I will register success when HIV/AIDS stigma is defeated
THIS year, to commemorate the World AIDS Day, December 1, <i>The New Vision</i>, in conjunction with the parliamentary committee on HIV/AIDs, will award individuals who have played a remarkable role in the fight against HIV in their communities. Profiles
THIS year, to commemorate the World AIDS Day, December 1, The New Vision, in conjunction with the parliamentary committee on HIV/AIDs, will award individuals who have played a remarkable role in the fight against HIV in their communities. Profiles of the nominees from which winners of awards will be selected will be published till November.
By Chris Kiwawulo
A MERE mention of the word ‘slim’ (AIDS) in the 1980s sent chills down the spines of many. Eric Lutwama 30, a TASO employee says the disease was so feared that he believed it would one day wipe out the entire world.
It was not until Noerine Kaleeba 57, a mother of four daughters, aged between 25 and 35, founded The AIDS Support Organisation (TASO) in 1987 that Lutwama, who had lost many relatives to the pandemic, saw a ray of hope. He then decided to join in her great service to those infected or affected by it.
Lutwama says TASO has served over 200,000 patients since its inception. The centre offers antiretroviral drugs (ARVs), counseling services, food, financial support and community capacity building. “This is a big credit to Mrs. Kaleeba,†he says.
How did she do it?
To achieve this, Mrs. Kaleeba created a strong donor support base. As the chief solicitor at the time, she was responsible for fund-raising. “Winning trust from donors was more difficult at the start than even now,†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 who currently fund about 90% of TASO’s budget.
Zeal born out of stigma
Room 20 at New Mulago hospital’s Ward 6B remains vivid in Mrs. Kaleeba’s mind albeit for sad reasons. In that ward, her husband Christopher Kaleeba, passed away in immense pain and stigmatisation.
The couple’s experience of extreme levels of stigma gave her more zeal to care for HIV patients. Not even her then high-ranking position as the principal of Mulago’s school of physiotherapy protected Mrs. Kaleeba and her husband.
“Can you imagine that my own family members and friends neglected me? Only our parents and a friend called Mary Lukubo supported us,†she says.
On the contrary, doctors in the UK had been very supportive: 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 Hospital upon his return.
While a teaching assistant at Makerere University, Mr. 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,†Mrs. Kaleeba recounts.
“The TLC we got from doctors in the UK was so exceptional. If we had 50% of that care in all hospitals worldwide, the world would be different,†Mrs. Kaleeba notes.
While her husband lay sick in the UK, The British Council was kind enough to fly her to attend to him. She returned in September 1986 while her husband followed in November of the same year.
With 15 other Ugandans, 12 of them HIV positive, Mrs.Kaleeba set up TASO. Though the first TASO centre in Old Mulago opened its doors after the death of Mr. Kaleeba, the idea, was conceived before his death and that is why Mrs. Kaleeba considers her late husband as one of the founding members.
The battle begins
TASO had its first offices in a dilapidated single-room in Old Mulago that was initially being used by polio patients. The then Old Mulago medical superintendent, Dr. Stellah Tibayungwa, helped her acquire the room.
As the founder and director, she steered it from 1987 to 1995. The organisation blossomed into a pioneer movement that addresses stigma, restoring hope and dignity among HIV positive families in Uganda.
In 1990, as stigma increased, Mrs. Kaleeba was so upset that even when she was not getting a salary from TASO, she resigned her position at Mulago to concentrate on figting for this cause.
In January 1996, the UN’s anti-HIV/AIDS arm (UNAIDS) offered her a job, due to her crusade against stigma, making her UNAIDS’ first global community mobilisation adviser. She held this position for 10 years. She later resigned to concentrate on consolidating TASO and looking after her family. Apart from her own children, she looks after 24 other foster children and pays fees for 18 others, a no mean task.
In 1986, Mrs. Kaleeba first tested for HIV and found she was negative. “I did not take ARVs when they were introduced in 1992 because I was healthy,†she says. She says she knew the results would not change much about her lifestyle. She says the last she remembers having sex, she resolved to use protection, emphasising that it is important. In 2004, during the ‘know your status campaign’ in Malawi, Mrs. Kaleeba took her second HIV test and surprisingly, she was still negative.
