One in five refusing ART in Soweto, even when in need

One in five newly diagnosed ART eligible adults attending the Zazi Testing Center, Perinatal HIV Research Unit (PHRU) in Soweto, South Africa refused to start free ART, provided onsite, within two months of diagnosis.

Ingrid T. Katz and colleagues reported these findings in a cross-sectional analysis comparing newly diagnosed ART eligible adults who refused to start treatment with those who agreed to start from December 2008 to December 2009 published in the advance online edition of AIDS.

70% of those presenting at the Zazi Center had been tested previously. “Too healthy” was the most frequent reason given for refusing treatment in spite of a median CD4 cell count of 110 cells/mm³ (IQR: 58-148), leaving them at risk for early death.

Globally sub-Saharan Africa has the greatest number of people living with HIV. Studies have shown death rates during the first year on ART range between 8 and 26% with most deaths happening within the first few months.

Studies in South Africa have shown those who present late for treatment with low CD4 cell counts at the time of starting ART are at an increased risk for early death.

South Africa with close to six million people living with HIV now has the largest antiretroviral treatment programme in the world with an estimated one million on treatment by the end of 2009.

Yet, the dramatic increases in voluntary testing and counselling (VCT) with over half of all South Africans having tested at least once has not resulted in more people starting ART earlier. Approximately only half of those in need of treatment get it. This raises concerns about the efficacy of VCT as the traditional route to treatment and care.

The authors note that most studies to date have focused appropriately on linkage to care, especially loss to follow-up and where delay in starting ART has affected pre-ART death rates. However, little is known about the reasons for delay in starting ART they note, and in particular whether it is “due to failure to present for treatment or actual treatment refusal.”

The PHRU is in Soweto, an urban area with one of the world’s highest HIV transmission rates. Free comprehensive testing, treatment and care is provided. On-site VCT has been provided since 2001 with funding from USAID and PEPFAR.

The Zazi (VCT) Center provides HIV rapid testing to adults aged 18 and over as well as family planning, screening for TB and sexually transmitted infections (STIs) monthly. Those who test HIV positive return for their CD4 cell counts a week later and are referred as appropriate. Following referral the clients meet with social workers to discuss starting ART.

Patients included in the analysis were HIV-positive and treatment eligible (with CD4 cell counts under 200 cells/mm³ or at WHO clinical stage 4). Free onsite treatment was offered. Those who refused were further counselled for up to two months by a social worker.

Of the 7287 adults presenting at the Zazi Center from December 2008 to December 2009 35% were found to be HIV-positive.

Among the 2562 HIV-infected 29% (743) were eligible to start ART immediately. Of these 20% (148) refused to start treatment upon referral of which 92% continued to refuse treatment after two months of counselling.

The authors note that while an overwhelming 92% of those tested said they would be willing to disclose, over 20% of those who refused ART said they were “unable to disclose.”

After adjusting for other factors those who were single were almost twice as likely to refuse to start treatment compared to other marital status groups (AOR: 1.80; 95% CI: 1.06-3.06, p=<0.05).There was no gender difference between those who accepted and those who refused treatment; approximately one-third in each group were male.

So the likelihood of non-disclosure, note the authors, is high and of concern among single sexually active individuals. It is especially relevant, they add, given the evidence that antiretroviral treatment in HIV-positive individuals prevents transmission to uninfected regular partners.

Those with active tuberculosis (TB) were more than three times more likely to refuse to start ART compared to those without (AOR: 3.20; 95% CI: 1.55-6.61). This supports other findings of an association between having active TB and a low acceptance of ART, the authors note.

The authors highlight the importance of starting ART early especially in those with co-morbidities. They cite a recent study in South Africa that showed early start of ART together with TB treatment reduced mortality by 56%.

The authors note a critical limitation. The data collected were not specific to looking at factors associated with treatment refusal. At the time the concept of treatment refusal had not been identified. As such there are no data on a patient’s understanding of HIV and AIDS and what their test results might mean.

Having identified a critical barrier to improving coverage that goes beyond availability, cost and a willingness to test the authors note the need to “market the concept of ART as a life-saving intervention, even for people who report feeling healthy.” They conclude “these finding highlight the urgent need for research to inform interventions targeting ART refusers.”

Katz IT et al. Antiretroviral refusal among newly diagnosed HIV-infected adults in Soweto, South Africa. Advance online edition AIDS, doi: 10.1097/QAD.0b013e32834b6464, 2011.