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Rubaramira's long journey with HIV

By Hilary Bainemigisha, Elvis Basudde

Added 23rd May 2018 05:43 PM

“There was no counselling at that time. We handed in our blood samples and had to wait for a month before we could pick our results. The test confirmed my fears; I was HIV positive! I was devastated!”

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“There was no counselling at that time. We handed in our blood samples and had to wait for a month before we could pick our results. The test confirmed my fears; I was HIV positive! I was devastated!”

Maj. Rubaramira’s long life on HIV medicines

Last December, as Uganda prepared to commemorate the World AIDS Day on December 1, Vision Group spearheaded the drive to get everybody back and involved in the fight against HIV/AIDS. Elvis Basudde and Hilary Bainemigisha started a series of Retired Major Rubaramira Ruranga, one of the few Ugandans who have lived longest on ARVs. He disclosed his status at a time when stigma was at its highest, has participated in HIV trials and is an icon in the Ugandan fight against HIV.

Retired Major Rubaramira Ruranga is one of the few Ugandans who has lived a healthy life with HIV longest. He is among the first Ugandan who, just after the late Philly Bongole Lutaaya, went public about his HIV status in 1992. He was also among the first who participated in HIV trials and to be initiated on antiretroviral drugs (ARVs).



He was 36 when he discovered he had HIV, now, he is a few months to 70. His wife is HIV negative and they have been in this sexual relationship for the last 18 years. When a sexual partner is HIV positive and the other, negative, it is referred to as being HIV discordant. Rubaramira says they have lived a normal life and have five children. None of the children is infected.

Today, Rubaramira is the executive director and founder of The National Guidance and Empowerment Network of people living with HIV (NGEN+), the first HIV network in Uganda. He is also the director of Health and Community Outreach Campaigns, Operation Wealth Creation (OWC).

His early life.
Rubaramira was born in 1948, on 20th April at Kasherere in Kabale district but he grew up in Kanungu where his parents migrated to due to scarcity of land among the Bakiga. He left Kanungu in 1966 after completing P.8 (which was known as Junior Two) and came to Kampala, at age 18.

“I thought I was going to continue with studies but got a shock of my life when I got a letter from my father saying he had no resources to pay my school fees! That was the end of my academic education,” he said.

In 1967, Rubaramira met some religious group known as Jehovah’s Witnesses who offered to educate him about the Bible. After intensive training of about seven years, he became a very good preacher and the first special pioneer of Jehovah’s Witness in Uganda.

“Jehovah’s Witnesses go from house to house, teaching people about the Bible and those who respond favourably are trained to become good preachers and good teachers of the Bible. I was one such a trainee,” he said.

Further education
While still with the Jehovah's Witnesses, Rubaramira got interested in further studies. He was ready to educate himself..

“I had spent seven years doing informal training with the Jehovah’s Witnesses, and indeed it was very educative and empowering. I think it is what made me who I am today. The training taught me how to present, how to refer to different books and how to be someone who would stand by myself and present the good news, as they called it,” he says.

They didn’t have a classroom where they would sit but they would go to one’s home and sit with the family to discuss different lessons on a daily basis. Later they would take the converts to what they called the Theocratic Bible School, which is a sort of classroom for training how to become an effective presenter, preacher and teacher.

Rubaramira lived with these religious people in their homes and went through all the training until he qualified to be a special pioneer. A special pioneer will have reached a level of an overseer which is a very important position equivalent to a reverend, Rubaramira said.  

He says he wanted to go for a mature entrance at Makerere University and get a university degree but he didn’t have the minimum entry qualifications of at least a S4 certificate.

So, he applied to Centre for Continuing Education. Because his formal education was barely P8, he had to do preliminary studies before he could be admitted for mature entrance. The Makerere University Intermediate Certificate gave him an A Level equivalent. That was in 1972, the same year Rubaramira married his first wife. 

He was then admitted to Makerere Centre For Continuing Education for political science for government, as they called it, economics and communication.

“The man who was head of Centre for Continuing Education, called Weitosi, had refused me admission, saying I had to have an O-level certificate. But his boss called Wanyama, who was the director of education for people who were not permanent students of the university, allowed me after he appreciated my brainpower,” says Rubaramira.

He recalls how he was asked to write an essay about a beggar in the city as part of the interview. Because he was not brought up in a formal academic system, he didn’t know what the word “essay” meant.

“I picked on the word “write about” and used my common sense. I had been well trained by these religious people and writing was not a problem for me. And I was well organized. I was given two hours and I wrote my story,” he says.

After two weeks, he returned to check on his results as he had been instructed. Before he saw anybody at the Centre for Continuing Education, he saw the composition he had written on the wall with inscriptions; “Excellent.” He knew he had passed.

“I was admitted for the Makerere University Intermediate Certificate. I did economics, communication and political science and passed all of them very well.

