Appendix C
Mental Illness and HIV Comorbidity: A Large and Vulnerable HIV Subpopulation1

Individuals with both mental illness and HIV represent a large, vulnerable, and possibly growing segment of the HIV population. The prevalence of this comorbidity is exceedingly high: about 50 percent of those in HIV care have a comorbid mental illness (Bing et al., 2001). The mental illness (MI) can arise independently of HIV infection, can predispose to HIV (through risk-related behaviors), or can be a psychological consequence of HIV (e.g., depression).2 Regardless of etiology, the comorbidity of MI-HIV poses special challenges for HIV care. Individuals with this comorbidity face even greater barriers to care than do those with HIV alone. Once in care, their treatment is more complex. Because MI can increase the risk of acquiring or transmitting HIV, responding to the barriers to, and complex needs in, care is imperative for both patients and the public health.

This appendix describes the impact of MI in terms of HIV acquisition or transmission, impact on the course of HIV disease, barriers to care, complexity of care, and outcomes of care. It begins, however, with an introduction to MI and the comorbidity of MI-HIV.

1  

This appendix was primarily authored by Miriam Davis, Ph.D., Department of Epidemiology and Biostatistics, School of Public Health and Health Services, George Washington University, and independent medical writer.

2  

This section does not cover the neuropsychiatric manifestations of HIV itself, e.g., HIV dementia.



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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Appendix C Mental Illness and HIV Comorbidity: A Large and Vulnerable HIV Subpopulation1 Individuals with both mental illness and HIV represent a large, vulnerable, and possibly growing segment of the HIV population. The prevalence of this comorbidity is exceedingly high: about 50 percent of those in HIV care have a comorbid mental illness (Bing et al., 2001). The mental illness (MI) can arise independently of HIV infection, can predispose to HIV (through risk-related behaviors), or can be a psychological consequence of HIV (e.g., depression).2 Regardless of etiology, the comorbidity of MI-HIV poses special challenges for HIV care. Individuals with this comorbidity face even greater barriers to care than do those with HIV alone. Once in care, their treatment is more complex. Because MI can increase the risk of acquiring or transmitting HIV, responding to the barriers to, and complex needs in, care is imperative for both patients and the public health. This appendix describes the impact of MI in terms of HIV acquisition or transmission, impact on the course of HIV disease, barriers to care, complexity of care, and outcomes of care. It begins, however, with an introduction to MI and the comorbidity of MI-HIV. 1   This appendix was primarily authored by Miriam Davis, Ph.D., Department of Epidemiology and Biostatistics, School of Public Health and Health Services, George Washington University, and independent medical writer. 2   This section does not cover the neuropsychiatric manifestations of HIV itself, e.g., HIV dementia.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White MENTAL ILLNESS Mental illness is an umbrella term denoting any one or more of the mental disorders listed in DSM-IV or ICD-10.3 The hallmarks of these disorders are abnormalities in mood, cognition, and the highest integrative aspects of human behavior, such as planning and social interactions. Mental illness is highly prevalent, with about 20 percent of the United States population (about 44 million) fulfilling criteria for one or more disorders in a given year (DHHS, 1999). Anxiety (16 percent) and depression (6–7 percent) are the most common, whereas bipolar disorder and schizophrenia affect about 1–2 percent of the population. While overall rates of mental illness do not vary by gender, women have significantly higher rates of major depression: the 12-month rates are 13 percent of women versus 8 percent of men (Kessler et al., 1994). About half of people with a mental illness will also have a substance use disorder at some time during their lifetime (Kessler et al., 1994; DHHS, 1999). Comorbidity of MI and substance use disorders is the norm, rather than the exception. People within the lowest socioeconomic status (SES) group are about two to three times more likely to suffer from mental illness than people in the highest group. Minorities, by virtue of lower SES, are disproportionately affected by mental illness (DHHS, 2001). After controlling for SES, mental illness is as prevalent in African Americans and Hispanic Americans as whites. The two main explanations for the link between poverty and mental illness are that (1) poverty causes exposure to more stressful environments (with fewer social supports), and (2) poverty is a consequence of having a mental