Infection with the human immunodeficiency virus (HIV) is associated with a range of psychosocial and neuropsychiatric complications. While HIV/AIDS has become a manageable chronic disease for many patients, living with HIV/AIDS continues to be a practical and psychospiritual challenge. Persons at highest risk for HIV/AIDS (we use the term HIV/acquired immunodeficiency syndrome [AIDS] to designate the entire spectrum of clinical manifestations of HIV disease, from asymptomatic infection through advanced AIDS) are disproportionately likely to suffer behavioral and mood disorders and to be socially disenfranchised and economically disadvantaged. Once infected, they must contend with a still stigmatized, and if untreated, a progressive medical condition. In addition, many people with HIV have other significant comorbidities, such as chronic hepatitis, psychiatric problems, and/or substance use, which may make adhering to HIV treatment more difficult. Although patients with HIV/AIDS can present with life-threatening neuropsychiatric sequalae of HIV (central nervous system [CNS], opportunistic infections, HIV dementia), most patients’ behavioral concerns are focused on maintaining medication adherence, maximizing quality of life, and managing lifestyle issues.

Human immunodeficiency virus is primarily transmitted through sexual exposure or shared injection drug paraphernalia (sharing needles). Initially, the epidemic was concentrated among gay men in cities; now new cases of HIV infection are disproportionately seen in socioeconomically disadvantaged populations, especially women and men of color. Some patients do not fit “classic” risk factor profiles. For example, a monogamous woman may be infected through her husband who is bisexually active. Although past HIV prevention programs successfully reduced rates of new HIV infections in gay men, incidence of new HIV infection in multiple patient populations is significant. These patient groups include men who have sex with men but who do not self-identify as “gay,” speed users who share straws for intranasal use, teenagers, elders, and women. In the United States, about one-quarter of the over 1 million HIV-positive persons have never been tested and are not aware of their seropositive status. In spite of the great advances in treatment, HIV/AIDS remains underdiagnosed and undertreated in the United States and worldwide.

In 2006, the Centers for Disease Control (CDC) formally modified its HIV screening recommendations from that of focused testing in high-risk groups and in high-prevalence settings to universal screening. In this paradigm, all patients between the ages of 18–64 years are encouraged to be tested as part of routine preventative care, and detailed consent procedures have been modified to an opt in or out of HIV testing as part of routine care. Newer rapid testing procedures allow for patients to receive their results at the time of testing, improving the number of patients who receive their results and facilitating triage for medical follow-up. Evolving HIV treatment paradigms stress early and even universal treatment of HIV-infected patients. Theoretically, “test and treat” strategies will benefit patients by optimizing immune function, and benefit communities by reducing HIV transmission. At the same time, getting HIV-infected patients tested and engaged in long-term treatment is a persistent challenge. “Engagement in care” is emerging as a model in which patients feel connected with their care providers and their medical care institutions, and correlates not only with retention in treatment but also with treatment success.

Integrating HIV screening and HIV prevention counseling into routine health care activities can facilitate this discussion in primary care settings. For example, following discussion of other lifestyle/health-related issues like cigarette smoking and exercise, sexual practice and substance use questions have a practical context. As in all patient interviews, open-ended questions with the use of specific and understandable language are most likely to put the patient at ease and generate accurate information. For example: Are you sexually active with men, women, both, or neither? How about in the past? What, if any, street drugs do you currently use, for example, speed, pot, etc? How about in the past?

The purpose of these screening questions is not only to identify which patients to test but to identify high-risk behaviors that may be modified, for example, through condom use or needle exchange. Thus, HIV testing is paired with HIV prevention counseling, pairing screening with harm reduction education. Harm reduction programs like needle exchange reduce the spread of HIV infection. Substance use, including alcohol, is highly correlated with unsafe sex behaviors, and patients need to be educated about the risk of combining recreational substances and sexual activity. Preexposure prophylaxis is a harm reduction strategy in which persons at high risk for HIV acquisition receive antivirals to prevent HIV infection. While studies document the biological effectiveness of this strategy, many operational challenges limit its widespread implementation.

Because HIV/AIDS is a significant underrecognized and undertreated public health problem in the United States, generalist practitioners in both outpatient and inpatient settings should be competent in screening and prevention. In addition, in an era in which HIV treatment has become simplified, more durable and better tolerated, another important role for the primary care provider is to help evaluate and address barriers to patient’s adherence to treatment. Mental health conditions from preexisting psychiatric disorders like bipolar disorder or from incident conditions like adjustment disorders are common in HIV-infected patients and require active diagnosis and treatment. In addition, cohort studies document a bidirectional relationship between HIV infection and mental health disorders: patients with psychiatric disorders are more likely to engage in high-risk behavior, whereas HIV acquisition can exacerbate mental health disorders.

