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Outcasts As the govt. seeks new foreign funding to fight AIDS, Kumudini Hettiarachchi looks at the burning issues AIDS patients face AIDS
numbers
According to
estimates there may be between 6,000 to 8,000 HIV Positive people
in the country. Commercial sex workers, migrant workers, soldiers
and drug users are considered the high-risk groups. Last year 146
of the 385 AIDS cases in Sri Lanka were women, half of whom had
been employed abroad. According to a UNDP estimate announced some years ago, the number of HIV-infected individuals in Sri Lanka would increase to 80,000 by 2005 while HIV prevalence will increase by 5.4 per 1,000 among those aged 15 to 64. Every
time I see my little boy I feel normal, my body-wracking pain eases
just a bit. I live for him. I was given only two years to live,
I am here today, four years on. I'm begging, begging not for sympathy
but for some work which I can do from home." This is the
heart-rending plea of Nimal*, a whiz with computers whom we are
meeting in his home in a suburb of Colombo. His breathing is laboured.
Speech stopped by breathless attacks. Severe aches mar his otherwise
handsome countenance. His movements are slow and deliberate and
his face mirrors mental agony. A debilitating
disease, creeping silently on unsuspecting people and then............a
slow and in society's eyes, "shameful" death. But long
before that, society, that's you and I, have killed them off mentally.
By our high moral stand, our revulsion towards what we think is
wrong, stigmatization and ostracism, we have doomed them to a private
hell. Yes, Nimal
has AIDS and not only does he see himself as doomed, struggling
to survive only for his beloved four-year-old son but also as a
pariah cast aside by society. And most HIV
Positive victims feel that the government too which should see to
the welfare of all its people, be they victims of cancer, any other
terminal disease, or Acquired Immune Deficiency Syndrome is turning
a blind eye to the basic medication that they urgently need. "Why,
oh why can't someone give me work to keep me from drowning and pay
at least my phone bill," pleads Nimal, repeatedly dubbing the
phone line as his "only link" with the outside world.
He is a computer specialist, not in one but both fields - hardware
and software. The graphics on his screen enough proof of his abilities
and creativity. The tears come
and his body is wracked by sobs as he relives his childhood. His
mother died when he was very young and his father courageously took
on the responsibility of bringing up his son alone. They went in
search of greener pastures to an African country and that's where
he studied, followed by higher studies in the west. Then he returns
to his temporary home in Africa to work. Our inevitable
question, how, follows. He thinks it was one indiscretion, a night
on the town with his African colleagues, peer pressure, a few minutes'
fling. "Or,"
he speculates, "I have very bad teeth. Could it have been due
to the dentistry that I needed?" Oblivious, he returns home,
falls in love and marries. Has a son and a good job. Life looks
good. He's a heavy smoker and gets a throat infection. Many tests
and doctors. Later he meets a specialist who has a long chat with
him and suggests the 'Eliza'. What is that?
He's shocked because it is the test to screen for HIV. It's positive
and the death sentence begins. "Society looks at us with scorn."
He tells his wife and she leaves with the love of his life, his
son. "Fortunately," he cries, "they are free of the
virus." His family
is wonderful. They feed, clothe and look after his every need. What keeps
him alive? The medicines cost Rs. 4,700 a month. He is lucky, because
there is a good Samaritan who is providing them for him. He gets
only painkillers from the STD/AIDS clinic - the dreaded Room 33
at the National Hospital in Colombo. Rose* is not
so lucky, because society has written her off as an expendable.