illness that leads to unemployment or underemployment (DHHS, 2001). The fact that MI is more prevalent in minority populations is critical to understanding the shifting dynamics of the HIV epidemic, as explained later. Mental illness is highly disabling, especially depression, bipolar disorder, or schizophrenia. A groundbreaking study by the World Health Association (WHO) ranked mental illness first in terms of causing disability in the United States, Canada, and Western Europe (WHO, 2001). It found that mental illness accounts for 25 percent of total disability, a rate higher than that for substance use disorders, which ranked second. The disability toll of mental illness is high because mental illness is highly prevalent, often arises in childhood or adolescence, and carries a long-term (usually relapsing–remitting) course. Mortality is more commonly 3   Diagnostic and Statistical Manual of Mental Disorders, DSM-IV, 4th edition. Published by the American Psychiatric Association, 1994; International Classification of Diseases, 10th edition. Published by the World Health Organization.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White from suicide, inadequately treated comorbid medical problems like diabetes (Dixon et al., 2000; Sullivan et al., 1999), or from physiological interrelationships between MI and comorbid medical conditions (see later section on depression). On a separate disability measure that includes both mortality and disability,4 depression ranks directly behind HIV—yet both rank within the top ten (WHO, 2001). The loss of productivity to the United States economy from MI totals about $63 billion annually (DHHS, 1999). There are a range of effective treatments for most mental disorders—medications, psychotherapies, and other services and supports—but 50 percent of those with mental illness do not receive any treatment because of barriers to access (DHHS, 1999). About 5–9 percent of United States adults and children have more severe forms of mental illness (Kessler et al., 2001; NHSDA, 2002; DHHS, 1999). For adults, the commonly used term is “serious mental illness.” Stemming from federal regulations, the term refers to a diagnosable mental disorder that impairs performance at work, home, or other area of social functioning. The analogous regulatory term for children is “serious emotional disturbance.” The disorders subsumed by either of these terms are typically severe depression, bipolar disorder, and schizophrenia. Their onset typically occurs in later adolescence or early twenties. Ninety percent of adults with serious mental illness are unemployed (DHHS, 1999). This appendix focuses on the full range of mental disorders, from milder depression to serious mental illness, because most disorders are overrepresented in the HIV population, and the general barriers to MI or HIV treatment do not vary by mental disorder. Mental Illness and HIV Comorbidity People with MI are at higher risk for HIV than those without MI (Cournos and McKinnon, 1997; Stoskopf et al., 2001). The comorbidity of MI-HIV has been largely studied in two different ways—in samples either receiving mental health care, or in samples receiving HIV care. Neither sample type is representative of the population with MI-HIV comorbidity, partly because so many are not in treatment. Among people with serious mental illness (SMI), the seroprevalence of HIV ranges from 4 to 23 percent, with an average of about 7 percent (Carey et al., 1995; Cournos and McKinnon, 1997). That average is much higher than the rate of HIV in the general United States population (0.3–0.5 percent). Among people in HIV care, the prevalence of MI is at least 50 percent (Bing et al., 2001). This rate 4   Disability-adjusted life year (DALY), which expresses years of life lost to premature death and years lived with a disability of specified severity and duration (WHO, 2001).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White TABLE C-1 Comorbidity of Mental Illness in Nationally Representative Sample of Patients in HIV care, HCSUS N=2,864 Condition Percentage Major depression 36.0* Dysthymia 26.5 Generalized anxiety disorder 15.8 Panic attack 10.5 TOTAL 52.1 *These figures add up to more than 52.1 percent of the total sample because many had more than one mental disorder. SOURCE: Bing et al., 2001. is higher than that for illicit drug use (25 percent) or drug dependence (12.5 percent), according to the nationally representative HIV Cost and Services Utilization Study (HCSUS) (Bing et al., 2001). The investigators also screened HIV patients for the most common mental disorders using a brief screening instrument.5 They found high rates of major depression (36 percent of the total sample), dysthymia (26.5 percent), generalized anxiety disorder (15.8 percent), and panic attack (10.5 percent) (Table C-1).6 Because of resource constraints, they were unable to screen for less prevalent mental disorders, such as