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A lone battle

Are they children of a lesser god? The men, women and children who are victims of HIV certainly seem to be. These patients are being given step-motherly treatment, when compared to those suffering from any other illness.

Do we let him die?

Gaunt Anil* lies on a small cot surrounded by pillows at the Mulleriyawa Infectious Diseases Hospital. He is three plus but looks more like a baby, the only giveaway being his long matchstick limbs. He does not talk but cries on and off, pointing to a toy that a well-wisher has given him. More toys lie with him in his cot.
His under-developed body is wracked by bouts of coughing, for Anil is very ill. He is HIV Positive and he needs urgent help, for fate has been cruel from the time of his birth. Anil was abandoned by his mother, who too was most probably HIV Positive, at Castle Street Hospital in 2000, then handed over to the Western Provincial Commissioner of Probation and Childcare and sent to a state home looking after orphans. As his development was not satisfactory he was sent to a nutritional centre for two years, but the improvement was marginal, says Commissioner W.M. Ratnasiri.
"Brought back to the home, he was frequently falling ill. He has a skin condition and also a phlegm problem and has been in and out of hospital. Once again he fell ill in April-May and was taken to the hospital close to the home and later transferred to the Lady Ridgeway Children's Hospital," he said.
When Anil's blood samples were screened for HIV, they were found to be positive. "Yes, we received a sample from a suburban hospital which was found to be HIV Positive on initial screening," confirmed STD/AIDS Control Programme Director Dr. Iyanthi Abeyewickreme.
Meanwhile, a health worker at the first hospital had "accidentally been exposed" to the HIV virus when she suffered a needle-stick injury after drawing blood from Anil. "The health worker has been counselled and also offered anti-retroviral treatment," Dr. Abeyewickreme said.
In Anil's case, the little boy lies in the IDH with no father or mother to carry him and hold him close, while staff members do their best in caring for him tenderly and lovingly.
What of his future? Anil's big, bright eyes seem to say it all, while his painfully thin hands stretch out to you for help and makes your heart bleed. Not only does he need proper care but also life-saving anti-retroviral drugs, which the state does not provide to HIV victims, to keep the virus under control.
Commissioner Ratnasiri lamented that though Sri Lanka has been face-to-face with HIV since 1987, nobody has thought of circumstances when the probation and childcares services would have to deal with such an eventuality. "We won't and cannot shirk the responsibility of looking after abandoned children who may have HIV. This little boy's situation brings out the fact that we are not equipped to handle such cases. We need to rectify this immediately and have homes which can look after these children and also trained staff." In the Western Province, the probation and childcare services get about two to three children either abandoned in hospitals or elsewhere, every month.
What of Anil's future? With the message of Lord Buddha's gentle philosophy preached at Mihintale over 2,500 years ago being reiterated just yesterday on Poson full moon day in this thrice blessed land, shouldn't we as a society shower a little maithriya (compassion) and karunwa (kindness) on lonely Anil battling life and death? His meltingly innocent eyes are a haunting reminder that he needs help now. Are we as parents and human beings in a society known for its caring and concern, ready to take up the challenge of helping Anil? Or will we let him die?
(* The little boy's name has been changed to protect his identity)

Discrimination is the apt word when making a comparison and that is what comes to the fore when we take the pathetic case of Anil, just three plus, now lying at the Mulleriyawa Infectious Diseases Hospital.

In a country that boasts of a very efficient healthcare service, provided free of charge through state hospitals large and small scattered all over, poor Anil and hundreds like him have fallen through the system and been left to fight a lone battle against HIV/AIDS.

The Sunday Times learns that only what doctors call "opportunistic" infections such as skin diseases, coughs, tuberculosis and pneumonia are treated under the state health system but no medication or anti-retroviral drugs are supplied to fight the HIV virus itself and keep it under control or check.

So far in Sri Lanka, with regard to HIV/AIDS the stress seems to be on prevention rather than attempting to keep the victims who have already contracted the virus from dying. Many doctors The Sunday Times spoke to were specific that anti-retroviral drugs are not provided as treatment for the HIV infected.