Mrs. Kaleeba is discordant case, in which scientists have proved is possible. Discordance is when one partner is HIV positive and the other is negative.
Concerning positive living, Mrs. Kaleeba emphasises care for people living with HIV/AIDS, openness, good health practices through a balanced diet and gainful employment for the affected to restore their self-esteem.
Since many in her community turn to her for counsel, Mrs. Kaleeba plans to start counseling camps countrywide to offer lessons on sex and sexuality, self awareness, career guidance and self-esteem.
As a consultant on HIV/AIDS, she describes herself as a leader with a legacy: “Leaders work for a legacy while politicians work for the next election,†she says.
Josephine Kiroge, 24, Mrs.Kaleeba’s niece and an orphan describes her as a parent and mentor. “She has a heart so big I would wish to follow in her footsteps,†she says.
Mrs. Kaleeba has supported Kiroge through university where she graduated with a bachelor’s degree in social works and social administration. Anthony Bogere, another of her foster sons echoes the same views.
With all this efforts, Mrs.Kaleeba thinks the battle has just begun: “I will register success the day HIV/AIDS stigma is defeated; when the rights of people with HIV are respected and their dignity restored,†she says.
Professional highlights
Studied at Sir Apollo Kaggwa Primary School
Mt. St. Mary’s Namagunga - O’ level
Mulago School of Physiotherapy -diploma.
Oswestry School of Physiotherapy (UK) -post-graduate degree in community rehabilitation.
Honorary doctorates from Nkumba University, Dundee University in Scotland and Geneva School of Diplomacy and International Relations, Switzerland.
Knighthood in Italy
Member and trustee of Uganda AIDS Commission, WHO Global Commission on HIV/AIDS, Mariestopes International, AMREF, and the outgoing chairperson
Board of Trustees Action Aid
2006 - 2008, brief stint as a collaborative of four UK-based foundations: The Diana Fund, Comic Relief, The Elton John AIDS Foundation and the Children Investments Fund Foundation
Has written an autobiography: We Miss You All, AIDS in the Family, where she summarises her husbands story.
Described in Scotland as the “Angel of Africaâ€, Mrs. Kaleeba is globally recognised for her efforts in facilitating meaningful involvement of people living with and affected by HIV/AIDS.
This is believed to be a key pillar in Uganda’s success in the fight against the HIV/AIDS scourge.
Name: Dr Noerine Kaleeba
Age: 57
Location: Takajunge village, Mukono
Education: Diploma from Mulago School of Physiotherapy
Post-graduate degree in community rehabilitation from Oswestry School of Physiotherapy, UK
IMPACT: Founded TASO, one of Africa’s first HIV support organisations, to fight stigma and discrimination and offer information about HIV/AIDS
Contact: 0772 411787.
Do 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 to help people PREVENT HIV infection. 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
By Chris Kiwawulo
A MERE mention of the word ‘slim’ (AIDS) in the 1980s sent chills down the spines of many. Eric Lutwama 30, a TASO employee says the disease was so feared that he believed it would one day wipe out the entire world.
It was not until Noerine Kaleeba 57, a mother of four daughters, aged between 25 and 35, founded The AIDS Support Organisation (TASO) in 1987 that Lutwama, who had lost many relatives to the pandemic, saw a ray of hope. He then decided to join in her great service to those infected or affected by it.
Lutwama says TASO has served over 200,000 patients since its inception. The centre offers antiretroviral drugs (ARVs), counseling services, food, financial support and community capacity building. “This is a big credit to Mrs. Kaleeba,†he says.
How did she do it?
To achieve this, Mrs. Kaleeba created a strong donor support base. As the chief solicitor at the time, she was responsible for fund-raising. “Winning trust from donors was more difficult at the start than even now,†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 who currently fund about 90% of TASO’s budget.
Zeal born out of stigma
Room 20 at New Mulago hospital’s Ward 6B remains vivid in Mrs. Kaleeba’s mind albeit for sad reasons. In that ward, her husband Christopher Kaleeba, passed away in immense pain and stigmatisation.
The couple’s experience of extreme levels of stigma gave her more zeal to care for HIV patients. Not even her then high-ranking position as the principal of Mulago’s school of physiotherapy protected Mrs. Kaleeba and her husband.
