Treatment barriers and best practices for newcomers living with HIV/HCV

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Question

What barriers do newcomers living with HIV and/or hepatitis C in Canada face accessing treatment services and what are the best practices to overcome those barriers?

Key Take-Home Messages

• Minority groups, including newcomers, are disproportionately affected by HIV and hepatitis C (HCV) due to social and economic factors that increase their vulnerability to infection (1;2).
• Newcomers living with HIV or HCV not only face barriers to treatment, they also face unique challenges which may include language barriers, lack of social support, stigma and systemic barriers such as lack of health care coverage (1;3-10).
• Despite facing many barriers to care, newcomers may experience better treatment outcomes than their Canadian-born counterparts (3-5;7;9).
• Practice guidelines are recommended to improve treatment access for newcomers living with HIV or HCV (10-12).

The Issue and Why It’s Important

In 2011, newcomers (people born outside Canada) represented 21% of Canada’s total population (13). Between 2006 and 2011, over one million foreign-born people immigrated to Canada. They made up 17% of Canada’s foreign-born population and 4% of the total population (13).

Although HIV and HCV prevalence is quite low in developed countries, minority groups, including racial minorities and newcomers are greatly affected (1). Newcomers to Canada are also disproportionately affected by socioeconomic factors that increase their vulnerability (1;2) to HIV and HCV infection and act as barriers to prevention, screening and treatment (2).

In 2002, Canada’s Immigration and Refugee Protection Act was introduced to screen incoming immigrants and refugees for HIV (14). HIV screening has resulted in more accurate estimates of HIV prevalence among newcomers to Canada. It has also resulted in an increase in the number of newcomers who know their HIV status upon arrival in Canada. It is therefore important to explore HIV care services for these individuals (5;14).

What We Found

What are the barriers to HIV and HCV treatment access for newcomers?

Newcomers living with HIV or HCV may experience multiple barriers that can delay access to treatment. In addition to facing stigma and systemic barriers to health care and treatment, newcomers to Canada also face unique challenges that include language barriers, lost social support networks and lack of health insurance coverage. While the barriers below are listed as separate items, these barriers do not act alone; they intersect to affect access to HIV and HCV care and treatment for newcomers.

Individual-level barriers

Individual-level barriers to accessing care and treatment may include traits such as personality, age, education level, health beliefs and cultural beliefs (1). An individual’s experience with their originating country’s health care system may also influence expectations and interactions with the current health care system.

Mental health status may influence health care and treatment of HIV and HCV. HIV-positive immigrants may be at greater risk of developing depression and other mental health conditions due to HIV-related stressors, and unique newcomer challenges which may include racial, language and citizenship barriers (1;15).

Care-provider barriers

Barriers at the provider level are related to clinical skills and knowledge, HIV and HCV treatment experience, communication skills, and clinician understanding of the influence of culture in a client’s perception of health and disease (1).

Another barrier at this level is missed opportunities for HCV screening. All newcomers are required to be tested for HIV under the Immigration and Refugee Protection Act, but that is not the case for HCV. Although the Canadian Centre for Disease Control and Prevention recommends that all patients be evaluated for HCV risk factors, primary care settings do not universally provide this service (1;3). Benefits of early HCV diagnosis include less risk of transmitting the virus, reduced rate of liver decline and opportunities for patients to engage in treatment while they are better able to tolerate side effects (1).

Language barriers

Language may act as a barrier to accessing care and treatment (11) and can have negative effects on service provision by clinicians, client understanding of clinicians, prescription instructions and telephone communications (16). Some clients may experience difficulties communicating with health care personnel because of accents, terminology used to describe the body and illness, and mannerisms (17).

However a study of foreign-born HIV-positive patients by Krentz and Gill (4) found that language was not a barrier that affected health care utilization in a majority of patients after initial contact had been established and follow-up supported. Other studies among HCV-positive clients demonstrated the same findings for HCV treatment (3;7;9).

Loss of social support and stigma as barriers

Social support is integral to health, particularly for newcomers (5). The loss of social support may be a barrier for newcomers, as these individuals are often separated from family and their communities, which may mean their emotional well-being and mental health deteriorates (11).

Stigma from one’s ethnic community may also be a barrier to accessing services (8;18-20). A Toronto-based study (18) of HIV service providers in the African, Caribbean and Black community felt that many community members had negative connotations of HIV, and there was stigma toward individuals who were thought to be living with HIV. A study (19) among Toronto-based agencies that provide HIV services to South Asian immigrants found that unwillingness of those living with HIV to disclose their status to other community members prevented timely access to counselling and other kinds of services and support.

