HIV/AIDS in India: The Wider Picture
- View SourceHIV/AIDS in India: The Wider Picture
Economic & Political Weekly EPW February 7, 2009 79
A slightly different version of this article was earlier posted on
the web site of Women's International Perspective. Rupa Chinai
(rupachinai68@...) is an independent writer on health and
development issues and is based in Mumbai.
Being HIV-positive does not mean death. It is the body's "red alert"
warning that the immune system should be immediately repaired with
nutrition through "real food", and a changed lifestyle. Despite the
enormous amount of money spent by India's AIDS programme, it has
failed to communicate this message.
Many AIDS patients have been driven to commit suicide. An informed
public debate is necessary to deal with the ignorance and prejudices.
On 5 August 2008, a young HIV-positive couple in Mumbai, Babu Ishwar
Thevar and his wife Amothi committed suicide after killing their
three children aged between 6 and 10 years. They had just discovered
that their youngest child too was infected by the deadly virus. The
stigma of AIDS has taken many lives long before the disease itself
claimed them but the extent of such suicides and the reasons behind
them have rarely become public knowledge.
It is not known that AIDS has a critical link to the immune system
and the factors that influence it. Society's limited Understanding of
this disease leads to innocent people paying a terrible price. At a
time when we do not have a cure for AIDS, we cannot assume to know
its cause. Increasingly, voices across the world are questioning the
narrow approach to a single disease, especially the huge financing
for AIDS over all else in basic healthcare. Though welcome and long
overdue, this debate must now move further.
Our approach to this disease needs to change for the sake of families
like that of Babu and Amothi Thevar.#]
In 1993, I completed a journalist fellowship at the Harvard School of
Public Health in Boston, and came back deeply influenced by teachers
such as the late Jonathan Mann, a public health expert with renowned
international experience. He believed that the discovery of a new
disease like AIDS was an opportunity to scrutinize fundamental issues
such as the link between disease and poverty, the need to examine the
workings of the entire health system, access to preventive health
information and the means to support health in all its physical,
mental and social dimensions.
Based in Mumbai, I witnessed the unfolding of the "HIV/AIDS epidemic"
in what was dubbed the "AIDS capital of India" and extensively
reported on it over the course of a decade. At that time, the medical
community shield away from treating this disease. As a result,
patients were in the stranglehold of a small group of doctors that
took every opportunity to fleece, frighten and even conduct illegal
vaccine trials on the patients.
Denied any support, the patients believed that HIV meant death.
Mercifully, that stranglehold was subsequently broken when heightened
international focus widened the circle of medical practitioners and
nongovernmental organisations (NGOs) willing to treat the patients.
One of the few but important gains of the focus on AIDS in India has
been the emergence of a few genuine community based groups for the
first time in public health. Many of them provide an interface
between marginalised groups, the wider community and public health
services. This process empowers those who were previously voiceless
and ignored, and who must continue to receive priority support. This
success however, is marginal in comparison to the enormous havoc this
narrow and ill-conceived focus on HIV/AIDS has created in India's
public health system.
There is an urgent need to expand the treatment to a comprehensive,
primary health-based approach one that takes into account the total
health needs of communities in developing countries that cope with an
already enormous burden from other killer diseases.
Improving the primary health system will have an impact on a range of
these killer diseases, including AIDS. Inflated Numbers Contributing
to this climate of fear and myopic focus were many myths that gained
currency. In particular, AIDS fatality figures were severely inflated.
The past two decades have seen warnings about the huge numbers of
HIV/AIDS infected persons who would "die like flies". The
projections, provided in particular by the Central Intelligence
Agency (CIA), Joint United Nations Programme on HIV and AIDS (UNAIDS)
and the World Health Organisation (WHO), ranged from five million to
20 million estimated cases in India alone. Local and international
groups that questioned the high numbers faced severe criticism and
Ultimately, the sceptics were proved right. The AIDS lobby has since
backtracked on its pronouncements without acknowledging the extent to
which they have misled the public. UNAIDS has now reduced world HIV
estimates from 39.5 million to 33.3 million but still calls for
dramatically increased spending on AIDS from $9 million to $42
billion by 2010 and $54 billion by 2015.
