ROUTINE HIV TESTING

 

Wamundila Waliuya, Founding Director,
Disability Rights Watch.
31st August, 2017.

Routine HIV testing or “Tipima”?

I am compelled to contribute on the ongoing discussion on ‘compulsory’, ‘mandatory’ or ‘routine’ testing of HIV for the purpose of reducing infections and increasing the number of those who are on treatment. Consequently, reducing the viral load on many people, thus reducing further infections.

I am usually associated with issues to deal with disability rights. I am compelled to write on this because the issue has a direct connotation on persons with disabilities.

The government intention to ensure its people access HIV testing services and there after receive treatment when diagnosed positive is well positioned and carries positive will. The 90-90-90 targets and campaign came on very well and every person was well aware of what it means. This is because the message was well packaged for different categories of people, including persons with disabilities. Information dissemination was also, and is still organised.

HIV testing and treatment is the best way to go! No two ways about it. It will be just ideal that all people know their HIV status. It is also ideal that all people diagnosed HIV positive receive appropriate treatment. This will improve productivity and will reduce disease burden arising from HIV and AIDS related infections. People who are aware of their status, whether positive or negative usually live with confidence than those who are not tested. Those who have not undergone testing live with suspicion and fear. The fear is usually associated with stigma and discrimination. For persons with disabilities, extra fear on double stigma and discrimination arises.

In many interactions with persons with disabilities, I have discovered that persons with disabilities usually ask themselves the question: how will society view me as a person with a disability testing positive? This fear is as a result of society labeling persons with disabilities as ‘sexually inactive’.

The big question here is why this announcement has by government, through His Excellence; the President of the Republic of Zambia raised some dust among the community members? Of course with some members of the community exaggerating the matter. Worse still turning the matter into comedy. This simple reason was partly on: I) messaging especially on the use of the word “compulsory”; ii) on the bearer of the message, the highest office in the Republic; iii) the already existing fear and stigma surrounding HIV and AIDS issues.

In my previous writings, I have discussed the issue of forced treatment or forced sterilisation of persons with disabilities on the basis of their disability. For the purpose of simplifying the matter of hospital procedures, I will outline what happens from the time a patient visits a health facility.

I will jump straight to the doctor’s examination room. The doctor always has a discussion with the patient. The discussions are usually friendly and the patient will be made to understand their condition as they discuss. In many instances, the doctor will inform the patient to provide specimens for laboratory diagnosis. At this point, the patient is very free and encouraged to ask questions. At this stage also, the patient is free to refuse any form of test on different reasons including traditional or religious. The doctor will “never” force the test to be done. Usually, in order to protect themselves, the doctor will ensure the patient signs acting against medical advice form. This is usually done after the doctor has tried by all professional means to get “consent” from the patient. This can happen even for HIV testing!

I have never had of a doctor, nurse, laboratory technologist or any other health professional struggling with a patient to extract a sample of blood for testing. I have never! Maybe this may happen with the new ‘compulsory’ testing announcement. But I know it will not happen. The other is state is at the time of receiving the laboratory results. I have had of people who have gone for HIV testing but never went back to collect the results. Some have even informed the health professionals that they were not ready to hear their results. Again, I have never heard of a health professional who has thrown the results to the patient or shouting out the results so that the patient compulsorily receives the results. I have not heard of a health professional following up a patient who has come out positive to their homes to compulsorily put them on treatment. I do not think this will happen.

What about on the issue of testing and treatment? I have not heard of a group of health professionals twisting the arms of a patient and opening their mouths to force them to swallow oral medication. I am yet to be told of such a story.

“TIPIMA!!” What is this? “Tipima” means we test or we are testing. The messaging around this is that everyone will be forced to be tested wherever they find a testing facility. Now, if this “Tipima” will be done everywhere, who will do it? After “Tipima”, who will dispense the drugs immediately after “Tipima”? This “Tipima” should not be taken for granted as a joke b eking circulated by social media fanatics. It has actually affected some people. One 33 year woman with a disability asked me in vernacular: “If they test me when I am not ready as a woman with a disability, how will I inform my husband if I am to be found positive? It will be embarrassing especially for us women with disabilities because our husbands do not expect us to be positive since we have disabilities. People do not also expect us to be HIV positive. The only thing I could do was to encourage her to consider going with her husband for voluntary counseling, testing and treatment. She seemed to be comfortable with this.

The testing and treatment strategy is an excellent position. Let society understand it. We as a country are signatory to the various WHO and UNAIDS principles. Most of these principles take the human rights based approach. The HIV testing guiding principles of the 5 Cs: namely consent, confidentiality, counseling, correct test results and connections should be adhered to.

