To the Editor:
Although more than 2.3 million refugees have resettled in the United States since 1975, 1 few of them have been HIV-positive. This is because the Immigration and Naturalization 4 Act requires testing for HIV infection and finds almost all individuals infected with HIV inadmissible. 2 Furthermore, no data exist about the prevalence of HIV infection among the 2.4 million individuals who have sought refugee status through the political asylum program 3 because they are not required to undergo HIV testing as part of the initial immigration process.
As a result of these past policies, American physicians are unaware and have had limited or no experience with the unique health problems that HIV-infected refugees may suffer. Between the summers of 2000 and 2001, approximately 200 HIV-infected refugees entered the country under a humanitarian parole granted by the U.S. Attorney General. We describe the historical, clinical, and psychologic characteristics of a cohort of HIV-infected refugees presenting for care in the United States with the goal of clarifying useful standards for their medical and psychologic care.
METHODS
After securing approval from the Institutional Review Board of the Boston Medical Center (BMC), we conducted a retrospective chart review of patients who fell within the United Nations definition of refugee and had a seropositive test for HIV. All patients were evaluated at the HIV Diagnostic Evaluation Unit (DEU) 4 and the Boston Center for Refugee Health and Human Rights, both located at the BMC, between June 2000 and June 2001. The chart review included inspection of the intake instruments used during the initial evaluation of patients as well as laboratory, radiology, and progress reports. Additional information was obtained from direct observations made by the different providers of these patients.
We defined torture according to the World Medical Association's Declaration of Tokyo. 5 Adherence to pharmacotherapy was defined as missing less than 2 days of medications in a 4-week period. Psychologic diagnoses were made using the criteria set forth by the Diagnostic and Statistical Manual of Mental Disorders IV-TR.
RESULTS
A majority of the patients (n = 34) were female (53%) and had a mean age of 31.9 years. Most patients (24/34 [71%]) had refugee status on arrival to the United States, and the rest were asylum applicants. Table 1 presents other demographic characteristics of the study population. The mean number of medical visits required to complete the initial assessment was 2.5 (range: 1-5 visits). Patients had a mean follow-up of 8.6 months (range: 0-20 months), and during this period of time, they had an average of 6.3 clinic visits (range: 1-25 clinic visits). Of the 34 patients, only 3 (9%) did not return for follow-up visits.
Twelve of 34 patients (35%) declined to discuss all or part of their trauma history. Of 30 patients who disclosed whether or not they had suffered torture, 23 (77%) answered affirmatively. The reasons for uprooting were ethnic persecution (35%), political activities (29%), civil war (24%), relative of another victim (9%), and domestic violence (3%). Patients endured several different forms of abuse, of which the most common were beatings (21/26 [81%]), threats (23/26 [88%]), use of handcuffs/shackles (4/26 [15%]), forced observation of dead bodies (12/19 [63%]), forced witnessing of killings (12/19 [63%]), and rape (6/26 [23%]). All patients lost their socioeconomic status as a result of the uprooting and persecution. Male patients were more likely than female patients to report being restrained with handcuffs/shackles (9 vs. 0; P = 0.0001).
The 4 most common past medical conditions reported by patients were malaria (47%), tuberculosis classes 1 and 2 (18%), parasites (15%), and hepatitis B (12%). Seventy percent of patients presented with physical symptoms during the initial evaluation. The most common symptoms were headaches (35%), changes in weight (25%), skin rash (15%), and fatigue/malaise (10%). Common psychologic symptoms included loneliness (45%), insomnia (40%), anhedonia (40%), avoidance (35%), intrusive recollections (25%), and anxiety (25%). On physical examination, scarring from torture was found in 23% (8/34) of the patients. Female genitalia mutilation was noted in 2 patients. Fifty-six percent of the patients were diagnosed with major depression, and 32% were diagnosed with posttraumatic stress disorder. Table 2 presents the health screening results. The only difference found in health screening was tobacco use, which occurred only in men (6 vs. 0; P = 0.005).
The mean time that elapsed between the diagnosis of HIV infection and initial medical evaluation was 0.7 years (range: 0-2.2 years). All patients were infected with HIV type 1, and 26% (9/34) of them met the Centers for Disease Control and Prevention (CDC) criteria for AIDS. Forty-seven percent (15/34) met indications for HIV pharmacotherapy and received antiretroviral therapy (ART). All but 2 patients reported adherence with their medications. One of the nonadherent patients decided to stop ART altogether, alleging conflicts with his cultural values. The other patient was lost to follow-up for some time and, despite medications, never achieved an undetectable HIV viral load. All 13 patients who achieved undetectable viral loads remained without detectable virus during follow-up.
