Even though James Mugerwa, 19, lost both his parents to Aids, he still thinks HIV is a myth or just a fairytale. A resident of Tanya village in Rakai District, where the first Aids case in Uganda was recognised around 1982, Mugerwa argues that his parents could have died of any other disease and wonders why people refer to Aids an epidemic.
‘I have not seen people dying of Aids-related infections. I was told that whoever got infected experienced symptoms like fever, vomiting, diarrhoea, become sickly and slim, with multiple scars.
But none of those signs manifested in my parents before they died 20 years ago. I was 10 years at the time, old enough,’ Mugerwa reasons. I found Mugerwa’s reasoning quite narrow-minded. Yet, there is quite a number of youth who think like Mugerwa that HIV is a myth. At just 19, Mugerwa could probably be forgiven for being sceptical about the existence of HIV and Aids. A number of young people, especially those born in the 2000s after the spread of HIV had reduced think HIV is not a problem.
Terrible past
It has been 40 years since the first reported case of a ‘mysterious pneumonia-like symptoms’ transformed into a deadly epidemic that quickly became a very familiar part of our daily lives, a very scary, very fatal disease so simple to name with two words-‘HIV/Aids.’ Today, people living with HIV and Aids do not manifest the symptoms that were obvious decades ago. The time when practically in every home people used to mourn every other day in Rakai, which had the most devastating effect of HIV, is becoming history.
Many people living with HIV today are living a healthy life in spite of the fact that they have HIV
Yes, once upon a time, before the medical treatment, Aids was a diagnosis that was most feared with almost no hope of being alive after getting it. Death was automatic. But today, with all of the medications and treatment plans available, people are generally living longer lives.
Reason to worry
Does this now make HIV and Aids a ‘manageable’ disease, no different than high blood pressure or diabetes? Or have we, sadly, become a little too familiar with this infectious epidemic and forgotten just how many people in our community are still dying? Have we become complacent? Experts and activists have warned that ‘dangerous complacency’ may cause a resurgence of the epidemic that has claimed more than 35 million people. In the late 1980s and the 1990s, Aids was a scourge. At least everyone saw it as that. Everybody seemed determined to protect themselves from a condition so deadly.
As a result, infection rates took a nose dive and Uganda as a country was placed on a global pedestal for its efforts towards fighting the spread of HIV. Songs on the radio, plays on TV, in theatres, communities and schools made sure they painted a detailed picture of its heart-wrenching devastation. HIV and Aids was deemed a one way passage to a painstaking, painful death. Abstinence and faithfulness campaigns thus took centre stage, and everyone seemed ready to listen, learn and strictly follow instructions to the letter. Peace Baguma, a person living with HIV, says that those who could not abstain, at least never forgot to wear a condom. Years later, after the introduction of successful HIV treatments such as ARVs, people infected with HIV are able to live healthy, normal lives without fear or dying and leaving their children orphaned.
Finally, it is possible to have children free of HIV. It is not unexpected to be HIV positive and die of old age. A case in point is Major Rubaramira Ruranga who got HIV at age 32 but today he is 76 years old. ‘As a result, people have relaxed and become complacent, but sadly, infection rates have not,’ he says. Recently, a report from the MOH revealed that new HIV infections have hit an all-time high. What has been remarkable progress has in no time turned into an uphill battle once again,’ says Baguma. Ronald Mwesige, coordinator of Rakai Network of Aids Service Organisation (RANASO), agrees with others that people, especially today’s generation, have become complacent, which is hindering HIV fight.
The reduction over the years in the prevalence of HIV and the availability of ARVs has made many people think that HIV is no longer a problem. ‘Also the absence of scare crows-the very ugly signs and symptoms- that could scare people no longer happen. Someone who is on ARVs looks more health and energetic than the one without an HIV virus,’ says Mwesige. Daniel Mugaga, senior clinical officer of Rakai District, concurs with Mwesige, saying the use of antiretroviral therapy has led to the disappearance of the clinical Aids among the population, thus encouraging the young generation not to fear, since they have not seen people dying of Aids and have not seen those ugly pictures of Aids, only hear the stories, says Mugaga.
In a nutshell, the main two things that make the young generation not to fear or to be complacent, thinking that HIV and Aids is a fairytale are, one, the disappearance of the ugly AIDS symptoms which were so much pronounced during the onset of the pandemic, and two, they have not seen people dying of Aids. People who are said to be HIV positive look every-inch healthy. According to the Aids Information Centre, in 2023, an estimated 1.4 million people are living with HIV, and an estimated 28,000 Ugandans died of Aids-related illnesses. The epidemic is firmly established in the general population.