The National Family Health Survey (NFHS-3) was the first to provide
data on what is happening at the general community level and it
forced international agencies to scale down their figures. Estimates
of India's HIV/AIDS prevalence are now 2.5 million, a significant
decrease from the earlier Indian official estimate of over five
million infected. While HIV causes only 3.7% of global mortality, it
receives 25% of all health aid.
Additionally, it receives a large portion of domestic expenditure,
which often exceeds domestic health budgets, says Robert England,
chairperson of the Health Systems Workshop, an independent think tank
promoting comprehensive primary health systems reform in developing
countries. It is important to analyse how these high projections came
about in the first place, and to ask how those in authority accepted
these figures without asking the basic questions voiced within the
community. It is vital to know what is happening on the ground and
discover for ourselves India's true experience with this disease.
During a 2008 media workshop with Asian and African journalists in
Geneva, the WHO placed the blame for flawed Fatality projections on
the home countries.
"The WHO has no mechanism for monitoring numbers and its estimates
depended on the data supplied by the Indian government", it said.
Policymakers in Delhi and Washington had applied universal yardsticks
without examining local geographical and cultural traditions of
health seeking behaviour in developing countries.
India's HIV/AIDS surveillance system drew samples from the following
sources within public sector institutions: Clinics for antenatal
mothers; sexually transmitted diseases (STD) treatment centres; blood
banks; and NGO groups catering to the needs of "men who have sex with
men" (MSM), commercial sex workers and their clients. The problem
with samples taken from these sources is that these segments do not
represent the general population; they represent "high risk groups".
While pregnant women attending antenatal clinics in public hospitals
would come from the general population, they still represent the
lower socio-economic strata. The picture these samples show does not
portray the total image with its manifold nuances.
Typical patients who seek the services of the urban public sector in
India are migrants who come to the cities and live in stressful
conditions. They suffer from malnutrition and carry a heavy burden of
disease that has compromised their immune systems. If they were to
undergo an HIV test, it is likely that it would show a false positive
result because of a cross-reaction due to the presence of other
infections commonly found in developing countries.
Data drawn from the public sector connects with another Indian
peculiarity. Studies have revealed that 70% of Indians turn first to
the private sector when they suffer from a health problem.
They do so because the primary health service offered by the
government sector is neglected and in a shambles. It is only when
they run out of money or suffer the consequences of wrong diagnoses
that patients turn to the public sector hospitals, resulting in the
over-burdening of referral services by patients suffering from minor
problems. Thus, comparative data drawn from the private sector
services, which covers the majority of India's population is the key
information missing in the HIV/ AIDS surveillance systems. The class
of people who come here are better nourished and healthy. HIV testing
done on them may demonstrate different results.
Such comparative data is readily available with all leading private
hospitals in Mumbai, who subject their patients to an HIV test on
admission. The administrator of one leading private hospital in the
city said that the number of such HIV patients found in their
hospital is, in fact, not large. Their numbers are restricted to a
small group of patients who shop around for services in the city's
private hospitals because of the stigma. Strangely, the national
surveillance system has completely left out this vital sector from
Why are researchers and scientists not interested in comparing the
private and public sector data on HIV/AIDS? What makes the better
nourished, wealthier class of people less vulnerable to AIDS and
other infectious diseases compared to the poorer segment of society?
False Test Results
Apart from misleading estimates of those affected by HIV/AIDS, there
is also a realization that an HIV positive test result is fraught
with uncertainties and causes havoc when it shows up in an
In the course of my journalistic work HIV/AIDS patients from across
the country often shared their stories with me. Those were the years
when the hysteria around this disease was reaching its most fevered
pitch and mass HIV testing within the general population was being
encouraged or enforced. The patients however reported that their
experiences did not conform to the tutoring of the AIDS lobby.
Mushtaq's (name changed) experience is consistent with that of the
many "patients" I met. While seeking a work permit for the Gulf, he
tested HIV-positive during a mandatory test. Although subsequent
tests conducted by a reputed private hospital laboratory showed a
negative result, the Gulf Board rejected the "HIV-positive" candidate.
