by Rupa Chinai
– India –
During the course of the past decade, women diagnosed as HIV/AIDS patients in Mumbai have been trying to say something important that deserves close attention. These widows, whose husbands died from AIDS, claim their experience is quite contrary to Western science, which insists that HIV is a “death sentence.”
These AIDS widows have become “long-term survivors.” For more than 12 to 14 years, they have been living well and have not felt the need to start anti-retroviral (ARV) therapy. It was through good counseling groups that they found hope. They got access to good doctors whose detailed and regular check-ups caught infections early. They also found a support group among women with similar afflictions. Thereafter, a “positive attitude” became the buzzword in their lives.
These women share their first hand experiences of this disease. They believe that their husbands did not suffer an early demise because of AIDS. They say their men died because of addiction to alcohol, gutka (chewing tobacco) or cigarettes, coupled with a careless attitude towards medication and failing to adopt changes in their lifestyle.
They extend this logic to their own situation. When first detected as HIV-positive, their vulnerability to cold, cough, fever and diarrhea increased. They also suffered from weight loss. These women believe that their physical vulnerability was more an outcome of their tension, fatigue after caring for their sick husbands and economic burden rather than AIDS induced infections.
Lata, who was diagnosed HIV-positive 14 years ago says, “Coming to terms with our HIV status took us two to four years. We needed time to work out the anger we felt towards our husbands, the rejection of our families and to think quietly about how to deal with the fear.”
Lata and other women have learned in the past decade that it is important to take care of their health. Sharda, another member of the group, says that she does not eat out and carries her own drinking water wherever she goes. This has greatly helped in reducing bouts of diarrhea, cold, cough and fever. The group members are no longer careless about medication and do not sit home alone and mope. If they cannot find paid work, they volunteer to help other AIDS patients.
“What kills people is the lack of hope, tension, the absence of family and social support and our economic plight. With all other illnesses, even TB or cancer, everyone wants to help. HIV makes everyone turn away. At this time, if you find even one person who can help you stand on your own feet, you have a chance,” says Sharda.
Their diet primarily consists of dal (lentils) and rice. Seasonal fruits and green vegetables that they desperately need are a rare luxury but they are learning that food that is cheap, seasonal and locally available is a powerhouse of energy that can boost the body’s immune system in fighting AIDS-related opportunistic infections. A daily diet consisting of a banana, some lemons and a couple of dates, along with seasonal fruits and vegetables like gourd, is adequate.
The mega bucks spent in the name of AIDS have not reached them. Attending tailoring classes and receiving support in finding work is helping these widows to start taking charge of their lives. Some key issues that would make a difference in the care and support of the AIDS afflicted, they say, is ensuring access to TB treatment along with nutrition support for those on therapy; the presence of well-trained doctors in rural areas; security for their children and organizational support in solving legal and other disputes with family members.
This phenomenon, taking place within the general population in Mumbai, is important to monitor. Several support groups for AIDS patients pioneered this approach and noted a regression of the disease. It also found some important clues to why HIV positive patients progress into disease.
Following a cohort of 900 HIV patients from within the general population in Mumbai, the Salvation Army for instance, found that only 15 had died in the course of a decade. The main causes of death were TB or malnutrition, often coupled with alcohol abuse amongst the men. Such evidence calls for broad-based interventions, through policies that focus on access to real nutrition (as opposed to chemical-based supplements) and comprehensive primary health services, which include addiction treatment.
This implies the need to take a hard look at our trade and development policies (which have caused the loss of local food self-sufficiency) and our narrow approach to health issues through “vertical programs” – all of which are leading to adverse health outcomes.
Fixated on the sexual transmission theory of HIV/AIDS, mainstream Western science has resisted such evidence and held fast to the view that the answer to AIDS lies in condoms, sex education and ARVs alone. The public messages, communicated at great financial expense, insist that HIV/AIDS spreads through multi-partner sexual activity and bodily fluids, and knows no barriers of class or social status.
Now the wheel has turned full circle and the AIDS lobby is steadily backtracking on its earlier pronouncements. Forced to come down on its earlier inflated estimates of the numbers affected by HIV/AIDS, it now admits that AIDS assails only the marginalized and specific segments of the population.
This reversal is evident in a new report by the Asia Commission on AIDS, tabled with the UN in March 2008. It states that the epidemic is restricted to specific and vulnerable groups engaged in “high-risk” activities. Such people, says the report, are those who engage in unprotected paid sex (commercial sex work), injecting drug users who share contaminated needles and syringes, and men who have unprotected sex with other men (MSM).
