Sagar Mehta* is not the typical face of HIV in India. For, unlike
most other HIV-positive people here, this 52-year-old Bombay-based
jeweler can afford care and treatment. In fact, he enjoys the best
of both worlds of medicine -- Western (allopathic) as well as
ayurveda, an ancient Indian holistic system of healing. "I
feel better physically and mentally as a result of this integrated
therapy," says the bespectacled and balding Mehta, who tested
positive two and a half years ago. "The antiretroviral therapy
brings down my viral load, while the ayurvedic medicine boosts my
immune system and enhances my strength, stamina and weight. Two
years ago, I weighed 47 kilograms [105 pounds]. Now, I've stabilized
at 59 [130].
Mehta's triple-drug antiretroviral regimen, which he started a
year ago, costs him about 20,000 rupees ($455) per month. By
comparison, the ayurvedic remedies that he has used for two years --
such as satavari, an antidiarrhetic root rich in vitamin A,
and powdered amlaki, a fruit with high levels of vitamin C --
cost about $14. The income from his jewelry business funds it
all.
"I'm lucky my affluence allows me to afford the treatment," says
Mehta, who, like most other HIV-positive people POZ
interviewed for this article, asked that his real name not be used,
fearing discrimination. "Otherwise, I would have very little chance
to make it through this disease."
Though less than 1 percent of the Indian population has HIV, the
National AIDS Control Organization (NACO), which manages India's
AIDS program, estimates that without successful intervention, HIV
could hit at least 5 percent of the adult population -- more than 37
million people -- by 2005.
Now at an estimated 4 million, India's HIV population is already
one of the largest in the world -- each one hoping for a chance like
Mehta's to make it through the epidemic alive. Unfortunately, with
AIDS, as with everything else in India, the wealthy few seem to be
walking away with the most.
India is a massive, agrarian nation of almost a billion people.
Though it has a middle class of some 150 million, at least 400
million live in dire poverty. Most Indians have no health benefits
and must pay for medical care out of their own pockets. Only a
privileged 10 to 15 percent -- those who work in the government or
formal private sector -- are covered by employer benefits. And even
that coverage may not extend to AIDS. For example, Mediclaim, a
government insurance policy that covers about 2.5 million, excludes
AIDS. The government's large network of dispensaries and hospitals,
which provide free or subsidized services, remains the primary
source of care for most Indians.
Because of limited access to care, poor nutrition and widespread
tropical infections, says Subhash K. Hira, M.D., "the natural
history of HIV in Bombay shows that the disease progression of HIV
to AIDS and death is almost twice as fast here when compared to the
United States." Hira has spent the last 20 years chasing HIV across
the globe, working for three years at an American university and for
eight as director of Zambia's AIDS program. Now he serves as
director of Bombay's AIDS Research and Control Center (ARCON), a
program sponsored in part by the state of Maharashtra. Hira says
PWAs in India face a variety of opportunistic infections (OIs) --
parasites, fungal infections, recurrent bouts of diarrhea -- but
that tuberculosis tops the list, accounting for an estimated 70
percent of AIDS deaths.
As with every other Asian nation, India is obsessed more with
preventing than with treating the epidemic. It's almost as if by
focusing its budget -- much of it loaned and gifted by international
funding agencies -- on prevention and information, the government
can deny that the disease is already in its backyard.
"Even as the numbers of HIV-positive people grow, few people are
showing any interest in taking care of them," says Nagesh
Shirgoppikar, M.D., a gynecologist and AIDS specialist who runs an
AIDS clinic for slum communities at the Salvation Army center in
Bombay. "The government focuses primarily on targeted intervention
among commercial sex workers and truckers, and not enough on
building care, treatment and support structures for the
infected."
Some of this is changing. The first phase (1992 - 1999) of
NACO's project to manage AIDS in India focused almost entirely on
information campaigns and blood safety. However, the second phase,
currently under way -- with planned financing of $328 million over
the next five years (including $191 million in World Bank loans) --
is expected to allot about 12 percent of its budget to care and
treatment. This includes making available drugs for OIs and
providing antiretrovirals for pregnant women at public hospitals
across India, plus a new emphasis on home and community-based
care.
"We have some good policies in place," says Mandeep Dhaliwal,
M.D., coordinator of the Lawyers Collective's HIV/AIDS Unit, which
provides legal aid to people with AIDS out of a small office in
Bombay. "We now need to operationalize them."
