Linkage to HIV care: Falling behind and getting ahead

Following an HIV diagnosis, linkage to care is essential to ensure that people have access to the HIV care and treatment they need to live a long and healthy life. Without timely linkage to care, people will miss the health benefits of starting treatment as early as possible. However, there are many barriers that may prevent people from successfully engaging in HIV care. Evidence-based programs and practices are needed to address these barriers and improve linkage to care for people with HIV. This article discusses why linkage to care is important and highlights evidence-based programs and practices that could help to address barriers and improve linkage to HIV care.

The importance of linkage to care

Linkage to care is important at both the individual level and the population level. For the individual living with HIV, being linked to an HIV care provider increases the likelihood that they will initiate HIV treatment and achieve an undetectable viral load. This is essential to optimize health outcomes,^1,2 to help people to lead long and healthy lives and prevent the passing of HIV onto their sex partners. Any delay in linkage to care can result in delayed treatment initiation, faster disease progression and increased mortality.³

At the population level, linkage to care helps to get more people who are diagnosed with HIV on treatment and maintaining an undetectable viral load. This is an important public health goal as it reduces HIV transmission within the community.¹ To support this public health goal, Canada has endorsed the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the World Health Organization (WHO) global health sector strategy on HIV to help eliminate HIV/AIDS as a public health threat by 2030. To achieve this, Canada committed to meeting three targets by 2020: diagnosing 90% of people living with HIV, getting 90% of people diagnosed with HIV on treatment and reaching 90% viral suppression among those on treatment.⁴ Canada has also committed to achieving 95% on each of these targets by 2025.⁵ Linkage to care supports attainment of the second target and is an important step in the HIV treatment cascade (also known as the continuum of care); measuring engagement in each step of the cascade is one way to determine how well the system is in engaging and keeping people in care and on successful treatment.

In 2020, an estimated 62,790 people were living with HIV in Canada:⁴

• 90% of people with HIV had been diagnosed with HIV (56,200 people)
• 87% of people diagnosed with HIV were on HIV treatment (48,660 people)
• 95% of people on treatment had achieved viral suppression (46,100 people)  

Canada has reached its first and third targets for 2020 but is falling short on the second target of ensuring that people diagnosed with HIV are on HIV treatment. Estimates show that over 7,500 people who have been diagnosed with HIV are not on HIV treatment.⁴ Linkage plays a vital role in achieving this second target, so Canada’s performance on this target can be used to measure linkage success. The data for the second target show that Canada has a ways to go to achieve both the individual and public health benefits of treatment because of low levels of linkage to care for people living with HIV.

Timing of linkage to care

Linkage to HIV care occurs when someone diagnosed with HIV has their first clinical HIV care appointment.⁶ The goal of linkage to care is successful initiation of HIV care. The International Advisory Panel on HIV Care Continuum Optimization recommends immediate referral to HIV care following an HIV-positive diagnosis to improve linkage to antiretroviral therapy (ART).’¹

Barriers to successful linkage to care

There are many barriers that prevent people from successfully linking to HIV care. These barriers can occur at both the individual level and the clinical or organizational level. It is important to acknowledge that many of the barriers that we might consider to be at the individual level are the result of broader social issues (e.g., racism, homophobia, sexism) and structures (e.g., colonialism, lack of social safety nets) that influence access to health care and result in social and health inequities, including lower rates of linkage to care.

Understanding the barriers to successful linkage to care can help service providers to develop programs and practices that better support people to link to and access timely HIV care.

Individual-level barriers

Research suggests that the following individual factors or characteristics are associated with a lower likelihood of linkage to care following an HIV diagnosis:

• Mental health: experiencing mental health issues^6,7,8
• Substance use: experiencing substance use disorder^7,8,9 and injection drug use^9,10
• Mode of transmission: acquiring HIV through injection drug use or through heterosexual sex¹¹
• Age: being younger at the time of HIV diagnosis^9,11
• Gender: being transgender,¹⁰ with transgender women having lower rates of linkage to care than transgender men⁶
• Sex work: being a cisgender woman who engages in sex work¹⁰
• Race/ethnicity: being an African, Caribbean or Black person^6,9
• Language: experiencing language barriers^6,7
• Education: having lower education levels¹¹
• Socioeconomic status: having lower socioeconomic status^6,7,8,9
• Transportation: lacking transportation⁷ or being unable to cover transportation costs to attend their appointment¹⁰
• Housing: experiencing housing insecurity or instability^6,12
• Stigma: experiencing social stigma or holding internalized stigma related to HIV¹³
• Health literacy: having lower levels of health literacy⁷
• Wellness at diagnosis: feeling well at HIV diagnosis¹¹
• Self-efficacy: perceiving that one has a poor ability to successfully perform tasks or behaviours related to healthcare (i.e., low self-efficacy)⁷

Interestingly, perceived barriers to HIV care may differ depending on who is asked. In a national survey in the United States in 2009, people with HIV reported different individual barriers to linkage to care than did healthcare providers. People with HIV were more likely to report psychosocial barriers (e.g., experiences of stigma and shame), while healthcare providers were more likely to report structural barriers (e.g., transportation issues, financial issues, substance use).⁶ Understanding these differences in perception may help service providers to better address the barriers that their clients are facing.

