
By Sankalpa Marasinghe –
Which is more damaging; The harm to the child or the harm done to the HIV prevention program ?
In my opinion it is the latter. As much as it may sound unbecoming of a doctor to choose a program over a person, there are enough and many reasons to justify my decision.
First of all, there is a National STD/AIDS Control Program (NSACP) in Sri Lanka.
The program is funded by both government and international aid. Almost half of the funds come from international aid programs. The main being the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM). The funding is granted based on yearly assessment of progress and success. In fact, almost all of the funding specifically for the HIV prevention program is by the GFATM.
The NSACP draws a five year National Policy in HIV and AIDS prevention. The current policy is for 2013-2017.
The entire HIV prevention program rests on two main pillars:
- Patient confidentiality
- Non discrimination of HIV infected patients
In accordance with the National Policy, we doctors follow few very important rules in the clinical practice.
1. No person can be tested for HIV without his or her consent
- 3.6 HIV testing The Government of Sri Lanka promotes voluntary confidential counseling and testing, recognizing that mandatory testing would drive those at high risk of HIV infection beyond reach and prevent their access to public health preventive activities and other health services. Testing will be carried out according to accepted international guidelines.
2. Even when the patient is being tested, patient’s confidentiality is maintained.
3. HIV status/ results of the test is only divulged to the patient and no one else unless the patient gives consent. This includes the husband or wife of the patients.
4. HIV status/ reports are not divulged to even a medical professional if not required by a procedure or ordered by a court of law.
- 3.11 Human rights The Government of Sri Lanka will ensure that the human rights of people living with HIV/AIDS are promoted, protected and respected and measures taken to eliminate discrimination and combat stigma which will provide an enabling environment to seek relevant services. These include the rights of everyone to life, liberty and security of person, freedom from inhuman or degrading treatment or punishment, equality before law, absence of discrimination, freedom from arbitrary interference with privacy or family life, freedom of movement, the right to work (rights of the people living with HIV in the work places) and to a standard of living adequate for health and well being including housing, food and clothing, the right to the highest attainable standard of physical and mental health, the right to education, the right to information which includes the right to knowledge about HIV/AIDS/STI related issues and safer sexual practices, the right to capacity building of the individual in dealing with this condition, the right to participate in the cultural life of the community and to share in scientific advancement and it’s benefit. However, steps shall be taken to prevent persons from willfully and knowingly infecting HIV to other persons. The responsibility and behavior of the Media as stated in Article 28 of the constitution of Sri Lanka which casts a duty to respect the rights of others on reporting on matters related to HIV/AIDS are emphasized.
These policy decisions are taken in order to protect patients from discrimination. The social stigma and discrimination are the main reasons why patients do not come for testing as well as treatment. As a disease spread all around the world and a one with no cure yet, it is of paramount importance that those who are infected are diagnosed and treated to stop disease spread.
Personally, I am shocked and deeply ashamed as a doctor with regard to current developments at Kuliyapitiya. We as the medical fraternity have failed in our endeavor to educate the public and prevent this lethal disease. What shocks me the most is not the degree of ignorance revealed at the village in kuliyapitiya but the level of complete ignorance shown by the Minster of Education. I’m pretty sure it’s not just the minister of Education who lacks such knowledge in the parliament.
The chronology of the cascading events is a collection of successive blunders.
- It starts with a letter from the local education authorities to the mother informing that the child could not be admitted to a school because of a “rumor” that the child is HIV infected. A rumor?? Is it an acceptable basis for a government officer to make a decision?
- Then the child is tested for HIV. For a child to be tested the parent should give consent. Is this an ethical way for a patient to be tested for HIV? The mother is basically forced to test the child for HIV. (otherwise she won’t get a school for her child)
- Then the HIV status/report is revealed not only to the education officers but to the villages and the entire country.
- Still the villages refuse to accept and allow the child to be entered to the school. Then the “health officials” including the director (Medical administrator) of the HIV and venereal disease prevention program goes to the village and declares/assures the child does not have HIV.
- The local politician charged with education then declares that the child will not be admitted to the school succumbing to the pressure of the villages.
- Then the minister of Education steps in. he declares that the child would be given a school but is in the process of finding out the possibility of separating the child from the mother because, as he thinks, the child is not yet infected but could be infected because the child sleeps with the mother.