Unfortunately, that's what is proving toughest. Take the example
of NACO's commitment to providing OI drugs to all public hospitals.
A year after the decision, these drugs have yet to make their way to
hospitals in Bombay.
Minni Khetarpal, an official at the Mumbai (Bombay) District AIDS
Control Society -- a local arm of NACO -- explains it as a
bureaucratic delay. Apparently, NACO, headquartered in New Delhi,
had originally planned to provide the drugs directly to hospitals.
But a few months ago, NACO asked district AIDS societies to handle
drug procurement themselves. "This change of policy has caused some
confusion, but we will soon start supplying OI drugs to public
hospitals in Bombay," Khetarpal says. Small hospitals will get a
drug supply from their district AIDS society, while major teaching
hospitals will be given a fixed amount to spend on these drugs each
year, she says. For 20002001, she says, that amount is a mere
$11,000. When a hospital runs out of drugs, requesting more entails
another slow, bureaucratic process.
Even these limited resources are sometimes difficult to access.
Health care is routinely denied to PWAs or provided in a meager,
slapdash fashion. This is so even in public institutions, which are
obligated by law to treat HIV-positive people.
INDIA
Total
population 960,178,000
Number of people
with HIV
UNAIDS 4,148,000
Official gov't 94,966
Number of people with
AIDS
UNAIDS 430,000
Official
gov't 10,857
Number of
openly positive NA
Transmission
Mode
15% Homo
65% Hetero
15% IDU
5% Blood products
Faces a crisis of 37 million infections by 2005.
TB rages. Asia's worst anti-PWA stigma, including '99
law forbidding HIVers to marry. Sex work and drug use to
keep youth infections high; grass-roots prevention
flourishes. One in 4 HIVers is a woman.
|
"The fact is that no one really wants to acknowledge our
presence," says Akshay (who goes only by his first name), president
of the Maharashtra Network for Positive People, a new
support-cum-lobby group for PWAs in Maharashtra state. "Often
doctors and hospitals make excuses, pass the patient around or,
having admitted a positive person for inpatient care, quickly
discharge them under any flimsy pretext. A few private doctors who
agree to treat positive people charge them double the regular rate.
And this is the case in big cities. In smaller towns, it's even
worse."
Denial of care is an acute problem, says researcher Shalini
Bharat, of the Tata Institute of Social Sciences in Bombay.
"Differential treatment, labeling and social distancing are
experienced by HIV-positive people soon after the disclosure of
their status to hospital staff," says Bharat, whose UNAIDS-sponsored
study on AIDS-related discrimination was published last year.
"Discrimination in private hospitals takes forms such as denying
treatment outright or imposing mandatory HIV testing prior to
surgery or child delivery. If you test positive, you're often thrown
out. In public hospitals, it means blocking access to facilities
like the common toilet and physical isolation in the ward."
Sheena Pinto* knows this only too well. HIV-positive herself,
36-year-old Pinto admitted her husband, Martin*, now in the terminal
stages of AIDS, to a public hospital in Bombay in January. "They
treat you worse than stray dogs," she says bitterly, describing the
dirty mattress presented to her husband on his arrival in the ward,
the placement of his bed on a veranda where the cold wind blew in,
and the general disdain that marked the conduct of the nursing
staff.
Pinto holds a full-time job in addition to caring for her two
young, HIV-negative children and her ill husband; the day she spoke
with POZ, she seemed exhausted. "The more I voiced my
criticism of the way they treated Martin, the more I was shunned by
the medical staff," Pinto says. "It's almost as if they wanted to
teach me a lesson."
According to Dhaliwal, of the Lawyers Collective, "It's essential
that we realize why health workers deny care. Usually, it's on
account of ignorance and fear of occupational exposure to HIV. Most
public hospitals do not have access to gloves, masks or
post-exposure prophylaxis [PEP]." Last year, the Lawyers Collective
filed a legal petition in India's highest court, asking that the
court recognize denial of care to PWAs as a violation of the Indian
Constitution. "The petition also says that it is obligatory for the
state to provide a safe working environment -- universal precautions
and access to PEP -- for health care workers," Dhaliwal says. "Thus,
it tries to balance the rights of patients and the rights of health
care workers. Only by respecting the rights of both can the quality
of care improve."