“Can you imagine that my own family members and friends neglected me? Only our parents and a friend called Mary Lukubo supported us,†she says.
On the contrary, doctors in the UK had been very supportive: 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 Hospital upon his return.
While a teaching assistant at Makerere University, Mr. 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,†Mrs. Kaleeba recounts.
“The TLC we got from doctors in the UK was so exceptional. If we had 50% of that care in all hospitals worldwide, the world would be different,†Mrs. Kaleeba notes.
While her husband lay sick in the UK, The British Council was kind enough to fly her to attend to him. She returned in September 1986 while her husband followed in November of the same year.
With 15 other Ugandans, 12 of them HIV positive, Mrs.Kaleeba set up TASO. Though the first TASO centre in Old Mulago opened its doors after the death of Mr. Kaleeba, the idea, was conceived before his death and that is why Mrs. Kaleeba considers her late husband as one of the founding members.
The battle begins
TASO had its first offices in a dilapidated single-room in Old Mulago that was initially being used by polio patients. The then Old Mulago medical superintendent, Dr. Stellah Tibayungwa, helped her acquire the room.
As the founder and director, she steered it from 1987 to 1995. The organisation blossomed into a pioneer movement that addresses stigma, restoring hope and dignity among HIV positive families in Uganda.
In 1990, as stigma increased, Mrs. Kaleeba was so upset that even when she was not getting a salary from TASO, she resigned her position at Mulago to concentrate on figting for this cause.
In January 1996, the UN’s anti-HIV/AIDS arm (UNAIDS) offered her a job, due to her crusade against stigma, making her UNAIDS’ first global community mobilisation adviser. She held this position for 10 years. She later resigned to concentrate on consolidating TASO and looking after her family. Apart from her own children, she looks after 24 other foster children and pays fees for 18 others, a no mean task.
In 1986, Mrs. Kaleeba first tested for HIV and found she was negative. “I did not take ARVs when they were introduced in 1992 because I was healthy,†she says. She says she knew the results would not change much about her lifestyle. She says the last she remembers having sex, she resolved to use protection, emphasising that it is important. In 2004, during the ‘know your status campaign’ in Malawi, Mrs. Kaleeba took her second HIV test and surprisingly, she was still negative.
Mrs. Kaleeba is discordant case, in which scientists have proved is possible. Discordance is when one partner is HIV positive and the other is negative.
Concerning positive living, Mrs. Kaleeba emphasises care for people living with HIV/AIDS, openness, good health practices through a balanced diet and gainful employment for the affected to restore their self-esteem.
Since many in her community turn to her for counsel, Mrs. Kaleeba plans to start counseling camps countrywide to offer lessons on sex and sexuality, self awareness, career guidance and self-esteem.
As a consultant on HIV/AIDS, she describes herself as a leader with a legacy: “Leaders work for a legacy while politicians work for the next election,†she says.
Josephine Kiroge, 24, Mrs.Kaleeba’s niece and an orphan describes her as a parent and mentor. “She has a heart so big I would wish to follow in her footsteps,†she says.
Mrs. Kaleeba has supported Kiroge through university where she graduated with a bachelor’s degree in social works and social administration. Anthony Bogere, another of her foster sons echoes the same views.
With all this efforts, Mrs.Kaleeba thinks the battle has just begun: “I will register success the day HIV/AIDS stigma is defeated; when the rights of people with HIV are respected and their dignity restored,†she says.
Professional highlights
Honorary doctorates from Nkumba University, Dundee University in Scotland and Geneva School of Diplomacy and International Relations, Switzerland.
Described in Scotland as the “Angel of Africaâ€, Mrs. Kaleeba is globally recognised for her efforts in facilitating meaningful involvement of people living with and affected by HIV/AIDS.
This is believed to be a key pillar in Uganda’s success in the fight against the HIV/AIDS scourge.
Name: Dr Noerine Kaleeba
Age: 57
Location: Takajunge village, Mukono
Education: Diploma from Mulago School of Physiotherapy
Post-graduate degree in community rehabilitation from Oswestry School of Physiotherapy, UK
IMPACT: Founded TASO, one of Africa’s first HIV support organisations, to fight stigma and discrimination and offer information about HIV/AIDS
Contact: 0772 411787.
Do 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 to help people PREVENT HIV infection. 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