 
Employment life
In 1979, Rubaramira already had two children, one born in 1973 and the second, in1976. The financial demands were rising.  He saw an advert in the paper calling upon those who wanted to read news on Uganda Broadcasting Corporation (UBC). They wanted graduates and he only had a Makerere University Intermediate Certificate. He applied nevertheless and they called him for auditions.

“My voice was appreciated. I was shortlisted for three interviews which I passed. Out of the 2,000 applicants, they selected 15 and out of the 15 they selected seven and I was one of them,” he said.

Those who sailed through were taken back to Makerere University for training in voice and presentation. Some people Rubaramira was selected with included Viola Mukasa, Armstrong Gatete and the late Baale Francis. That is how Rubaramira started reading news on radio and TV in 1979. The very next year, he got his the third born, and his first family was complete.

Joining the NRM struggle
Rubaramira says he was part of the struggle in 1979 during the liberation war. He was, however, still working with UBC and doing clandestine work privately. He was initiated in the struggle by his friend called Magala who was a member of FRONASA, working under Museveni. He joined a force that fought and overthrew Idi Amin.

Magala would occasionally come from Tanzania and Rubaramira would brief him on the assignments he had been given. After the overthrow of Amin in 1979, he found himself into the mainstream intelligence work. He, however, remained an employee of UBC, reading the news and at the same time working with the president’s office doing intelligence work.

Military training
Rubaramira was then chosen to go to Cuba for a military training in 1980.

“During our stay in Cuba, we had divisions in the rank. Some of us who were deemed to be for Museveni, were alienated and those who belonged to the Oyite Ojok group were the favourites. When we eventually returned, we were not well accepted since there were already divisions between the Binaisa group, Museveni group and other groups,” he said.

What was good for Rubaramira though, was that they still allowed him back to his job at President’s Office in intelligence work. Soon after, Museveni decided to go to the bush. In 1981, Rubaramira also joined him in bush.

One of Rubaramira’s assignments was to recruit people and take them to the bush. He would come on foot from the bush to Kampala and recruit people. Among the people he recruited included the late Brigadier Kanyankore. And among the people he trained in the bush included Col Fred Mwesige who is now a member of parliament.

“My life in the bush began in September 1981. We trained in the bush and I was the first one to be trained as a cadet in 1983 and, I remember, out of all the people who were trained that time, only eight of us survived the war and became Junior Officers Class Two. We didn’t have other big ranks. I later became a Captain in 1987. In 1989, I was promoted to the rank of a Major,” says Rubaramira.

Face to face with HIV
Upon returning from the bush in 1986, Rubaramira said he found his wife had developed her way of life and they were irreparably incompatible.

“We were married since 1972 and our first born was in 1973. The second born came in1976 and the third born, in 1980. But when I came back from the bush after five years, we failed to settle down together; we had to separate.”

When they separated, he married another woman who was HIV positive. She also went public about her status and they both did advocacy work together. He had two children with her and they are both HIV negative

Rubaramira bumped into his long-time friend, Viola Mukasa, with whom he working at UBC. Mukasa was at that time working with American organization dealing on HIV/AIDS issues.

Among the many other things they discussed was what was then known as ‘slim’, the disease name that was used to describe AIDS. The epidemic was wrecking the country and, according to Rubaramira, Mukasa must have brought up the topic deliberately to get Rubaramira’s side of the story.

Rubaramira had heard about the AIDS epidemic while still in the bush. But he didn’t know its exact dynamics. Mukasa told him it was a disease that had struck very aggressively in the country and that it was contracted through sex.

“That made me reflect on my lifestyle. I realized I had been reckless and could not have survived. Testing for HIV was only carried out in Entebbe at the Virus Research Institute. I made up my mind to go there and test. I personally drove Mukasa to the Entebbe where we both got tested,” he narrated.

Mukasa tested probably to encourage Rubaramira because it later became clear that Mukasa had had a number of tests before and already knew that she was HIV negative.

“There was no counselling at that time. We handed in our blood samples and had to wait for a month before we could pick our results. The test confirmed my fears; I was HIV positive! I was devastated!”

Rubaramira says that was the beginning of his agony. He knew for sure he was going to die because Slim was considered a death sentence. There was no medicine. Whoever had it was supposed to die in a few months.

Life after testing
Ruranga couldn’t come to terms that at 36, he was supposed to be too young to die. He had survived many hardships of the five year war and, at a time he was supposed to be harvesting in the war victory, life had evaded him.

“I tried to recall who could have infected me until I realised it was useless. Even if I got to know the person, it would never get the virus out of my body. And, probably, the person didn’t intend to kill me,” the retired major narrated.

