To tell or not to tell? The pitfalls of divulging someone’s HIV status

In December 2015, a woman filed a case against her husband of 12 years before the HIV and AIDS  Tribunal for not only discriminating her because of her HIV status, but also disclosing her status to his brother.

The claimant tested HIV-positive in 2010 and on informing her husband (the respondent) of her status, “he was at first supportive, but later on started discriminating against her based on HIV status by, among other things, refusing to talk to her, refusing to eat with her or share utensils with her and moving out of their matrimonial home without the claimant’s knowledge,” the Tribunal heard. Responding to the suit, her husband said that his wife was cruel and disrespectful to him.

He also claimed that his wife failed to give him a warm welcome whenever he returned home after work trips and that whenever she took leave from work, she would disappear without informing him of her whereabouts.

He added that whenever he enquired, she told him that she was an adult. When the case was heard, the Tribunal ruled that although the respondent was not found to have discriminated against his wife on the basis of her HIV status given that they had past cases of matrimonial conflict, it awarded the woman Sh150, 000 for unlawful disclosure.

“Unlawful disclosure of one’s HIV status violates the right to privacy as it opens doors to invasion of one’s autonomy of their personal space.

“The respondent’s discussion and subsequent disclosure of the claimant’s HIV status with his brother was uncalled for and unlawful. Just like discrimination, breach of confidentiality through unlawful disclosure creates stigma which has a negative impact on the fight against HIV and AIDS,” the Tribunal ruled.

In a different case in May last year, a Nairobi-based hospital was ordered to pay Sh2.5 million to a claimant after the Tribunal found that the hospital had breached the patient’s confidentiality and right to informed consent. The patient went to the hospital to seek treatment for severe diarrhoea, but she was subsequently subjected to a HIV test without her informed consent.

NO CONTEST

The test indicated that she was HIV-positive. Later, the patient learnt from her doctor that information about her HIV status had been shared with her insurance company, compelling her to file a complaint at the customer service department of the hospital.

When the hospital failed to take action, she filed a claim at the Tribunal for breach of confidentiality and abuse of “her right to human dignity and privacy by the hospital for having tested her for HIV without her consent.”

In the case detailed in the compendium of HIV/Aids cases, the Tribunal noted that it was wrong to compel the patient to undergo HIV testing without her consent,  contrary to Sections 13 and 14 of The HIV/AIDS Prevention and Control Act. The Tribunal thus awarded the patient one million shillings in damages and a further Sh1.5 million, which was paid by the hospital for forwarding an invoice that revealed the patient’s HIV status to the insurer.

Interestingly, a number of hospitals and insurance companies have an agreement that if an insured patient has been admitted, the insurer has to be informed within 24 hours, who the patient is, where he or she has been admitted and the nature of ailment, so as to authorise and process payment.

In another matter, a hospital was directed to pay Sh700, 000 in damages plus costs of the suit. The tribunal observed that although the patient was a beneficiary of an insurance policy under her mother’s name, being an adult, the authority to release her confidential information to the insurer, “ought to have emanated from her and not her mother.”

A patient’s HIV status has always been at risk of being shared, most times without their consent to third parties. Health facilities, where a patient expects trust and confidentiality as provided for by the 2013 Patient Rights Charter, have often perpetrated this violation.

The situation, however, becomes complex when hospitals which forwarded medical bills and invoices to the insurance company for settlement of costs for services rendered to HIV-positive patients, find themselves in conflict with the law on privacy and confidentiality.

The lack of clear regulations on how a patient’s HIV status is shared with third parties has seen facilities compelled by the HIV and AIDS Equity Tribunal to pay millions of shillings in damages, often several times more than what the patient was demanding from the insurer as treatment expenses.

Hospitals find it difficult to defend the cases brought against them, given that the HIV and AIDS Prevention and Control Act (HAPCA) forbids such violations. Section 22 of the HAPCA provides that, “No person shall disclose any information concerning the result of an HIV test or any related assessment to any other person except with the written consent of that person.” Notably, no privacy guidelines have been developed under Section 20 of HAPCA to date. Yet, according to the HIV and AIDS Equity Tribunal, Section 22 of the HAPCA does not just prohibit disclosure of HIV results, it also prohibits disclosure of any information that can take the form of, “a letter, an invoice, a bill, a receipt, or any other document whatsoever containing any information from which the HIV status of a person can reasonably be inferred by a third party.”  