post-traumatic stress disorder (PTSD), schizophrenia, and bipolar disorder, which have been associated with HIV. Estimates are that 9.2 percent of those with schizophrenia have HIV (Cournos and McKinnon, 1997). One large, population-based study of all inpatient and emergency discharges from the state of South Carolina (n=379,000) found that MI-HIV comorbidity was highest for patients ages 18–25 and women (Stoskopf et al., 2001). Overall, the study found that people with MI were 1.44 times more likely to have HIV/AIDS than those without MI. The study did not find ethnic or racial differences in the risk of comorbidity, and it did not investigate SES as a risk factor. While the prevalence of MI-HIV comorbidity is already high in clinical samples, is it likely to increase? This key question has not been formally addressed in any demographic projections. On the basis of existing data, it is reasonable to infer that rates of this comorbidity are destined to grow. Those at highest risk of comorbidity, as indicated above, are women and young people. Women and youth also account for a growing proportion of 5   The University of Michigan Composite International Diagnostic Interview, UM-CIDI. 6   These figures add up to more than 50 percent of the total sample because many had more than one mental disorder.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White new AIDS cases, as do racial and ethnic minorities (CDC, 2002). Minorities have higher prevalence of mental illness by virtue of lower SES, as explained above. Thus, because of shared demographic risk factors, the prevalence of MI-HIV comorbidity may climb. Put another way, HIV is rising in the same disadvantaged groups in which MI is concentrated. Mental Illness and HIV Acquisition or Transmission People with MI are considered at increased risk of acquiring or transmitting HIV for two reasons: (1) greater likelihood of high-risk sexual behavior or substance abuse and (2) poor adherence with the complex requirements of combination antiretroviral therapy (ARV), which can lead to the emergence and potential transmission of drug-resistant HIV (Cournos and McKinnon, 1997; Johnson, 1997; Carey et al., 1997; Sullivan et al., 1999). Underlying these concerns are the behavioral and cognitive manifestations of the disorders themselves—such as impaired decision making and perception of risks, low motivation, impulsivity, and vulnerability to sexual victimization. This section summarizes recent studies that empirically examine whether MI can increase the transmission of HIV. The studies give a more nuanced and complex portrait of the problem, suggesting variation in risk depending on the psychiatric diagnosis or nature of symptoms. The findings have important implications for prevention and control of HIV. On the one hand, they suggest that targeted interventions are needed to help people with mental illness reduce risky behavior and improve adherence. On the other hand, they raise the possibility of discrimination against people with mental illness, not on the basis of their ability to adhere to treatment, but on the basis of their membership in a categorical group. There is some evidence that people with MI face discrimination in the form of physicians’ withholding treatment for people with MI-HIV, as this section explains. HIV Risk-Related Behavior It has long been hypothesized that people with MI are more likely to engage in high-risk sexual behavior or injection drug use—behaviors that heighten the risk of acquiring or transmitting HIV. But research, when available, has given a mixed picture that varies by diagnosis, level or severity of symptoms, and age. The evidence reveals that serious mental illness—but not depression and anxiety—is associated with risky behavior, and that youth also increases risk. Depression and anxiety are the most common mental disorders among those in HIV care, as noted earlier. A recent meta-analysis of 34 studies investigated the impact of depression or anxiety on high-risk sexual behaviors, defined as having multiple

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White partners and/or unprotected sex. The samples included individuals with MI alone, as well as MI-HIV. The study found little evidence that depression and anxiety are associated with more risky behavior (Crepaz and Marks, 2001). Findings suggest that SMI, without comorbid HIV, does increase the likelihood of engaging in high-risk sexual behaviors (Carey et al., 1997; Cournos and McKinnon, 1997; Sullivan et al., 1999). In a recent and large study of 1,558 psychiatric outpatients, almost 70 percent were sexually active, and 23 percent engaged in risky sexual behavior (Carey et al., 2001). Younger age and having a diagnosis other than schizophrenia had the strongest associations with high-risk sexual practices. Adolescents with mental disorders are much more likely than peers to engage in unsafe sexual behavior, primarily because