Soon after Rose's husband committed suicide in July last year unable
to come to grips with the fact that he had AIDS, some residents
from her village tried to burn down her house. "Fortunately,
others doused the flames which had engulfed my kitchen. But I don't
live there anymore," the 45-year-old mother of two teenage
daughters, recalls tearfully. Since learning
in June last year that her husband had AIDS, her life has been one
of misery with suicidal thoughts, but also determination to ensure
her daughters have a decent life and are gainfully employed. Rose
has also been tested positive and is carrying the HIV virus but
her daughters are in the clear. She needs treatment
but cannot afford it. "When I go to the government-run Anti-AIDS
Clinic they tell me there is no treatment except to eat well and
sleep well. They give me some vitamin tablets. How can I eat well
when I don't have a proper job and how can I sleep with all these
problems?" she asks. Treatment of
HIV/AIDS patients has become a thorny issue in the country with
some non-governmental agencies (NGOs) and patients urging the government
to include treatment or drugs in a proposed World Bank funding of
US$10 million under the National AIDS Prevention Project which is
in the pipeline along with a government request for a grant of US$
17.8 million to the Geneva-based Global Fund to Fight AIDS, Tuberculosis
and Malaria (GFFATM) There are those
who argue that the focus should continue to be on prevention and
awareness since providing drugs and treatment is an open-ended issue.
The cost of
drugs worldwide has fallen considerably since South Africa and Brazil
successfully negotiated with drug companies to drop prices. Dr Kamalika
Abeyaratne, a retired government paediatrician who is HIV Positive
and Chairperson of the AIDS Coalition, says her anti-retroviral
(ARV) therapy which cost her Rs. 1.5 million a year in 1996, now
costs just over Rs. 4,000 a month or Rs. 48,000 a year. "The majority
of patients can't afford the drugs and they are certain to die if
we don't provide them medication," said Dr. Abeyaratne, who
with her husband Michael, also a retired paediatrician, is making
an effort to provide care and support to HIV/AIDS victims. Dr. Abeyaratne,
who contracted HIV from a contaminated blood transfusion after being
involved in a motor accident, says treatment of victims was a fundamental
right and should be provided by the government. The AIDS Coalition,
which provides a range of services for those with the disease, in
April submitted a memorandum to the government stressing the need
for a treatment agenda in the proposed World Bank-financed AIDS
prevention project. The AIDS prevention
project, while ambitious, focuses solely on outreach and prevention,
noted the memorandum prepared with the help of AIDS Lanka, a California-based
group of doctors, lawyers and public health experts working on behalf
of HIV positive patients in Sri Lanka. "Unless it is amended
to address treatment as well, we believe the prevention project
will fall well short of its goal of halting the spread of HIV/AIDS
in Sri Lanka," it said. It noted that
there was a growing consensus among scientists, public health professionals,
human rights scholars, activists as well as political leaders of
the indivisibility of HIV prevention and HIV treatment. The memorandum
cites the success of Brazil as an example of how Sri Lanka could
benefit if treatment is listed as a state priority in the battle
against HIV/AIDS. It said the 1996 Brazilian policy to provide free
access to ARV resulted in improved and longer lives for those living
with HIV and a 50 percent reduction in the number of AIDS deaths. Meanwhile,
for Rose, her only desire is to make sure her two daughters aged
18 and 16 live a normal life and get employed. "The Abeyaratnes
have promised to provide money for my eldest daughter to acquire
a skill but after that she'll need help to stand on her own two
feet. I also need money for drugs and that I don't have." She clearly
remembers the day her house was nearly burned down. "It was
during my daughter's OL examination. She couldn't study anymore
because of that incident and after that we became social outcasts.
We were forced to leave the village," Rose said. Some money
to exist is all Rose and Nimal are seeking. For Nimal a little computer
work he can do from home, as getting about has become extremely
difficult and for Rose some funds to buy the essential medication
she needs. Is it too much to ask from a society considered very
humane and helpful? Can we afford
it? On record we
have 300-400 people to provide drugs for. Some 8000 people are estimated
to be living with HIV. Now if all these people start testing themselves
and seek free drugs, we would have a budget problem, he said, adding
that the government has to consider all these issues before taking
a decision. Other health
officials dismissed the charges that only painkillers were given
at the state clinic. "It's a misunderstanding," they said.
"When people are tested HIV Positive we begin by counselling
them because at that point they do not need any treatment. We monitor
them and as the virus affects the immune system and the patients
get 'usual' diseases like TB, pneumonia, diarrhoea and skin infections,
we treat those at that time." Under the strategic
plan for health, the government policy is to use anti-retroviruses
which prevent HIV transmission and spreading only in two instances.
To prevent transmission from mother to child and in the case of
health care workers who could pass it on to others. |
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