Confidentiality,a double-edged sword

*PHYLLIS KACHARE | Thursday August 7, 2008 00:00

Now, 76-year-old grandmother Ena* of Mutare, a town on the border between Zimbabwe and Mozambique, is living with HIV herself. But the burden of caring for her eight orphaned grandchildren remains entirely hers.

'Someone should have told me that my children were dying from AIDS,' laments Mbuya, as grandmothers are known colloquially in this part of the world. 'I could have taken precaution while I cared for them during their illness. I could have avoided exposing myself to the virus. Now, who will care for me when I eventually fall ill from AIDS? Who will care for my orphaned grandchildren when I die from this disease?'

In a country where poverty forces people to prefer home-based care over  hospitalisation, nothing was communicated to Mbuya regarding care of her children each time her daughters and son left a hospital. Prior to their deaths, Mbuya's progeny spent time at various state hospitals. Nobody told her she had to wear gloves every time she handled her ailing family's bodily fluids to prevent being infected. She did not know her children were living with HIV.

The case of 22-year-old Sibongile, who recently married Ben, a 48-year-old widower, is no less revealing. Although the couple says they are yet to go for voluntary counselling and testing, it is well known in the local community that Ben's first wife died after a long illness (euphemism for AIDS-related illnesses), and that he is taking anti-retroviral drugs.
Sibongile does not know about this.

Stakeholders in Zimbabwe are lobbying for the amendment of laws to allow medical personnel to disclose the HIV status of their clients to either spouses or close relatives providing home-based care.

Presently, medical personnel are ethically and morally bound to keep all patient information confidential. The Medical Practitioners (Professional Conduct) Regulations C125/87, Section 22, upholds the principle of medical practitioner-client confidentiality.

'It is based on the belief that it is important to maintain confidentiality about health matters of patients if their trust or confidence is to be gained for full disclosure and proper treatment of ailments,' writes Women and Law Southern Africa (Wlsa) national coordinator Sylvia Chirawu in Challenging the Status Quo -- Gender, HIV/AIDS and the Law in Zimbabwe.

Only courts can subpoena for medical records to be released, especially in matters regarding sexual offences, particularly the offender/victim's HIV status, as this has a bearing on sentencing.

But, 'If doctor-patient confidentiality is breached, then patients will simply stop seeking medical help and that becomes too dangerous,' says Sylvia Chirawu. 'Disclosure of HIV status is a double-edged sword in a society like ours where stigma is rife. Whose rights become paramount here? The patient, the spouse/partner or other such people providing care for the sick?'

Chirawu says research by her organisation shows that conditions are not yet conducive for HIV status disclosure to third parties.

'We have evidence of violence on women who tested HIV+ before their husbands,' she says. 'Disclosure to their husbands led to violence being perpetrated by the same husbands. Women are usually the first to know their status through ante-natal clinic visits. They are then chased away from their matrimonial home by angry husbands. Under these conditions of discrimination, should we allow medical personnel to disclose HIV to partners without causing risk to their clients? It is a dilemma facing the nation, but it is time we started debating these issues and coming out with the way forward.'

Professor of Pharmacology at the South African University of the Limpopo, Norman Nyazema, says while there is need to debate issues, medical personnel are already heavily burdened with the problems associated with saving lives under difficult conditions. Obliging them to notify HIV status to partners and caregivers would be unfair and untenable.

'Untenable because, to which of the [client's] multiple partners would the doctor disclose HIV status?' Professor Nyazema asks. 'You are assuming partners also visit the same practitioner, which is wrong. They may not even live in the same place.'

'HIV and AIDS are not notifiable conditions,' he says, even when presented with Sibongile and Ben's situation. 'Most HIV infections are through sex, which is a conscious decision that individuals take. One actually takes the initiative to have sex and so, takes responsibility to know the HIV status of the person one is having sex with. Why must we burden health personnel with the obligation of disclosing Ben's HIV status to Sibongile? She should have found out herself before she even married him.'

Professor Nyazema said the challenge is for society to encourage VCT (Voluntary Counselling and Testing) or provider-initiated testing.

'Men are the major drivers of HIV in the Southern Africa region and the challenge is for them to be encouraged to get tested for HIV, instead of the current scenario, where the woman gets to know her status first, either through ante-natal clinic visits or illness,' he said. But the regional executive director of Family AIDS Care Trust, Jephias Mundondo, disagrees.

'The dilemma is that if we are going to protect the HIV infected from stigma by not disclosing their status, how do we protect the care-giver who is at a high risk from HIV infection because of contact with the body fluids of the sick patients they care for?

'For as long as we continue to hide behind the finger of confidentiality, we will wipe out the care-giver population because no one has told them to protect themselves from HIV infection. Caregivers should be informed in such a manner that they also do not discriminate or stigmatise the patient,' says Jephias Mundondo.

Mundondo said Mbuya's situation makes a strong case for the confidentiality clause to be revisited. During WLSA's research on the topic, some rural women in Zimbabwe called for a law that makes it compulsory for disclosure to be made to the spouse or partner by medical personnel.

The Zimbabwe Human Rights NGO forum advocates spousal notification by medical personnel on the grounds that those involved would also plan for their futures accordingly. This will set precedent for a natural progression towards making disclosure the norm.

The national director of the Zimbabwe AIDS Network, Lindiwe Chaza-Jangira, concurs on the need for a national debate. Indeed, she believes medical personnel should be trained to communicate news of HIV to their clients' close relatives in a sensitive manner.

'We have been dealing with HIV and AIDS issues for over 25 years now, and it's time we reviewed how we have done business,' says Chaza-Jangira. 'Definitely, there are things that we have been doing that need to be changed. Disclosure by medical officers to concerned parties should be the way to progress. Before, we had to protect those who would have tested HIV+ from discrimination and stigma, but now we should be moving towards protecting those who are likely to be harmed in the process of protecting the rights of the HIV infected.'  (2010 Panos Features)

*Phyllis Kachare is a senior journalist and editor based in Zimbabwe. She has won several awards for reporting on HIV and AIDS.