It’s flu season on a Saturday night and Alex isn’t feeling well. By Sunday morning he’s miserable—shaking, coughing, nauseous, short of breath, and running a high fever. His mother calls, urging him to seek medical care, and his girlfriend offers to drive. Alex hesitates. His regular doctor is closed on the weekend and some of his past experiences seeking care outside his regular doctor’s office have left him feeling humiliated and ashamed.
In his feverish state, Alex remembers back to the last time he sought medical care outside his regular health care provider. When urgent care staff found out he was living with HIV, their whole attitude toward him changed. They arrived in the room donning goggles, a mask, and two pairs of gloves to simply take his vital signs. They also asked intrusive and medically unnecessary questions about how he had contracted HIV.
The facility even tried indirectly to deny him care by saying they were not trained to deal with HIV. He pushed back, noting that the condition he was seeking help for had nothing to do with his HIV status, but that effort exhausted him.
So this time Alex waits until Monday to see his regular doctor, at which point he is so sick he ends up being hospitalized.
Today, HIV is a chronic condition rather than a death sentence, but the stigma people living with HIV face is very, very real. It appears in individual and insidious ways—like what happened to Alex. Stigma is also present in policies or programs that affect thousands of people—like the use of criminal law to penalize same-sex sexual behavior or alleged, perceived or potential HIV exposure.
Whether insidious or in-your-face, stigma affects people’s lives. It discourages people from getting tested for HIV, sharing their HIV positive status with loved ones, and seeking care and sticking to treatment. These experiences are not few and far between. As of 2011, in the U.S. only about 40 percent of people living with HIV are receiving the medical care they need to stay healthy, and reduce the risk of onward transmission of HIV. Stigma contributes to this statistic.
Stigma may seem like a complex issue, but one thing is crystal clear: We’ll never reach ambitious U.S.-endorsed goals to end AIDS in a generation if we don’t address stigma both here in the U.S. and worldwide.
The first step? Pull apart the complexities and actually work to understand stigma—what it is, why it happens, and how it can be remedied. Thankfully, over the past two decades a growing body of international research has produced more tools than ever to understand, measure, monitor, and reduce stigma and its impact on people living with HIV.
One such tool is the health care facility stigma reduction package, developed under the USAID and PEPFAR-funded Health Policy Project, which provides a standardized questionnaire to measure stigma and discrimination in health facilities and provides training for stigma-reduction among health care staff members.
Data collected by this survey can provide routine monitoring of HIV-related stigma in health facilities, and also support the expansion and improvement of programming and policies that address HIV stigma.
Health care facilities are the very place that people living with HIV should find educated and compassionate care, not stigmatization, like Alex experienced. Health facilities are therefore the frontlines of the fight against HIV stigma.
It’s not enough, however, to just better understand stigma. We have to ensure that goals and targets for stigma-reduction are integrated into national HIV strategies, that stigma indicators are included in national monitoring and evaluation frameworks, and that requiring health care facilities to provide stigma-free services to everyone becomes the norm.
Only then will real funding and resources actually be dedicated to eliminating stigma.
Thailand is one country leading the charge; the nation has set a target to reduce stigma as part of their national HIV strategy. With technical support from RTI International, a leading research institute dedicated to improving the human condition by turning knowledge into practice, Thailand is now routinely monitoring stigma and beginning to pilot a national program to reduce stigma and discrimination in its health facilities. Reducing stigma will be a key factor in meeting Thailand’s national HIV goals, as well as contributing to global HIV goals.
We’ve also started to see hopeful movement on addressing HIV stigma in the U.S. Reducing stigma and eliminating discrimination associated with HIV is a key recommended step to achieving one of the goals in the latest U.S. National HIV strategy. And in March, the Office of National AIDS Policy, National Institutes of Mental Health, and the NIH Office of AIDS Research convened a meeting at the White House to discuss how to translate research into action that will reduce stigma and ultimately ensure more people are successfully tested, cared for, and treated.
Still, this is only the beginning, and there is much work to be done.
The fight against stigma is one that doesn’t just affect people living with HIV. The LGBTQ community, people living with mental health issues, people who use drugs, and even survivors of diseases like Ebola are just some of the groups who experience stigma.
The HIV research and program community must continue our efforts to measure, understand, and respond to stigma. To achieve our ambitious national and global HIV goals, both national governments and HIV donors must consider more concerted and scaled responses to stigma, integrating stigma-reduction into all aspects of the HIV response.
Most importantly, every single one of us has a role to play. All of us stigmatize, often without knowing it. Our intent isn’t to harm, however our inadvertent stigmatizing actions do hurt people like Alex. We must all educate ourselves about HIV and stigma. Together we can create change.