Clinical- and organizational-level barriers

Research suggests that the following clinical and organizational factors are associated with a lower likelihood of linkage to care after an HIV diagnosis:

• Availability of care: limited or lack of availability of specialized HIV care in the community¹³ and lack of access to primary care before diagnosis⁶
• Location: services that are inconveniently located⁶
• Location of diagnosis: being diagnosed outside of an sexually transmitted infection (STI) clinic¹¹ or in a facility that is not co-located with HIV treatment and primary care services⁸
• Provider knowledge: lack of service provider knowledge of the referral process⁸
• Stigma: concerns about stigma in the care environment^7,10
• Wait times: long wait times for first HIV clinical appointments⁶
• Health system communication: lack of communication between testing sites and clinics⁸

Practices and programs that can support successful linkage to care

Practices and programs that successfully link people to care are responsive to the needs of the people that they serve. Linkage to care is a process that involves working with an individual to evaluate their barriers to care and providing the supports they need to engage in care. This can include helping people to navigate complex health systems and/or connecting them to health and social services (e.g., housing services, social supports) that help them to successfully link to care.

Organizations should also work to try to address clinical and organizational barriers to care within their community (e.g., location of service provision, linkage policies). This can help to alleviate barriers to care and promote care engagement for all clients.

Recommended linkage to care practices

The practices below can be adapted to different contexts and combined to address barriers to linkage. While these individual practices can stand alone, they can also be combined to create comprehensive linkage to care programs that can address complex barriers.

Immediately referring clients to an HIV care provider and offering rapid HIV treatment initiation following a positive diagnosis have been found to increase linkage to care.^1,6,7,10,14 This means linking to an HIV care provider who can fully inform people of the benefits of treatment and start their HIV treatment immediately, including a same-day start.¹⁴

Providing active or warm referrals that connect people to services in a way that incorporates more involvement from the referring service provider. This can include making an appointment for someone, accompanying a client to an appointment with an HIV service provider, and following up with the provider or client to ensure that linkage has occurred. Active referrals have been found to increase rates of linkage compared with passive referral practices.⁷

Making appointments as soon as possible with HIV care providers⁷ and working to shorten wait times for initial clinical appointments (e.g., within five days to decrease no-show rates)⁶ can improve linkage.

Establishing partnerships and referral pathways with health services within the community (e.g., public health, HIV clinical health care providers)¹² is an important way to create successful pathways to HIV care. Organizations should have standard referral procedures and involve providers in the development of procedures.⁷ Partnerships and/or referral pathways with other community agencies (e.g., housing services, harm reduction services, social support services) may also play an important role in supporting people to link to HIV care. It is essential to define the referral and linkage procedures of each of the organizations, both clinical and nonclinical, involved in the process of supporting people to link to care, as is training staff on linkage policies and procedures.

Providing transportation support to people to attend their first clinic visit increases linkage to care.¹

Employing personnel who specifically focus on linkage such as peer workers, navigators and case or linkage workers ^{1,6,7,14,15,16} can increase linkage to care. Evidence indicates that hiring people from within the community (a peer), such as people from similar cultural or linguistic backgrounds, increases linkage to care.⁷

Offering post-test counselling after an HIV diagnosis can help to improve linkage to care.¹ Post-test counselling involves providing clear and simple information that is tailored to the individual and the situation and addresses the health and prevention benefits of HIV treatment.¹⁴

Using strength-based case management, which involves asking people to identify their strengths and skills to get the resources that they need,⁶ has been shown to be effective in helping people to link to care.^2,6,7,17 A strengths-based case management approach can be used with different support workers (e.g., peers, social workers), with the goal of empowering people and increasing their self-efficacy to reach their goals, including linkage to care.⁷

Co-locating services has been shown to increase linkage to care. This includes co-location of clinical and social services,⁷ co-location of HIV testing and clinical services^1,8 and co-location of HIV and non-HIV medical services (e.g., primary care).¹⁸

Integrating HIV care into other health services that key populations are already accessing (e.g., harm reduction services) increases linkage to care.^,7,10

Monitoring to ensure successful entry into HIV care is also a recommended practice.^1,2 Health services within the community (e.g., testing services, public health, HIV clinical health care providers) all have responsibilities in monitoring entry to care and these responsibilities should be determined at the local level. In cases where someone has not linked to care, a process for re-establishing connection with that person, such as intensive outreach (e.g., health system navigation, reminders)^1,2,17 is recommended. Determining which service provider will be responsible for monitoring and follow-up is essential to ensuring that people are not lost to care.