This assertion of the Asia Commission appears to be correct and conforms to the trend noted in cities like Mumbai during the course of two decades. Here, the reality on the ground has clearly shown that those who suffer a rapid downslide into AIDS and death are primarily those from the low socio-economic group. Commercial sex workers, injecting drug users, homosexual men and alcoholics appear to be more vulnerable.
The intense pressure of drug companies to launch patients into ARV treatment is meanwhile, not without problems. Evidence from Mumbai’s government run J.J. Hospital reveals that the drug is helping patients whose CD4 count falls below 200. Access to treatment however, is still not available to the most marginalized segments such as commercial sex workers.
The hospital data also points to the severe, toxic effects of ARV drugs. Patients who are poor and malnourished cannot maintain long-term drug adherence. It points to gross and widespread malpractice within the private sector, which is giving patients wrong prescriptions through sub-therapeutic drug combinations and dosages. Data already shows that there is resistance to the first line of ARV drugs and a second line of treatment is now required.
Undoubtedly, patients who seek ARV treatment must have the right to access available treatment especially when it is a matter of life and death. All the same, these drugs do not offer a cure and they are expensive to sustain on a life-long basis, even when it is the cheaper, generic version. Besides, there is no guarantee of indefinite free supply of anti-retroviral therapy and most importantly, it is suicidal to promote it when the infrastructure to administer and monitor it is nonexistent in most developing countries.
For these reasons, ARVs can never be the drug of first choice; the quest for solutions through research in traditional medicines is a crying need of patients in developing countries.
There has been far too little analysis of what these strands of information from the ground mean within the wider picture of health. Surely, they force one key question: Assuming that the better off segment of the population is as sexually active (maybe even as promiscuous) as the poor, why are we seeing two different trends, where only the poor are more vulnerable to AIDS?
Is it time to re-evaluate the theory of sexual transmission of this virus as the only factor leading to immune suppression and a disease called AIDS? When we do not have a cure for AIDS, why are we assuming to zero in on only one factor of causation? This rigidity of approach has done great disservice to the cause of public health, including AIDS.
There is a crucial link emerging between nutrition and immunity. A joint statement by two UN agencies – the World Health Organization and the Food and Agricultural Organization – confirms that “A good diet is one of the simplest means of helping people live with HIV/AIDS and may even help delay the progression of the deadly virus…The nutritional aspect of HIV/AIDS has been ignored for a long time. The attention was always focused on drugs… The message was always: ‘Take two tablets after meals’. But they forgot about the meals.”
Unfortunately, this insight has not translated into action. For AIDS patients in Mumbai who desperately need access to a nutritious diet of fresh seasonal fruits and green vegetables, such food is a rare luxury. The millions spent in the name of AIDS have facilitated the survival of the AIDS lobby but not the patients. Our policy planning has yet to understand the vital role of local food self-sufficiency, national food sovereignty and public education on what the body needs to stay healthy.
– This is the third and concluding part of a series on the Indian experience with AIDS. Part I addressed the issues of inflated infection projections and poverty. Part II tackled the new directions necessary for proper treatment. – Ed.
Photograph by flickr user pulguita used under Creative Commons licenses.
About the Author
Rupa Chinai is an independent journalist based in Mumbai, India. She has been writing on health and development issues for the past 25 years and her work has appeared in some of India’s leading English language daily newspapers and websites as well as foreign publications. Her basic education was obtained in Mumbai and opportunities for further studies and exposure came through prestigious awards such as a journalism fellowship from the Harvard School of Public Health in the US, amongst others. She is co-author of a book on rural women’s health issues and is currently engaged in writing a book on northeast India, based on 20 years of travel and work in that region.
I find it very dangerous to suggest that ARV therapy should be optional for HIV positive patients. Doubts in “Western” science and medicine and relying on lifestyle, diet and “traditional” medicines for AIDS treatment have already costed tens of thousands of lives in African countries, particularly South Africa. There are no articles in the peer-reviewed scientific journals suggesting reconsideration of cause, routes of transmission, diagnosis or treatment of AIDS. I think that doctors who encourage their economically disadvantaged patients to bypass the best available therapy without engaging them in an officially sanctioned and closely monitored clinical trial deserve their licences revoked. I also find it very dangerous to suggest that only groups with low socioeconomic status are vulnerable to AIDS. So far, HIV hasn’t shown mercy to anybody and the available data don’t suggest that it would at any point in the future.
