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
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,"
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
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
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
Nominate the person, indicating name, phone contact and what the
person has done in his/her community. Also give your name and
Write to: The Features Editor, New Vision, P.O. Box 9815, Kampala or