How to address HIV/AIDS stigma in health facilities to achieve UHC

Julia Waruguru, an HIV adherence counselor speaks to a woman being tested for HIV at the IOM treatment center in Nairobi, Kenya. Photo by: REUTERS/Baz Ratner

GRANADA — Ensuring universal health coverage is truly inclusive requires providing coverage for even the most hard-to-reach and marginalized groups. Many of these key populations — for example, men who have sex with men, transgender people, and sex workers, among others — are also at a heightened risk of contracting sexually transmitted infections and diseases, for example HIV, which means that creating a strong HIV/AIDS response is integral to the success of UHC goals.

While much work has been done to decrease HIV-related infection and fatalities since the peak of HIV/AIDS-related deaths in 2005, stigma and discrimination against people living with a positive HIV status persists.

“We know how to measure stigma, and we know how to address it.”

— Laura Nyblade, fellow and senior technical adviser on stigma and discrimination, RTI International

While people living with HIV face stigma in all parts of their lives, it’s of particular concern in health care facilities, where people living with HIV/AIDS are often at their most vulnerable, and go to receive treatment and care.

Stigmatizing behavior — particularly in the health care setting — has very real consequences: According to a 2017 UNAIDS report, people living with HIV who perceive high levels of HIV-related stigma are 2.4 times more likely to delay enrollment in care until they are very ill.

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According to the same report, more than a quarter of the people living with HIV surveyed in eight different countries reported that they had avoided going to a local clinic within the past 12 months because of their HIV status. Some of the reasons for this avoidance include: fear of breach of confidentiality — having their status revealed to others without their consent — as well as fear of being treated poorly by health care staff and fear of judgment, among others.

Reducing stigmatization and discrimination associated with HIV/AIDS is critical if the goal of ensuring UHC by 2030 is to be achieved.

“Governments around the world have committed to reducing stigma and discrimination — including in health care facilities — and to implement measures to ensure that such discrimination is not happening,” said Luisa Cabal, special adviser for human rights and gender at UNAIDS. “This is not optional — it’s a legal obligation. This is not just about health, but about human rights.”

Defining, measuring, and quantifying stigma

The first step to reducing stigma and discrimination in health care facilities is by ensuring that staff members are educated about what stigma is, can identify stigmatizing behaviors, and understand the true consequences of stigma and discrimination.

“Awareness of stigma is critical. We all stigmatize all the time, but we aren’t aware we are doing it,” said Laura Nyblade, fellow and senior technical adviser on stigma and discrimination in the Global Health Division of nonprofit research institute RTI International, who has been working in the field of stigma reduction for more than 15 years.

“Health care workers want to help and do the right thing, and sometimes won’t be aware that something they are doing to be helpful is actually stigmatizing.”

According to Nyblade, reducing stigma also requires identifying its actionable drivers — areas where programmatic interventions could be effective. Such drivers might include lack of awareness of stigma and its harmful consequences, fear of transmission, attitudes, or resource gaps within the health facility environment.

As an example of how lack of awareness can lead to stigmatizing behavior, she pointed to a pharmacist she met in Ghana who had organized a separate medication pickup line for people living with HIV. While the intention was good — saving clients’ time — treating people living with HIV differently from other clients could lead to unintentionally revealing their status.

“Stigma is often about perception, so the health care workers might not see themselves as having stigmatizing tendencies, while the clients may feel that they are being stigmatized.”

—  Dr. Patricia Oluoch, technical adviser, Centers for Disease Control and Prevention Division of Global HIV & TB, Kenya

Equally, fear of transmission might lead some health care workers to wear two pairs of gloves when treating patients living with HIV. Or, if the health environment isn’t adequately resourced, staff members might decide to only wear gloves when working with patients who are living with HIV, rather than wearing gloves with all patients — which may unintentionally disclose their status or result in clients feeling discriminated against. Professionals working to reduce stigma often prefer the term “client” to “patient,” as the latter in itself can be perceived as negative.

According to Dr. Patricia Oluoch, technical adviser to the Centers for Disease Control and Prevention Division of Global HIV & TB in Nairobi, Kenya, miscommunication between clients and health care workers can also leave people living with HIV feeling as though they are being discriminated against, when in reality they lack information.

Staff members might, for example, put clients living with HIV in a separate part of the clinic if there’s an active infection that might jeopardize their health. If the reasons for that separation are not communicated to the clients, they may believe that they are being discriminated against due to their HIV status instead of being protected from infection.

“It’s important to realize that stigma is often about perception, so the health care workers might not see themselves as having stigmatizing tendencies, while the clients may feel that they are being stigmatized,” Oluoch said. “Our studies have shown that actions that clients perceive as stigmatizing may be due to lack of awareness and gaps in interpersonal communication.”

Strategies that work

Luckily, there are a number of strategies health care facilities can adopt that have been proven to reduce stigma.

“One of the big issues is … people say that we don’t know how to measure stigma. But that’s not true,” said Nyblade. “We know how to measure stigma, and we know how to address it.”

Nyblade recommends conducting surveys in health care facilities to help identify the key actionable drivers and gaps in care, followed by participatory training. For these training sessions to be effective, they must include all staff members — including guards, cleaning staff, and receptionists — as well as doctors and nurses. They should also involve the active participation of people living with HIV.

“We’ve found that role-playing is a very important tool in effective interventions,” Oluoch said. “You can’t just teach stigma and interventions theoretically — role-plays allow people to actually see examples of stigmatizing tendencies, and how those play out.”

According to Nyblade, it’s extremely important that such interventions holistically address the key drivers of stigma. For example, talking about the fear of exposure among health care staff alone isn’t enough. Infrastructure gaps must also be addressed, such as ensuring that anonymous self-testing kits and anti-retroviral treatments are stocked and readily available in health care facilities, in case health care workers are accidentally exposed.

And finally, it’s vital that interventions are integrated into the hospitals’ routine training, to ensure that all new staff members also receive the training, according to Nyblade.

HIV/AIDS continues to affect more than 36.9 million people around the world — 1.8 million of which are children. Only by ensuring that people affected by HIV/AIDS receive high quality, timely and reliable treatment — which can only happen in the absence of stigma — can UHC be achieved.

“If you invest in stigma reduction, you’ll have a payoff along the whole treatment cascade — from testing, to linking to care, to starting treatment,” she said. “It’s a compounding effect, which translates to an investment in HIV testing, treatment, and to overall patient health.”

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About the author

  • Malia Politzer

    Malia Politzer is an award-winning long-form journalist who specializes in international development, human rights issues and investigative reporting. She recently completed a fellowship from the Institute of Current World Affairs in India and Spain. For three years, she worked as a feature-writer at Mint, India’s second-largest financial newspaper, where she wrote about international development, strategic philanthropy and impact investing. She holds an M.S. journalism from Columbia University Graduate School of Journalism, where she was a Stabile Fellow for Investigative Journalism, and a B.A. from Hampshire College.