Monday, April 27, 2009

Stigma Against HIV/AIDS Victims: A Big Shame On All Of Us!

Shola was only six years when she lost her parents to the Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (HIV/AIDS). She was then forced to live with her aged grandmother just like many other kids in the same condition as hers. But things were not as easy as she thought they would be.

First she was asked to leave the school because pupils in the same school with her are being withdrawn for fear of being infected. She went home broken-hearted and disappointed. But that is not the end. Her church treated her with contempt opining that it is a punishment from God for her parent’s lifestyle while her childhood friends began to distance themselves from her one by one.

At the age of nine when her HIV metamorphosized into AIDS, she was admitted into the nearby government hospital as a last resort in the battle to save her life. But the place she thought was a haven for her proved not to be. She was quarantined from other patients in the hospital in the name of special treatment. She was kept in a separate room, fed with special utensils, treated with double gloves and above all had no free interaction with either the health workers or other patients in the hospital.

Whenever they see her they felt very uncomfortable and at a stage told her that she is not welcomed to interact with them due to her status. That was the last straw that broke the camel’s back. She died one month later after this bad news not as a result of her AIDS but primarily because of the way she was treated with stigma and discriminations from the people who were supposed to be friendly and act as a pillar of support for her.

Shola’s case is not a peculiar one but just a fragment of what numerous other people out there with the virus go through on daily basis right from their family members to the public health workers who are supposed to be the last resort in the fight against this virus. This situation has led to a lot of people with the virus preferring not to disclose their status for the fear of being stigmatised and ostracised.

According to a recent report from the Joint United Nations Programme on HIV and AIDS (UNAIDS), “openness about one’s sero-status to family, community or work place is more difficult in some countries or cultures than others. In some cases precautions are needed to protect people who disclose their positive serostatus since this can create serious repercussions for them in their jobs and within their families and communities. Discriminations show up in different ways from almost invisible types of social behaviour on the one hand to physical violence on the other. Similarly PWHA’s (People with HIV/AIDS) fears may range from purely personal and not always accurate perceptions of discrimination all the way to objectively based fears of rejection and violence”.

For instance the pathetic case of a 45 year-old Nigerian, Frederick Ibikunle Adegboye is still very fresh in the mind of the international community. The Nigerian Institute of Journalism as a result of his HIV positive status terminated his offer of provisional admission. This is despite the fact that he passed all the entrance examinations and paid all the necessary fees. In fact he confided his serostatus to the school provost so as to be allowed time to be going for his anti-retroviral treatment as and when needed. The provost betrayed the confidence reposed on her.

This is just one part of the problem, another part of it is that the life-saving anti-retroviral therapy to manage the virus is still eluding vast majority of the victims of the virus in the sub-Saharan Africa. In the early 1990s when antiretroviral drugs became available, AIDS was transformed from a certain death sentence to a manageable chronic disease but only for some. The expense of the drugs and their distribution prevented 95 percent of those living with HIV from getting access to them.

International outrage that millions were dying because of economic disparity helped reduce drug prices and to create the Global Fund to Fight AIDS, Tuberculosis and Malaria in 2002. Through the Global Fund and the US President’s Emergency Program for AIDS Relief, the world began to invest in a massive rollout of antiretroviral treatment in more than 100 developing countries. Doctors and healthcare workers around the world have adapted complicated procedures to settings where people often could not access even the most basic care. Already, millions of lives which otherwise might have been lost are being saved. Equally important, providing treatment is becoming a central part of the efforts to prevent further spread of the disease.

Today three million people around the world are alive thanks to antiretroviral treatment for AIDS. This is a sharp increase from 350,000 just about five years ago. By 2010, more than five million people are likely to have been given access to these drugs. Yet there is a long way to go before all the people with HIV who need these life-saving drugs can have access to them. Today the need is for 10 million people, but until we can stem the growth in new HIV infections, that number will continue to grow. Africa is obviously the place this attention needs to be focused as a result of the havoc the virus is causing there and the inability of the victims to access the anti-retroviral therapy. Poverty is the main factor for this ugly situation.

In 2003 at the opening ceremony of the 11th International Conference for People Living with HIV/AIDS held in Kampala, Uganda, Ben Plumley, Chief Executive Officer at the UNAIDS decried that it is, “serious injustice to see that only one percent of the 4.1 million people in sub-Saharan Africa who need anti-retroviral therapy have access to it”.

He charged the conference to look for ways to close this vast treatment gap even as he opined that they are under a moral obligation to also tackle the intolerance and fear that prevents people from accessing the service they need. Same charge was also repeated recently at the Monthly Journalists Roundtable Talk of the Local Voices Project of the Internews Network in Abuja where journalists and stakeholders in attendance spoke in unison in condemnation of the stigma and discriminations facing the people living with the virus.

The first salvo was fired by Esther Agyo the Chief Nursing Officer of Wuse General Hospital in Abuja who expressed dismay over the way people living with the virus are treated and wondered aloud where our virtues of love, caring and charity in times of need has gone to. She condemned in clear terms the mandatory HIV/AIDS testing being imposed on patients by some health establishments before treatments are given opining that they are not only against the fundamental human rights of patients to choose their own form of treatment but also very unethical, inhumane and cynical.