Mr Nelson Otuoma, the national coordinator at the National Empowerment Network of People Living with HIV/Aids in Kenya (Nephak) says a person’s HIV status can only be shared by themselves to their employer or insurance firm. 

ALL IN CAMPAIGN

He clarifies: “Consent cannot be verbal, it should be written and signed, documented for future reference.” In some instances, the coordinator says, patients who did not know their status before being admitted to hospital have found themselves abandoned in hospitals after the insurer declined to settle the bill as HIV is considered an underlying condition. “This is not only discrimination on the part of the insurance, but also a breach of the patients’ privacy by the hospital which shared the results.”

He adds that the same mantra—preserving confidentiality at all costs—should be upheld even when dealing with people who are disabled. “It is upon the health facility conducting the test to ensure that they have a mechanism that, say, a deaf or blind client can give consent.” To do so, Mr Otuoma advises that healthcare providers allow the client to have a person they trust in the room and even with this, consent must be documented. So thorny has been the issue of disclosing the status of people with HIV, that even the President found himself in trouble in 2015 after issuing a directive to County Commissioners to collect up-to-date data and prepare a report on all schoolgoing children with HIV.

President Kenyatta issued the directive at the launch of a global promotion on strategies to deal with HIV/Aids among adolescents, the ‘All In! Campaign.’ However, civil society groups challenged the government’s plan and filed a petition in court to stop the profiling of the children, saying it was unconstitutional and a violation of their rights. In his ruling, High Court Judge Isaac Lenaola ruled that all data collected on children with HIV/Aids ought not to disclose their status. “A declaration is hereby issued that the directive by the national government through the President is a breach of rights and violates their freedom as well as that of their families,” he ruled.

On this, Mr Otuoma says, “The bottom line is that even with parental permission to share their child’s status, it is important to get the child’s consent as the final say. If they decline, then this should be respected.” Although one has a right to non-disclosure, there are instances where this right may be waived.

A medical practitioner can only conduct a test on a person without consent if the person is “unconscious and unable to give consent.”

A woman attending antenatal clinics  can also opt out of knowing her HIV status but when she is heavily pregnant, the service provider can be compelled to tell her her HIV test results especially if she is HIV-positive.

“The doctor will reason with the expectant mother that her status puts her child at risk of infection if necessary interventions are not employed to prevent mother-to-child transmission,” explains Mr Otuoma.                 The other instance where consent of a patient is waived is when a patient is co-infected with tuberculosis in addition to HIV.

In this instance, the HIV status is required because TB and HIV drugs are known to interact negatively with each other and therefore, a healthcare provider might need to know the patient’s status so as to prescribe the correct treatment regimen. But what can be done to ensure that there is a win-win situation between the patient and third parties?

INFORMED CONSENT

Nelson Wanyonyi Osiemo, an advocate of the High Court of Kenya, holds the opinion that, “the health Cabinet secretary has really failed medical practitioners, because the absence of a policy to guide the sharing of such information has put health practitioners at the risk of litigation every now and then.”

And even though the Kenya Legal and Ethical Issues Network on HIV/Aids (KELIN) had filed a case at the High Court seeking to compel the Cabinet Secretary, Ministry of Health to formulate the regulations, the request was declined last December when the court said that due to separation of power, it is not its duty to direct the government on what to do.

Among the orders sought by KELIN was that the court directs the health CS to put in place within 90 days of the court’s judgment, the privacy guidelines, in form of regulations as required by Section 20 of the HAPCA. Equally, healthcare providers have been treading on an ethical minefield in taking care of HIV-positive patients especially around research.

Organisations such as the Kenya Medical Research Institute (Kemri) whose sister organisations such as Family Aids Care and Education Services(Faces) take care of HIV-positive patients, have had to develop guidelines so that the patient is taken care of while the service provider is allowed space to perform their duties.  

Dr Evans Amukoye, a researcher, says the rules on privacy are strictly adhered to in research.

He stresses that consent has to be informed.

“That means communication has to be understood on both sides before you draw blood for testing, and if they can read, they must be given time to read and even decline if they so wish so that it is not subtle coercion.”

Dr Amukoye adds that if the patient cannot read, he is allowed to bring someone of his choice to look at the results on his behalf.

Reporting by Abiud Ochieng, Elizabeth Merab, Eunice Kilonzo, Adrams Mulama and Verah Okeyo