Recommended linkage to care programs

Below are examples of programs that can be used to facilitate linkage to care. These programs draw on the practices described above, with many utilizing several of the approaches.

Anti-Retroviral Treatment and Access to Services (ARTAS) is a multi-session, time-limited program designed to link recently diagnosed people to HIV care. The ARTAS intervention uses strengths-based case management, provided by a professional case manager, to link people newly diagnosed with HIV to an HIV clinician. The intervention provides time-limited assistance and includes five case management sessions over 90 days or until a client is linked to care. The approach includes the case manager building an effective working relationship with clients, identifying client strengths, meeting clients at a location where they feel comfortable, coordinating and linking clients to community resources and advocating on clients’ behalf for medical care and other services.^6,19,20 The Centers for Disease Control and Prevention recommends ARTAS as an evidence-based practice for linkage to care.¹⁹

Health navigation is a person-centred approach to guide, connect, refer, educate and accompany people with HIV through systems of care. The goals of health navigation are to support people with HIV in their self-determined goals; build the capacity of clients to self-manage their HIV care and navigate systems themselves; and, ultimately, improve their HIV health and overall wellness.²¹ Health navigation involves pairing a client with a navigator who supports and guides them through the healthcare system, including linkage to care. Health navigation can be provided by peers (i.e., those with lived experience and an intimate understanding of the circumstances in which many clients live their lives) or other health professionals (e.g., social workers, nurses, other allied healthcare workers). Navigators work with individual clients to identify and reduce potential barriers to accessing quality, timely care. Specific activities can include accompanying clients to appointments, creating care plans, connecting clients to medical and social services and providing psychosocial support. Whether they are professionals or peers, navigators must have the appropriate cultural knowledge and language skills to work with clients and build trust with them.²² The WHO recommends peer support and navigation approaches for linkage to care.¹⁴

Partner notification and testing services can support people newly diagnosed with HIV to notify their partners and connect their partners to HIV testing and link them to care if needed.⁶ This can include short-term case management and partner-based counselling that can facilitate disclosure and work to help link both partners to care.¹ These types of services have been shown to improve linkage to care.^1,6

What does this mean for linkage to care programs and services?

Following a positive HIV diagnosis, people should be linked to care immediately. To accomplish this, a combination of effective practices and programs should be considered and be part of the process of linkage, which should be tailored to the individual.

Attention should be paid to the local context in which programs are delivered and the needs of individual clients when developing linkage programs. Service providers should work to understand the local linkage context in the communities that they serve (e.g., availability and location of services) and the specific barriers that the populations that they serve are experiencing. Addressing the barriers to linkage to care can sometimes mean working to understand and address the person’s broader health and social needs (e.g., housing, transportation, income support, stigma) that can hinder their ability to link to care. It can also mean assessing an organization’s policies and procedures around linkage to create pathways to care. It is also important to understand which populations are not being linked to care and how intersecting identities and structures impact linkage. This can help to create programs that are more responsive to people’s needs, including the need for culturally relevant and safe program approaches.

The practices and programs discussed here can help to strengthen linkage and ensure that more people living with HIV are engaged in care and treatment. Overall, research shows that more one-to-one or intensive interventions generally lead to better linkage to care than passive referrals to an HIV clinician, as do interventions that build on the strength of the individual. Approaches can be informed by learning from successful models already in use in comparable contexts (practice-based evidence) and from research that has evaluated linkage to care programs and practices (research-based evidence), and by working with the community to develop novel and innovative programs and practices that meet their needs.

Improving linkage to care requires considering the legal, social, environmental and structural barriers that exist for people with HIV. While service providers can improve individual and organization-wide approaches to linkage, addressing structural barriers requires a concerted effort by health and social systems, including stakeholder engagement and innovative approaches.¹