Antiretroviral therapy is the exception rather than the norm in
India, and this remains the central concern for PWAs here. It's
almost unheard of in public hospitals. "It seems audacious of us to
ask for antiretroviral therapy to be made available in public
hospitals when resource crunches make it difficult to afford even
adequate treatments for opportunistic infections -- such as more
antibiotics, antifungals, medicines for drug-resistant TB," says
H.R. Jerajani, M.D., head of the dermatology department at Sion
Hospital, one of Bombay's largest public hospitals. Every month, her
outpatient department sees 4,000 people, about 1 percent of whom are
HIV-positive. "Instead, we focus our attention on prompt treatment
of opportunistic infections and making nutritional supplements
available to our HIV patients," she says.
In private health care settings, HAART is available but so
expensive that it is mostly out of reach. A three-drug regimen costs
$340 to $455 a month -- more than a typical professional salary
here, and far more than the average per capita income of $315 per
year. India has a thriving pharmaceutical industry, one of the most
advanced in the developing world, and is one of only four countries
(Thailand, Brazil and Cuba are the others) to have begun to produce
generic versions of antiretrovirals locally. But many drugs, such as
protease inhibitors, still have to be imported from abroad. With
import duties as high as 60 percent, a one-month supply of a single
protease inhibitor can cost $400. Thus, according to data gathered
by D.G. Saple, M.D., of GT Hospital, a public hospital in Bombay,
triple-drug therapy was, until recently, being used by only .04
percent of the HIV population. Saple estimates that with Indian
pharmaceuticals such as Cipla now producing four antiretrovirals at
around one-half the import price -- AZT, 3TC, d4T and nevirapine --
that number may rise a bit, to as much as 2 percent.
"In the United States and the developed world, treatment
decisions are based on clinical factors such as CD4 count and viral
load," says Sanjay Pujari, M.D., director of the HIV project at Ruby
Hall Clinic, a private hospital in Pune. "But in India, where
patients bear the total cost of therapy, that decision is made on
the basis of patient affordability and chances of long-term
compliance. Sometimes you'll keep aside the expensive protease
inhibitor, or use it only when a patient gets more sick."
Thus, most people on antiretroviral therapy are well-to-do
professionals or those whose health care is covered by their
employers. Despite the travails of his current hospitalization,
Martin Pinto considers himself lucky: The government-owned company
he works for has reimbursed his expenses for antiretroviral therapy
for the last three years. His wife, Sheena, is far less fortunate:
Her medical expenses are covered by neither her husband's employer
nor her own, so she receives no treatment at all. "If a family can
afford HAART, then it usually can afford it for one member only.
Most often, it's the male head who gets preference," Pujari says. He
has 78 patients on triple-drug therapy, only seven of whom are women
(though, according to UNAIDS, women make up a quarter of India's
epidemic).
With mainstream allopathic medicine proving virtually impossible
to access for PWAs like Sheena, an increasing number of people with
HIV are turning to alternative therapies -- ranging from ayurveda
and yoga to siddha and homeopathy. Ayurveda, yoga and siddha
are 5,000-year-old Indian medical systems -- extremely popular, but
starved for institutional acceptance and research rupees. Even
though these healers receive comprehensive training -- ayurveda is
taught at specialized medical colleges where it takes eight and a
half years to become a licensed ayurvedic doctor -- their
traditional treatments are not routinely dispensed in government
hospitals or clinics.
AIDS is beginning to challenge this hierarchy. Several
alternative practitioners are convinced that these therapies,
especially ayurveda, could provide major insights into a disease
that we still have much to learn about (see "Ayurveda Unveiled"). For people with AIDS in India, the therapies
are already a boon because of their cheaper cost -- as little as $7
to $13 per month -- and minimal side effects.
But do they work for AIDS?
"They certainly do not cure AIDS, but they often do lead to a
better quality of life for HIV-positive people," says Reeta Sonawat,
a professor of human development at SNDT University in Bombay. Her
department's 1999 study that looked at the effects of yoga on 12
terminally ill AIDS patients, showed that twice-weekly yoga classes
over four months improved sleep patterns and stabilized patients'
blood pressure. "The yoga seemed to give them both physical and
psychological strength to cope," Sonawat says.
Harish Singh, an ayurveda M.D., runs a twice-weekly ayurvedic HIV
clinic at Bombay's J.J. Hospital, where he has designed a detailed
program for HIV care. "If the patient is positive but at the
asymptomatic stage of the disease, we offer the rasayana
group of ayurvedic remedies, which help maintain health, boost
immunity and prevent infectious episodes," says Singh, the former
director of a respected ayurvedic medical college. "If the patient
is suffering from HIV-related complications such as fever, diarrhea
or weight loss, then we treat those symptoms with specific herbal
drugs and also try to increase general immunity."