- In this statement he violates several principles of HIV prevention. He divulges the child’s HIV status. He suggests the mother is infected.
- Then the minister has the audacity to explain his comment by claiming that the transmission of HIV is possible because we are in a tropical country and there could be wounds in the mother which could bleed.
It is apparent that the Minster of Education and the other officials involved keeps walking deep in to the wilderness rather than out of it in this issue. Enthralled in their own baseless and misinformed statements they entangle themselves further by commenting and engaging in matters they have minimal or no knowledge of.
What infuriates most doctors who are active on social media is the reluctance of the minister of Education to take a step back and accept his mistake.
Instead the minister goes on to say that not only the mother but also the deceased father is infected with HIV. This is a blatant violation of the policy. He goes even further and declares that he is going to take steps to separate the child from the mother and keep the child under child protection authority.
This, sadly shows not only the ministers lack of knowledge on HIV transmission and prevention, but also his lack of knowledge about the laws pertaining to child protection. Also, it is apparent that he is uncertain about the jurisdiction of his own ministry which does not have the power to remove a child from a parent and put under child protection authority. (Not to mention that it is completely unwarranted at this situation)
On the above context, it is certainly within the rights of the mother and child to seek justice from the court of law sighting the violation of fundamental rights and patient confidentiality.
It is a sad reality that the minister as well as most officials do not realize that the harm done to the entire HIV prevention program is much more than the fate of one little boy and his mother.
When people lose confidence on the HIV prevention program, the rate of HIV testing and voluntary seeking of treatment falls down. HIV and AIDS can never be controlled or eradicated unless those who are infected are detected and tested. This entire fiasco is a major blow to that very program.
Benett / March 8, 2016
Well said, Doctor! This farce is a shame for our country! It is a shame that the majority of our “ministers” only serve themselves and lack any kind of professionalism, if one leaves out nepotism.
The ministers lack of knowledge is the real desease and it affects us all, tragically. Kariyawasam should appologize immediatly and resign to make way for someone professional.
If there’s no-one in the country to get our medical system up to Singapour-state, then get someone from abroad to do the job!
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Sinhala_Man / March 8, 2016
Thanks, Dr Sankalpa Marasinghe for putting this down in a clear, rational, chronological order. Yes, I think I understand why you say that we must go beyond this individual case and ensure that there are regulations which apply everywhere, and are enforced.
The Minister is now saying that lots of (government!) money is going to be spent on this boy and his mother. This is just not sustainable. He should have insisted that the boy stayed in the school of his choice.
In this instance it will be good, things having gone so far, if Trinity College abides by its promise and raises money for the purpose. It is a Private School and, by performing this meritorious deed it is ensuring its students are presented with a positive learning experience that leads to the student population having a higher sense of morality than otherwise.
However, the State cannot allow this “ape anduwa” activities in its schools. Few regulations promulgated by the Department of Education are taken seriously by the public. If the Minister’s foolishness in this case is not responded to by the government this episode will make it worse.
I listened carefully (twice) to what the Minister said; its possible that he has deluded himself in to believing all that he said, but the country should not condone these paranoid actions of his. If he cannot be persuaded to resign, he should be sacked.
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Sunil Dahanayake / March 8, 2016
It is very sad to see this mother’s suffering holding her child to her chest. What a emotional photograph.
Education Minister is a first class “Haraka” or Buruwa. He should be sacked from the Cabinet with immediate effect.
The Minister’s ignorance statement that the child should be separated from his mother shows his level of compassion and intelligence.
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Adrian / March 8, 2016
Very timely information. It is educational and informative. Since the village level knowledge appear to be so low, of course that of Parliamentarians too, why not introduce crash course for these people on HIV asap to at least not to fear for HIV Le’ issue.
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vnd / March 8, 2016
Very well explained article….But, some of the idiots in our country, starting from the so called “THE Education Minister” to the Principal & teachers at the crazy schools to the ordinary folks at the Kuliyapitiya village, will never ever understand a word explained here….
Before we explain about HIV to this dumb mob, we need to send them off to Psychiatric treatment….
We learned about these deceases and how to prevent them, when we were in Grade 9….I am just wondering whether the Minister of Education, attended school beyond grade 8 ???? OR has he ever been to a school even to find shelter when it was raining !!!!
