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.