Singh, who has treated HIV-positive people with a repertoire of
20 ayurvedic remedies for six years, observes these benefits: an
average weight gain of 3 to 4 kilograms (7 to 9 pounds), a reduction
in recurrent infectious episodes, an increase in appetite and
energy, and an overall sense of well-being. "After three months of
ayurvedic treatment, patients usually report an increase of 20 to 30
percent in their CD4s," he says. "However, in only a few patients
has the viral load gone down."
He says his patients on HAART also respond well to ayurveda.
Besides boosting their immunity, the ayurvedic preparations allow
for better absorption of antiretrovirals.
But with ayurveda, it's not just medication that makes a
difference; it's also adherence to the basic principles of ayurvedic
care. "Ayurvedic treatment should always be accompanied by lifestyle
changes, attempts at stress reduction and regular sleep, as well as
conforming to dietary guidelines," says Prakash Bora, M.D., a
Bombay-based allopathic doctor and trained ayurveda expert.
"The dietary rules are crucial," Singh concurs. "About 30 to 40
percent of my patients follow the correct diet, and this makes them
respond better to the ayurvedic medicines." Singh, who hands out a
dietary pamphlet to all his HIV patients at J.J. Hospital,
recommends drinking boiled or filtered water; eating six to eight
dates daily to increase body mass; drinking coconut water or lemon
juice daily for instant energy and as an antidiarrheal; regular
intake of peanuts, palm sugar, fruits such as pomegranate (for iron
content) and gooseberry (for vitamin C), protein-rich lentils,
pumpkins and vegetable soups made of bottle gourd, carrot or
cabbage; and taking a few spoonfuls of clarified butter daily.
Both ayurvedic experts agree that in the terminal stages of AIDS,
ayurveda is not as useful.
At the Government Hospital of Thoracic Medicine in Chennai
(formerly Madras), the efficacy of siddha medicine is being tested
on several HIV-positive people. Siddha is an ancient medical system
practiced among the Tamil-speaking people of southern India. Like
the more popular ayurveda, siddha views disease as a product of
imbalanced life forces, and its diagnostic tools (examination of the
mouth, tongue, eyes, skin, urine and feces) are similar. Its
remedies are somewhat different, though, with a greater emphasis on
the use of minerals and metals, including pearls, coral and gold, in
addition to herbs.
"Currently, our institute has almost 600 HIV-positive people
undergoing inpatient care using siddha," says C.N. Deivanayagam,
M.D., superintendent of the Tambaran Sanatorium, which houses the
hospital. Most of his patients also have tuberculosis, and many use
a combination of siddha medications and OI drugs.
According to Deivanayagam, the first 72 patients tested after
usage of siddha medication (with anti-TB drugs) in 1998 showed a
significant increase in their CD4 counts that was maintained for
more than four months. "In our current batch under study, 33
patients have shown good reduction in viral load and the majority
have shown increases in CD4 and CD8 counts," he says. "All the
patients have gained weight."
Despite side effects including abdominal discomfort, loss of
appetite and transient rashes, "no one has been forced to stop the
combination of siddha drugs due to side effects," he says.
Others warn of more serious side effects from siddha and other
alternative therapies if they are not taken under expert guidance;
they say that assessing toxicity with each patient is critical with
medications that utilize dangerous metals such as mercury or sulfur
(though they've been processed to be safe). Each Indian state has an
ayurvedic board that registers licensed practitioners; Bora, the
ayurvedic expert in Bombay, encourages patients to check whether
their doctor is legitimate. "Beware of quacks who say ayurveda or
any of these alternative systems can 'cure' AIDS," he says.
"Ayurveda will improve the quality of your life is all that I
guarantee, no more."
Many allopathic doctors remain extremely skeptical of alternative
therapies. "I don't recommend them because you can't be too sure
that the better feeling being reported by the patient is not just a
placebo effect," says Pujari, the director of Ruby Hall Clinic.
"Patients are known to report feeling better just because they are
getting some treatment."
Ashok Rau, an executive at the Freedom Foundation in Bangalore,
which runs an HIV care facility, says that until there's proven
clinical benefit, suggesting alternative treatments "is just using
patients with HIV as experimental guinea pigs."
Scientific proof, at least for ayurveda, may soon arrive. In a
state-of-the-art laboratory just outside of Bombay, researchers
sponsored by ARCON and the Mahatma Gandhi Mission's Medical College
are using modern lab techniques to assess the validity of ayurveda
as an AIDS treatment option.