“I also imagined the people I could have infected! Then, I looked at the bullet scars on my body that I had survived many times while in the bush. I was speechless. How could I survive battles only to fall in the name of pleasure! I didn’t know where and how to start life!”

His mind was disoriented and more so, whenever he switched on the radio or TV. The common slogan was: “AIDS kills and it has no cure.”  He thought with his HIV diagnosis, he had been declared a living dead.

“My biggest torture was how I would tell my wife and the three children,” he said. “I wondered who would take care of his family when I finally died. Dying of Slim then was not a picnic! It was a terrible slow painful death where you kept getting emaciated till you almost disappeared into your skeleton. I wished I had died in battle!”

Rubaramira had a few serious questions to answer: What was the next step? Should he tell his family, parents or friends? Should he get lost? Should he return to the village and die slowly, away from the friends’ eyes? It was proper darkness at noon. He could not even swallow his saliva! His mouth became dry; totally dry!

PART 2: Rubaramira life after testing HIV+

Retired Major Rubaramira Ruranga first associated with Museveni in 1979 during the struggle to remove Idi Amin from the presidency. He was working with Radio Uganda when his friend Magala initiated him into FRONASA where he started doing clandestine work privately. After the fall of Amin, he joined Intelligence under President’s office and was sent to Cuba for military training in 1980.

When Museveni launched guerilla warfare against Obote, Rubaramira joined him in September 1981. After the victory, he was made a Captain and later in 1989, promoted to a Major.

However, soon after the bush war in 1986, Rubaramira discovered he had HIV after testing at Entebbe Virus Research Institute. He was 36 when he came face to face with the reality that he had Slim, as HIV was called them.

The new disease had been called Slim because its major symptoms are weight loss and diarrhoea. The victims became ill, lost weight and wasted away till they died. No one knew why. The year was 1982.

When it first started killing people in Rakai, doctors suspected it to be enteropathic (disease of the intestine) acquired immunodeficiency syndrome as seen in neighbouring DR Congo (then Zaire). However, Slim came with other presentations like Kaposi's sarcoma, a cancer associated with people whose immunity is so low.

The Slim disease
Further attention noted that Slim occurred predominantly in the promiscuous population and there was no clear evidence to implicate other possible means of transmission, such as by insect bites. As doctor at the Uganda Cancer Institute in Kampala, then Dr. David M. Serwadda, wrote about this disease after discovering Kaposi's sarcomas on the chests of two young women. Before, he had seen such lesions only on the hands and feet of elderly men. More cases trickled in, all from Rakai or a neighbouring district. Then he read about similar symptoms in the US.

"But we just could not connect a disease in white, homosexual males in San Francisco to the thing that we were staring at," Serwadda wrote in 1991.

Serwadda is now a Professor of Disease control and Environmental Health, Makerere School of Public Health. He is an infectious disease epidemiologist, who in the early 1980s, was one of the first physicians in Uganda to recognize the new disease that became known as AIDS.

“The patient does not respond to increased caloric intake. There is profound involuntary weight loss of greater than 10% of baseline body weight, plus either chronic diarrhea (at least two loose stools per day for more than 30 days) or chronic weakness and documented fever (for more than 30 days, intermittent or constant) in the absence of concurrent illness or condition,” Serwadda wrote.

Serwada has worked continuously on HIV-related research and prevention ever since. He has been a senior investigator on the Rakai Program since its inception in 1988. He was the principal investigator in the trial of Male Circumcision for HIV Prevention.

Slim was eventually identified as Acquired immunodeficiency Syndrome (AIDS), caused by the Human Immunodeficiency Virus (HIV). It was characterized by fever for more than 1 month, involuntary weight loss of greater than 10%, and diarrhea persisting for more than 1 month.

Rubaramira says that knowing he had HIV was the beginning of his agony. He knew for sure he was going to die because Slim was considered a death sentence. There was no medicine. Whoever had it was supposed to die in a few months.

Life after testing
Rubaramira couldn’t come to terms that at 36, he was supposed to be too young to die. He had survived many hardships of the five year war and, at a time he was supposed to be harvesting in the war victory, life had evaded him.

“I tried to recall who could have infected me until I realised it was useless. Even if I got to know the person, it would never get the virus out of my body. And, probably, the person didn’t intend to kill me,” the retired major narrated. “I also imagined the people I could have infected! Then, I looked at the bullet scars on my body that I had survived many times while in the bush. I was speechless. How could I survive battles only to fall in the name of pleasure! I didn’t know where and how to start life!”

His mind was disoriented and more so, whenever he switched on the radio or TV. The common slogan was: “AIDS kills and it has no cure.”  He thought with his HIV diagnosis, he had been declared a living dead.

“My biggest torture was how I would tell my wife and the three children,” he said. “I wondered who would take care of his family when I finally died. Dying of Slim then was not a picnic! It was a terrible slow painful death where you kept getting emaciated till you almost disappeared into your skeleton. I wished I had died in battle!”

