Uganda commemorated World AIDS Day, on Friday December 01 and celebrated our heroes in the fight against HIV. One of them is Elvis Basudde, the first journalist in East Africa to publicly disclose his HIV-positive status. He has since become an activist, founded groups, represented Uganda internationally and championed causes of People Living with HIV. Elvis Basudde narrated his near-death experience. Today, he continues with how this affected his life and inspired his advocacy crusades.

In 2002, I was about to close my eyes for the very last time. However, I got the determination to recover and get started on Anti-retroviral drugs (ARVs). Twenty years later, I am fighting both HIV with positive living, as well as for the rights of people living with the virus.

I have lived on because I refused to interpret my condition as terminal. But most importantly, I leant how to live positively. With HIV, you cannot undo what has already happened. You cannot reverse your HIV-positive status. The only solution is to live positively and avoid a detrimental life.

Positive living

What does positive living mean? It is a term used to describe steps taken by People Living with HIV to enhance their lives. The importance of positive living is that it prolongs the productive lives of individuals who have HIV and increases their ability to contribute to the well-being of their families. It also helps to decrease the discrimination and pauperisation, which can make surviving family members more vulnerable to HIV.

The knowledge that you are HIV positive is a transition. It starts a new life where you must learn how to cope and focus on what is most important. It is like going to a country with different rules.

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For instance, when you go to Rwanda or Nigeria, they drive on the right as opposed to Uganda where we drive on the left. You must abide or face the consequences of insisting that you have to drive on the left. In the same way, when you are HIV-positive, you must learn to cope with your new status and how to live with it.

That is what is called living positively with HIV/AIDS. Adhering to the new rules of the game saves your life. We have lost people who would still be with us if they lived more responsibly.

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Positive living involves a number of things, which contribute to good health and longer life of people living with HIV/AIDS. It includes, but is not limited to, the following: The starting point is to work with your mind and accept your new status and infection as part of you. How you got the virus and from who is not important.

What is important is your present, tomorrow and treatment. You stop dwelling on the past since you cannot reverse what has already happened. Work with your feelings, avoid living in denial.

ARVS

For those on ARVs, it is important to know that these anti-HIV drugs are not a cure, but improve your quality of life. They are life-time commitment and you have to take them for the rest of your life, even after your viral load has reduced to undetectable levels.

It is crucial to adhere to the drug regiment religiously for them to help you and avoid resistant strains of HIV. If you miss a dose; take it as soon as you remember. But, if you realise when you are about to take your next dose, do not take a double dose.

No other medicines

Do not take any other medicine without consulting your doctor first. Consult the doctor even if you are going to take herbal medicine. Some drugs may react with the ARVs.

Sex

The principal is to practice safe sex to avoid re-infections. You can be reinfected with a new strain of HIV which compromises your ATV regiment. Even when on ARVs, you can still infect others if your viral load is detectable. Make sure your partner is tested. You must not risk having live sex. Use a condom if you must or abstain.

Habits

Avoid leisure/habits that strain your energy like smoking, alcohol and other harmful substances. Smokingdamages the lungs and many other parts of the body and makes it easier for infections to attack your body.

Drinking alcohol is harmful to the body, especially the liver, it increases vulnerability to infection and destroys vitamins in the body; under the influence of alcohol you may forget to practice safe sex. Have enough rest and avoid isolation yourself.

Spiritual support

Have a motivation to live on, keep faith in God, pray and seek pastoral counseling from religious leaders. With counseling and love, you can beat all difficult times, especially when handling social crisis such as stigma.

Colleagues step in

Meanwhile, something else that kept me going, especially at the earlier years of my infection, was the unprecedented support from the team at Vision Group. My colleagues made it a habit to often collect money by circulating a basket to different departments in order to contribute to my welfare. It used to be Namutebi (deceased) and Ronnie Kijambu who would often deliver it to me.

I remember the deputy editor in chief then, David Sseppuuya, sent me sh250,000, which was a lot of money at that time. Some friends made psychical courtesy visits, gave me hope and encouragement. I can mention John Kakande, Arthur Baguma, Oliva Bagonza, James Ssenkubuge, Alex Mukulu, Benon Kibuuka, Halima Namakula and Geofrey Lutaaya, among others.

During that time (early 2000), you had to pay for your ARVs, however, Vision Group management contributed a bigger part of my drug bills, including those of the hospital when I was admitted. It was in the company policy to care for a number of its employees who were living with HIV.

I remember my good friend, Kamira (deceased), whom I could send to pick my medicine and she could also do the same in case one was not able to go. I regard Vision Group’s gesture as a blessing because there are many People Living with HIV who were not helped by their employers. Instead, the employers and colleagues developed phobia towards them. Some were even sacked!

Following my improvement, I remember Prof. Peter Mugyenyi, who was the Joint Clinical Research Centre (JCRC) executive director, hailing Vision Group for subsidising ARVs for its employees.

He wrote: “I appeal to other companies to emulate the New Vision and stop sacking their HIV-positive employees. The steps taken by New Vision to subsidize antiretroviral therapy for her workers is perfect.”

He argued that money invested in the treatment of infected persons saves the company the cost of skilling new workers. I recovered and New Visionallowed me back to work. I was discharged in 2002 and was homebound, in an immobile state, for two years.

