99% using new HIV drug without knowing what they are taking

Kampala, Uganda | THE INDEPENDENT | HIV activists are blaming government for not giving people living with HIV information regarding the new Anti-Retroviral Therapies (ARVs) yet the country has adopted a human rights approach as a key tool in their HIV response as recommended by the World Health Organisation.

In a new study in which researchers sought to establish whether people living with HIV and key populations are experiencing human rights violations, they found that 99% of the people that were shifted to new fixed-dose combination of ARV drugs – tenofovir disoproxil fumarate, lamivudine and dolutegravir (TLD) don’t know why they were shifted and what exact drug they are taking.

The shift to the new drug started in 2018 whereby the Ministry of Health started by shifting those on first line HIV treatment as the new regimen had proved to help patients not to develop resistance to medicine that has been seen in older treatments.

David Kabanda, a social rights lawyer who was among the team that was consulted by local NGO UGANET to conduct the study says the majority of the respondents referred to the new drug as ‘ ‘dolotiya’ to mean dolutegravir (the new fixed-dose combination antiretroviral medication) but when they were asked why they were shifted, 99% said they don’t know why they had to change their regimens. When they asked health workers, 82% of them didn’t know that patients needed to know other than just receiving the medicine.

In their treatment recommendations to countries, the World Health Organisation stipulates that the client needs to be fully aware of what medicines they are being treated with and the likely side effects.

The study was conducted between September and December in 10 districts including Mbarara, Rakai, Arua, Abim, sampled from each of the regions in the country where by 2,500 participants were interviewed. They included persons living with HIV, sex workers, men who have sex with men, local leaders and hospital medical superintendents.

Other questions they posed to respondents Kabanda says, relate to how easy it was for them to access key needs like food and their drug refills during the lockdown instituted earlier in March to halt transmission of COVID-19. He says 45% of the people revealed not being able to access food to be able to swallow their medicines. Also, he says they found that those whose rights were violated didn’t seek legal redress.

Responding to these findings, Dora Kiconco Musinguzi, the Executive Director UGANET said this data has shown that despite a lot of advocacy over the years, stigma is still rampant and is the reason people living with HIV don’t seek legal redress even as there are a number of organisations that offer legal aid to those affected.

35% of the people in the study acknowledged being stigmatized in some way.

Kiconco says they are now embarking on a new campaign against stigmatization which will be led by popular TV personality Edwin Katamba–MC Kats.

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