A mother is tested for HIV at Kawolo Hospital, Eastern Uganda. Photo credit: URC

More than 1.4 million people in Uganda – approximately 6.5 percent of the country’s population – are HIV positive. Uganda is working to reduce this rate with international assistance, but many personal and cultural barriers stand in the way of Ugandans from seeking HIV testing and treatment.

The USAID Applying Science to Strengthen and Improve Systems (ASSIST) project, led by URC, is working to improve Uganda’s health system, including increasing participation in and access to HIV prevention and treatment services in 16 districts in Northern Uganda.

Esther Karamagi, USAID ASSIST Chief of Party. Photo credit: URC

“Typically, barriers to early HIV testing and initiation in treatment have been problems with the health system, such as low supplies of testing kits and drugs and long waiting times, or other challenges such as traveling to health centers,” said USAID ASSIST Chief of Party Esther Karamagi, MBChB, MSc.

“But we found that Ugandans avoided testing and treatment for many patient-focused reasons,” Karamagi said.

Many Avoid HIV Treatment Due to Lifelong Drug Regimen

ASSIST Uganda conducted a root cause analysis in March 2018, with detailed interviews through routine counseling work, with 341 people reached from north, east central, eastern, and south west Uganda who had tested positive for HIV in the last month but who had not started antiretroviral treatment (ART). Interviewers asked a series of follow-up questions that revealed more detailed explanations of their initial answers.

Many of the interviewees, no matter the region, said they did not begin treatment because of various concerns about starting a lifelong ART regimen, such as side effects from the drugs or not having enough food to consume with the drugs.

However, many interviewees in the Southwest also were afraid of the stigma of being associated with HIV. In East Central districts, many people still felt healthy and didn’t believe the accuracy of the test results.

Men and women also cited unique (though not predominant) reasons for avoiding HIV treatment. Certain men said they weren’t psychologically prepared to start ART. Certain women were afraid that the medication would prevent them from having children, they needed to get permission of their husbands and that they suspected the HIV positive test results were not true, among others.

“For the health system to effectively address these barriers to seeking care and to achieve the UNAIDS 90-90-90 goals on HIV status, ART, and viral suppression, Uganda will need to develop program strategies customized to specific regions and genders, and develop patient centered solutions” Karamagi said.

The cost of transportation to a facility with HIV treatment also is a barrier for many Ugandans, the analysis found. An average Ugandan household has five people, has a budget of $121, and spends approximately $5 per month on transportation. The cost of transport to and from a health facility for drugs costs approximately $3 per visit.  

“If the patient cannot walk to the facility, they are unlikely to afford the recurrent cost of transport to the facility for HIV care and treatment,” Karamagi said. “This is especially true if there is more than one person with HIV in the family.”