The Importance of Community-Led, Integrated, People-Centered HIV Care: A Patient Advocate’s Perspective

Key Takeaways

• Key populations—including men who have sex with men, gay men, transgender people, sex workers, and people who inject drugs—still experience stigma, discrimination, and prejudice in healthcare settings around the world.
• Members of key populations should become leaders at the forefront of the HIV response to accelerate an end to the epidemic by providing integrated, people-centered HIV care within their own communities.

Community-Led HIV Care Services
We have found that—especially in my country, Thailand—most HIV services are siloed and are made available primarily at hospitals or tertiary public healthcare settings, making it challenging for patients, especially key populations, to access these services when needed. Key populations—including men who have sex with men, gay men, transgender people, sex workers, and people who inject drugs—still experience stigma, discrimination, and prejudice in healthcare settings, especially in mainstream public health settings. That’s why many people do not want to go to these settings unless they are seriously ill and then end up presenting in an advanced stage of the health condition.

In Thailand, we have been trying to address this by making HIV services available in the community setting. We have been developing the key population-led health services (KPLHS) model, which we aim to expand and scale up in Thailand and beyond in the region. We are doing this by working with members within the communities of key populations to ensure that they have their own community organizations, and we’re providing the technical support to strengthen the capacity for them to have their own community-led clinics to provide certain HIV services.

We have been demonstrating this model over the past 5 years and have found that, among men who have sex with men and transgender people in Thailand, more than one half of HIV testing uptake came from these key population-led health clinics. In terms of pre-exposure prophylaxis (PrEP), a majority of people in Thailand who receive PrEP also came from these key population-led health clinics. It has become clear that the KPLHS model can increase access to care within communities, and this model has since been replicated in other countries in the region, including Vietnam and the Philippines.

Strengthening Community Leadership
We are not only engaging this community of key populations, but we also strive to strengthen their capacity to be part of the healthcare team. We train members of key populations to provide HIV counseling and testing. They can provide finger-prick blood collection for HIV testing and, if they are trained and certified by the Ministry of Public Health, they also are able to dispense PrEP and antiretrovirals at their own community organizations. At my organization, we developed a training curriculum that was endorsed by the Ministry of Public Health. This has allowed us to provide capacity-strengthening interventions to the community-based organizations so that they are able to provide certain HIV services, expanding access to care within their own communities. 

Integrating Healthcare Services
Another important aspect of HIV care is integration of other healthcare services into HIV care clinics. Members of key populations have different healthcare needs, and those healthcare needs are often unmet.

For example, if you are serving transgender populations, gender-affirming care is a healthcare need. In Thailand, by integrating gender-affirming care and hormone treatment into the services provided within HIV care clinics, we have been able to increase HIV testing and PrEP uptake in transgender populations. We have been able to retain transgender women in the HIV prevention, care, and treatment cascade because we are not talking about HIV services alone—we are trying to address their health needs as a holistic and comprehensive healthcare service package.

My clinic, the Tangerine Clinic, is led by trained transgender staff, and we are providing integrated healthcare services, including gender-affirming care, hormone treatment, and even follow-up care after genital surgery. Our community-led healthcare staff provides services that our clients may not be able to access from other public healthcare settings.

Mental health services are another integrated healthcare service that my clinic provides. We have seen increasing mental healthcare needs among key populations, especially transgender populations—and especially during the COVID-19 pandemic. Many transgender people were unemployed because businesses were shut down. If they were a sex worker, all the entertainment venues were closed, and they lost their job. The impact on mental health has resulted in poor HIV outcomes. To address this, we have trained our transgender staff to be able to provide a peer-led depression screening service and intervention.

Call to Action for Healthcare Professionals
Members of key populations should not only be engaged or involved in HIV care settings, but they also should become leaders at the forefront of the HIV response to accelerate an end to the epidemic by providing integrated, people-centered HIV care within their own communities.

Your Thoughts?
How are community members leading HIV treatment and prevention care in your area? Join the discussion in the comments section.