Rubaramira had a few serious questions to answer: What was the next step? Should he tell his family, parents or friends? Should he get lost? Should he return to the village and die slowly, away from the friends’ eyes? It was proper darkness at noon. He could not even swallow his saliva! His mouth became dry; totally dry!

The TASO strategy
But as he was still contemplating his next step, he remembered The AIDS Support Organization (TASO). This was an HIV/AIDS service initiative, started in 1987 by a group of people led by Noerine Kaleeba, whose husband, Christopher, a radiographer, tested positive for HIV and suffered stigma and discrimination by his co-workers in Mulago Hospital.

She mobilized her friends to form a support group to encourage those infected and affected by HIV and AIDS within the hospital. AIDS patients were being treated badly in the wards of the Mulago Hospital in Kampala. They were allocated a room in the Polio Clinic at Mulago Hospital where they began offering clinical out-patient services run by Dr Elly Katabira as an AIDS Clinic.

TASO soon became an organization that led the crusade to provide comfort to patients who were being discriminated against and sometimes abandoned by relatives to die within the hospital compound. As the number of people coming for comfort to this small group grew, counselling became a necessary service till 2008, when it was one of the largest indigenous HIV and AIDS services organisation in Uganda.

There was a lot of talk about TASO and it was easy for Rubaramira to trace it in Mulago in 1988. Much as Neorine Kaleeba sympathized with him, she said TASO could not accept him because he was an army officer. She advised him to get permission from his commander.

Rubaramira went to his commander, Gen. Jim Muhwezi, and sought permission to get into TASO care.

“Muhwezi never asked me many questions. Instead he instructed his secretary to write a letter which I took to TASO,” he narrated. “I joined TASO and the community as well as the counseling empowered me. My perception about HIV/AIDS changed and I started accepting that I was not going to die. I met a lady from the island who was a counsellor at TASO. That lady put a lot of hope in my life! She told me that the most important thing was to develop a positive mind. I stared accepting that I was not going to die soon.”

Panic nevertheless
But ironically, when Rubaramira sought the views of another doctor about how long he would live with the virus, the doctor told him that if he was lucky, he would live for three years.

“So, I started budgeting my life towards the three years I had remained with in life. But sometimes hope would overwhelm me and convince me that, may be, that doctor didn’t know enough. I needed to know more on my own since there were no counsellors at that time. I used to go and listen to talks whenever I got the opportunity. That way, I gathered a lot of information.”

Rubaramira says he is a person who learns by himself, completely self-taught because even at Makerere when he was doing his certificate, it was by correspondence. He only went there to do exams otherwise he studied at home.

AIDS Information Centre
In 1990, the AIDS Information Centre-Uganda (AIC) was established as a Non-Governmental Organization in Uganda to provide testing for HIV following a growing demand from people who wanted to know their HIV status.

The centre later expanded through its 8 branches of Kampala, Jinja, Mbale, Mbarara, Arua, Lira, Soroti and Kabale, selected hospitals, health centres, and antenatal clinics. Soon, supported the Ministry of Health, it extended it HIV counselling and testing services to 33 districts in Uganda with over 200 district health facilities benefiting.

Rubaramira got a job at the centre as a counsellor.

“I was counseling and helping people to do HIV test. During the counseling sessions, I would tell everybody I counseled that I was HIV positive myself. I thought by going public about my HIV status, I would continue the legacy of Philly Bongole Lutaaya who was the first Ugandan to have publically declared his HIV status. I admired Lutaaya’s initiative and hailed him as a very brave man.”

Philly Lutaaya
Philly Bongoley Lutaaya was a musician who was the first prominent Ugandan to give a human face to HIV/AIDS. He was popular in Uganda in the 1960s, and in the 1970s, he toured Zaire, now DR Congo, Kenya, and Japan.

In the mid 1980s, he went to Stockholm, Sweden, from where he recorded his hit album, Born in Africa, which is still popular in Uganda. His other albums include Christmas Album, Tumusiinze, Gloria, Azzaalidwa, and Zukuka.

In 2007, various Ugandan artistes came together to re-record some of Lutaaya's greatest hits. Bebe Cool sang Born in Africa, Juliana Kanyomozi re-did Diana. Iryn Namubiru and Nubian Lee of Fire Base Crew both re-did Empisazo.

Lutaaya surprised many by declaring he had HIV at a time when stigma was at its highest. Before he went on to die of AIDS, Lutaaya spent his remaining healthy time writing songs about his battle with AIDS, releasing his last album Alone and Frightened. That song was adopted and used throughout Uganda, in churches and schools, to spread a message of prevention and hope.