Cultural and gender-based disparities in access to health care experienced by newcomers are well documented (7;10). Cultural norms may define the roles, duties, rights, responsibilities, accepted behaviours and opportunities of men and women in social interactions (10). Gender dynamics can also create imbalances between men and women and may impact a women’s ability to access treatment and care. For men, gender norms such as masculinity may prevent them from seeking health services for fear of being portrayed as weak (10). In some newcomer communities, sex, sexuality, and physical and psychological health are not discussed in the family or community, preventing access to information about HIV and discouraging access to care and treatment (8).

Systemic barriers

Newcomers may also face systemic barriers to accessing services. For example, the geographic location of AIDS service organization may make it difficult for people to access their services. A study by Kaukinen and Fulcher (6) found that, in Toronto, there was significant overlap in the location of HIV service providers and the clustering of neighbourhood-level demographic and socioeconomic factors. For instance, neighbourhoods with fewer service providers overlapped with clusters of neighbourhoods that had higher levels of disadvantage and immigration as well as a larger proportion of black Canadians, while HIV services were concentrated in neighbourhoods in the downtown core (6). Another study of HIV service providers for Toronto-based African, Caribbean and Black community members, also found poor geographical distribution of services to those in need, resulting in underutilization of services (18).

Because Canada has universal health care, there should, theoretically, be no disparities in access to primary care. For newcomers who have health care coverage, the likelihood of visiting a physician is strongly related to health care needs and the presence of chronic condition, rather than socioeconomic or education status (7). However, despite having health coverage, racial and ethnic minorities have more difficulties accessing care than Caucasians (7). Many still struggle with the complexity, cost, paperwork and unclear eligibility guidelines between provincial and federal health care coverage (16).

Moreover, not all newcomers have health coverage. In 2012, the Canadian government reformed the Interim Federal Health program, eliminating universal health coverage for refugees from Designated Countries of Origin and rejected refugee claimants who had exhausted the appeal and judicial review process (21).

In Ontario, newcomers who have health insurance can access programs that pay for HIV and HCV treatments, such the Ontario Drug Benefit (ODB) Program, the Trillium program and the Exceptional Access Program (EAP), however, medication costs are an issue for those who are uninsured. A study by Bunn et al. (12) conducted at St. Michael’s Hospital in Toronto compared medically uninsured patients to medically insured patients covered through the Ontario Health Insurance Program (OHIP). Researchers found that: HIV prevalence was significantly greater in the uninsured group (24%) than in the insured group (4%) (12). The main reasons people lacked insurance were that: they were landed immigrants in the health insurance waiting period (27%) or they did not have permanent residence in Canada (22%). Given high rates of HIV in the uninsured, the authors suggest providing free HIV treatment to those who are HIV-positive, regardless of their immigration status — both to improve their health and to reduce the risk of transmission.

Treatment outcomes

Despite the barriers that newcomers may face accessing services, the literature suggests that newcomers are not necessarily worse off than people with HIV or HCV who are Canadian born. In a study of 910 people living with HCV conducted at the Ottawa Hospital — 20% of whom were immigrants – there was no difference in HCV treatment initiation rates and other HCV prognosis markers between newcomer and Canadian-born patients (9). Moreover, spoken language and race did not influence access to treatment (3;7;9). The only difference was that Black patients had lower treatment initiation rates (29%) than white patients (38%) but this trend was not significant (7).

In a cohort of HIV-positive newcomer sand Canadian born patients, both groups had similar treatment outcomes — despite the fact that newcomers needed more clinical visits to manage disease progression (5). Another study (20) found that recent immigrants with HIV had better clinical outcomes, specifically mortality, than Canadian-born individuals and individuals who had lived in Canada for more than 10 years before their first HIV clinic visit. Another study (4) found no significant differences in cost when comparing foreign-born and Canadian-born people living with HIV who were engaged in regular HIV treatment and care.

Recommended best practice guidelines

According to the literature, the following are recommended best practices to reduce treatment barriers for newcomers living with HIV and HCV.

• Eliminate biases and discriminatory practices in health care settings (10) by ensuring staff are qualified and trained to provide culturally competent care that bridges the cultural divide that may exist between newcomer clients and providers (16).
• Eliminate language barriers to care and treatment by employing trained and qualified interpreters in care settings.
• Train clinical staff to evaluate all incoming patients for HCV risk and to provide HCV screening, care and treatment.
• Assist in the coordination of legal, social and employment support services for newcomers. Newcomers who understand their rights and are able to access basic necessities such as housing, employment, and health and drug insurance coverage will be in a better position access HIV and HCV care and treatment.
• Develop programs to overcome gender-based barriers that make newcomer women more susceptible to discriminatory and stigmatizing practices in the community and in health care settings (10).
• Given the prevalence of HIV among newcomers, particularly among those who are uninsured (12), advocate for all newcomers, regardless of insurance status, to receive free HIV treatment to protect their health, as well as public health (12).