Sadly, stigma from the flip-flop testing still sticks to him wherever
he goes. In another case, a private hospital denied admission to two
pregnant women after a positive HIV test. Their babies were later
administered a course of the toxic and controversial AIDS drug, AZT.
However, a routine second HIV test showed negative results on both
Those interacting with HIV/AIDS patients are well aware of the
innumerable cases of men and women who seek repeated testing at
leading laboratories and still come up with conflicting results.
Cases where a pregnant woman tests positive during her pregnancy and
negative after giving birth have no explanation. There is no
explanation for "discordant couples" wherein one partner is HIV-
positive while the other remains negative despite practicing
The government-run J J Hospital in Mumbai which has documented such
cases, also points to patients who show other symptoms of immune
suppression, such as lymphatic cancer or skin lesions.
Such cases of false HIV-positive results or unusual symptoms are only
the tip of the iceberg. The extent of such incidents remains unknown
because the AIDS lobby and the health authorities have no system for
monitoring such cases across the country or the desire to know why
they occur. These cases however reveal how an HIV test conducted on
those with no clinical symptoms of AIDS can cause havoc in their
lives. In fact, many patients accept their first "HIV- positive"
result as a death sentence.
The poor cannot afford to do a second confirmatory HIV test as per
subsequent WHO guidelines. These stipulate a requirement of at least
three confirmatory tests, to eliminate the possibility of picking up
other infection markers.
They clarify that a single HIV test is not enough to label a
person "HIV-positive". For the poor however, a single HIV test
continues to remain the norm across India and in most developing
The health authorities in Mumbai acknowledge that there is a problem.
A senior official at the Mumbai AIDS Society attributes it to the
many private laboratories in the city that lack accreditation and
technical expertise to assure standardised testing. Beyond the urban
metros, the situation is worse, particularly in the rural districts.
Most developing countries have not built up a cadre of trained
microbiologists or laboratory infrastructure to ensure accurate
The absence of professionals and technology also has an adverse
impact on the monitoring of patients on anti-retroviral (ARV) drugs
Unable to bear the high costs of HIV testing, public hospitals in
Mumbai no longer insist on an HIV test on admission. They rely
instead on clinical symptoms such as repeated bouts of diarrhoea,
fever, rapid weight loss or tuberculosis (TB) the common symptoms
of AIDS-associated illness that warrant suspicion and the need for
a confirmatory test.
Private hospitals in Mumbai, however, insist on a routine HIV test
for all admissions.
At various times fly-by-night NGOs in Mumbai have called for mass HIV
testing. Such insistence of HIV testing serves the interest of test
kit manufacturers but is fraught with consequences for those
subjected to it. Manufacturers of testing kits also admit that the
HIV test is unreliable.
Abbott Laboratories' printed literature states that their product is
not specific to the detection of HIV antibodies. Thus in developing
countries, the poor and malnourished who regularly suffer from
infection and disease are likely to test HIV-positive because the
antigen cross-reacts with the host of infections already present in
Quality of Tests
Scientists have pointed out that false positive- HIV test results may
show up in 70 different conditions, which include malaria, TB or
influenza and even in pregnancy.
Thus the ground reality in most developing countries is that a death
sentence is passed on the basis of a single test conducted by ill-
equipped laboratories and poorly trained technicians who are more
likely than not to have erred.
The test conducted on a poor class of patients who are malnourished
and in poor health is therefore likely to produce misleading results.
Meanwhile, even if a test is clearly HIV positive, it only means that
a person suffers from a severely compromised immune system.
Many eminent western scientists are now questioning the assertion
that sexual transmission is the sole cause of AIDS, raising the
possibility that the presence of the virus merely represents the
marker of a suppressed immune system. The real cause of AIDS, these
scientists say, is the assault of toxins and deficiencies on the
body's immune system.
These factors include antibiotic abuse, recreational drug abuse and
nutritional stress, all of which are major public health problems in
India. Evidence both within India and outside, suggests that the
damage caused to the immune system is reversible even without drugs.
The experience of developing countries shows that the presence of
microbes in the body does not necessarily indicate progression into
disease, for much depends on the status of the immune system.
