Stigma of AIDS prevents some in Tanzania from seeking services

From the Sunday Observer in Tanzania:

Asha Said had been waiting patiently for her antiretroviral medication when a nurse at the Infectious Disease Centre (IDC) curtly told her that her medicine was not available.

She had exchanged words with the same nurse earlier, and felt she wasn't getting the attention or the respect she deserved. So she decided to wait for Dr Guerino Chalamila, the head doctor at the clinic, to raise the issue with her.

Dr Chalamila is the deputy country director at the MUCHS-Dar-Harvard (MDH) Care and Treatment Programme

"When I met her, I told her that without AIDS, this nurse would have been out of work," says Asha.

Her simple words did not fall on deaf ears. When she went back for her Aids clinic appointment the following month, the offending nurse was no longer around.

Unfortunately, not all HIV/AIDS patients are as assertive as Asha, and navigating the long lines, paperwork and impersonal staff associated with AIDS treatment can be a difficult and sometimes embarrassing ordeal for HIV-positive Tanzanians.

Asha’s friend, Fatuma Bakari, has her own tales about her experiences at AIDS clinics.

She says when she goes to the clinic at Temeke Hospital, she spends hours waiting because there are so many people.

The staff, perhaps because they are overwhelmed, do not consider individual circumstances that could hinder a person`s access to the service.

Patients given numbers when they report to the clinic and when it is someone`s turn to see the doctor, a nurse will call out the number.

"I once sat next to a woman who couldn't read. She kept asking me if it was her turn to go whenever the nurse called," says Fatuma.

Beyond the disease itself, people living with HIV/Aids find that they have to deal with socially imposed problems.

Widows find that on top of a declining CD-4 count, they also have to tackle poverty and the directly related issue of proper nutrition.

But a common challenge that People Living with HIV/AIDS (PLHAs) have to come to terms with is, stigma from the society around them.

The government is aware of existing stigma and has in fact passed a law that criminalises discrimination against people living with HIV/AIDS.

The HIV and AIDS (Prevention and Control) Act 2008 provides for prevention, treatment, care, support and control of HIV and Aids, promotion of public health in relation to HIV/Aids; to provide for appropriate treatment, care and support using available resources to people living with or at risk of HIV/AIDS and to provide for related matters.

Part Seven subsection 29 of the Act reads: 'Any health practitioner dealing with people living with HIV and AIDS shall provide health services without any kind of stigma or discrimination'.

Apart from prohibiting stigma and discrimination, the act also directs that a person who contravenes those provisions, commits an offence and is liable to a fine of not less than 2m/- or a jail sentence of not more than one year, or both.

Various reports have noted that discrimination, or stigma, increases chances of infection as it forces the disease to go 'underground'.

Flora`, after finding out she was HIV-positive, decided to go to the clinic at the Infectious Diseases Centre (IDC) in the city centre. She lives at Kiwalani.

When I talked to her she was just recovering from the shock that her husband had found out that she was HIV-positive.

She had hidden her clinic card and took her medication in secret so that her husband wouldn`t find out her status. But one day her husband stumbled upon the clinic card, and being suspicious, he took it to a doctor to have it read for him.

Once the doctor had explained what the clinic card signified, he went home and inspected the house, where he found her medication. Flora says she remembers fainting after she found out that he knew.

She says they have managed to talk about it since then, and continue living together now. Her husband has also tested positive for HIV.

Joseph Katto is the national executive chairperson of Service Health and Development for People Living with HIV/AIDS (SHDEPHA+).

On the organisation’s website, the first thing that people get to see is his testimony on how he learnt he was HIV-positive and how that affected his life, including losing his job with a large oil company.

That was in 1992, 16 years before the relevant legislation was passed to prohibit such forms of discrimination.
Since then, Katto has been at the forefront of the war against HIV/Aids.

His focus, as his frank and open personality would indicate, is to eradicate stigma so that people living with HIV/AIDS can lead fulfilling lives and be happy.

Nowadays, he says, HIV/AIDS isn`t as terrifying as it used to be in the ’90s. He recalls visits to television stations to educate the masses about the disease and combating stigma.

"People were just bones," he says. Then he points at a healthy looking woman who is also sitting in the office with us and says now people living with the AIDS virus are better off.

Still stigma persists. It's been 17 years now since he embarked on this journey and the end still seems to be ever distant.

At SHDEPHA+ they also deal with what he calls ‘self-stigma’. This kind of stigma happens when a person living with HIV/AIDS keep this fact to himself, like Flora, for fear of being discriminated against by friends and family.

Katto says there is need for more education and awareness about HIV/AIDS. It is also important for the health practitioners who often deal with PLWHAs at their most vulnerable, to be sensitive.

SHDEPHA+ had to recently find a different job for a member who was posted with a big hospital in Dar es Salaam at the AIDS clinic.

"He came to us crying, saying he couldn’t take it anymore," Katto says.

He talked about nurses who purposely hid patients’ files and sent people back without their drugs.

Because this person was also HIV-positive he said that it pained him to watch others like him suffer.

He had to quit his job at the hospital and now works with a non-governmental organisation.

Jovin Tesha, a counsellor at Pastoral Activities and Services for People with AIDS (PASADA), says self-stigma can be contrasted with social stigma.

"It occurs with any disease that is associated with shame," he says.

He says such people might not even wish to go to a clinic for treatment.

Katto says some ashamed HIV-positive people will go so far as to attend clinics in areas where they are unlikely to come across people who will recognise them.

"At Temeke when people come from collecting the drugs they store bottles in nylon bags and throw the boxes away," says Fatuma.

These people do not want others to know that they are taking ARVs, she says.

But Dr Goodluck Mwakitosha, programme officer with the International Centre for Aids Care and Treatment Programme (ICAP), says while such habits exist they do not pose a serious problem medically.

"It depends on where they put the drugs. But unless they mix them with something else then there is no effect," he says.

Amelia Jacob, who is with SHDEPHA+, says they have dealt with people who actually store their ARVs at their neighbours` houses so that their own families won't know of their HIV status. It is easy for such people to skip taking their medicines when an emergency occurs.

"Others have fallen sick inside their houses and since no one knows they are supposed to take ARVs, they have missed their medication for that entire time," Katto says.

Social perceptions continue to be an issue as institutions and individuals strive to find the best ways to combat HIV/AIDS. No drug can remedy stigma; it is only through people learning acceptance and understanding that this war can be won.