Factors That May Affect Local Applicability

Only a few studies in this review exclusively focused on newcomers and access to HIV or HCV treatment. Instead, many studies discussed vulnerabilities to and perceptions of HIV or HCV in newcomer and immigrant communities. Other studies more broadly focused on newcomers and barriers to health care in general, or compared treatment outcomes between newcomers and Canadian-born people living with HIV or HCV.

What We Did

We searched Medline for articles using a combination of text terms [(HIV) OR (HCV)] AND [(migrant*) OR (immigrant*) OR (newcomer*) OR (immigration) OR (migration) OR (refugee)] AND [(Toronto) OR (Canad*) OR (Ontario) OR (Vancouver) OR (British Colombia) OR (Quebec) OR (Montreal)]. All searches were limited to articles published since 2004 in English.

Reference list

1. Giordano C, Cooper C. The influ-ence of race and language on chronic hepatitis C virus infection management. European Journal of Gastroenterology & Hepatology 2009;21(2):131-6.
2. Public Health Agency of Canada. HIV/AIDS Epi Updates: HIV/AIDS in Canada among people from coun-tries where HIV is endemic. Centre for Communicable Diseases and Infection Control, Public Health Agency of Canada; 2012.
3. Pottie, K. Hepatitis C and Migrants (presentation). Ottawa, Ontario: Bruyere Research Institute. 2013.
4. Krentz HB, Gill MJ. Comparison of healthcare costs between local and immigrant HIV populations living in Southern Alberta, Canada. Health Policy 2011;103(2-3):124-9.
5. Krentz H, Gill MJ. The five-year impact of an evolving global epi-demic, changing migration pat-terns, and policy changes in a re-gional Canadian HIV population. Health Policy 2009 May;90(2-3):296-302.
6. Kaukinen C, Fulcher C. Mapping the social demography and location of HIV services across Toronto neighbourhoods. Health & Social Care in the Community 2006;14(1):37-48.
7. Giordano C, Druyts EF, Garber G, Cooper C. Evaluation of immigra-tion status, race and language barriers on chronic hepatitis C virus infection management and treat-ment outcomes. European Journal of Gastroenterology & Hepatology 2009;21(9):963-8.
8. Gardezi F, Calzavara L, Husbands W, Tharao W, Lawson E, Myers T et al. Experiences of and responses to HIV among African and Caribbean communities in Toronto, Canada. AIDS Care 2008;20(6):718-25.
9. Cooper CL, Giordano C, Mackie D, Mills EJ. Equitable access to HCV care in HIV-HCV co-infection can be achieved despite barriers to health care provision. Journal of Thera-peutics and Clinical Risk Manage-ment 2010;6:207-12.
10. Canadian Treatment Action Council (CTAC). Tools for overcoming treat-ment access barriers facing new-comers living with HIV and viral hepatitis co-infection in Canada: Workshop Curriculum for Newcom-ers. 2013.
11. Chulach T, Gagnon M. Rethinking the experience of HIV-positive refu-gee women in the context of preg-nancy: Using an intersectional approach in nursing. Research & Theory for Nursing Practice 2013;27(4):240-56.
12. Bunn S, Fleming P, Rzeznikiewiz D, Leung FH. Understanding the de-mographic characteristics and health of medically uninsured pa-tients. Canadian Family Physician 2013;59(6):e276-e281.
13. Chui T. Immigration and Ethnocul-tural Diversity in Canada. 2014. Statistics Canada – Government of Canada.
14. Worthington C, Este D, Strain KL, Huffey N. African immigrant views of HIV service needs: Gendered perspectives. AIDS Care 2013;25(1):103-8.
15. Noh MS, Rueda S, Bekele T, Fenta H, Gardner S, Hamilton H et al. Depressive symptoms, stress and resources among adult immigrants living with HIV. Journal of Immi-grant & Minority Health 2012;14(3):405-12.
16. McKeary M, Newbold B. Barriers to care: The challenges for Canadian refugees and their health care providers. Journal of Refugee Stud-ies 2010;23(4):523-45.
17. Public Health Agency of Canada. Population Specific HIV/AIDS Re-port: People from Countries where HIV is Endemic – Black people of African and Caribbean descent living in Canada. 2009.
18. Amibor P, Ogunrotifa AB. Unravel-ling barriers to accessing HIV pre-vention services experienced by African and Caribbean communi-ties in Canada: Lessons from To-ronto. Global Journal of Health Science 2012;4(3):1-12.
19. Vlassoff C, Ali F. HIV-related stigma among South Asians in Toronto. Ethnicity & Health 2011;16(1):25-42.
20. Raboud J, Blitz S, Antoniou T, Loutfy M, Walmsley S. Recent immi-grants show improved clinical out-comes at a tertiary care HIV clinic. Canadian Journal of Infectious Diseases & Medical Microbiology 2012;23(1):9-14.
21. Marwah, S. Refugee Health Care Cuts In Canada – System Level Costs, Risks and Responses. Toron-to, Ontario: The Wellesley Institute; 2014.

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