In Asia and Africa, where TB is rampant, even healthy people are
carriers of the TB germs and may have a positive report if they
undergo a diagnostic test. Their ability to live with the microbes
and prevent the downslide into disease depends on their nutrition and
The same analogy works for AIDS. Africa is a continent in the throes
of AIDS. Health historians say that AIDS in Africa is a consequence
of the depletion of the body's nutrition pool over the generations
and the destruction of the immune system. As sub-Saharan Africa
plunged deeper into the cycle of poverty, malnutrition and civil war,
it also suffered epidemics of Ebola and Marburg or Lhassa fever,
which stayed within the population for decades. AIDS could be the
result of this depletion of the nutrition pool.
Until now, India despite its poverty and malnutrition like many other
Asian countries, has not seen an impact of AIDS similar to that of
sub-Saharan Africa. Barring pockets of malnutrition in tribal areas
of India, the last major Indian famine took place in Bengal during
the British rule. In both cases malnutrition and famine was, and
remains, a consequence of poor public food distribution services,
corruption, maladministration and lack of purchasing power.
The African experience of the structural adjustment programme (SAP)
led to the loss of local food security when international donor
agencies compelled these countries to convert their agriculture to
cash crop cultivation of coffee. The subsequent crash in
international coffee prices plunged these countries into economic,
political and social chaos which in turn led to the health
consequence of AIDS.
India took up the SAP in the early 1990s and similar consequences are
beginning to show here as the country plunges along the path of
unequal economic development, throwing vast segments of the
population into deep poverty. At stake are the issues of local food
self-sufficiency and national sovereignty in determining agriculture
and development policies. It is this wider picture that must now come
Over the past decade, women diagnosed as HIV/AIDS patients in Mumbai
and whose husbands died of AIDS have become "long-term survivors".
There are three factors that have helped these women to live well
without having to resort to ARV therapy. They found support from
women who were similarly afflicted and counseling groups that gave
them hope; through these groups they got access to doctors who
treated their opportunist infections in time and they learnt how to
look after their health through a combination of diet and
When first detected as HIV-positive, their vulnerability to cold,
cough, fever and diarrhoea increased and they also suffered from
These women believe that their physical vulnerability was more an
outcome of the tension, fatigue after caring for their sick husbands
and economic burden rather than AIDS-induced infections. They believe
that their men died because of addiction to alcohol, tobacco,
neglecting to take medicines and refusing to change their lifestyles.
As Lata, Sharda and the others point out, they do not eat and drink
outside (this has helped in reducing bouts of diarrhoea, cold, cough
and fever), are no longer careless about medication and keep
themselves busy by volunteering to help other patients when they
cannot find paid work.
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, has been
very helpful. Some key issues that would make a difference in the
care and support of the AIDS afflicted, the women 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 organisational support in solving
legal and other disputes with family members.
This phenomenon, taking place within the general population in
Mumbai, is important to monitor. 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
This implies the need for 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
programmes", 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
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
marginalised and specific segments of the population.
This reversal is evident in a new report by the Asia Commission on
AIDS, tabled in the UN in March 2008. It states that the epidemic is
restricted to specific and vulnerable groups engaged in "high-risk"
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.
This assertion 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 and commercial sex workers, injecting drug users,
homosexual men and alcoholics appear to be more vulnerable.
The intense pressure by drug companies to launch patients into ARV
treatment is meanwhile not without problems. Evidence from the JJ
Hospital reveals that this treatment is helping patients whose CD4
count falls below 200. Access to treatment however, is still not
available to the most marginalised 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 whereby patients are given wrong prescriptions through sub-
therapeutic drug combinations and dosages. Earlier data shows that
there is resistance to the first line of ARV drugs and a second line
of treatment is 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
lifelong basis, even when it is the cheaper, generic version.
Besides, there is no guarantee of indefinite free supply of ARV
therapy. More importantly, it is suicidal to promote it when the
infrastructure to administer and monitor it is non-existent in most
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.
They raise 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 the treatment of AIDS.
There is a crucial link emerging between nutrition and immunity.