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BBS Rep / March 9, 2016
What an indictment of a caricature of a country called Sri Lanka.
The best we people can do is appoint such an ignorant oaf as our Minister of Education.
Unfortunately this is the best available – an oaf and an idiot as the Minister in charge of educating the young and not so young in Sri Lanka.
This is why Sri Lanka is what Sri Lanka is.
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Dr. R Fernando / March 9, 2016
This has a good view of the incident than most slandering posts in the social media.
Most mainline media sensationalised this event.
My personal opinion is that HIV prevention campaign has not reached the people of this country. Nearly 95% or mor eof are population is literate.
However the people of Kuliyapitiya and the Minister in particular did not know how HIV is transmitted and how it can be prevented.
Please /// the HIV AIDS prevention campaign should use this negative publicity to gain country wide attension to educate the general public on HIV transmission and prevention.
I searched the website of Sri Lankan HIV AIDs prevention, it gives mostly statistics and campaign strategies but no information for the public on HIV.
Please take this oppertunity and make people aware and improve the KAP (knowledge, attitude, practices) of this nation
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Miuru / March 9, 2016
A well researched and learned piece that everyone can learn from not only of the medical and judiciary provisions of the case but also of its human angle. Epiphonic. Thank you Dr.
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Epoxy Ethane / March 17, 2016
Well spoken Doctor. I’d like to share some details about the encounter with minister and his official page regarding this incident.
1. Awareness is the key to debunk myths. I know that the mother and her family background is in stake now. Traditional but non scientific people cannot see out of the box. They take the issue and then apply the cultural perspective. Then they start attacking as a pack of wolves. Here, there are similar people with similar charges in that pack. But the politics in the pack treats the people as non guilt until they are with the pack, contributing. This behavior is also true in nowadays politics. However, when they go against someone, the perspective is only aimed at the cultural behavior of the subject rather than the perspective of humanity. Most of the people suffers from the lack of research. Research is what lacks in our societies and culture. And also a missed portion of the education system. Therefore, your contribution is much needed. And I wish if this could reach people in a translated version. Much appreciated for this post.
2. Politics and logics. Neither the edu. department nor the minister and his clan applied existing logics and rectify the issue. Rather than that, they standed the side of the rumors, critics and privacy blas. Not just that, they wanted to make the mother seen as a parasite to this society. People do mistakes, their lives and family background, education and values might have been different and turned them into vulnerable state. As a society we have to save these neglected, criticized and abused people. Just like this mother. They just horrifically disclosed, criticized, abused their privacy and lives. In public. This includes the minister and his mutts (the admin speaks for him and banned us all when we stood against their act). This act is just for secure votes. Education ministry is the most vital part of a society that have the awareness. Unfortunately it has never worked. People are still tribal. Or opportunists. They like to attack isolated subjects and abuse them. Especially the target can be a woman. A child. When in struggle they tend to hold onto good or bad power structures for survival. Could be a man or an opportunity (Like the villagers speaking about her threatenings. She said she might spread HIV as they say). She is using a vulnerability for survival. And yet they believed it and declared war against her.
3. No one should disclose medical information to general public. These are categorized as sensitive. Information classification and public awareness is unbelievably gone out of the practices of ministers nowadays. When the bidding is done, his administrators appear and tell us that the minister posses a some sort of uni. degree and he is the master of knowledge. I would ask what qualifications he has to make harass and ill-speeches in public without any logical or medical evidence? They acted as morons and pushed everyone away when we tried to negotiate (they labelled us as uneducated fools and community polluters plus a bunch of oppositions trying to eradicate his political business).
The attempt to spend money comes next. An act of a justice washing his hands (like when one judged Jesus) and covering up the tracks of a mass mythical and tribal unit. The line of education. This was a gran opportunity to widespread the awareness of the HIV. Politics and wisdom are two entirely separate things nowadays. Just to elect themselves as almighty, forgetting they are public servants. We have to pay taxes and all to what end?
This complete development was unethical, human rights violation, illegal and inhuman. If this happened in a different nation, there will be a hearing against this act and who involved in.
Each question is believed to have 4 perspectives. Government officials are the ones who should have the ability and capabilities to negotiate and think out of the box. Perspectives can be lethal if not looked into deeper. They should at least know the principles of awareness (includes how to utilize perspectives).
Thank you!
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