For the last four years, we've been testing the effects of 12
pure ayurvedic herbal and plant-based extracts on HIV-infected human
cells," says ARCON director Hira, who coordinates the study, along
with doctors Bora and Singh. "It's been an arduous process of
integrating two systems of medicine and subjecting an ancient
science to the rigors of modern scientific investigation."
"Experiments have been replicated several times over and not a
single one has contradicted that result," Hira says. Another 520
experiments are now planned to confirm their findings. "We've found
that fine-tuning the experiments is crucial because only at a
certain level of dilution do the ayurvedic extracts show
immune-modulating power. In fact, in certain concentrations, the
same extract worked as an immune suppressor."
The researchers hope to announce their results by year's end.
"This is exciting. It could mean that we may have a class of drugs
made from ayurvedic extracts that may minimize the side effects of
allopathic antiretroviral therapy and offer a therapeutic
alternative for as little as a few hundred rupees," Hira says.
"Ayurveda holds a lot of hope -- there are 58,000 preparations in
ayurveda, and we've just scratched the surface."
Meanwhile, outside the labs, other experiments in care are under
way. The one-stop HIV service unit at Bangalore's Freedom Foundation
was created with the participation of HIV-positive people. From
testing, treatment and counseling to short- and long-stay facilities
and a hospice for the terminally ill, Freedom Forum has it all,
including a mini-ICU, a complete medical unit and a legal services
team.
"There was discrimination within mainstream health care, so we
said, 'Why not create an alternative care structure for HIV-positive
people?'" says Rau, the Freedom Foundation executive. The foundation
is now replicating this model in Hyderabad and Bellary, and recently
began an initiative to obtain antiretrovirals for poorer HIV
patients. In the last year, the foundation arranged for individual
philanthropists to sponsor triple-drug therapy for seven HIV
patients.
Meanwhile, ACT-PACE, a Christian NGO in Bombay, is building a
core group of home-based care volunteers. Each regularly visits and
counsels an HIV patient in their area, and facilitates medical aid.
"As more and more of our HIV-infected population becomes seriously
ill, our existing health care systems will not be able to cope with
the sheer numbers of patients," says Shirgoppikar, of the Salvation
Army clinic in Bombay. "That's when we'll need to fall back on
alternatives such as home-based care and community support."
* Names marked by asterisks have been
changed.
ARURVEDA UNVEILED
Ayurveda is a holistic system of healing that evolved among the sages of India some 5,000 years ago. The word ayurveda is derived from two Sanskrit words, ayur, meaning “life,” and veda, meaning “knowledge.” The method is built on a distinct theory of disease causation, with a comprehensive system of diagnosis and therapy.
Ayurveda describes three universal energies that regulate all natural processes on both the macro- and microcosmic levels. That is, the same energies that control galaxies and star systems are operating on the human body. These forces, which govern all of our life processes, are known as the three doshas, or simply the tridosha.
The three are vata (wind), which controls movement and the nervous system; pitta (sun), which is hot and rules the digestive processes and metabolism; and kapha (moon), which has a cooling effect and governs the body’s organs, as well as cell growth and tissue development.
When in balance, the doshas are life-supporting, but when out of whack, they are the agents of disease, including AIDS. Ayurveda focuses on maintaining a balance of these life energies, rather than treating individual symptoms.
Thus, to diagnose an imbalance, the ayurvedic vaid (doctor) not only responds to the physical complaint but also examines a patient’s history and daily habits, paying special attention to diet, the tongue, breathing, sleeping patterns and emotional and mental states.
Typically, vaids treat ailments with herbal remedies—made using indigenous plants, according to traditional formulas—or mineral-based remedies, along with various forms of yogic cleansing, fasting and special diets. Vaids also advise patients on exercise, patterns of breathing, relaxation and meditation, and recommend practical interventions such as massage and enemas.
Most vaids consider allopathic medicine to be the standard remedy for some AIDS-related infections, such as tuberculosis. Others, such as diarrhea, vaids treat using ayurveda: First, a vaid would diagnose whether the diarrhea is of vata, pitta or kapha origin. Then he or she would prescribe a group of medicines to restore balance in the body. If the diarrhea were of vata origin, for example, that remedy would consist of powdered bel (Aegle marmelos) and a decoction (concentrate) of nut grass (Cyprus rotundus).