“If Lutaaya hadn’t talked, probably we would not have known what was going on. He indeed gave a face to HIV and fought stigma. Lutaaya is one of the most courageous man I could ever think about. He died but left a big message and legacy. I also decided to pen up so that I could carry out the legacy Lutaaya left,” he says

By that time Rubaramira had been hit by hap zester (kisipi).

“I had a very big scar in the back and when anyone refused to believe my story of living with HIV, I would remove my shirt and show them because that time, hap zester was a very common symptom of HIV. So, they knew they were dealing with their own and they would be free with me,” he said.

Rubaramira said people who came to test and knew that he was living with HIV, would dodge going to other counsellors and come to his desk.

“My line was always long, stretching from the road up inside to the building. Everybody wanted to be handled by me,” he said. “They would say I want to be handled by the Captain. Then the process went on and I became popular which made the army to take me to Mbuya to work for the army again. Up this time I had been working in ISO,” he says


Part Three: Rubaramira teaches about condoms
Retired Major Rubaramira Ruranga survived the bush war, and has scars to prove it, only to cut short his victory celebrations with news that he had HIV. He was devastated. Doctors told him he had three years at most to live.

But when he got himself involved in HIV work, he realized there was more reason for hope that despair. He was inspired by Philly Lutaaya’s bold disclosure that he had HIV and he too decided to come open about it.

As a counsellor, especially at AIDS Information Centre (AIC), that attracted him a lot of clients and he thinks it was that popularity that made the army recall him to start HIV work among the soldiers.

Condoms
“When I was still at AIC, I became popular with a condom because I was teaching people about the safety of the condom and how it is used,” he said. “I would demonstrate and even blow it because some people thought a condom was too small.”

That was a time when research had demonstrated that condoms, when used properly and consistently, are close to 99% effective in preventing the transmission of HIV. Condoms were known and used basically as protection from risk of pregnancy and sexually translated infection (STIs). But still, the majority of people needed more convincing and training on how to store and use condoms.

Preventing diseases was the original intention of condoms. The earliest reference to condoms was in Asia’s ancient civilizations dated 1564. Art work in China depicts some use of glans condoms (devices covering only the head of the penis) in sexual interactions. And literature says they were used for disease prevention and only by members of the upper classes.

Condoms arrived in Europe probably in the 16th century during the outbreak of syphilis in the 1590s where many people were dying of this strange disease. And the first indication of condoms as used for birth control, rather than disease prevention, was in 1605 when they were roundly condemned by the Catholic Church for preventing conception.

By the 18th century, they were being renounced for reducing the likelihood of pregnancy and promoting immorality. Up till then, condoms were made from intestines and bladder tissue.

During, Renaissance, fine leather was used. And in 1839, when Charles Goodyear discovered a way of processing natural rubber, it led to the first rubber condom, produced in 1855. But the breakthrough was in 1920 when latex condoms. They became cheaper, performed better and were very popular for the consumer.

In the 1930s, the Anglican Church's Lambeth Conference allowed the use of birth control by married couples, followed by several religious groups. WHO and the US Food and Drug Administration endorsed their use in stopping STIs and pregnancies. By 1965, 42% of Americans relied on condoms for birth control.

In the early 1980s, after learning that AIDS can be sexually transmitted, laboratory studies and product testing showed that reputable condoms were completely impermeable to micro-organisms as small as viruses. Research also found that during vaginal intercourse, condoms break less than 2% of the time. Reliability rates of 98% are still sometimes quoted for condoms.

The desperate world moved into action to produce condoms in millions and distribute them throughout the world. They were distributed free at health outlets, tertiary institutions and Makerere, which was the only university available. Many health workers found themselves explaining to people how to use condoms to protect themselves in sex.

“Infact I was nicknamed Captain Condom. But when I was transferred to Mbuya barracks to do counseling, I realized I had been promoted to the rank of a Major.”

Dutch determination
Because Rubaramira was a very good educator and had also become popular, in 1992, a lady working with USAID, Dr. Murrum nominated him to take part in a major AIDS conference in Netherlands.

“During the conference, I leant a lot of things from a group of gay people who were HIV reactive. They were very dynamic, saying they cannot die of AIDS. That gave me hope. I was motivated by these people’s inspiring talks. Because of the dynamics of HIV, these gay people had become very strong doing aggressive exercises,” he said. I looked at these strong guys and said: I was not going to die!”

By the time he left that conference to return to Kampala, he was a completely changed person. He had become strong and empowered.

When Rubaramira came back from the conference, he thought it was important to start an organization for people living with HIV. He founded The National Guidance and Empowerment Network of people living with HIV ( NGEN+). It was from this that eventually led to his advocacy in the fight against HIV.

HIV drugs
Antiretroviral drugs (ARVs) were not in the country but there was a lot of talk about drugs that would cure AIDS. People also devised their own concoctions and claims after claims of working drugs and miracle cures were abound. Those who had means innovated ways of accessing treatment and that led to a lot of fake medicine on the market.

