Lying in bed at Kenyatta National hospital, Joshua Lule stared at the ceiling lost in thought. The hospital had been his home for the past three months and while the rest of the patients prepared to see their friends and relatives at half past noon every day, Joshua remained in his recumbent position. No one would be coming to visit him; in fact no one had visited him in the past two months. He had remained hopeful during those first few weeks but as days passed by his hopes of seeing a friendly or family face dwindled. The grim reality that they had all given up on him gradually dawned on him.
But who could blame them? They all had their own lives to live, plans to be made and goals to be achieved. They did not want to be burdened by the likes of Joshua—a man whose luck seemed to be getting worse with every passing month, or as some people in the village said, ‘a man who was cursed.’
Joshua had tested HIV positive one year ago. He had been careless just that one time and now the consequence of that carelessness would forever haunt him. The bar maid denied being the source of his infection and when he suggested that she gets tested, she retaliated by spreading the word throughout the village that he was HIV positive. In a small community such as his, words spread fast and soon everyone started avoiding him. People would whisper whenever he passed by and no one wanted to be seen walking with him. It was as if they were afraid that the virus could be transmitted through contact. Yes so small and remote was his village that such myths reigned supreme.
Dr Paula Fujiwara, Scientific Director at the International Union Against Tuberculosis and Lung Disease (The Union), agrees that people who are HIV positive or have TB or both, are still be shunned by family and friends. She stresses upon the importance of educating people about the ways of TB and HIV transmission and how to prevent them with a view to reduce stigma and discrimination.
Joshua was forced to close down his shop as his loyal customers were not so loyal after all and left him one by one. However, the biggest blow came when his wife also left him—as if she could no longer endure the gossip, the judgemental stares, the turning away of friends. On top of this, having to starve was too much! Having to bear the costs of anti retroviral drugs and to support both her husband and child on her meagre earnings, something inside her gave way. She simply packed her bags and headed back to her parents’ home taking her child with her.
This is what drove Joshua to Nairobi-- the big city where a man could always find some work to do even if it were cleaning the toilets. Thus began his career as a ‘hustler’ (as they are referred to in Kenya)-- he would do any job as long as he got paid for it. At night he would go back to the one roomed shack which he shared with two other men who were all hustlers. So when the cough began he assumed it was a cold and when the nausea came he took it as a sign of exhaustion. But one day when he collapsed on the streets, a few good Samaritans passing by rushed him to Kenyatta National hospital where, after several tests, he was diagnosed with TB.
HIV and TB are indeed closely linked as TB is frequently the first opportunistic infection in people living with HIV (PLHIV) and is still the leading cause of death among people with HIV. While 1.1 million people needed simultaneous treatment for both diseases in 2011 — 79% of them in sub-Saharan Africa-- about one in four AIDS-related deaths were attributable to TB.
Joshua contacted his two surviving brothers who had come to visit him during the first few weeks. The pill burden of both TB and HIV started taking their toll and he constantly kept a bucket beneath his bed for when the nausea hit. The heavy pill burden of the double regimen had drained him of all strength, so much so that at times he never made it to the bathroom and often wet his pants. But what really troubled him was the growing hospital bill and when he sought his brothers’ help, they disappeared. Joshua couldn’t blame them, they were hustlers like him and he was a man with TB and HIV.
Dr Valérie Schwoebel from the Union avers that, “Some stigma and discrimination is still attached to TB in some settings and are not be specific to people infected with HIV who already face much more risk of discrimination and stigma because of their HIV infection. These perceptions may be more frequent in some countries and, within the same country, may vary widely according to the level of education. However, the effectiveness of TB treatment is becoming well known among communities, which can help combat this prejudice. The involvement of former TB patients in the support of patients and families and in the communication of the TB program is probably effective in reducing this problem.”
It is thus imperative to have a strong coordination between TB and HIV programmes and integration of collaborative TB-HIV services into the general health services to deliver high-quality integrated TB and HIV care to thousands of patients like Joshua. It is equally important to educate the public in general to remove misconceptions about the two diseases and get rid of the discrimination and stigma associated with them in communities.
Diana Esther Wangari, Citizen News Service - CNS
August 2013