of HIV-positive persons constantly point out that not all persons requiring ARVs have access to them. "Anti-retroviral drugs are a lifeline for people living with HIV-AIDS, you need not die of AIDS as it happens now if you have access to affordable AIDS drugs," said Elango Ramachandar, president of the Indian Network for People Living with HIV-AIDS (INP+).

They have also been pushing for availability of the drugs at the block and village level, as daily wage earners lose a day's wages when they travel to the district headquarters hospital to pick up their quota for the month. "Even those who get free ARVs have to come to the district headquarters hospital to pick up their quota for the month. This means losing one day's wages, paying for the travel up and down and food. It may not seem like a lot of money, but if you are a daily wage labourer it will be a huge expense."

While the costs of the first line of drugs have dropped rather drastically over the years, the other subsidiary expenses of living with the virus are still to be factored in. Apart from the regular living costs, funds have to be found to provide for good nutrition, treatment for opportunistic infections and hospitalisation, if any. "For the first three or four years after I was diagnosed as positive for HIV I was shattered, I could not even work, because of stress. Those years were really tough, I was not earning and still had a family to provide for," says Mr. Ramachandar.

For people on ARVs a good nutritional diet is essential. A supplement of proteins, iron, and other vitamins is difficult to come by for low and middle-income families. "Even if we try to make do with milk and eggs when we cannot afford meat, we have to spend more money than we will spend on food otherwise and on treating opportunistic infections," he adds.

P. Kausalya of the Positive Women Network of South India recounts her experience. Six years ago, around the time she began treatment with ARVs, she came down with cryptococcal meningitis an infection common in HIV-positive persons. This required hospitalisation (in the private sector) for about 15 days, costing her more than Rs.50,000. Meanwhile, she was diagnosed with tuberculosis and was put on treatment for that along with medicines (costing Rs.90 a day) for three months for meningitis. Besides, she had to take a clutch of vitamin tablets and painkillers daily.

"I was able to afford the treatment. But the majority of people living with HIV will be unable to do so," she says. While States have been asked to ensure medicare for persons with HIV, often facilities in government hospitals are insufficient, especially in rural areas, to provide the necessary care, says Ms. Kausalya. "What happens when people cannot afford care in private clinics?"

The NCAER study also showed how, on an average, the per capita medical expenses of HIV households were four times higher than those of non-HIV households. To meet this expense, almost 43 per cent of the households had either borrowed or sold assets. As a result of lower savings and expenditure, dependants in the households such as children, spouses, caregivers, and the elderly were also affected.

Even as the debate about availability of the first line of ARV drugs and costs rages, issues about another "life-and-death" situation are being raised. Those who have developed resistance to the first line of ARV drugs, provided free of cost by the Government, are perforce required to move on to the second line of drugs. They are now demanding that these drugs also be provided free of cost.

"If we cannot access second line ARV drugs now, many of us will not be there to witness the next World AIDS Day," said Umashankar Pandey who had come from Kutch, Gujarat, to take part in a dharna at Jantar Mantar, Delhi, to press this demand. Apparently, the Government, so far, has refused to consider providing the second line of ARVs to HIV-positive people. These drugs cost about 10 times that of the first line of drugs — Rs.8,000-Rs.10,000 a month.

"Even when we initially demanded that the state provide ARVs [first line], the government said it was a dream and would not be possible in India. But that has come through now. The government can work out costs, for at the end of the day, it is about keeping a person alive," Mr. Ramachandar says. "It is ironical that India, a country which has a huge share in the production of generic AIDS drugs globally is unable to supply ARVs to its own people," Jacob John, Associate Policy and Advocacy Officer with INP+, says.

Though currently a smaller group of persons, in comparison to the number of people on first line drugs, have progressed to the second line ARVs, the indications are that the numbers will swell and become an issue the Government will be forced to address.

Call for holistic approach

Again, networks of HIV-positive people call for a holistic approach. Instead of beginning to act as and when people become sick, treatment and support should be provided right at the beginning. Social support systems, including financial support and insurance, must also be provided especially to those in impoverished circumstances.

The models exist, if only one cares to emulate. For instance, in southern Tamil Nadu, an NGO, PWDS, has facilitated insurance cover (primarily medical) for small groups of people living with HIV-AIDS, through a community-based model. The Tamil Nadu State AIDS Control Society is also examining the possibilities of drawing up insurance packages for positive people.

Printer friendly page  
Send this article to Friends by E-Mail

Stories in this Section

Neither new nor heroic
An opaque pricing system
The challenge of Asian security architecture
The U.S. and India — the promise of partnerships against AIDS
HIV: financially debilitating as well
Corrections and Clarifications
Inglorious exit
Forgotten scientist
Skull and bones
"No government will surrender to a terrorist leader"

Copyright © 2006, The Hindu. Republication or redissemination of the contents of this screen are expressly prohibited without the written consent of The Hindu