Providers observed that most patients became upset with 3 issues: eliciting history of substance abuse, receiving safe sex education, and discussing appropriateness of antiretroviral medications. Patients explained that questions related to substance abuse were insulting, because such behavior was perceived as immoral. Efforts to educate patients about safe sex, including condom use, were met with arguments that they did not need this type of education because they practiced complete abstinence. Patients later acknowledged engaging in unprotected sex, however. Although extensive efforts about HIV pharmacotherapy were part of all clinical interactions, patients who did not meet the criteria for highly active antiretroviral therapy (HAART) often accused their providers of withholding treatment on grounds of ethnic or migratory discrimination.
DISCUSSION
Providing medical care to HIV-infected refugees is a challenging task requiring HIV medicine clinical skills as well as knowledge of tropical medicine and substantial attention to mental health issues. As is the case with non-HIV-infected refugees, these patients had a high prevalence of infectious diseases associated with immigrants from developing countries. 6
Our patients presented with a high prevalence of mental health conditions. The prevalence of posttraumatic stress disorder (PTSD) in our study (32%) is remarkably high yet similar to that of other reports, including 1 study involving tortured prisoners with a prevalence of 39%. 7 Practitioners must be careful addressing the trauma history and mental health problems of HIV-infected refugees, particularly during the initial evaluation, because refugees might not be prepared to discuss these issues until reaching a different stage of adjustment. 8
The effect of cultural and religious beliefs was evident throughout the clinical interactions. For instance, patients were reluctant to discuss safe sex education and substance abuse. Male African patients had difficulties interacting with female providers, and patients commonly refused to see a mental health counselor or to take psychiatric medications even though they acknowledged having significant psychologic problems. We recommend addressing these issues in this particular patient population after a solid trust exists between the patient and the provider. Despite these differences and conflicts, all but 3 patients presented as scheduled to their appointments, and 95% reported adherence with their medications.
Stress from torture and uprooting combined with the added stress of the asylum process and the stigma of being HIV-positive made the standard pre- and post-HIV test counseling inadequate for asylum seekers. Several factors made the process of counseling different and more challenging. All patients mistrusted the system because they perceived health care workers as government agents. A significant number (35%) of them had been exposed to high-risk situations either during torture or as a consequence of complications related to torture. In at least 2 patients, the cumulative stress led to suicidal ideation.
One remarkable characteristic of this HIV-infected refugee cohort is the fact that 35% of the patients were exposed to HIV risk situations as a consequence of torture. In most countries, the implications of being infected with HIV are similar to the objectives sought by perpetrators-to break the mind and the body of the victim, to stigmatize the victim, and to create fear throughout the community. 9 One important question for policy and political leaders is whether perpetrators knowingly expose their victims to HIV risk situations because transmitting HIV to their victims achieves their political objectives.
This study has a number of limitations, including the small size of the cohort. Nonetheless, this limited experience with a new and likely increasing special population yields some important clinical insights. The study's retrospective design limits the capacity to obtain a comprehensive history. This limitation is minimized, however, because patients were seen by providers who were well prepared to assess the unusual clinical features noted.
In summary, HIV-infected refugees present with complex health needs. Any attempt to deliver appropriate care to this vulnerable population should include efforts not only to screen for infectious diseases common in immigrants from developing countries but to assess psychologic conditions such as depression and PTSD while appreciating the different values of this very diverse group of individuals. For successful clinical interactions, physicians and health care teams will need to offer extensive support and empathy to these patients.
Alejandro Moreno, MD, MPH
Sondra Crosby, MD
Colleen Labelle, RN
Margaret Sullivan, MD
Jeffrey H. Samet, MD, MA, MPH
REFERENCES
1. United States Department of Health and Human Services. Administration for Children and Families. ACF Press Room [web site]. September 5, 2000. Available at:
www.acf.dhhs.gov/programs/opa/facts/orr.htm. Accessed October 2, 2000.
2. 8 U.S.C. 1182. General classes of aliens ineligible to receive visas and ineligible for admission.
3. United States Department of Justice. Immigration and Naturalization Service. 1997 Statistical Yearbook of the INS [web site]. October 1999. Available at:
www.ins.usdoj.gov/graphics/aboutins/statistics. Accessed October 3, 2000.
4. Samet J, Libman H, LaBelle C, et al. A model clinic for the initial evaluation and establishment of primary care for persons infected with human immunodeficiency virus. Arch Intern Med. 1995; 155:1629-1633.
5. World Medical Association. Declaration of Tokyo. 1975.
6. Ackerman L. Health problems of refugees. J Am Board Fam Pract. 1997; 10:337-348.
7. Paker M, Paker O, Yuksel S. Psychological effects of torture: an empirical study of tortured and non-tortured non-political prisoners. In Basoglu M, ed. Torture and Its Consequences-Current Treatment Approaches. Cambridge: Cambridge University Press; 1992:72-82.
8. Gavagan T, Brodyaga L. Medical care for immigrants and refugees. Am Fam Physician. 1998; 57( 5):1061-1068.
9. Piwowarczyk L, Moreno A, Grodin M. Health care of torture survivors. JAMA. 2000; 284:539-541.
© 2003 Lippincott Williams & Wilkins, Inc.