Understanding the Barriers to HIV Care

Ending the HIV epidemic depends on first identifying unmet needs, disparities in care

Engaging and retaining people living with HIV in care is crucial for improving health outcomes and reducing HIV transmission. But a clear picture of the HIV care continuum is still missing.

A recently published Kaiser Family Foundation study sought to fill this research knowledge gap by asking: What do we know about people with HIV who are not engaged in regular HIV care, and what healthcare access barriers do they face?

Understanding the Barriers to HIV Care

People who are out of regular HIV care were defined by the study authors as individuals who received fewer than two CD4 or viral load tests at least three months apart within a 12-month period and had at least one viral load test within the preceding 12 months that showed they were not virally suppressed.

Drawing on nationally representative data from the Centers for Disease Control and Prevention’s Medical Monitoring Project (MMP), which compiles information about adults diagnosed with HIV based on in-depth interviews and medical records, the researchers found that 21% of adults with diagnosed HIV had been out of care between 2018 and 2020.

People who were out of care were more likely to be Black, younger, and to report “fair or poor” health and less likely to report “excellent or very good” health than people who were in care. Compared to those in care, they were also more likely to be uninsured or receive Medicaid, and less likely to be privately insured. People who were out of care reported significantly lower levels of support from the Ryan White HIV/AIDS Program than those in care. They were also less likely to receive clinical support and non-HIV medical/behavioral and subsistence services than those in care.

The barriers to care more likely to be experienced by those out of care included problems with money or insurance, inability to pay medical bills, depression and other mental health issues, personal issues, and difficulty in getting to a doctor’s office. Overall, those out of care reported more barriers to access than those in care; however, they were also more likely to report they delayed care because they felt well compared to those in care. Other issues included not having a regular provider, missing appointments, and not being on antiretroviral therapy, among others.

Researchers hope that addressing healthcare barriers will not only help people living with HIV achieve better health outcomes but also help the U.S. reach the goals outlined in its national AIDS strategy and Ending the HIV Epidemic initiative, such as preventing infections and reducing health disparities.

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