Kemron
In 1990, Kenyan scientists stunned the world with a drug they claimed cured HIV/AIDS. It was called Kemron. It was spearheaded by the Kenya Medical Research Institute (Kemri) under its then director Davy Koech and lead researcher Prof Arthur Obel. Kemron was even launched in a public ceremony by Kenya’s President, Daniel Arap Moi. He even announced plans to put up a manufacturing plant for the drug.

So expectant was the world that many Africans praised Kemron as a rare African solution. People flocked to Kenya in search of treatment, including America’s most prominent basketball player, Magic Johnson, who had declared that he was HIV positive.

“Kemron cost sh1.5m every month and that was very expensive,” Rubaramira said. “I approached my bosses in the army and they agreed to help me pay for it. That is how I started on Kemron, my very first of HIV medicines.”

However, scientists faulted to studies that Kemron was based on. Koech had based his claims on the fact that each AIDS patient in his study had gained 5km. He also said that 10% of the patients actually tested negative for the antibody that is associated with HIV.

When WHO sponsored Kemron studies in five African countries, they did not find any dramatic health benefits, apart from increasing people’s appetite. Kemri also failed to patent the drug because the president of the Amarillo Cell Culture Company of Texas, Dr Joseph Cummins, claimed it was his technology that first manufactured the equivalent of Kemron and supplied the drug to the Kenyans.

Kemron was abandoned as many experts who support the drug, withdrew their backing.

There were also a lot of native medicines and herbs. A Masaka- based woman called Nayonga claimed she had soil which could cure HIV and people were lining up to take the soil.

Nanyonga’s soil
In Sembabule, a woman called Yowanina Nanyonga claimed that God had told her to give people soil to eat to cure all their diseases including AIDS. Hordes of people across the world trekked to Sembabule in then Masaka District for the miracle that never was. Doctors advised that there has never been a drug that can cure all diseases.

Nanyonga was an elderly peasant woman who claimed that on the night of September 8, she had been visited and instructed by God, in the form of a blinding light and mysterious voice, to cure all manner of illness with the blessed soil from her garden.

It was claimed that one Margaret Nazziwa, who had been at the brink of death at a Kampala hospital, was bed-ridden and could not eat or drink, had taken the soil and recovered tremendously.  This and other claim transformed Nanyonga’s sleepy, obscure village into a hive of hawkers, government investigators, curiosity seekers, the media and most importantly, patients and believers.

It was said Nanyonga never sold her soil. She even warned that if you took it and sold it, you would go mad and the soil would not work. She had to bless it personally, meaning you couldn’t dig it up yourself. The soil was to be mixed with cold water only.

“I sent people to collect that soil for me actually and I used it for some time,” Rubaramira explains.

However, soon after, Nazziwa died suddenly of heart failure, coughing up blood. Nanyonga blamed her tragic demise on lack of faith. But without flowing dramatic cures, the hysteria died down, leaving in Nanyonga’s compound a gigantic crater pit of at least 3 feet deep with a diameter of 20 feet or more. Experts estimated that she had given out about 30 tons of soil.

Starting ARVs
In 1997, Rubaramira joined the Joint Clinical Research Centre (JCRC) as a counsellor. He rose to become the chief counsellor there. That was the time JCRC was starting a research on ARVs and Rubaramira wrote a proposal to management saying you cannot do research without counseling system in place.

Later on, counseling was incorporated as part of research.

JCRC was started by President Yoweri Museveni in 1990 as a Centre of Excellence to address the very serious problem of HIV/AIDS. With USAID support, the centre pioneered the HIV treatment programme in Uganda. According to Prof. Peter Mugyenyi, its first executive director, it was JCRC that was at the forefront of the introduction and distribution of HIV drugs.

In 1991, JCRC carried out the first ever African antiretroviral drug trial on zidovudine, more commonly known as AZT. Rubaramira registered as a volunteer in the study. Researchers were giving volunteers different doses of AZT in order to establish the right dose that can bring down the virus without destroying the body as well.

“I was one of a number of people who participated in the study. AZT was a very complicated drug. We were started on a very big dose and most of us developed problems with side effects of the drug,” he said. “It made me very black, all his finger nails turned very black too and gave me serious diarrhea. I actually thought that AIDS had set in. The pills were many; I think I needed to take ten tablets a day.”

Mugyenyi is proud of this AZT research.

“It was a time when there were doubts about the ability of developing countries to conduct quality research on the virus. But, JCRC put Uganda on the map and has over the years been used as a model for so many countries,” said Mugyenyi, who took over executive director job at JCRC in 1992. “That study of AZT gave us quality results. And thanks to our study, AZT dosages were lowered significantly to the current international dosages that are safely set today,” he said.