A joint statement by two UN agencies, the WHO and the Food and
Agricultural Organisation 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
The millions spent in the name of AIDS have facilitated the survival
of the AIDS lobby but not the patients. Our policy planners have yet
to understand the vital role of local food self-sufficiency, national
food sovereignty and public education on what the body needs to stay
Preventing this comprehensive health approach is a western donor-
driven agenda, says a growing movement of health policy experts.
While southern realities cry out for access to real, nourishing and
affordable food, clean water, sanitation, means of economic survival
and access to comprehensive healthcare interventions that would
have an across-the-board impact on health there appears to be
little shift in the northern perspective.
The focus of major funding and policy diktat from the north remains
obsessed with the pumping of more technological interventions
drugs, vaccines, diagnostic kits or food fortification therapies (a
pre-dominance of expensive lab produced chemicals to fortify food as
against natural, real food).
This approach is contrary to their own achievements which were gained
through a revolution in hygiene, sanitation and water services.
Southern experience shows that a technology driven approach cannot
have a tangible impact on malnourished populations who lack the means
for basic survival. Conditions of poor health infrastructure are
abysmal in developing countries of Asia, Africa and Latin America.
During field studies done in Uganda and Haiti, our group of health
journalists found conditions similar to that in India. Health centres
have no doctors, drugs or electricity. Access, particularly for those
living in the interior areas, is difficult because of poor roads and
Absence of public transportation.
There is high maternal and infant mortality; TB, malaria, high blood
pressure and a host of other diseases. Acute and chronic malnutrition
is rampant and it remains the main hurdle in bringing these countries
out of poverty. Health agencies such as the United Nations Children's
Fund (UNICEF) are clear that drugs and food therapies do not address
the key issue national production of food and restoration of
agricultural self sufficiency.
The bulk of international aid money coming to developing countries
Focuses on HIV/AIDS and involves "very big players" for whom "money
is not a problem" says UNICEF. At the forefront is the US, which is a
major supplier of pharmaceutical drugs. Its major concern however is
not with the needs on the ground but how aid money can be ploughed
back to US industries which have invested heavily in HIV/AIDS drugs
The Bush government for instance, initiated the "President's
Emergency Plan for AIDS Relief" (Pepfar) which is a major programme
to provide ARV drugs and the diagnostic kits for detection of
Haiti in the Caribbean Islands has recently scaled down its inflated
HIV/AIDS estimates, but US funds for AIDS drugs to Haiti have
steadily risen from $28 million in 2004 to the present $100 million
Aid That Distorts ARV drugs presently provided free by the US
government cost $15,000 as compared to $300 through the cheaper,
generic versions made available by countries such as India. Here too,
the US provides no guarantees that free drugs will be available
While initially the World Food Programme supported patients on the
ARV programme with food, it has now stopped doing so. Like in India
skin diseases, stress, TB, diarrhoea, STD are amongst the many
problems also faced by AIDS patients in Haiti, but there is no access
to support and treatment. There is no doubt that such money in the
guise of "international aid" would be ploughed back to boost western
research and industry, even as developing countries fall deeper into
a debt trap and poverty. Meanwhile aid that comes with conditions has
served to distort national priorities.
"Haiti's family planning programme also started like this", says
Marie Mercy Zevllos, Director of the Hope Centre, which provides AIDS
counselling in the capital, Port-au-Prince. "Initially we received
all the support technical and financial.
But then when the government changed in the US, the programme ended.
The current approach is good for the pharma industry in the US, it is
helping us to help themselves", she said. International health
experts in Geneva reveal that although 75% of health expenditure
comes out of the pockets of the poorest in developing countries, they
have no say in setting the priorities.
Meanwhile money from the donors up to $16 billion until 2006,
according to the WHO has come with conditions that distort national
Money poured into technology interventions is considered inadequate
while the gains in health remain intangible.
There is little understanding of the wider linkages that affect
access to health or concern for research in the neglected diseases
that add to the burden of ill health and death.
For health journalists looking at the wider picture a key insight
gained is that technology by itself can never be a magic wand. It can
be a boon and a gift of life when it is based on other broader
interventions that have to be in place first. In view of the emerging
food and energy crisis key issues for the coming years it is
crucial for the developing world to evolve its own sustainable
Solutions that promote health and prevent AIDS.