Thank you for your comment Maya. In India, the public health system adheres to guidelines recommending that ARV treatment be available to those patients whose CD4 cell count, a measure of immune status, falls below 225. Such patients receive free ARV treatment from the public health system. I think this approach is justified because our national public health system has many urgent priorities other than AIDS.
I have already pointed out the mayhem created by private practitioners who are launching patients on ARV without following prescribed regimens, leading to a need for second line treatment. It is extracting a huge cost for patients and the public health system. Pharma companies and Western donors are pushing ARV without ensuring the placement of infrastructure and trained professionals to monitor its impact. Neither is there assessment of whether malnourished, poor patients have the means to sustain this lifelong therapy with its many adverse side effects.
Indian patients do not have blind faith in Western medicine. We have a highly advanced system of traditional medicine – ayurveda or sidha – which is being used by many AIDS patients with good results. Lack of funds and official support are preventing measurement of its impact through the tools of Western science. When AIDS patients began to fall prey to rapacious quacks, public pressure forced the government to support trials in alternative medicine at designated public health centres in Chennai or Mumbai.
The main cause of death amongst AIDS patients in India is TB and malnutrition. Hence, prompt treatment of opportunistic infections through comprehensive primary health care is vital. India now has a nation-wide programme to provide free TB drugs, through DOTS. Delivery of the regimen remains a problem because it depends on a neglected primary health system that is in shambles. A major felt need was nourishment for patients on the TB regimen and some Mumbai NGO’s have stepped in to provide it. Until the many missing linkages are in place, the massive investment in the TB programme cannot deliver the results we seek.
I have followed with interest writings on the history of health in Africa. Could Africa’s current health crisis be traced to the impact of the Structural Adjustment Programme (SAP), which destroyed local food self-sufficiency, created aid dependency and plunged it into political, economic and social chaos? Could it have affected at least three generations of Africans – particularly in sub-Saharan Africa – where populations became vulnerable to malnutrition, the onslaught of deadly epidemics that lasted for decades and resulted in depletion of the mother’s nutritional pool and loss of immunity in subsequent generations?
Today’s Africans are in a state of total panic because of the reality they see. It might however serve you well to look at the experience of other developing and colonised nations, and consider their experience. It may provide insights into what brought us to this present situation.
The information that AIDS is primarily affecting a “high risk group” and the lower socio-economic strata of society in India, is based on the findings of our nationally appointed experts. This corroborates what we have long seen at ground level. Until it launched into SAP in the 1990’s our country policies protected our local economy and food sovereignty. It is perhaps for this reason that our rural populations, barring a few pockets, experienced local food self-sufficiency and remained nutritionally stable. In the most backward district of my state, Maharashtra, the hospital data shows that the number of AIDS affected is so far not high.
However, given the way we are plunging into globalization that benefits the elite, which is forcing our farmers to commit suicide and resulting in migration into cities, we are also fast heading into social and economic chaos, that will result in more AIDS cases and the rise of all other killer diseases.
I think it is urgent for developing countries in Asia, Africa and Latin America to share their experiences and evolve their own solutions. The West and its battalion of scientists and researchers have so far dominated the discourse on health but they have little experience of developing country realities. Their prescriptions focus on ‘vertical programmes’ and technologies that promote their own industries and do little to improve our health infrastructure and services. Their own experience of improvement in health focused on better housing, clean water and sanitation, nutrition and livelihood, but that approach is dismissed as being too expensive for us! And we are foolish enough to follow this line of thinking even though the money is coming out of our own pockets!
With regards,
Rupa Chinai
Yes, I agree. Western outfits don’t suit us in India. I have a friend who died of AIDS and his wife got HIV +. However, all these years we find her quite good in health and strong psychologically. In fact she took upon herself all the family responsibility, got her two sons married and looks after her mother-in-law and her own mother too. And she is a working woman. Even we all thought that some day she will also go the same way. But nay… she has no symptoms. So I feel it is psychological state, family & social support, her own intrinsic strength and her good diet ..all combines to prolong the gap between HIV infection and AIDS symptoms. Few years ago, I did a story on a pathologist Dr Geeta from KEM. She developed an integrated system of HIV/AIDS treatment with the result her patients lived longer and the span of onset of AIDS symptoms considerably extended. Foreign funds and all is big racket for people who jumped into the fray to make good of the opportunity.
Best
Surekha Sule