Rubaramira says the doctors later changed his drug to Saquinavir which also pissed him off.

“It was terrible! I was supposed to take a lot of water but I was not guided well and I ended up developing kidney stones, which eventually would burst and make me urinate blood for weeks,” he said. “I went and told the doctor that I would rather die than take that drug again. He told me the problem was because I was not drinking enough water. But he nevertheless gave me another combination I cannot remember. But, still, the pill burden was big! I was taking four to six tablets three times a day. But despite this pill burden, my life was improving each passing day.”

Realizing that the drugs worked, Rubaramira could not see why every person living with HIV did not get the drugs. He started a campaign to ensure that government comes in to ensure wide access to drugs.

“I used the advantage of being a counsellor and the skills I had acquired from preaching to present my advocacy in a manner that made me popular. I would go to major AIDS conferences both locally and international and share my testimony and experience. Every time I returned from a conference, I would be a different person; more determined, very vibrant, empowered and more knowledge on HIV/AIDS.

Part Four: Rubaramira joins opposition politics
After 5 years of the bush war, Retired Major Rubaramira Ruranga cut short his victory celebrations with the shocking news that he had HIV. Doctors told him he had three years at most to live but the more he got involved in HIV work, the more he realized there was more reason for hope that despair.

He became an HIV counsellor at AIDS Information Centre (AIC) and later in the army at Mbuya before joining Joint Clinical Research Centre (JCRC) as a counsellor. That gave him an opportunity to volunteer in trials on Anti Retroviral drugs (ARVs). These drugs improved his life so tremendously that he started advocating for government to come in and fund access to all.

He even fought with government after feeling frustrated about its lack of vigour. He went to the extent of abandoning the National Resistance Movement (NRM), and joined the Forum for Democratic Change (FDC).

“My feeling was that government was not taking the responsibility that it should have taken. The NRM did not appear to be doing things I was asking them to do. I made it clear to those concerned that I was quitting. I didn’t hide it,” he said. “But I was being naïve in a way. I think I didn’t understand what the president was going through. I was rushing and selfish and I really went overboard.”

Rubaramira says that in 2002, they reduced soldiers in the army and they used JCRC to test their HIV burden and almost all the soldiers they tested were HIV reactive!

“I thought that they had started sending all the HIV soldiers from the army. I became very aggressive and it was during this time that I joined FDC. I became FDC’s chief electoral commissioner and I was very vocal which I regret now but those were the circumstances of that time,” he reminisces.

Rubaramira says although the campaign was a collective responsibility, he made an enormous contribution because wherever he went, he talked about ARVs.

“I would give myself as an example of a person living because of ARVs, and declared that those who died, it was because government was not caring,” he said.

Stigma issues
By the time Rubaramira got HIV, living with the virus was not easy. There was a lot of stigma and yet, very few counsellors to pacify the infected person.

“I was shunned by almost everybody who knew I was HIV positive, including the army where I was an officer. The worst part of his ordeal was that I was never assigned to any army unit because of my HIV status. And, I think, that is why I remained a major. Otherwise when you look at my army enrolment number, 192; I am supposed to be one of the most senior. Promotions go through army units but because I had no unit, I was completely left alone on my own,” he recalls.

Rubaramira adds that the stigma had economic implications as well. No one in the bank would give you a loan because they thought you would drop dead anytime. I had gone public about my HIV status and that explains my low economic development as a person.”

But meanwhile, he was reading a lot about HIV and, in a way, he became a very silent expert. He knew a lot about HIV, became a self-taught counsellor.

“Time came and I became convinced that my HIV was not going to kill me. I refused to interpret my condition as terminal and opted to live positively. And this has come to pass because I am soon turning 70. I know that if I remain positive, I would have a long productive life and live it in a healthy way.”

He says there are several things that you can do to stay healthy and live longer. It is about not infecting others as well as not re-infecting yourself. It is also about having a positive attitude and healthy lifestyle. You learn how to cope with your status and how to live with HIV.

“The first step to positive living is acceptance. You need to work with your feelings, avoid denial and accept your new status as part of your life. Strict adherence to ARVs is also very important. ARVs are not a cure but improve quality of life. They are life-time commitment and you have to take it for the rest of your life even after your viral load has reduced to undetectable levels,” he said

Advice on ARVs
Rubaramira says HIV may no longer be a killer but it certainly disrupts your life. Once you realise you are HIV positive, you lose your freedom to live as you want. There are changes you must make in your lifestyle that are not negotiable if you want to live longer.

First, you must start HIV treatment and be on it for the rest of your life.

“And you must adhere to the letter. I have been taking my medicine religiously all this time. My viral load is undetectable while my CD4 count is a whopping 1,989! I know some people who don’t have HIV and they don’t have that count of CD 4. So, you can see that we can get rid of AIDS if everyone who has it gets ARVs.”