of impulsivity, self-destructive attitudes, cognitive immaturity, high rates of substance use, and sequelae of sexual abuse (Brown et al., 1997; Smith, 2001). One causal pathway to HIV infection in adolescence or young adult-hood is thought to begin with childhood sexual abuse, then development of SMI, a substance use disorder, and/or high risk sexual behavior, and culminating in HIV infection (Rosenberg et al., 2001). Childhood sexual abuse is often an antecedent to depression, PTSD, conduct disorder, or suicidal behavior (IOM, 2002). Adolescents with a history of sexual abuse are three times more likely than those without a history to report unsafe sexual behavior (Brown et al., 2000). Similarly, women with HIV, regardless of ethnicity, are about seven times more likely to have a history of sexual or physical abuse than women who are seronegative (Wyatt et al., 2002; see also references in Wyatt). Sexual abuse is also a strong predictor of becoming a victim of domestic abuse (physical, sexual, or psychological abuse by an intimate partner). Among almost 1,300 women with HIV or at risk for HIV, the prevalence of childhood sexual abuse was about 27–30 percent, and the lifetime prevalence of domestic violence was nearly 70 percent (Cohen et al., 2000). The study did not report on whether these women had mental disorders, but other studies indicate that PTSD is found in 33–86 percent of adult survivors of child sexual abuse (Follette et al., 1996) and often goes undiagnosed (Frueh et al., 2002). What is the impact on sexual behavior of having comorbid MI-HIV? Does this comorbidity predict greater likelihood of high-risk sexual behaviors? There have only been two relatively small studies addressing this question. A study of 154 West Coast outpatients with comorbid SMI-HIV found increased likelihood of engaging in high-risk sexual behaviors for those with more psychotic symptoms, problem drinking, and not receiving HIV counseling (Tucker et al., 2003). The outpatients in this study had diagnoses of major depression with psychotic features, bipolar disorder, or schizophrenia/schizoaffective disorder. The only other relevant study was of 42 psychiatric inpatients in New York City at a late stage of HIV

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White infection. It found that SMI-HIV patients had high rates of risky behavior, including sex with a known injection drug user, prostitution, and male–male sexual contact (Meyer et al., 1995). There is a paucity of research on the impact of MI on risk of injection drug use. While comorbidity of MI and a substance use disorder is common, and lifetime rates of injection drug use are quite high among those with SMI, there is little information on whether injection drug practices are related to HIV transmission. For example, it is unknown whether persons with MI who engage in injection drug use participate in needle exchange programs or use bleach to clean needles (Sullivan et al., 1999). Adherence to Antiretroviral Therapy The relationship between mental illness and adherence to ARV has been investigated in several studies, most of which relied on measures of depression or anxiety symptoms or distress rather than psychiatric diagnoses per se. Although not all studies have found a relationship between adherence and psychological well-being, a number of studies have found that depressive symptoms, hopelessness, psychological distress, and overall stress are associated with lower antiretroviral adherence. Paterson and colleagues (2000) studied 81 HIV patients, with adherence tracked by a microelectronic monitoring system. The study found that active psychiatric illness, primarily depression, was an independent risk factor for nonadherence, and that nonadherence was significantly associated with treatment failure. Catz and colleagues (2000) also found that depression was a risk factor for self-reported nonadherence in a sample of 72 patients at a teaching hospital. A study in Spain by Gordillo and colleagues (1999) of 366 patients also found that depression was a risk factor for poor adherence. Chesney and colleagues (2000), studying 75 patients at 10 United States sites, determined that nonadherent patients reported higher levels of perceived stress. Relatedly, Singh and colleagues (1999), using the Beck Hopelessness Scale and other measures, found that hopelessness and loss of motivation were associated with non-adherence. One study of SMI and adherence to ARV conducted by investigators at RAND found that about 40 percent of subjects were adherent (>90 percent adherence), while 31 percent had very poor adherence (<50 percent). The overall average adherence rate was 66 percent of prescribed doses, a rate similar to general clinic or community populations. The fact that a large percentage was adherent defied the conventional wisdom that these individuals lack the capacity to adhere to a complex dosing schedule. Still, a third of the sample had very poor adherence, a finding that prompted the investigators to suggest further research to identify barriers and inform the

