Deportation fears, uncertainty over health insurance and stigma are barriers to accessing HIV services for undocumented African migrants in the US

Qualitative research carried out with undocumented African migrants in New York City revealed that fears of discovery and deportation presented a substantial barrier to seeking out HIV testing services and treatment after diagnosis. Migrants also expressed uncertainty regarding how to go about obtaining health insurance and thought they were not eligible to access health services.

Additionally, stigma from within African migrant communities acted as a barrier to testing, status disclosure and seeking out services. In contrast, health and social service providers played a positive role in facilitating access to services after diagnosis. This research was carried out by Dr Jonathan Ross and colleagues at the Montefiore Medical Center/Albert Einstein College of Medicine in New York and published in the July issue of AIDS Patient Care and STDs.

Immigration from sub-Saharan Africa to the US has more than doubled in recent years. Migrants from this region are disproportionately affected by HIV, with diagnosis rates between three to six times that of the general US population. In New York City African immigrants account for 15% of new HIV diagnoses for people born outside of the US but only make up four percent of the foreign-born population.

Glossary

linkage to care

Refers to an individual’s entry into specialist HIV care after being diagnosed with HIV. 

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

inter-quartile range

The spread of values, from the smallest to the largest. The inter-quartile range (IQR) only includes the middle 50% of values and measures the degree of spread of the most common values.

anxiety

A feeling of unease, such as worry or fear, which can be mild or severe.

exclusion criteria

Defines who cannot take part in a research study. Eligibility criteria may include disease type and stage, other medical conditions, previous treatment history, age, and gender. For example, many trials exclude women who are pregnant, to avoid any possible danger to a baby, or people who are taking a drug that might interact with the treatment being studied.

African immigrants are less likely to seek out testing services and more likely to initiate care later than other immigrants or nonimmigrants in the US. In the context of more restrictive recent US immigration policies, and the potential for increased marginalisation, this study aimed to better understand the factors specifically affecting undocumented migrants related to HIV testing and linkage to care.

The study

Participants were adults, born in Africa, living with HIV and reporting undocumented immigration status when first diagnosed or when first linked to care in the US. They were recruited through a community-based organisation offering services to immigrant populations.

Individual, semi-structured interviews were conducted with 14 participants in 2017. Nine participants were women, with a median age of 44 (IQR 42-50). Most participants had been diagnosed in the 1990s or 2000s, with only three receiving more recent diagnoses. Median time since diagnosis was 16 years (IQR 12-18). Length of time living in the US varied from one month to 20 years, but most (eleven) had been diagnosed while in the US, with median time since immigration being 14 years (IQR 1-20). They came from nine different African countries. All participants were receiving HIV care at the time of the interview.

Analysis of the interview responses revealed four main themes regarding accessing HIV testing services and linking to care after diagnosis: 

Concerns about undocumented immigration status

One of the main barriers to not getting tested, or seeking out subsequent care, was related to their immigration status. They expressed fear that seeking out testing or treatment services for HIV would place them at risk for deportation. Participants made reference to the US travel ban that had been place for people living with HIV from 1989 to 2010 as they felt that if they tested positive during this time, it would have placed them in an even more precarious position.

Participants also expressed uncertainty regarding eligibility for health services based on their immigration status and some spoke about the challenges of navigating an unfamiliar health system while coping with ill health.

“If I go in and get tested and if they find out that I am positive, then next thing, they’re just going to ship me out. They’re going to just send me back home to die.” 44-year-old Tanzanian woman recalling thoughts before diagnosis.

 “So, finally I am not only an illegal immigrant… but I’m also sick. So, if there was not someone to help me get the papers and then treat me, frankly, it was going to be difficult.” 58-year-old Congolese man.

Difficulties obtaining health insurance

Another major barrier was a lack of health insurance and uncertainty in how to get

 it. Participants felt excluded from accessing health services due to their marginalised status and limited employment prospects. Uncertainty regarding health insurance, or how to access health services without it, caused significant anxiety. This often intensified after receiving an HIV diagnosis as participants then needed to access medication. The notion of health insurance was often foreign to participants who did not require it in their home countries.

“Most people don’t even have health insurance or even have money to do a HIV initial test.” 47-year-old man from Ivory Coast.

“The guy give me prescription. I tried to go different pharmacists. [They] say, ‘No, we can’t give you. You have to find insurance.’ I don’t have insurance. I don’t know about [it]… So, I said, ‘Okay, let me die.’” 49-year-old Tanzanian woman.

Social stigma within communities

Participants described the significant social stigma related to HIV within African immigrant communities. Anticipated and experienced social isolation as a result of this stigma presented another barrier to seeking out HIV-related services or even speaking about or acknowledging HIV. This was of particular importance because for many undocumented migrants, the immigrant community was their primary source of support. Being discovered as HIV positive could have far-reaching negative impacts, affecting everything from housing to employment prospects.

“What if somebody knows or what if I talk about it? Are they going to think I am sick? Is my family going to abandon me? Are they going to kill me? You know? So, people don’t even talk about it. So, most people don’t even get tested.” 44-year-old Tanzanian woman.

“…So, what would happen is, those that turn out HIV-positive, if they really know, they find out that you are HIV-positive they’ll find a way to make you lose your job… they will call your boss, tell them that you’re HIV-positive.’’ 48-year-old Zambian woman recounting what happened after community members discovered she was HIV positive.

Social and health service providers as allies

Despite the challenges mentioned above, service providers emerged as an important facilitator that assisted with linking participants to care. This included healthcare providers, social workers and community-based organisations. They provided tangible services and resources, such as assistance securing health insurance, doctor appointments and food assistance, that made a marked difference in participants’ lives. Importantly, participants described these as safe spaces where they could openly discuss their HIV status and not fear immigration-related consequences or ostracism from their own communities.

“When I’m talking to my doctor, when I’m talking to the social workers, they are accommodating and they are always ready to assist. So, I think that makes it easier.” 37-year-old Nigerian woman.

“At least you have somewhere where… you are not alone.” 55-year-old Tanzanian woman.

Conclusion

This study reveals how experiences of HIV testing and linkage to care for undocumented African migrants are affected by individual, community, institutional and policy factors and how approaches directed at all of these domains are important to increase HIV testing and follow-up for this vulnerable population. These findings were consistent across time, from those who were recently diagnosed to those who had been living with HIV for two decades, indicating that HIV prevention messaging should address immigration-related concerns.

The authors emphasised that culturally-tailored, community-based interventions aimed at stigma reduction would be important to increase testing and linkage to care.

The authors conclude by proposing a framework “for developing interventions to promote HIV testing and facilitate linkage to care for undocumented African immigrants that incorporates individual, social, institutional, and societal levels of influence.”

References

Ross J et al. Undocumented African Immigrants' Experiences of HIV Testing and Linkage to Care. AIDS Patient Care and STDs 33: 336-341, 2019.