As the world commemorates World Aids day tomorrow, antiretroviral drugs (ARVs) side effects persist, despite access moving in an upward curve in Uganda.

This year’s theme for World Aids day is ‘Joining Hands to Scale up HIV prevention’ as countries renew prevention campaigns. But in all the good efforts, stakeholders are calling for treatment literacy since life-threatening side effects of the life-prolonging drugs are rampant.

According to a ministry of health demographics report 2014-2015, many people on free ARVs had developed resistance and warned, the threat of large-scale drug resistance remains “real and scary”.

Doctor Sarah Nayiga, a specialist in HIV/Aids and tuberculosis (TB) at Mulago hospital, treatment literacy was not only low among patients, but also among health workers.

“Resistance is building up because staff in most hospitals in the country show evidence of low treatment literacy,” she said. As a result, patients are started on ARVs without the right information on feeding, drug-interaction and what to expect, among others.

A survey in 2015 by National Forum of People Living with HIV&Aids Networks in Uganda (NAFOPHANU), found that only 15 per cent of doctors had been trained in HIV care and management; doctors, clinical officers and nurses, on average, had read only four of the eight national HIV/Aids guidelines.

NAFOPHANU’s Milly Katana says people taking ARVs and their supporters need to understand new and complex ideas around drugs, side effects, nutrition and positive living.

Treatment literacy aims to help individuals and communities understand why ARV treatment is needed, and what it can and cannot do. Resistance to nevirapine, an ARV used to prevent mother-to-child transmission of the virus, is one of the drugs in the resistance discussion.

Dr Stephen Natiti, a consultant on HIV/Aids, says: “Many women failed to respond to treatment after they developed resistance to nevirapine.”

Natiti says apart from the usual side effects that include nausea, vomiting, diarrhoea, dizziness, headache, rash and fever, “there are symptoms like developing a ‘buffalo’s hump’ on the back of the neck, thinning of the bones [osteoporosis] and high levels of cholesterol and triglycerides – these are types of blood lipids (fats) – which can lead to heart disease and inflammation of the pancreas”.  

Also, despite thoroughly adhering to treatment, some persons who have lived with HIV for 15 years or more are presenting symptoms of secondary disability; impaired vision, reproduction complications, cancers and other non-communicable diseases.

“The problem may not be serious at the moment, but the threat is real,” says Katana. “We are concerned about the competence of the available manpower to cope with drug resistance.”

Renowned HIV/Aids activist and patient Maj Rubaramira Ruranga, however, calls on government to significantly increase domestic funding for HIV and quick operationalization of the Aids trust.

“There should be investment in continuous research; HIV treatment shouldn’t be business as usual,” he says.

Also, activists are calling for the addition, registration and approval of medicines such as the WHO-endorsed  Dolutegravir (DTG), which has been proven to have fewer side effects.

Nayiga says elimination of drug stockouts and scaling up routine viral load monitoring services should be paramount.

“Stockouts of HIV and TB drugs continue to exist, forcing many people living with HIV into drug holidays, which are a catalyst to drug resistance and hence the side effects,” Nayiga notes.

An estimated 1.5 million Ugandans live with HIV and, according to a 2016 Unaids Gap report, only 57 per cent of adult patients are currently receiving treatment.

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