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White development of tailored interventions for those with SMI to achieve greater adherence, and thus greater treatment benefits (Wagner et al., 2003). In summary, the research on MI and adherence to ARV therapy indicates that symptoms of depression and psychological distress are associated with lower adherence. There is very little research on the relationship between adherence and actual diagnoses of depression or anxiety. The one study of SMI finds, contrary to expectations, that people with one of the more serious diagnoses are not necessarily more likely to be nonadherent. What is clear is that more research is needed on adherence across the entire spectrum of psychiatric diagnoses. Mental Illness Impact on HIV Disease The impact of MI on the course of HIV disease has drawn more attention because of longer survival with HIV. A nationally representative study of persons receiving HIV medical care determined that those with comorbid mood disorders had lower scores on health-related quality of life (Sherbourne et al., 2000). The authors interpret their findings to suggest that the comorbidity of HIV with mood disorders leads to greater disability and unnecessary utilization of other health services (Uldall et al., 1998). An emerging area of inquiry is whether mental illness, particularly depression, has an effect on the actual course of HIV disease. This line of inquiry stems from the field of psychoneuroimmunology. It is now well established that depression, possibly through immune-mediated dysfunction, is a risk factor for early mortality from a variety of medical illnesses, including heart disease (Ford et al., 1998; DHHS, 1999). One longitudinal study of gay and bisexual men with HIV found that comorbid depression was associated with earlier mortality (Mayne et al., 1996). In another longitudinal study, women with chronic depressive symptoms were two times more likely to die than infected women with limited or no depressive symptoms (Iskovics et al., 2001). The underlying mechanisms were studied by examining immune functioning in HIV-seropositive versus HIV-seronegative women with depressive symptoms. While rates of depression diagnoses were similar, HIV-seropositive women had higher symptom scores. The investigators found that depression may alter the function of killer lymphocytes in HIV-seropositive women and yield an increase in activated CD8 T lymphocytes and viral load (Evans et al., 2002). The latter are associated with HIV disease progression. These findings, if confirmed, underscore the importance of recognizing and treating depression as a standard part of HIV care, considering that depression is the most prevalent mental disorder in those receiving HIV care (Bing et al., 2001).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Barriers to Care Barriers abound with respect to access and treatment of both HIV and MI, given the findings that a large fraction of each population is not receiving any treatment. While many barriers are similar across diagnoses, this section focuses primarily on the barriers to care of MI—either alone or comorbid with HIV. Two landmark reports of the United States Surgeon General have analyzed the barriers that deter more than half of those with diagnosable mental disorders from receiving care (DHHS, 1999, 2001). Three overarching barriers to care were identified: the stigma attached to mental illness, the cost of mental health services, and the fragmentation of services. The latter refers to the patchwork of programs and settings of care (e.g., a hospital, community clinic, private office, or school) and a myriad of financing streams that make it difficult for people to find care and remain in care. Members of ethnic and racial minority groups not only face these three barriers, but also a host of others, including fear and mistrust of mental health care providers, providers’ lack of awareness of cultural concerns, and language barriers for immigrants (DHHS, 2001). Rates of both access and utilization of mental health care are lower for minorities than for whites, a striking finding considering the already low rate of service utilization for whites (<50 percent receives any treatment in a given year) (DHHS, 2001). Minorities are overrepresented in the most vulnerable groups of homeless and incarcerated persons (DHHS, 2001). While the HCSUS study of people in HIV care found relatively high rates of utilization of mental health services (61.4 percent used mental health services), it also uncovered regional variation and inequities among certain demographic groups. Access was lower by minority and low education, and income populations (Burnam, 2001). Individuals with comorbid MI-HIV appear to face additional barriers even if they manage to reach care. The barriers include lack of detection of HIV and physician withholding HIV treatment. These barriers stem partly from the complexity of coordinating care among three overlapping, yet distinct service systems—mental health, substance abuse, and general medical care. People with mental illness, regardless of severity, are seen by specialty mental health providers or by general medical providers (e.g., primary care) (DHHS, 1999). People with HIV are seen in primary medical care or by infectious disease specialists. To complicate matters, care for substance abuse has its own treatment settings and treatment philosophies, and substance abuse providers do not always diagnose mental disorders (Zweben, 2000).