Opinion: When civil society can’t do its work, adherence to HIV treatment dips.
On World AIDS Day, it is important to take stock of where South Africa is in its efforts to ensure the health and dignity of people living with HIV, prevent the spread of the virus and fulfil the goals of the National Strategic Plan for HIV, TB and STIs (NSP) 2017-2022.
As members of civil society working on HIV, we have noted that COVID-19 has disrupted access to healthcare for many people, including people living with HIV, reversing some of the progress made in implementation of the NSP.
Particularly early during the lockdown, we received reports that some people living with HIV in Limpopo could not easily access their antiretrovirals (ARVs) and we have also observed decreases in adherence to treatment. We have received worrying communications from people who are taking treatment about lack of access to HIV care in Limpopo, which mirrors concerning trends and reports from across the country.
In Gauteng, 11 000 people living with HIV did not collect their ARVs between March and May 2020. Data from the nationally representative NIDS-CRAM survey, published in April 2020, shows that 39% of participants in the survey who live with a chronic condition like HIV, TB, diabetes or heart problems did not have access to medication, condoms or contraception.
District health reports from Limpopo presented at an AIDS council meeting in October confirm that access to other sexual and reproductive health services like condoms, voluntary medical male circumcision and contraceptives has also declined.
Part of the reason for these problems is that civil society could not work with people living with HIV during the COVID-19 lockdown. During the period of hard lockdown, provincial AIDS councils – structures made up of provincial government departments, business sectors, civil society and NGOs, tasked with coordinating, monitoring and evaluating the HIV and TB Multi-sectoral response in each province – could not meet or travel to address challenges experienced by people living with HIV.
Provincial AIDS councils are important structures through which government can be held accountable for its efforts to fight against the spread of HIV, TB and STIs (sexually transmitted infections) in the country. But even now that we are at level 1, many activities in Limpopo to support adherence to HIV treatment have not resumed.
Lack of access to treatment
During the level five lockdown, the National Department of Health said people living with HIV who are on treatment will get three months’ supply of ARVs, to avoid unnecessary movement. However, we learned that some patients were given a one month supply of medication because the following month they were supposed to have blood tests monitoring for viral load and CD4 count.
The Treatment Action Campaign (TAC) in Limpopo was doing monitoring on the uptake of ARVs during lockdown. It found that 87% of interviewees taking part in the TAC monitoring received two months’ supply of ARVs, while a worrying 9% received only one month’s supply. Only one individual reported they received a three months’ supply of ARVs.
Some patients told us they had problems with the centralised chronic medication dispensing and distribution system (CCMDD). All the patients that are registered with the CCMDD received SMS notifications to go collect medication. But when they went to collect medication, some patients informed us that they were not provided with the full three months’ supply of ARVs as promised by the national department.
New treatment regimens and adherence support
Since World AIDS Day last year, treatment changed for over 1.3 million people living with HIV from a three-drug combination based on the ARV efavirenz to a new three-drug combination built around the ARV dolutegravir. The change was a good idea, because dolutegravir is well tolerated, has few side effects, is highly effective, and has a high barrier to resistance.
But the problem was that many people whose treatment was changed during lockdown were not orientated about the changes. The HIV treatment struggle has showed the importance of people living with HIV understanding and being fully orientated about the treatment that they are taking, to improve adherence and acceptance of treatment. Without proper education and empowerment about the new medicine, it was difficult for some people to take their treatment properly, putting them at risk and undermining progress towards the NSP goals.
In normal times, members of civil society organisations (such as ourselves) would give health talks at clinics to help people transition onto a new regimen. AIDS councils also sometimes run support groups and adherence clubs to support people living with HIV and encourage retention in care, to sustain viral suppression and make sure that everyone gets proper information on adherence.
These spaces are also important for sharing information about people’s experiences of living with HIV, to fight self-stigma and societal stigma and discrimination, to raise awareness about issues affecting people living with HIV and to encourage openness and disclosure. Training of support groups assists people living with HIV to know their rights and be able to voice their challenges.
Ordinarily, adherence clubs meet at least every three months, and members of civil society would assist individuals’ transition onto new medication regimens. But during the COVID-19 lockdown, adherence clubs and support groups were banned from meeting, and no groups in Limpopo have met since the lockdown began. This means that programmes at the community level to help people adhere to treatment, and to give people living with HIV a sense of community, have stalled, with the inevitable consequence of decreased adherence and increased difficulties for people living with HIV.
The effects of disruptions to AIDS councils
The Limpopo AIDS council has met twice through virtual meetings, but the effectiveness of these meetings was low because many members had connectivity difficulties and did not have resources like data. Many members of district level civil society groups also did not have access to data to allow them to participate in council processes – thus making these processes more disconnected from communities than what they would be otherwise. Most AIDS council members also did not get work permits allowing them to travel around the province during lockdown.
This has not only impacted the HIV and TB response but also has limited civil society’s ability to contribute to the fight against COVID-19. Civil society members who were trained with knowledge on COVID-19 were ready to embark on educational awareness campaigns for COVID-19, alongside regular work on HIV, TB and STIs. Unfortunately, we could not share the information with the communities because we were not able to move from point A to point B.
Disruptions to HIV treatment now will have serious effects on people’s health and delay the goals of the NSP. Treatment interruptions because of COVID-19 disruptions could cause drug resistance, or prevent the suppression of people’s viral loads to undetectable and untransmittable levels.
Models suggest that a three-month disruption to anti-retroviral treatment (ART) in South Africa could cause 55 000 excess deaths from HIV-related illnesses in 2020. If people’s ART was disrupted for six months, there could be 84 000 excess HIV-related deaths.
Civil society must be allowed to do its job in supporting adherence campaigns, preventing defaulting and help implement the NSP. If South Africa is forced to go into lockdown again, support groups and adherence clubs should be functional to make sure that everyone is monitored, has regular access to information and treatment, and that people are motivated to adhere to treatment. Civil society involvement in the response to HIV should be learned from rather than interrupted in times of crisis.
*Maluleke and Milambo are both community mobilisers with SECTION27.