As of 2023, the estimated HIV prevalence among adults (aged 15 to 49) stood at 6.5 percent. Women are disproportionately affected, with 7.6 percent of adult women living with HIV compared to 4.7 percent of men. Other groups particularly affected by HIV in Uganda are sex workers, young girls and adolescent women, men who have sex with men, people who inject drugs and people from Uganda’s transient fishing communities.
The Uganda Aids Commission (UAC), Director General, Dr Nelson Musoba, is concerned about studies that have shown that adolescent girls and young women with multiple risk factors do not consider themselves at risk of acquiring HIV, neither do they worry about it. ‘In fact the popular belief is that a young girl would rather get infected with HIV than getting pregnant. But this is largely due to misinformation and lack of access to the right information. Dr Musoba says emphatically. ‘Those who say HIV is no longer a problem because there is treatment, should know that treatment is not curative, it is for life, it is not easy to take and drug resistance is always knocking at the door,’ he adds.
Why the increase in infections
Mugaga says that the increase in prevalence is partly attributed to the success of the treatment strategies. While the infection rate remains the same, people who get infected no longer die, meaning the population remains the same. Mugaga also adds that complacency in the general public is one of the main reason. People live positive, happy, healthy lives as long as they adhere to the treatment. There are also those on medication who have become complacent, stopped swallowing drugs thinking they have improved. ‘Because fewer people are dying, people are not as afraid of infection as they were before when Aids meant dying.
There is also some among leaders at all levels who think HIV issues are old and tired, thus stopped sensitising communities,’ says Baguma. He stresses that HIV is still a dangerous communicable disease. It can be spread to other people. Hypertension, diabetes, asthma, epilepsy, Parkinson’s disease and other chronic medical conditions are non-communicable-cannot be spread. Today, medical and public health professionals are facing the challenge of fighting an epidemic that does not scare people any more, meaning when complacency multiplies the afflicted can suffer needlessly or silently. ‘Every day, we see the sad and destructive consequences of people who seem to be willing to risk HIV infections just to enjoy sex the way they like it.
Let leaders at all levels, parliamentarians, LCs, RDCs, sub-county chiefs and household leaders get involved in the campaign to reduce infections to zero,’ she says. He also regrets that the preventive messages being used today are wanting and need to be revitalised to become more aggressive such as the ‘drumming’ campaign used decades ago. He also expresses concern that there was a decrease in messages on risk avoidance due to lack of funding. The deterioration in sexual The number of people engaging in unprotected casual sex is on the increase, while many couples are having extra-marital sexual relationships. Condoms use with the alcohol uptake among the population does not become effective because they forget them when they are drunk.
Originally people would be tested and those who were found positive would start preparing for their final journey since there was no treatment. Testing became meaningful and about 70 percent of the population tested. This was boosted by the input of PMTCT which was rolled out in 2003 into most health center 3s, and there was now a ray of hope for many since there was drug for the sick and there also chances of getting an HIV negative baby. If leaders at all levels come on board again, the resurgence of HIV can be averted. Nobody wants diabetes or high blood pressure. But really you do not want HIV neither. Nor do you want anyone else to suffer from it. Help keep yourself and the entire community safe. Be aware. Get tested. Use protection,’ warns Baguma.
WHAT THEY SAY
KYOTERA
Dr George William Walugembe, the Kyotera District health officer, says people have relaxed and compare the epidemic to malaria or any other treatable disease. ‘This mindset is putting us off-track and we may fail to realise the 2030 goal to eliminate the epidemic. If we keep on preventing and then live recklessly it means we are doing nothing,’ he says.
KALANGALA
The same complacency is an issue in Kalangala, according to Dr Hillary Batakalamire, the district health officer. He says the youth and fishermen in particular, have a tendency to lead reckless lives, forgetting that HIV still exists. Much as information about HIV is considered commonplace, Dr Bitakalmire explains that it is within this time that the campaign about the epidemic should be strengthened. ‘Youth tend to invent new behavioural practices, while ignoring strategies that were formulated to protect them against thye virus. But we are trying to push the campaign on condom use, being faithful, and abstinence among the youth,’ he says.
MASAKA
Olivia Nakamwagi, the Aids focal person, says the younger generation believe availability of anti-retroviral drugs, condoms and other initiatives, including safe male circumcision, mean HIV is no more. ‘Well, the strategies are available but it does not give them room to live carelessly. We have continued sensitising people about protecting themselves,’ Nakanwagi says.