Why? The consensus of opinion seemed to be that the government cannot bear the cost.

However, sources explained that in two instances anti-retrovirals are provided as a preventive measure (prophylaxis) -- in the case of accidental exposure to the HIV virus in the healthcare sector and to prevent transmission from mother to child when the mother is tested positive.

"These drugs are given for a month for those who may have got exposed to the virus. In the case of an HIV Positive mother, the medication is provided around the 34th week of pregnancy till the 40th week and then during labour," explained an expert in the field, but added that if for example, a health worker does contract this disease even after such treatment that person would have to find his/her medication to keep the virus in check.

"Every child suffering from HIV should be entitled to treatment. It is the right of any child," stresses Prof. Harendra de Silva, Chairman of the National Child Protection Authority. "Not only children, all those who seek treatment for HIV should get the medication."

Looking at the history of HIV/AIDS, The Sunday Times found that though the country detected the first Sri Lankan with the infection in 1987, there were no proper drugs for treatment at that time.

Then in 1996, a breakthrough had come and the world had produced anti-retrovirals to keep the virus in check but at that time a patient would have needed drugs worth about US$ 1,000 (Rs. 60-70,000) a month. However, the price had come down to about Rs. 4,000 a month, about two years ago.

The STD/AIDS Control Programme had recommended in December 2001 that anti-retrovirals be provided as treatment to HIV victims, The Sunday Times learns.

When asked, Programme Director Dr. Iyanthi Abeyewickreme stressed that at the same time facilities for testing etc should also be improved. "Other labs in the country including those in the private sector can do only the initial screening for HIV. Our lab is the only one which is able to do the confirmatory test (western blot) to be doubly sure that someone has HIV. We do it free of charge if anyone needs it."

"While giving anti-retroviral drugs the progress of the patient too has to be monitored closely and for that we need to strengthen the staff and also train them in the latest methodologies. The CD4 (lymphocyte or immunity) count has to be watched closely to verify whether there is a gradual increase in the number with the giving of anti-retrovirals," she said.

With regard to a recent World Bank grant, Dr. Abeyewickreme said the programme first requested it as a loan but got US$ 12.6 million approved as a grant in February this year for the 'National HIV/AIDS Prevention Project'. Though she specifically asked for funds for treatment, the World Bank was of the view that Sri Lanka was a low-prevalence country and prevention was the greater need. However, a study to support the feasibility of providing such treatment has been included in the project.

"Forty-nine percent of the funds will be for HIV prevention, 17% for TB control and 34%for institutional strengthening," she said, adding that in the 49% category fell five areas. They were target intervention among highly vulnerable populations, broad-based programmes for youth and the general population, condom social marketing, blood safety and prevention of mother to child transmission.

However, a press release datelined June 10 from Washington disclosed that the World Bank has approved an IDA grant for Moldova -- which incidentally seems to have similar HIV statistics as Sri Lanka - with a component for "treatment for infected people in particular women, children and teenagers".

The World Bank officials handling this subject in Sri Lanka were not available for comment.

Informed sources told The Sunday Times that though anti-retrovirals now cost only about Rs. 4,000 per patient per month, even this is not within the reach of most HIV patients and it is the government's duty to ensure their right to treatment by providing them through the state hospitals.

Lobbying for such treatment through the state hospitals has been taken up by Dr. Kamalika Abeyeratne who herself has been a victim of HIV since she was given an infected blood transfusion after a serious accident.

Health Minister P. Dayaratne, when contacted told The Sunday Times that most probably the constraint was the cost. However, when informed that now the price of anti-retrovirals had come down, he was of the view that it seemed affordable. "I will consult senior health officials and discuss the matter on an urgent basis. Call me in 10 days," he said.

While the government counts the rupees and cents, hundreds of known HIV Positive victims fight a losing battle without treatment. Should we sit by and watch them die? Are they lesser beings that we can treat them as expendables?

Quick answers and quicker action to give these men, women, children and babies the life-saving drugs they need will be the right way to go.

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