Although with the availability of drugs, the HIV/Aids is no longer a death sentence as many HIV positive people have lived with the virus for more than 20 years, Stigma is killing more people than the disease.
KAMPALA – In the wake of the celebrations to mark World Aids Day on December 1, PML Daily’s Senior Staff Writer David Mafabi looks at the grey areas on where the fight against HIV aids becomes emotional especially in the world of work, either in the formal sector or the informal sector.
In a 3-part series, this website examines how the ugly face of stigmatization is reversing and holding back efforts to reduce and eliminate the Aids scourge.
“When the doctor told me that we needed to discuss the results of my blood test, I already knew I was positive; because, my late husband, had also been diagnosed positive”.
Oliver Wanyenze tested for HIV, four years after the death of her husband in 2000. The result was positive. It was hard for her to accept the news, since she saw this as an end to life, all her dreams shattered.
And it was at this time when HIV/Aids was making headlines around the world; acquiring HIV/Aids meant inevitable early death.
After the burial, Wanyenze was taken on by her elder sister. That was the beginning of a new reality in her life, a reality that he has lived with.
She became sickly in 2010 and was admitted at JCRC, Mbale, was diagnosed with TB and crypto coco meningitis.
And after four months in hospital, she was ready to go home, not alone, but with what she terms as ‘a drug shop of drugs’. Unknown to her, she had tested positive for HIV and had been started on ARVs.
So, was she HIV positive? No one was willing to give an answer to this question. Her sister dodged it, and so did everyone around her but they just isolated her.
“Even when I knew my husband had died of HIV/Aids, I remained in denial because I was not falling sick frequently. I feared the social prejudice I would face from my family and friends if I told them about my status,” says Wanyenze now 38.
And when she started falling sick again, all her relatives’ and friends’ knew I would die anytime because they knew that I was positive even when I did not disclose it to them.
“Their behaviour changed, they did not treat me well. They refused to give me their support, isolated me and even took away the children who were caring for me,” she said adding that this was painful before breaking down into tears.
She revealed that she was given a special cup for taking her porridge, a special plastic plate for her food, basin and she was separated from the rest of the family even when eating food.
“I would be insulted by children, I was rejected, gossiped about and excluded from social activities and often I felt nervous about telling others that I have HIV due to the fear of stigma, “said Wanyenze.
“It was worse when I coughed, here everyone ran away holding their nostrils and mouth, it was bad,” said Ms Wanyenze.
“I spent almost a year in agony, thinking that I would die anytime. I lived alone and could see death every time, I was bedridden and couldn’t leave the house, most times I thought about committing suicide,” says Wanyenze.
Wanyenze is not alone; there are many people out there who are suffering from HIV/Aids across the world who are going through this stigma and discrimination.
Dr Jonathan Wangisi, a former director of operational research at TASO said denial and stigma still stand in the way to fight the disease and that many people have fears, prejudices or negative attitudes about people living with HIV.
He explained that stigma and discrimination against people who were living with HIV/Aids made it hard for many to openly disclose their status in the late 1980s, early 2000 and that even now in some communities.
“Even when there is medicine today that can make one live positively and longer, there are still communities that think that being HIV positive means dying sooner and there is a high sense of desperation,” said Dr Wangisi who is now the District Health Officer, Mbale.
Even though she found out that Wanyenze was HIV positive in 2010 four years after her husband’s death, it took her another ten years before she could openly disclose her status.
Dr Wangisi cited stigma and discrimination against people living with HIV as the biggest challenge in the fight against the scourge in Uganda today.
World Health Organisation defines HIV-related stigma as prejudice, negative attitudes and abuse directed at people living with HIV and AIDS and that in 35% of countries with available data, over 50% of people report having discriminatory attitudes towards people living with HIV.
According to Avert, a UK-based charity that provides accurate and trusted information about HIV and sexual health worldwide, Stigma and discrimination manifest itself in many ways, discrimination and other human rights violations may occur in health care settings, barring people from accessing health services or enjoying quality health care.
www.avert.org adds that some people living with HIV and other key affected populations are shunned by family, peers and the wider community, while others face poor treatment in educational and work settings, erosion of their rights, and psychological damage and that these all limit access to HIV testing, treatment and other HIV services
The former Uganda AIDS Commission chairman Dr Vinand Nantulya says that despite advances in the prevention and treatment of HIV, the shadow of HIV stigma still looms large, affecting many of those of living with the disease.
He explained that the stigma is so profound that it often seems to fly in the face of public awareness. “And there are many people out there who would prefer to avoid HIV testing than to risk exposing oneself to discrimination or disapproval,” added Dr Nantulya.
He said further that attempting to minimize these fears, or even rationalize them, fails to take into account the complex dynamics that both trigger and perpetuate stigma.
“We should stop stigmatising people living with HIV/ Aids, stigmatisation is the biggest threat to overcoming the spread of HIV, especially among the young people today,” said Dr Nantulya.
Wanyenze believes that it is the shame and stigma of HIV that is literally killing people living with HIV/Aids as they suffer in silence.
the director General Uganda Aids Commission says that because many people do not want to accept that HIV is real, this has also hampered the campaign against the disease and whenever you ask people about HIV/Aids, many of them bow their heads, unwilling to rise up to the challenge.
