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I will register success when HIV/AIDS stigma is defeated




 

A MERE mention of the word slim (AIDS) in the 1980s sent chills down many peoples' spines. Eric Lutwama 30, an employee with TASO says the disease was extremely feared that he believed it would one day wipe out the entire world.

It was not until Noerine Kaleeba founded The AIDS Support Organisation (TASO) in 1987, that hope re-surfaced.

Lutwama, who had lost many relatives to the pandemic, saw it as an obligation to join and reinforce her great service to those infected or affected by the pandemic.

According to Lutwama, TASO has served over 200,000 patients since its inception, giving not only antiretroviral drugs (ARVs), but also counseling services, food, financial support, and community capacity building. "This is a big credit to Noerine," he argues.

To achieve this, Noerine had to create a strong donor support base. "Winning trust from donors was more difficult at the start than even now. She (Noerine) was the chief solicitor at the time," Lutwama says.

The Swedish International Development Agency (SIDA), the US-based Centre for Disease Control and Prevention (CDC) and the United States Agency for International Development (USAID) are among the donors currently funding about 90% of TASO's budget.

Zeal born out of stigma

The structure of Room 20 in New Mulago hospital's Ward 6B remains vivid in Noerine's mind albeit for the sad reason. Her husband, Christopher Kaleeba, passed away in the ward amid immense pain and stigmatisation.

Only two doctors; Edward Kigonya (New Mulago medical superintendent) and Moses Kamya (an intern then), were available as the rest of the medics kept a distance.

Kaleeba was diagnosed with HIV/AIDS at Castle Hill Hospital in the UK in June 1986 and died on January 23, 1987, two months after he had been admitted to Mulago.

Noerine, 57, does not need to consult any literature to recount the horrible experience.

In the sitting room of her single-storeyed mansion in Takajunge, 4km on Mukono - Kayunga road, Noerine narrates her experience with such precision and anguish as if it happened yesterday.

Not even her then high-ranking position as the principal of Mulago's school of physiotherapy could cushion Noerine and her husband against stigma.

Noerine says prior to their horrible experience, doctors at the UK hospital had been so caring, which is why she got annoyed with Mulago medics when they stigmatised them and other HIV patients.

"Can you imagine even my own family members and friends neglected me? Only our parents and a friend called Mary Lukubo stood by me," she says.

When Kaleeba was admitted, the British Council paid for Noerine's flight to the UK to attend to her husband. When he improved, Noerine returned in mid September 1986 and her husband followed on November 2, the same year.

The stigma she received right from the day her husband arrived at Entebbe Airport gave her more zeal to care for HIV patients.

While a teaching assistant at Makerere University, Kaleeba won a British Council scholarship to pursue a master's degree in political science at Hull University, UK.

"When he completed his master's degree, the British Council offered him another bursary to study a PhD. He was so excited. But that very day, he collapsed in the Hull University library," Noerine recounts.

She poses a little as she steals a glance at her late husband's portrait fixed on the wall in the dining room. Her voice grows stronger. She speaks with confidence, astuteness and passion.

"The TLC we got from doctors in the UK was so exceptional that it cushioned us from stigma until we came back to Uganda. If we had 50% of that care in all hospitals worldwide, the world would be different," Noerine notes.

It was the stigma she endured that gave Noerine the courage to fight for the rights of those infected or affected by HIV/AIDS. That is when she hatched the idea to set up TASO right from the room where her husband died.

Noerine remembers visiting wards 4A, B and C where people with HIV were isolated with no medical attention. "There was a young man called David Lule who had been abandoned in Ward 4B by his family because they had contracted HIV. That is when my resolve grew stronger."

Ugandans, 12 of them HIV positive, Noerine took up the mantle to set up TASO. Though the first TASO centre in Old Mulago opened its doors after the death of Kaleeba, the idea, was conceived before his death and that is why Noerine considers her late husband, Lule (also deceased) and 12 other patients who died within the first year of TASO's inception among the founder members.

Battle begins with birth of TASO

The organization had its first offices in a ramshackle single-room in Old Mulago that was initially being used by polio patients. The then Old Mulago medical superintendent, Dr. Stellah Tibayungwa, helped Noerine acquire the room.

As the founder and director, Noerine steered TASO from 1987 to 1995. The organisation blossomed into a pioneer movement to address stigma, and restore hope and dignity of people and families living with HIV/AIDS in Uganda.

Although she was not getting a salary from TASO up to 1990, Noerine was so annoyed with the stigma she was enduring that she resigned her position as the physiotherapy school's principal.

"During that time, I depended on per diem because I used to travel a lot. I also got sympathy support whenever I presented papers about HIV/AIDS," she recalls.

In January 1996, the UN formed an anti-HIV/AIDS arm (UNAIDS) and because she had her name registered you know anyone who has played an important role in the fight against HIV/AIDS in their communities?

Nominate the person, indicating name, phone contact and what the person has done in his/her community. Also give your name and phone number.

Write to: The Features Editor, New Vision, P.O. Box 9815, Kampala or email: features@newvision.co.ug



 


All articles are republished on AEGIS by permission. Material may not be redistributed, posted to any other location, published or used for broadcast without written authorization from Managing Director/Editor-in-chief, The New Vision, P.O. Box 9815, Kampala - Uganda, Tel/fax: 256-41-235221, E-mail: wpike@newvision.co.ug 



Information in this article was accurate in September 27, 2009. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.