Monday, September 1, 2014
How an HIV/AIDS victim suffers the pangs of stigmatization
After having been deserted by his wife and some other close relatives, Paulo Mathias Sarwa alias ‘Kiboye’ who is infected with HIV/AIDS disease lives in hardship and suffers the brunt of stigmatization. Being in this situation, he hardly survives by help of well wishers. The 55 year old man is a native of Tarime district who is residing at Gamasara village, Nyandoto ward in Tarime Town Council, and has been living with the HIV virus since 2008 about six years now. The sad story of Kiboye started when he came to discover he is infected by HIV virus after he had underwent for the first time a voluntary testing of the HIV/AIDS disease in 2008 which was issued free of charge. The test was carried by Tarime district health officials as part of the countrywide national campaign that aims to combat the scourge. When the pre-testing of his blood was done and results came out, he began to develop a psychological feeling and fear that took away his normal mind into a distant scene. Since then he had been living in great fear and rather in a somber mood and always could be seen as somebody full of thoughts which seems to have taken him long time to settle down. Older as he is, he is always lamenting for what had made him to decide to undergo for a blood testing, whenever he remembers the maltreatment he currently receives from his closer relatives of being stigmatized. Despite of such positive feelings and humiliation which are currently overcoming him, there is no way he could do to avoid the exercise. When his body health began to deteriorate his wife ran away from him and has never come back up to now to look after him. He had been engaging himself in petty business activities and now he is no longer able to move around to contend with such tedious activities due to his body disorder. He is currently facing hard time to get his daily bread, and hardly could he survive by depending on well wishers who feel sympathy with him by offering whatever they have to let him keep life going on. This is because of the fact that, he is not physically fit enough to do any energetic activity such as farming that could make him earn money with which to buy food and other necessities for his life. Reasons for his physical unfitness has occurred due to the deteriorating body health which to a greater extent has been caused due to lack of proper diet and worse still has no one to help him around. He narrated this sad story to the writer of this news when visited at his home compound which looks like a deserted homestead consisting of two dilapidated huts in it. The writer of this news contacted him after having come across his sad story which has become the talk of the day by people in the entire village. What surprises most villagers is where the affected HIV victim has been deserted by his beloved wife leaving him alone in the compound without having anyone who could at least give him whatever help he could need as a patient suffering from the deadly disease for that matter. He says, some people volunteers to help draw some water for him in the morning and in the evening from a nearby water stream known by many as ‘Bugura River’ from which most villagers draw water for domestic purposes. The confluence of this river forms the boundary between Tarime district and the newly established Rorya district. According to him, most of volunteers are teenagers who carry with them water buckets down to the stream at such times and come with water, while others help him collect firewood and prepare food for the day. Narrating his life history, he says, he is born in a family of 9 children of the late Sarwa Genge, three of whom are boys and the rest are girls who have all been married. He is the only surviving son and his two brothers are already dead whereas his both parents died long time ago when he was still schooling in primary school. He was married to a woman called Wanchara Bikore of Bunchari village in Sunsuni ward within Tarime district, who ran away from him and got married to another man after he was discovered to have been infected by HIV/AIDS disease. Since she ran away, he has never bothered to follow her behind or demand his bride price back like most African traditional customs demand, but resort to stay alone up to now. The possibility of getting a living has become a great challenge for him indeed and this has been among the major aspect under which he has been suffering, forget about the pangs of solitude caused as a result of stigmatization the situation which has never redoubled up his mind and become normal. In addition to that, what has been confusing him more is whenever he remembers his two children whom he bore with his wife and who do not even think of coming back to look after him, he narrated the story while in a grief stricken mood as tears flowed down his chicks. Two years after his test, in June 2010 he joined a group of 32 fellow victims who formed a small group known by Kiswahili acronym “Jipe Moyo Group” with a view to receive the necessary assistance which the group provides to its members. According to him the founding members of the group plus other members have died and now have remained 17 only. However, he narrated that, the group is surviving with few members because most people already affected by the disease are afraid to expose their status for fear of being stigmatized. The group has been registered in the district as a Community Based Organization (CBO) and operates under the auspices of Tarime town council and members are entitled to receive the necessary help including free medical services which according to him such beneficiaries are in papers and never worked on. He said, their group rarely receives help from the council, and whatever money is issued by the authorities is normally given to the victims as loan which has to be refunded with a specified amount of interest in it. But this has been an uphill task for him to afford for he doesn’t have money.