These principles are very essential in upholding the rights of all people seeking HIV AIDS services. I do not think the Government of the Republic of Zambia has intent to ignore these principles. I guess not.

For persons with disabilities, Zambia has ratified and domesticated the UN Convention on the Rights of Persons with Disabilities which carries the principles of respect for inherent dignity; autonomy, including the right to make own choices. The Convention also brings out the aspect of informed consent when seeking health services and this includes HIV and AIDS services. I do not think the Government of the Republic of Zambia wants to go round this. I guess not!

 

A simplest example of what happens in hospitals which is familiar to many people is “LAMA”. This stands for “Left against Medical Advice”. This simply means that a patient holds the right to be granted discharge from a health facility even when the doctor’s professional stance is that the patient still needed to be under the direct care of the health practitioners while admitted. Another simple example is consent to undergo a surgical operation. Even children need to give assisted consent through their parents.

HIV testing which is seemingly mandatory has already been going on in the health facilities. For instance, every unit of donated blood has to be tested for syphilis, hepatitis B and HIV among other tests. So, every blood donor is tested. Before any surgical procedure, operation, patients are tested for HIV among other tests. This is for the purpose of protecting the patient and the health practitioner. Pregnant women are tested for different conditions including syphilis and HIV as they attend ante-natal clinic. Whenever doctors want to rule out opportunistic infections arising from HIV infection, they have been testing for the virus. It is not about being compulsory. It is routine practice! But the issue of consent and confidentiality should always be adhered to. This is across all people despite their economic, social, religious, sexual, intellectual, mental, racial, gender or psychological status. I have been struggling with people, including health practitioners, that even people with mental health problems have got the right to informed consent. Yes, they have!

So, what is this “TIPIMA?” Who will “Pima” who?” Who will “pima” the one who will “pima” the one who “pimad” the others. Chaos!

The Ministry of Health and the National AIDS Council (NAC) should:

  1. Urgently publish a comprehensive but simple technical position that will outline the standing of government on this matter. The guideline should elaborate how, when and on whom will the routine test be done. The technical guideline should demonstrate that the government is not in anyway departing to what it has signed to in terms of the WHO guidelines on HIV testing, i.e. the 5 Cs.
  2. MOH is clear on its mandate and plans on HIV and AIDS service delivery through its National Health Strategic Plan 2017-21. It does not talk about compulsory HIV testing. It stresses the point of testing and treatment. Let MOH deliver on its good and comprehensive strategic plan.
  3. The pilot self-testing programme is going on very well according to reports. The question remains on how the issue of testing and treatment will be strengthened. If one self tests, where do they immediately access treatment? Can the MOH go further to research on – self testing; self counseling, self treatment. Is it possible I wonder?
  4. The Ministry of Health and NAC should carry out robust awareness raising campaigns, including in simplified and accessible formats throughout the country. In this quest, the MOH and NAC should collaborate with civil society organisations including the religious groups and organisations of persons with disabilities.

 

It will be a good idea for the government to, by all means, avoids the terminologies “compulsory” and “Mandatory”. I remember very well coming across the term “routine” on several occasions when interacting with the health sector. It would be good to breakdown this term. There is no Compulsory TIPIMA!

I want to take this opportunity to say that we as Disability Rights Watch are delighted with the indication from the Minister of Health Honourable Chitalu Chilufya that the Mental Health Bill will be presented before the National Assembly this coming sitting. This is a great move and it is one step which will put the human rights standing of the Republic of Zambia to a higher level in as far as upholding the rights of persons with disabilities is concerned. The Bill has been pending for than two decades. I infuse the discussion on the Mental Health Bill in this HIV matter because the Bill carries a lot of clauses that hinge on informed consent, confidentiality, correcting testing and correction for persons with mental problems or disabilities. The issue of dignity for persons with mental disabilities is also raised in this Bill. This is a Bill who will raise the dignity and self-determination capacity of persons with mental disabilities to a more human rights based status. The issue of supported and assisted decision making should be clear in this Bill. All-in all the right of persons with mental disabilities to enjoy and exercise legal capacity should be upheld through this Bill. We are highly grateful to the Honourable Minister of Health, Dr. C. Chilufya for ensuring that the Bill at last sees itself into the National Assembly. We as DRW will avail ourselves, with our experts, to give direction and witness input to the committee of the National Assembly which will handle the Bill.

We take this opportunity to pass our condolences to the State and the family of Honourable Joseph Kasonde on his death. May His Soul Rest in Peace? Dr. Kasonde openly committed himself to present the Bill to the National Assembly but found it difficult due to government priorities. However, he left a ground from which Honorable Chilufya could tag off with little difficulties.Routine HIV testing