He wants people with HIV to start thinking of themselves as the real managers of HIV, above the healthcare providers.

“We are better than them since we live with the virus every day,” he says.

Rubaramira also advises people with HIV to feed well.

“Having a balanced diet when you are on ARVs is paramount,” Rubaramira says. “The quality of feeding significantly reduces side effects and influences the success of ARVs by improving drug effectiveness and general health. These drugs are strong! Some people skip taking them whenever they have no food because they can be torturous on an empty stomach. It is important to drink plenty of clean and boiled water. In the absence of good nutrition, taking the drugs becomes just as bad as not taking them.”

He also advises people living on HIV medicines not to take any other medicine without consulting your doctor first.

“Consult the doctor even if you are going to take herbal medicine. Some drugs or chemical elements in the herbal, may react with the ARVs.”

On sex, Rubaramira says it is dangerous to imagine that because you already have HIV, there is no need for protection.

“That is even risky. You have to practice safe sex to avoid re-infections. You can be re-infected with another strain and complicate your regime of ARVs. You can even get a strain that is resistant to the medicines you are taking. You can infect others with unprotected sex. Make sure your partner is tested. You must never risk having live sex. Use a condom if you must or abstain,” he says.

Other important factors include proper hygiene.

“Avoid unnecessary infections from the environment. There is no point for one to have AIDS when the medicine is there. One of my advocacy points is for government to address the issue of primary health care. By the way, if we did the primary health care, the drugs in the hospitals will not be necessary. I do not get hospitalized because I know what to do. If we all observed proper hygiene, many of the diseases we get are from poor sanitation would be eradicated. It is a vital component of fighting HIV,” he says.

Rubaramira also recommends exercises to keep the body active and avoiding being overweight.

“You should have sensible and quality leisure that builds you. Avoid stress and other immune suppressing conditions. You should also have enough rest,” he says. “As far as possible, avoid drinking alcohol and smoking because they could interfere with your medication. I used to be a terrible alcohol drinker and could knock out a whole crate of beer a day. I would also take two bottles of whisk sometimes in a day. I was also a bigtime smoker. I stopped them all! So don’t say you are too much in it to stop!”

Today, Rubaramira looks as healthy as any normal person without HIV. Those who don’t know he was living with HIV may not believe when he tells them he is. He attributes his quality of life to knowledge. You must get as knowledgeable as possible about HIV, he advises.

“After discovering my status, even my sexual life changed completely. The womanizing business stopped. I tested my current wife and she was negative. We have four children and they are all free from the virus. I think this is because my viral load is undetectable."

"When you adhere to ARVs to the letter, you bring your viral load down and reduce the risk of infecting another person,” he said. “That is why we are advocating for mass testing and viral load monitoring. If you are going to address the issue of prevention, then the viral load is the answer,” he says.

Quality of HIV management
Asked about how the country is handled the HIV fight today, Rubaramira says we missed the point.

“President Museveni did everything it took to put this country on the world map in the fight against HIV. He went around the country talking about HIV. Unfortunately, the leaders below him, the people he works with, the ministers, permanent secretaries and people who lead corporate institutions instead commercialized his efforts,” he says.

“Because of that, HIV has never been taken to where it should go; the family. By this time, we should have had a system where you go and sit with a family, go through counseling, do the testing and give them results. Home visits have been there but very small.”

He  suggests that we should have a national domiciliary service where you go from house to house, using health facilities which are there to train nurses and counselors to go teach people, train and test them.

“That is the 3 Ts in the home: Teach, Train, Test. You take a family through counselling, you test them all and give them results. That will end stigma in the home."

"The spread of HIV is caused by stigma. People fear to be known or suspected of having HIV. That way, they will continue infecting others. We have failed to defeat stigma because we ignored the family approach. Once you defeat it in the family, you will have defeated it in the community.”

He says people look at Uganda AIDS Commission (UAC) for jobs not to fight AIDS. Many of them do not even know the meaning of stigma, he said.

UAC was established by the Parliamentary Statute in 1992 to oversee, plan and coordinate AIDS prevention and control activities throughout Uganda.

“I was a board member of UAC and it is the usual business. For them, it is about getting a job to publicize what they are doing. If I had my way, I would put there only people who are living with HIV because for them, it is more than a job; it is a fight. They would do these jobs much better,” he says.

Rubaramira regrets that the good progress we had made as a country in the past is no more.

“We are retrogressing,” he says, “even countries that were not as good as we were, are now ahead of us. We were better than Kenya and Tanzania and many other countries in the world but we are the third worst now after South Africa and Yemen. This is not good news.”

The only solution if we have to make good progress is to penetrate into the family system and we start counselling at the family level, give results and ARVs at the family level and therefore help communities to internalize the problem.

 

 

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