“HIV test should be voluntary and not mandatory but health workers force it on patients. This is unethical and demoralises the patients by making them loose absolute faith in both the treatment and care given to them. This is one thing we do not do in Wuse General Hospital and that has endeared our patients to us and strengthened the faith they have in us”, she said.

She made a passionate call for patients opinion and consent to be taken into consideration and respected before carrying out any test on them even as she called for heartfelt love and caring for people living with the virus noting that the next victim may likely turn out to be our relative who is obviously going to receive same treatment we meted out on others.

Olufemi Dada the Chair of Nyanya General Hospital also in Abuja concurring with Esther Agyo noted that people living with the virus are not apes or beasts but humans who are in need of our help. Explaining that since the virus could not be contacted through shaking of hands, hugging or discussing with the victims we should endeavour to afford them that opportunity.

Taking a theological angle Peter Ikiti an evangelist and the coordinator of the United Care and Productivity, a non-for-profit devoted to counselling and caring for people with the virus noted with disgust that people living with the virus have been enduring the barbarity of the godless behaviours of our health workers with fortitude, having been kept in semi-quarantine without prospect of change. He explained that once a person living with the virus arrives at the hospital he faces the usual behaviours of the health workers which ranges from stigma to discrimination and lack of attention.

“Some of them at present are in a very bad condition. Everything that has to do with them is separated including their bedside. It is difficult to notice tuberculosis patients in the hospitals but people living with HIV/AIDS are very conspicuous because of the way they are usually quarantined by health workers. Separate seating arrangements, separate departments for treatment and special doctors without special training. The brown envelopes and polythene bags used for the packaging of their drugs are special. Once a person living with virus comes out with a brown envelope or bag every other person will know he is a victim. All these in the name of special attention! But it is rather a special way of stigmatising, discriminating and humiliating the victims”, he claimed.

The Roundtable participants observing that the recent UNAIDS progress report reported a huge progress in the fight against the virus regretted that critical gaps continue to exist particularly in access to HIV medicines and efforts to combat stigma and discriminations and protect the rights of people living with the virus.

They called for compulsory nametag and number on the uniform of all health workers for easy identification and reporting to appropriate authorities for necessary punitive measures against the erring ones. This is in addition to their suggestion that the government should take it as a responsibility to organise frequent workshops for health workers on HIV/AIDS prevention and control, support and management and the care of the people living with the virus.

For over 25 years, AIDS has ravaged the lives and livelihoods of millions of people. Since the early 1980s, nearly 30 million people have died from AIDS. That is about half of the UK population. But over the past few years, a quiet global revolution has enabled millions of people infected by HIV to live healthy lives. More are still to be done though. For instance in Haiti with a population of 9.6 million, 115,000 people are living with the virus while only 13,586 are on anti-retroviral treatment. India has a population of about 1.13 billion with 2.5 million living with the virus while only 126,400 are on the treatment. Mali with a population of 12.2 million has 130,000 people living with the virus with only 15,450 on the treatment.

In Peru with a population of 27.9 million, 10,400 are on the treatment out of 93,000 living with the virus. Russia has 31,000 people on the treatment out of 940,000 living with the virus in a population of 143.2 million. In Rwanda out of 150,300 people living with the virus only 44,400 are on the treatment in a population of 9.2 million. South Africa has a population of 47.4 million out of which 5.5 million people are living with the virus but it is only 488,739 that are receiving the treatment. In the neighbouring Swaziland with a population of about 1 million, about 20,610 are on treatment out of 220,000 living with the virus while in Vietnam with a population of 84.2 million, 132,628 people are living with the virus while 14,180 receives the treatment. Nigeria with a population of about 145 million people has about 3.5 million of the population infected with the virus while only about 124,572 are on the anti-retroviral treatment. In fact India, South Africa and Nigeria are the countries bearing the highest burden of the virus in the world.

Free antiretroviral treatment is saving millions of lives and that alone is enough reason to continue to widen access to it. But the main challenge in the fight against AIDS today is preventing new HIV infections. Worldwide 2.5 people are infected by HIV for every person that begins treatment. To win the fight, we must turn those numbers around. Antiretroviral treatment helps in this struggle by turning a certain death sentence into merely a chronic disease. In doing so, fear and stigma is reduced, more people will dare to be tested for HIV, and it will become easier to talk openly about how it spreads and how to protect against infection.

There are other challenges. Even where those infected have access to antiretroviral treatment and their immune systems begin to recover, infections and illnesses they have already developed because of HIV may take their lives. Tuberculosis continues to be the leading cause of death among people living with HIV/AIDS, and hepatitis, liver diseases and HIV-related cancer also take their toll. Nonetheless ARV treatment is generally successful. After two years on treatment, eight out of every ten people who started are still alive.

The success in rolling out antiretroviral treatment against formidable odds should inspire us to go for the test and since there is no cure yet testing remains the only way to stem the tide of the spread.

1 comment:

  1. The original of this article was titled 'They are not beasts, show them care' and was first published by the Guardian Newspapers of Nigeria on Tuesday August 17, 2004.