The following is a translated article from Brazil’s AIDS News Agency. Click here for the original article.
The project is the result of a partnership between the AIDS Healthcare Foundation (AHF) and the Emílio Ribas Hospital.
Adherence to antiretroviral treatment continues to be one of the biggest challenges in dealing with HIV/AIDS. To overcome this difficulty, a project has proved essential in welcoming and retaining patients treated at the Emílio Ribas Infectious Diseases Institute.
AHF is currently developing an intervention and research project at the Emílio Outpatient Clinic aimed at monitoring patients who interrupt their treatment. Entitled “Linkage and Retention of People Living with HIV and AIDS Project: a Demonstration Project in the City of São Paulo,” the initiative seeks to strengthen the bond with these people and facilitate their return to medical care.
The partnership between AHF and the hospital has had a positive impact, ensuring continuous support for those who need it. The results are significant: an internal survey shows that 77% of people living with HIV/AIDS who had interrupted treatment at the Emílio Ribas Outpatient Clinic between May 2023 and January 2025 have resumed medical follow-up, thanks to the approach and awareness-raising promoted by AHF.
In an interview with Agência Aids, the project’s coordinator, Márcia de Lima, highlights how strategic actions and continuous monitoring have been crucial to the initiative’s success. According to her, the partnership between the institutions was born with the aim of improving the follow-up of patients newly diagnosed with HIV, guaranteeing effective support from the start of treatment.
“AHF’s mission is to guarantee innovative treatment and advocacy actions for all people, regardless of their financial situation. We are aligned with the Unaids guidelines to eradicate HIV/AIDS by 2030. We operate in 47 countries and care for more than 2,200,000 people living with HIV/AIDS. We also work to formulate public policies for the prevention and early diagnosis of HIV and the treatment of STIs.”
“AHF began its activities in Brazil in 2013. In 2016, it signed a partnership with the Faculty of Medicine of the University of São Paulo (FMUSP), the STD/AIDS Reference and Training Center-SP (CRT-DST/AIDS) and the STI/AIDS Coordination of the City of São Paulo. Since 2017, this partnership has implemented an intervention and research project called ‘Linkage and Retention of People with HIV in Public Health Services: a demonstration project in the city of São Paulo, Brazil’ in 10 specialized units, including the Emílio Ribas Institute of Infectious Diseases (IIER), implemented in May 2023. The project aims to link newly diagnosed patients to treatment and to reintegrate people who have interrupted clinical care (who have lost follow-up),” she says.
Welcoming strategies
Given that 77% of patients at the Emílio Ribas Hospital Outpatient Clinic who stopped treatment between May 2023 and January 2025 returned after the AHF’s work, the coordinator shares which specific strategies were essential and effective for this resumption of adherence.
“Our work is based on three essential pillars: availability (team that sees the patient without prior appointment); timeliness (immediate reception for the patient who spontaneously returns to the health unit to resume treatment); resoluteness (offer of procedures, care, ARV dispensing and referrals according to the demands and needs to be pointed out by the patient). Given this, we have adopted some fundamental strategies: constant monitoring of cases (prevention of abandonment), identification of loss to follow-up and active search to approach and sensitize patients about returning to follow-up,” she explains.
Also, according to Márcia de Lima, the biggest challenge in the quest for adherence is to guarantee a quality welcome within what is understood as humanized care. “Through welcoming and qualified listening, we seek to build bonds and promote the development of self-care and autonomy, ensuring that adherence to treatment is consistent and longitudinal, without depending exclusively on the team.”
Challenges and inequalities
In addition to the progress made, it is essential to discuss the challenges in retaining people living with HIV in treatment and clinical follow-up, especially in a city like São Paulo – a rich metropolis, but marked by profound inequalities. Márcia emphasizes that this scenario requires a careful look and strategies adapted to different realities.
“The retention of people living with HIV involves multiple contexts, individual and collective situations. The data collected in the project highlights factors related to mental health issues, abuse of psychoactive substances, an unfavorable family environment, non-acceptance of the diagnosis, misinformation about HIV, difficulties with adherence to antiretroviral therapy, prejudice and discrimination, stigma in everyday environments, economic difficulties. And especially in the context of São Paulo, many face challenges in accessing the service (distance, limited public transport, violence),” he says.
When discussing the predominant profile of patients monitored by AHF who discontinue antiretroviral treatment, Márcia shares some data. Among the patients who lose their follow-up, the following stand out: self-declared cisgender men (61%), heterosexual people (65%), white race/color (57%), with complete high school education (36%) and aged over 49 (38%).
Mother-to-child transmission A particular feature of the Emílio Ribas outpatient clinic, according to the coordinator, is the large number of patients with vertical transmission, which represents approximately 17% of the cases monitored by the team.“These cases face great difficulty in accepting the diagnosis, so this reason for stopping treatment stands out, thus posing a major challenge in the work of adherence,” she points out.
“In addition, many patients have mental health problems, whether or not associated with the abuse of psychoactive substances, which require networking and public policies based on psychosocial rehabilitation, and therefore beyond the scope of HIV care,” he continues.
Faced with the multiple factors that lead to treatment abandonment – such as food insecurity, stigma and prejudice, problems with alcohol and other drugs, and family conflicts, among others – the retention initiative also seeks to meet these demands, broadening the view of patients’ social and health needs.
“With regard to stigma and prejudice, our strategy has been to promote information and health education.
For example, we make ourselves available to guide service users, their partners and family members,” explains Márcia. She adds that, “to deal with the multiplicity of factors that go beyond diagnosis, the team is based on intersectoral network care. Cases identified as being related to mental health, whether due to substance abuse and/or serious and persistent mental disorders, are guided and referred to the Psychosocial Care Network (RAPS in Portuguese) reference services”.
The coordinator points out that situations of extreme social vulnerability, food insecurity and the homeless pose even greater challenges, requiring coordination with SUAS and other SUS facilities, such as the Street Clinic. “However, we still lack effective public policies to reduce social inequalities, which could effectively transform the reality of these people. Sometimes, during the patient’s return visit, we manage to advise them about free public transportation in the city of São Paulo,” she says.
Márcia recalls cases that marked the team out for their clinical and social complexity. “We have seen several cases that have surprised us, especially because of their clinical and social complexities, requiring management that goes beyond health, but a broader approach. For example, the cases of Vertical Transmission that come to our service often have multiple co-infections, such as tuberculosis, neuro-infections and even carcinomas. In addition, there are social and subjective issues related to the diagnosis of HIV, making care even more challenging.”
Another group that requires attention is pregnant women. “Another group that draws the team’s attention is pregnant women, who often face prenatal care alone, with little support network. Sometimes these women belong to the Vertical Transmission group and are already monitored by the team due to a history of multiple losses to follow-up, thus requiring even closer care,” she points out.
Finally, Márcia emphasizes the diversity of the patients being monitored and the seriousness of the condition of many who return to treatment. “It’s estimated that around 30% of the patients who were lost to follow-up who returned had CD4 below 350 cells/mm³, and were therefore in AIDS,” she concludes.