The town council used to offer them food such as rice, sugar, maize flours and other things to cater for their basic needs, but to the great dismay they are surprised to see such supplies have been cut off without prior notification two years ago, probably due to undisclosed financial squeeze. He says, currently they greatly depend on individual help from well wishers and donors in the district who donates on behalf of their organisation, but such offers do not reach the targeted victims correctly and instead ends up into pockets of the officials who look after the programme in the district. However, he lamented they are sometimes experiencing lots of difficulties when chasing for food aids from the district headquarter, an item which according to doctors is essential for AIDS sufferers in order to keep active their CD4 cells in their bodies. He queried the rationale of their food distribution which he said is quite bad and not consistent, therefore in view of this, he is appealing to the authorities concerned to change the distribution and the trend of supplies so as to keep them full sufficient with enough food stocks. “Such services were normally allocated and issued on a monthly basis, but the authorities concerned have since cancelled them forever and do not get them now” he said and added that, due to the persisting situation, well wishers who seem to be sympathetic with him comes for his rescue. For the medical treatment, he noted that, they are faced with some difficulties of getting dosages on life prolonging drugs the so-called ‘Antiretroviral’ (ARV) and malaria medicines which they are entitled to free dosage, but these are not issued on time as prescribed by doctors on monthly basis. He noted that, he has to trek on foot for a distance of about 10 kilometers going and return to the district hospital for medical services and sometimes come back with nothing. Commenting over the issue, the Director of Tarime Town Council Venance Mwamengo said that, his office has a policy that supports their staff already infected by the disease and not outsiders. However, he couldn’t elaborate what special attention they give to the registered group of people living with HIV in the district. He said when contacted by telephone interview that, Tarime Town Council does not have a budget for the HIV victims registered as CBOs as they get assistances from the AIDS relief organizations through their representatives in the district. He refuted allegations that, his council has failed to provide food and other basic necessities to the people living with the HIV/AIDS disease in the district as such services are not provided by his town council whatsoever. However, this writer contacted Tarime District Commissioner (DC) John Henjewele by telephone and said that his office does not coordinate with the people living with HIV in the district, but promised to give the available statistics which he never issued despite amid pressure by this writer to do so. As the real battle against HIV/AIDS disease among people in Tanzania is being played out in families in both urban and in rural communities, it has been discovered that the local government authorities rarely provides special attention to the affected people in spite of global efforts to prevent the scourge. According to Obadia Kasara, a human right activist in the district, the increased high rates of stigmatization shown to people living with HIV virus is due to lack of proper education coupled by lack of voluntary actions by some people who are not willing to give help to such victims. Describing the nature of stigma, he says that, the rate at which discrimination against AIDS sufferers is increasing in Tanzania now and then as many do not know what their rights are and how they can help to change things for the better attitude. On the other way round the authorities concerned might not be at fault, but AIDS victims have to be blamed for keeping quiet and tend to conceal their status once discovered themselves are already infected, probably due to mistreatments most of whom fears to suffer for the rest of their life. He says, the habit continues to pose a critical barrier to achieving universal access to HIV related prevention, treatment care and support due to a number of reasons, the most being unwillingness of the victims to expose themselves . When contacted to elaborate on how the government attends to HIV victims, the Communication and Documentation Officer for the National Council of people living with HIV in the country (NACOPHA) Mensia John said that, the organization has established about 136 levels of clusters known as Konga at district levels throughout the country. She said through these clusters, NACOPHA coordinates with members most of whom are people already infected with HIV virus in a bid to educate them and put awareness on how to protect them and get the necessary legal assistances. According to Chairman of the National Council of people living with HIV virus, Vitalis Makayula the rate of HIV/AIDS infections among married couples is higher compared to singles. He says the infection rate keeps on rising in Tanzania due to negligence y some couples to follow the directives issued as precautions to be taken against infections. Makuyula was recently quoted by the media as saying that, the worrying situations on various reasons such as change in lifestyle, multiple partners, and lack of negotiations for safer sex is essential to married couples. He suggests on comprehensive on education for married couples on preventive measures on HIV/AIDS and review of policies on the same, which he described as hostile with a view of coming up with a package of new messages that will be friendly and convincing to attract them go for voluntary counseling and testing. Research is urgently needed to identify the most effective ways of tackling stigma and discrimination across a range of contexts. With respect to measures to counter discrimination a more programmatic approach has to be adopted. A Dar based private lawyer Samson Mwambi suggests on the possible way to end the increased stigmatization habit that, unless the government enacts a legislation that would restrict defaulters who are fond of such malpractice of discriminating people living with HIV/AIDS disease.
He further noted that, the legislation should also bind married couples who run away from their partners so as to let them continue looking after the welfare of the already infected partner from being subjected to torture under discrimination. NACOPHA is the umbrella organization comprised of networks of people living with HIV operating countrywide. The National networks are also comprised of registered NGOs and organized groups of people living with HIV at different levels. NACOPHA has a secretariat comprising of both highly skilled technical and administrative staff who coordinate and manage resources received from donors to support implementation of the various program activities. The secretariat staff is headed by the Chief Executive officer who oversees and provides strategic and management leadership and is accountable for managing the organization funds as well.