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Next, I will discuss some of the barriers to HIV testing, prevention, treatment, and care services that contribute to poor HIV and broader health outcomes on a global level.
It is nearly impossible to talk about race and HIV without confronting power dynamics. Bias occurs not only at the personal or individual level, but also on a system level, in institutions and in the structure of the healthcare system.
In public and population health, interventions often are aimed primarily at patients or the recipients of care and less at the supply side, the HCPs, and structural entry points that can effect change, perhaps because it is easier to group people and send certain classes or types of people for services in a specific area.
In fact, we all have suffered from the normalization of inequities that we have just gotten used to, accepting that this is just how things are. It would be good for us to think about HIV in the context of wider health disparities. HIV can serve as a sort of entry point to healthcare systems where we consider the broader population of public health users.
We often think that people just need better access to healthcare, but in fact, as a 2018 Lancet study shows, improved access is not as important as the quality of healthcare. In fact, quality is what people care about the most.2
In this systematic analysis of excess deaths due to conditions amenable to health intervention in 137 low- and middle-income countries, 5.0 million of 8.6 million excess deaths from conditions amenable to healthcare intervention were estimated to be the result of receiving poor-quality care. By contrast, only 3.6 million were the result of not receiving care.
Specifically in western sub-Saharan Africa, 43.6% of the more than 800,000 healthcare-related deaths were due to poor quality of services rather than not using services. So it almost doesn’t matter if you stay at home—for patients who can access only poor-quality services, their outcome might be the same whether they show up at the clinic or not.
This reminds us to consider the real and lived experiences of recipients of care that may lead them to not seek services or to start and stop services. As depicted in this study by Ehrenkranz and colleagues,3 the reality is more of a cyclical HIV cascade littered with periods of engagement and reengagement in care as we move from testing and diagnosis to treatment, retention, and viral suppression.
Our goal is therefore to minimize the frequency and duration of periods of disengagement. A large part of meeting this goal is delivering a better quality of experiences at care facilities.
It is also critical to reduce the overt stigma and discrimination that occur all too often at health delivery sites, where certain populations are often not offered the best available treatment, their symptoms go unchecked, and they face long wait times for pain medicines. They are denied timely access to services and are not referred to specialists.
We do not always consider these issues because we track what we value broadly in the HIV space. Think about where our data come from. Much of it is from traditional academic sources, such as a randomized, controlled trial or a systematic review in a high-impact journal. These data will reflect the provider viewpoint.
Data are much less likely to come from the demand side, citizens, recipients of care, or the lived experiences of people.We have to be able to name things to make them visible, address them, and eliminate them. You cannot fix something if you do not name it and do a root-cause analysis to understand how we got where we are. That should lead us to seek out the data that come from communities and communities of color, from recipients of care in the public health system. This is what we’ll discuss in the next section.