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Inadequate Detection of HIV A major barrier in mental health care is inadequate detection of the comorbid condition, although studies are few and samples are not necessarily representative. This barrier exists to various degrees in both HIV and mental health care settings, but research points to greater problems in the mental health setting. Mental health professionals may not adequately screen for HIV (Brunette et al., 2000; McKinnon et al., 2001), despite the public health recommendations to conduct routine HIV counseling and testing in settings with HIV prevalence of 1 percent or more (CDC, 2001). 7 This cutoff applies to most, if not all, mental health treatment programs, given prevalence figures cited earlier. Researchers at RAND, interviewing 159 treatment providers at 72 mental health and HIV treatment programs in New York City and Los Angeles, found that screening for HIV and risk behaviors in mental health agencies occurs haphazardly, given the range of clients’ nonpsychiatric and other medical needs that compete for the attention of providers. In contrast, HIV treatment agencies tend to place high priority on screening and care for mental illness, as clinicians generally perceive the mental health of clients to be central to successful HIV treatment and adherence. Nevertheless, because research has long established that depression is missed in 40–60 percent of patients in primary care (Hirschfeld et al., 1997; DHHS, 1999), it would not be surprising if depression went undetected in HIV care. One of the few other studies of this problem found community mental health clinicians in New Hampshire to report lack of specific knowledge about comorbid MI-HIV and to report interest in receiving training (Brunette et al., 2000). One study that directly focused on the barriers to receipt of HIV care for individuals whose SMI-HIV comorbidity is already known compared nearly 300 SMI-HIV patients in Los Angeles and New York City to patients from the HCSUS cohort from the same geographic region and with HIV alone. It found that people with SMI were more likely to experience barriers to care (Allen M. Fremont, Personal communication, 2002). Barriers to care were measured by a three-item index—not getting needed medical care, going without care because of lack of money, or going without food because they needed the money for care. 7   Psychiatrists are urged to screen every patient for HIV risk factors to determine if counseling and testing are indicated—a targeted method of HIV counseling and screening (APA, 2001).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Withholding HIV Care and Discrimination Against Mental Illness Persons with mental illness or HIV are highly stigmatized. Though empirical research is limited, it would hardly be surprising if stigma were not compounded for individuals with MI-HIV comorbidity. As expressed in Mental Health Care for People Living with or Affected by HIV/AIDS: A Practical Guide, “The HIV-infected client [of mental health services] often finds himself/herself stigmatized in many ways—for having a fatal, transmittable disease; for being ‘crazy’; for being gay; for being sexual; for being a substance user; for being African-American; for being poor; for being Hispanic; for being an illegal immigrant; for being unemployed; for being homeless; or for being an ex-offender. HIV-related stigmatization constitutes an epidemic in itself—an epidemic of fear, prejudice, and discrimination” (Acuff et al., 1999). A major concern is that identification of mental illness in HIV-infected individuals will lead to a particular form of medical discrimination: physicians’ withholding HIV therapy in order to prevent possible transmission of multi-drug resistant HIV. A 1998 survey of 995 infectious disease physicians, responding to hypothetical scenarios, found that 57 percent of them were either “very much against” or “somewhat against” prescribing ARV for someone with prior psychiatric hospitalization (Bogart et al., 2000). A related survey found widespread use of nonmedical factors determining physician likelihood of starting someone on ARV, although questions did not specifically