Q&A: Health workers as the key to stigma-free HIV care

In a bid to generate more health care environments free from sigma for people living with HIV, the International AIDS Society and Gilead Sciences are partnering on a campaign called Me and My Healthcare Provider.

The campaign, which has been running since 2015, recognizes individual health workers who have gone above and beyond in providing judgment-free care for people living with HIV and promotes best practice in the delivery of HIV treatment and care.

“Just imagine: If you think every time you go to the clinic to pick up your drugs you're going to face a lecture about your behavior or fear being judged for having acquired an infection like HIV, then you're going to think twice about going or just not go at all,” said Lucy Stackpool-Moore, director of HIV programs and advocacy at IAS. Positive patient-caregiver experiences could support better adherence to medication while also safeguarding mental health.

“That can really make a big difference in terms of how someone feels about their diagnosis and how inclined they are to come back regularly,” Stackpool-Moore said, adding that the campaign aims to inspire others to create safe and stigma-free environments for those seeking care.

To date, Me and My Healthcare Provider has recognized the work of 36 “champions” from 17 countries. Gilead’s addition to the campaign will see it newly rolled out in Hong Kong, South Korea, and Taiwan, while allowing the program to be renewed in Brazil and Mexico.

Sitting down with Devex, Stackpool-Moore discussed the secondary effects of stigma in health settings, creating environments that are judgment-free, and how the Me and My Healthcare Provider campaign can help.

This conversation has been edited for length and clarity.

How does stigma related to HIV affect people’s access to services?

Something that's important to recognize — and may be not recognized enough — is the impact that stigma can have on prevention. It can prevent someone from being fully open with their health care provider about the potential risk of exposure they might have from their sexual behaviors or drug-taking behaviors. If someone doesn't feel comfortable in bringing their whole selves into a consultation with the provider, they might not be able to access or know about the full range of prevention options available to them.

Looking at knowing your status and testing regularly — particularly if you're someone at higher risk of acquiring HIV — stigma can create a barrier to testing. You may not go locally to a testing service if you don't want to be seen or recognized.

Stigma can affect someone living with HIV on receiving a positive diagnosis. As a person who is newly diagnosed, it can come with a sense of “guilt,” “shame,” or “dirtiness” — common words that people say around their reaction to hearing a positive diagnosis.

There is a knock-on effect of how comfortable people then are to keep to their clinic appointments, get treated, and take treatments regularly, which in turn have an impact [on] health outcomes.

How crucial are health care providers in fostering stigma-free environments?

Health care providers are absolutely essential to this because often they're the ones who are first present when someone is first hearing about an HIV-positive diagnosis. That can be profoundly influential in terms of how someone makes sense of that information in that moment and over time. In fact, a wide range of medical services is needed for the overall health management of people, including people living with HIV. The scope of providers isn’t limited to those who have frequent interactions with them.

There are such remarkable examples of good practices around the world where health care providers — despite prevailing norms around stigma, around discrimination or laws, around criminalization or exclusion of certain key community groups, and social pressures — do the right thing. They are open, accepting, and provide quality services without judgment. It's something I think probably could be taught better in pre-service training for health workers in universities and residences, but also in ongoing training.

The current debates around feminism, transgender issues, sexual orientation, and identity are providing a very dynamic space for discourse and understanding. Health care workers should stay up to date on the most pressing concerns, appropriate language, and small actions that can be taken. For example, in a new visit to a clinic, if someone has to fill in some demographic information, and if on that the choices are limited just to “male” or “female” in a very binary way, that immediately alienates a good number of people.

Similarly, in a consultation around recent sexual encounters, an incorrect assumption from the provider that their client only has one partner may make someone feel judged and uncomfortable to reveal crucial information that would have an effect on providing appropriate sexual health services, including preventing the spread of HIV.

Language is also a powerful tool. A good terminology guide to note — that is regularly updated — would be one released by the People First Charter and based on the UNAIDS terminology guidelines.

What can you tell us about the Me and My Healthcare Provider campaign, in partnership with Gilead Sciences?

The objective of the campaign is to recognize, identify, and celebrate remarkable health care workers who — despite prevailing pressures to stigmatize, judge, or discriminate — do the right thing. They embrace. They provide quality services. They offer a safe haven to people who might otherwise be very judged in the context in which they're coming from. The campaign is focused on people from key populations groups in the HIV response, including men who have sex with men, sex workers, transgender people, and people who use drugs.

What we're trying to do with this campaign is to focus on the positive stories and look at where they have made a profound difference in people's lives in the kind of quality of care received.

Going forward, how might this project be scaled up?

We're hoping that the simple act of amplifying these powerful stories will inspire others to do the same. It’s a bit like the idea of “paying it forward.” Maybe someone can witness them and think: “What would that mean for me? What is a change I could make in terms of how I offer my services? Maybe there's one small thing I can do to help make a difference to someone in a big way.”

Alongside the campaign, for the first time, we're going to systematically go back over the history and see if we can better understand if there is some magic ingredient at the individual level that has motivated health care providers or equipped them to be remarkable service providers. If there's more we can do to understand that, that could inspire greater ideas to break down the barriers of stigma — such as soft skill education among health workers — in the health care delivery setting.

Details about how organizations in Brazil, Mexico, Taiwan, South Korea, and Hong Kong can get involved can be found at asociety.org/Working-for-the-IAS. For any questions in regard to the campaign, please reach out to advocacy@iasociety.org.