References

1. International Advisory Panel on HIV Care Continuum Optimization. IAPAC guidelines for optimizing the HIV continuum for adults and adolescents. Journal of the International Association of Providers of AIDS Care. 2015;14 Suppl 1:S3-S34.
2. Thompson MA, Mugavero MJ, Amico R et al. Guidelines for improving entry into and retention in care and antiretroviral adherence for persons with HIV: evidence-based recommendations from an International Association of Physicians in AIDS Care panel. Annals of Internal Medicine. 2012;156:817-33.
3. Croxford S, Yin Z, Burns F et al. Linkage to HIV care following diagnosis in the WHO European Region: a systematic review and meta-analysis, 2006-2017. PLOS One. 2018 Feb 16;13(2):e0192403.
4. Government of Canada. Summary: Estimates of HIV incidence, prevalence and Canada’s progress on meeting the 90-90-90 HIV targets, 2020. Ottawa: Public Health Agency of Canada; 2022. Available from: https://www.canada.ca/en/public-health/services/publications/diseases-conditions/estimates-hiv-incidence-prevalence-canada-meeting-90-90-90-targets-2020.html  
5. Government of Canada. Canada takes action by endorsing global declaration on Undetectable = Untransmittable (U=U). 2022. Available from: https://www.canada.ca/en/public-health/news/2022/07/canada-takes-action-by-endorsing-global-declaration-on-undetectable--untransmittable-uu.html
6. National HIV Curriculum. Linkage to HIV care. Last updated 2023 Oct. Last accessed 2023 Dec. Available from: https://www.hiv.uw.edu/go/screening-diagnosis/linkage-care/core-concept/all
7. Carter MW, Wu H, Cohen S et al. Linkage and referral to HIV and other medical and social services: a focused literature review for sexually transmitted disease prevention and control programs. Sexually Transmitted Diseases. 2016;43(1):s76-s82.
8. Levison JH, Del Cueto P, Mendoza JV et al. Systematic review and meta‑analysis of linkage to HIV care interventions in the United States, Canada, and Ukraine (2010–2021). AIDS and Behavior. 2023;July 31.
9. Perelman J, Rosado R, Ferro A et al. Linkage to HIV care and its determinants in the late HAART era: a systematic review and meta-analysis. AIDS Care. 2018;30(6):672-87.
10. Bunda BA, Bassett IV. Reaching the second 90: the strategies for linkage to care and antiretroviral therapy initiation. Current Opinions in HIV and AIDS. 2019;14(6):494-502.
11. Croxford S, Yin Z, Burns F et al. Linkage to HIV care following diagnosis in the WHO European Region: a systematic review and meta-analysis, 2006-2017. PLOS One. 2018 Feb 16;13(2):e0192403.
12. Bauermeister JA, Bonnet S, Rosengren AL et al. Approaches to promoting linkage to and retention in HIV care in the United States: a scoping review. Current HIV/AIDS Reports. 2021;18:339-50
13. Bouabida K, Chaves BG, Anane E. Challenges and barriers to HIV care engagement and care cascade: viewpoint. Frontier of Reproductive Health. 2023;5:1201087.
14. World Health Organization. Consolidated guidelines on HIV prevention, testing, treatment, service delivery and monitoring: recommendations for a public health approach. Geneva: World Health Organization; 2021. Available from: https://www.who.int/publications/i/item/9789240031593
15. World Health Organization. Consolidated guidelines on the use of antiretroviral drugs for treating and prevention HIV infection: what’s new. Geneva: World Health Organization; 2016 Nov. Available from: http://www.who.int/hiv/pub/arv/arv-2016/en/
16. Dave A, Peter T, Fogarty C et al. Which community-based HIV initiatives are effective in achieving UNAIDS 90-90-90 targets? A systematic review and meta-analysis of evidence (2007-2018). PLoS ONE. 2019;14(7): e0219826.
17. Okeke NL, Ostermann J, Thielman NM. Enhancing linkage and retention in HIV care: a review of interventions for highly resourced and resource-poor settings. Current HIV/AIDS Reports. 2014;11:376-92.
18. Mizuno Y, Higa DH, Leighton CA et al. Is co-location of services with HIV care associated with improved HIV care outcomes? A systematic review. AIDS Care. 2019;31(11):1323-31.
19. Centers for Disease Control and Prevention. Compendium of evidence-based interventions and best practices for HIV prevention. ARTAS (Antiretroviral Treatment Access Study). Last updated 2018 Sept. 27. Atlanta (GA): Centers for Disease Control and Prevention; 2018.  Available from: https://www.cdc.gov/hiv/pdf/research/interventionresearch/compendium/lrc/cdc-hiv-lrc-artas.pdf
20. Higa DH, Crepaz N, Mullins MM et al. Identifying best practices for increasing linkage to, retention and re-engagement in HIV medical care: findings from a systematic review, 1996–2014. AIDS Behaviour. 2015 May;20(5):951-66.
21. CATIE. Practice guidelines in peer health navigation for people living with HIV. Toronto: CATIE; 2018. Available from: http://www.catie.ca/sites/default/files/practice-guidelines-peer-nav-en-02082018.pdf
22. Paskett ED, Harrop JP, Wells KJ. Patient navigation: an update on the state of the science. CA: A Cancer Journal for Clinicians. 2011 Jul;61(4):237-49.

Externally reviewed by: Brittany Read

Production of this resource has been made possible through a financial contribution from Gilead Sciences Canada, Inc. The views expressed herein do not necessarily represent the views of Gilead Sciences Canada, Inc.

 

About the author(s)

Amanda Giacomazzo is CATIE’s manager of community programming. She has a master’s degree in health science with specialised training in health services and policy research and previously worked in knowledge translation and public health at the provincial level.