assess psychiatric history or current MI (Bogart et al., 2001). These studies underscore the problem that physicians may discriminate against patients on the basis of medical history or demographic group membership, rather than on the basis of their individual level of adherence. Patients’ initial level of adherence is the strongest predictor of adherence (Sherbourne et al., 1992). Research reveals that physicians, typically using other factors, are unable to predict which of their patients will adhere to therapy (Sollitto et al., 2001). Concerned about bias in treatment recommendations, a NIH panel alerted physicians in 1998: “No individual patients should automatically be excluded from consideration for antiretroviral therapy simply because he or she exhibits behavior or other characteristics judged by some to lend itself to noncompliance” (NIH, 1998). This precise wording was later adopted verbatim in the 2002 HIV treatment guidelines. With regard to initiating therapy, those guidelines explicitly rely on CD4 levels and viral load, as well as taking into account “the likelihood, after counseling and education, of adherence to the prescribed treatment regimen” (DHHS, 2004). An editorial review echoed the theme of unwarranted discrimination and urged physicians to work with potentially nonadherent patients until they achieve sufficient understanding and social support to maximize successful antiretroviral treatment (Sollitto et al., 2001).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White TREATMENT ISSUES The treatment of MI-HIV comorbidity is more complex than the treatment of HIV alone or MI alone. Both MI and HIV treatment require a wide array of long-term services, including medication, counseling, patient education, risk reduction strategies, and other supports and services. Monitoring and treatment of substance use are also vital. The care demands are so great that coordination of care and attention to social supports are essential. This section will draw attention to major issues in treatment, many of which are highlighted by the American Psychiatric Association in their recent Practice Guidelines for the Treatment of Patients with HIV/AIDS (APA, 2001). Medication Complexity, Side Effects, and Costs Treatment of HIV and SMI requires long-term reliance on multiple medications, alone or in combination with other therapies such as psychotherapy. The average patient with a serious mental illness, like schizophrenia or bipolar disorder, ingests two or three medications, some of which, like the mood stabilizer lithium, require blood monitoring of drug levels to avoid toxicity. Side effects of psychiatric medications, like those for ARV, can be highly debilitating and are highly prevalent. Some studies, for example, indicate that side effects occur in about 40 percent of those taking medication for schizophrenia (DHHS, 1999). People with MI also need frequent visits for medication adjustment. Pharmacotherapy of schizophrenia is a case in point: one-quarter of patients with stable antipsychotic drug regimens have their medications switched over the course of a year (Leslie and Rosenheck, 2002). The complexity of medication dosing and the severity of side effects are some of the main determinants of adherence. Most studies of drug adherence for mental illness find average adherence rates of 58–65 percent, rates that are similar to those for HIV (see earlier discussion) and slightly but not significantly lower than those for other long-term physical disorders (Cramer and Roseheck, 1998). Even though adherence rates may be similar, that does not mean they are adequate, considering that minor deviations can lead to multidrug resistance to HIV. Drug–drug interactions are another concern for MI-HIV comorbidity, although clinical experience does not suggest that these are major problems (APA, 2001). Some HIV medications are metabolized by the same liver enzymes that metabolize psychotropic medications. For example, nonnucleoside reverse transcriptase inhibitors (nevirapine and efavirenz) induce the cytochrome P450 isozymes 3A and 2B6, which in turn can decrease blood concentrations of psychotropic medications. Alternatively, various

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White HIV-psychotropic drug interactions may lower antiretroviral levels. The APA guidelines furnish the full range of possible interactions and provide guidance for clinicians. Skyrocketing drug costs are another concern for MI-HIV comorbidity. The high cost of HIV drugs is well known, running about $12,000 per year. But not as well known is the high and rising cost of psychotropic medications. The introduction of new brand-name drugs has fueled large price increases in HIV antivirals as well as psychotropic medications (NIHCM, 1999). Prices have also risen as a result of increasing consumer demand, increased physician diagnosis, and managed care’s emphasis on medications over