He said HIV-related stigma exists worldwide, although it manifests itself differently across countries, communities, religious groups and individuals adding that in Sub-Saharan Africa, for example, heterosexual sex is the main route of infection, which means that HIV-related stigma in this region is mainly focused on infidelity and sex work.
Speaking to PML Daily at her village in Bulwala in Sironko district, Ms Nakayenze said we must stop stigmatising people who have been infected by HIV if we are to stop the spread of HIV/Aids, especially among women and children.
“It is very unfortunate that some communities are yet to accept that Aids scourge is here with us. I am appealing to all to stop these stereotypes and misconceptions and embrace those who have been infected and affected so that we can bring the figure down,” she said.
Ms Agatha Nafuna, a retired midwife said as a professional nurse, she had handled Aids victims before and witnessed how people living with the disease are isolated from society.
Wanyenze who started drugs in 2010, says now with the availability of drugs, the disease is no longer a death sentence as many HIV positive people like her have lived with the virus for more than 15 years.
“Medical workers started me on ARVs which I was advised to consistently use in order to reduce my viral load, I have done this religiously and look at me now, I look very healthy,” said Wanyenze.
Many people are dying because of Stigma and denial and Wanyenze husband was one of them.
“I lost my husband, I have lost friends and relatives and none of them ever came out openly about their status because of fear of stigmatisation in society,” said Wanyenze.
But in 2010, she decided to take a bold step by coming out publicly about her status and reaching out to other infected people. “Already there were treatment options and people were now living longer.
Ms Wanyenze says she is a living testimony that HIV/Aids is no longer the death sentence that it was two decades ago. She describes it as an ordinary disease that can easily be handled if people come out openly about their status, seek treatment and follow instructions from their doctors.
Dr Musobo says that currently, patients are put on antiretroviral treatment when their CD4 cell count drops to 200 and that the World Health Organisation today wants people living with HIV/Aids to start life-prolonging treatment earlier.
He explained that there is a cyclical relationship between stigma and HIV; people who experience stigma are marginalised and made more vulnerable to HIV, while those living with HIV are more vulnerable to experiencing stigma and discrimination.
He added that myths and misinformation increase the stigma and discrimination surrounding HIV and AIDS and that roughly one in eight people living with HIV is being denied health services because of stigma and discrimination.
Dr Musoba stated that adopting a human rights approach to HIV and AIDS is in the best interests of public health and is key to eradicating stigma.
www.avert.org, global information and education on HIV/Aids says that; “Whenever AIDS has won, stigma, shame, distrust, discrimination and apathy was on its side. Every time AIDS has been defeated, it has been because of trust, openness, dialogue between individuals and communities, family support, human solidarity, and the human perseverance to find new paths and solutions,”
Rev Can Prof Gideon Byamugisha, an Anglican priest, and the founder of African Network of Religious Leaders Living with or Persons Affected by HIV/AIDS and living with HIV says stigmatising transmission of HIV will only lead to the silent spread of the disease.
“At the end of the day, people will not tell others what their status is and when they keep quiet, they continue spreading the disease,” she said.
But Prof Byamugisha is well aware that the fight against HIV/Aids, let alone stigma, especially for those living positively are not going to be an easy task, but he has hope that at some time they will overcome.
Dr Emmanuel Luyirika, the executive director at African Palliative Care Association says, HIV drugs are very important in keeping people healthy over the years and outlines the possible consequences of HIV-related stigma as loss of income and livelihood, loss of marriage and childbearing options, poor care within the health sector, withdrawal of caregiving in the home, loss of hope and feelings of worthlessness and loss of reputation.
Overcoming HIV Stigma
Dr Stephen Watiti, a senior medical officer and clinic manager at Mildmay Centre says learning to overcome HIV stigma is not always an easy thing, it requires a degree of self-reflection, as well as an honest assessment of your own personal biases and beliefs.
He adds that one of the aims is to understand which of your fears are perceived (based on attitude or perception) and which are enacted (based on actual experience).
By separating the two, you’ll be better equipped to lay out a strategy to not only overcome your fears but to better protect yourself against possible, real acts of discrimination or abuse.
The Joint United Nations Programme on HIV/Aids (Unaids) and the World Health Organisation estimate that since the availability of effective treatment in 1996, some 2.9 million lives have been saved. Like Ms Wanyenze, many HIV positive people are trying to come out and lead normal lives. But that stigma cannot allow them to do so.
According to Dr Stephen Watiti, there is still a high level of discrimination and stigma against people living with HIV/Aids and their families.
“People living with HIV/Aids must always be involved in the various programmes that affect them. There must be a supportive legal and ethical environment which is protective of human rights,” said Dr Watiti.
He said the priority should be on creating awareness and public health education to reduce stigma among people living with Aids and that in Uganda about 1.1 million people are living with HIV/Aids and another one million have died since the disease was first identified in 1981, including 63,000 in 2008 alone.
How to end Stigma
Dr Muhammad Mulongo, the former DHO for Bulambuli district says the ministry of health should design strategies like providing basic information on HIV/Aids prevention and care, increasing access to HIV/Aids testing and counselling services and enhancing positive attitudes in addressing HIV/Aids issues among the youth, and the community at large if they are to stop stigma for the people living with HIV/Aids.
He added that efforts to fight stigma should be consolidated and scaled up to ensure that we create an environment which allows people living with HIV/Aids to live a vibrant and hopeful life