This means I started working in 2004. But in 2005 when I went for a viral load test at the JCRC, Dr Geoffrey Kabuye announced: “Your viral load is zero, meaning you no longer have HIV in your blood. The drugs have cleared it. This is the best result!”

I got this good news barely four years after I started swallowing my ARVs. Dr Kabuye told me that for drugs to erode viral load in blood from millions of copies to zero, is the absolute indicator of successful treatment. He explained: “It means thatthe virus has been controlled and clinically, the patient is doing well. It means he has been adhering to treatment, a key to success.”

However, Dr Kabuye stressed that positing zero viral load only means that the drugs have cleared the virus in the blood. But it does not mean that the virus is out the body. Blood constitutes only 2% of the places where the virus can hide.

The rest of the body presents 98% of reservoirs or tissues where ARVs cannot penetrate or where penetration is minimal. Other reservoirs for the virus are the brain, the eyes, the semen and the liver.

He also emphasised that positing zero does not mean I was cured of HIV. It is, therefore, advisable to continue taking ARVs. Noting that drugs are not a cure; the treatment is a lifelong commitment. In an HIV workshop I facilitated recently, a young girl narrated her experience with an HIV test. The 26-year-old Nandawula revealed that she suspected that she had HIV because she had been involved with multiple partners.

The counsellor told her: “I have bad and good news for you. Bad news because you are infected with HIV that causes AIDS. Good news because today, there is medication that help to extend longevity of your life. If I told you that you were HIV-positive 20 years ago, it would have been totally bad news, because there were no free ARVs then. Today, you can take the ARVs and live on. They are the best hope for an HIV-positive person. They can potentially boost your body’s natural defence mechanism by reducing the multiplication of the virus and helping you to live longer.”

The people in the workshop were amazed seeing Nandawula narrating this with a smile instead of being gloomy. Nandawula said she was grateful that she took that initiative to know her status.

“It was not so easy, but to date, I have a number of benefits, including bearing children who are HIV[1]negative. I am happy I took that decision of having children from an informed point of view, using PMTCT,” she revealed.

PMTCT is prevention of motherto child treatment, given to mothers living with HIV, to reduce the risk of transmission of the virus to their babies.

Inspiring others

I will cite an example. I got a phone call from a Makerere University student: “You have greatly inspired me; I am going to live,” she said. I don’t know how she got my number, but she said she had read one of my articles published in New Vision in 2004.

“You are an inspiration to us. My suffering with HIV is nothing compared to what you went through. Your struggle with sickness for two years must have been ghostly, according to what I have read. Obwange obunuma biwero (mine is nothing!) Your testimony is an inspiration to infected people to continue to live positively. I was contemplating suicide, but I have changed my mind after reading your story. I am going to fight to live like you are doing.”

One of the fulfilling experiences is to learn that I have inspired someone and even saved someone’s life. It helps me achieve purpose of altruism.

However, I also realised that there are some people who are joy spoilers. For example, I was doing HIV advocacy, sensitising people and advocating for positive living on a WBS TV programme with Betty Tibakeka.

We would discuss salient HIV-related issues on a TV show dubbed My Untold Story. After which viewers would call and ask questions or make comments.

I made a statement that today, only the naughty and naïve people can die of AIDS. Someone called and lashed out at me for being a ‘heartless’ person who mocks those who die of AIDS.

He called me a nincompoop and prayed that I die of AIDS soon. I apologised and tried to explain that with ARVs, you can suppress your viral load and not die of AIDS. For example, today, there is Undetectable = Untransmittable (U=U) campaign to stop sexual transmission of HIV.

When a person with HIV is on effective treatment — taking ARVs daily as prescribed — it lowers the level of HIV (the viral load) in the blood. That way, he or she is not be able to infect another person. “Is that so!” he exclaimed and thanked me for the information.

Taking care

Nutrition/balanced diet

If you are on ARVs you need a balanced diet, with body-building, body-repairing and energy giving foods, to boost the body’s ability to fight diseases.

The quality of feeding significantly influences the success of ARVs by reducing side effects, improving drug effectiveness and general health. Some people skip drugs whenever they have no food, because the drugs are strong and 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.

Hygiene

Practice proper hygiene. Wash your hands often, especially before meals and after using the toilet. Practice general hygiene, such as washing the body, brushing teeth and grooming nails.

Self medication

When you are ill, seek medical attention immediately. Never treat yourself and make sure that you look for proper medication and strictly adhere to it. Treat all the opportunistic infections, and adhere to the times of required tests like liver and kidney function tests.

Exercise

Exercise to keep the body active and avoid overweight. You should have sensible and quality leisure that builds you. Avoid stress and other immune suppressing conditions.

HIV testing

It is rare for a healthy person to go for a blood test. Yet it is important that you know your HIV status. Last Christmas, two of my friends came to pick me to have lunch at their home. As they drove, I took the opportunity to advise them on a few issues I considered important. One of them was asking them to establish their HIV status. They were shocked! They did not seem to approve of it. One of them just laughed it off while the other one looked as if he was terribly offended. It often happens when a person asks you to test for HIV; you ask yourself: “Do I look like I have the virus?” The point I was making to my friends was that if they knew that, as adults, they had had unprotected sex in the past few months, it was sensible and advisable for them to go for a checkup.