psychotherapy, among other reasons (NIHCM, 2002). Price increases are reflected in expenditure figures. During 1993–1998, psychotropic drug expenditures rose 462 percent for antipsychotics and 241 percent for antidepressants (NIHCM, 1999). Increasing expenditures for medications have placed already strapped public mental health programs in financial jeopardy. Utilization and Outcomes of Care It is well established that individuals with MI have high rates of morbidity and mortality from comorbid medical illnesses (DHHS, 1999; Sullivan et al., 1999; Cradock-O’Leary et al., 2002). This awareness has prompted concerns that people with comorbid MI-HIV might receive suboptimal HIV care. One early indication was from a nationally representative study finding disparities in patterns of HIV care. While use of needed care was good for many HIV-infected patients, disadvantaged populations—blacks, Latinos, women, the uninsured, and Medicaid-insured—had the least favorable patterns of care (Shapiro et al., 1999). Most of these demographic groups are at higher risk of developing an MI. The only study to have directly assessed problems in HIV care for mentally ill individuals focused on SMI. The study, by researchers at RAND, examined barriers to care,8 problems with hospital care, functional health status, and disability days for nearly 300 patients with SMI-HIV compared with nearly 1,300 patients with HIV alone. The SMI-HIV patients (in Los Angeles and New York City) were more likely than HIV-only patients to have more problems with hospital care, poorer functional status, and more disability days (David E. Kanouse, Personal communication, 2002). The investigators concluded that, in light of these disparities, interventions are needed to enhance HIV care for those with SMI. In an extremely large study from multiple cities, the receipt of mental 8   Study findings regarding barriers to care are reported earlier in this appendix.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White health services and substance abuse services did increase the likelihood of using HIV medical care, of staying in care, and of receiving more medical visits (Ashman et al., 2002). In addition, several types of tailored interventions have been studied that are designed to reduce high-risk sexual behaviors among those with MI-HIV. A 1997 review found that intensive, small-group interventions did produce short-term reductions in high-risk sexual behavior (Kelly, 1997). Subsequent studies have identified effective programs for assertiveness training for women with SMI (Weinhardt et al., 1998), cognitive–behavioral training for men and women (Otto-Salaj et al., 2001), and educational intervention for out-of-treatment cocaine users with depression and anti-social personality disorder (Compton et al., 2000). The problem is that most interventions are costly, labor-intensive, require frequent “booster” sessions, and thus not widely used (Sullivan et al., 1999). In addition, these programs were add-on services rather than attempts at integration of mental health, substance abuse, and HIV care. Integrated care has the potential to be more cost effective. In 1998, the Substance Abuse and Mental Health Services Administration (SAMHSA), in collaboration with several other federal agencies, began a five-year demonstration program to determine the effects of integrated mental health, substance abuse, and HIV/AIDS primary care services on the three major outcomes: treatment adherence, health outcomes, and cost of treatment. Each of the eight study sites approaches integration in different ways, but most use some variation of co-location of services or intensive case management. The results have not yet been reported. CONCLUSIONS This appendix has described a body of literature on the impact of MI on HIV disease. Studies have found that MI increases the risk of acquiring or transmitting HIV by virtue of high-risk behavior or lower adherence to ARV. There are, however, variations in risk depending on symptoms, diagnosis, and other factors. For those with comorbid MI-HIV, studies have found wide-ranging barriers to care, including stigma, cost, inadequate detection of comorbidities, and fragmentation of services. If individuals reach care, their treatment needs are broader and more complex. Physicians may discriminate against mentally ill patients by withholding or deferring HIV therapies because of concerns about nonadherence. This form of discrimination is unwarranted because it relies on group identification, rather than on each patient’s own track record of adherence. All indications are that coordinated or integrated care—for the full range of comorbidities, including substance abuse treatment—is critical for improving adherence with HIV care, controlling the HIV epidemic, and for providing patients with the most comprehensive and effective array of health services.

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