Overview

Although the course of HIV/AIDS is different for every patient, some common clinical and life events are associated with psychological distress, ranging from mild anxiety and discouragement to feelings of despair and suicide. Although untreated HIV infection is generally fatal, it is now rare for treated HIV patients to die from their infection. However, many “successfully” treated patients may have disabling neurocognitive disorders (mild dementia, neuropathy) profound fatigue, chronic pain, and other disorders. Although the mechanism of some of these symptoms is unclear, it is evident that they are increasingly common. Whether these disorders are due to long-term HIV infection itself, HIV-induced autoimmune sequelae or HIV treatments remains unresolved. However, some HIV-infected patients are asymptomatic and able to lead normal lives: working full time, completing school, and having children.

Women and men with HIV benefit from empathic relationships with their medical providers and from connections with other HIV-positive people. For example, in adherence studies of adult women with HIV, a robust predictor of medication compliance was the patient’s perception of her relationship with the clinician. In addition, women who meet other women with HIV (through retreats, support groups, newsletters) are more likely to be medication adherent and to keep medical appointments.

In many urban areas, support groups exist for HIV patients from diverse risk groups (e.g., patients in recovery, gay men with HIV, and so on). In more rural and underserved areas, public health departments may offer case management services for people with HIV. In some cases, these case managers may be the only local source of information, clinician referral, and psychosocial support for patients.

For most patients, being told that they are infected with HIV is traumatic. Practitioners should anticipate this distress and counsel patients with up-to-date information, and arrange referrals to appropriate HIV care sources, including medical providers and support groups. Web sites can be excellent resources and are best complemented by local support services. Patients who test HIV positive may experience and express a variety of emotional responses. In general, practitioners should allow the patient to express his or her feelings, and should actively listen to the expressed emotions in a nonjudgmental manner. Effective use of empathic statements such as: “I can understand how difficult this must be for you” and “We can work on this together” can help the patient to feel a little less overwhelmed and helpless.

Clinicians should be alert to the potentially wide range of emotional responses expressed by patients and then check their understanding with a reflective statement such as “You seem quite saddened by this news.” Often, the emotion that unexpectedly wells up in the physician (e.g., sadness, anger, panic) may be indicative of what the patient is feeling. Physicians can use their own emotions as diagnostic information to gain insight into the patient’s feelings (see Chapter 2, “Empathy” and Chapter 3, “Giving Bad News”).

Paradoxically, although many persons seek testing to relieve the uncertainty of not knowing their status, testing positive for HIV can create additional uncertainty. Suddenly, they are confronted with not knowing how long they will remain well, who will care for them if they become ill or debilitated, how they will support themselves, and many other unknowns. The physician can help the patient cope with this sudden uncertainty by providing both information and emotional support. It may be helpful to say: “Many people who test positive are concerned because they do not know what to expect—is this true for you?” Some patients are comforted by the physician’s acknowledgment that they are the same person they were before the test, but now they possess new information about their health that can be addressed. For example, the clinician can say: “You are the same person today as you were yesterday, only now you know that you are HIV-positive. It is important that you have this information so that we can now work together to keep you healthy.” Patients should be given up-to-date information about treatment, prognosis, and other medical data, especially if they request it. It has been shown that distress can be decreased if patients are informed about their disease and the treatment options.

Other emotions that the seropositive patient may express include anger, fear, denial, and depression. Patients may feel angry for many reasons: about having an incurable illness, about perceived loss of control, about current or future discrimination. Some patients are angry at themselves for having become infected or at the partner who may have transmitted the virus to them. Allow patients to express their anger and frustration; often the anger dissipates with empathic listening.

Fear is often a less evident emotion and may need to be elicited with questions such as: “What are your major fears about HIV?” and “From your experience with other people with HIV, what kinds of things are most frightening for you?” These fears should be acknowledged as legitimate, and when possible, the physician can help the patient to deal concretely with those problems that can be anticipated and ameliorated. It may be helpful to have the patient make two lists dividing the current or anticipated problems into those that are to some extent controllable and those that are basically uncontrollable. The controllable problems can be addressed through specific problem-solving strategies, and the clinician should focus on emotion-handling skills for the uncontrollable problems and emotions that may arise (see Chapters 1 and 2).

Denial is a common response to the news of a positive HIV test. For some patients this initially may be a healthy way of not allowing themselves to feel overwhelmed. In fact, some people may need several months to a year to come to terms with the diagnosis. If, however, denial leads patients to harm themselves (e.g., by refusing potentially life-enhancing or life-extending treatment) or to harm others by exposing them to HIV, the physician should challenge the denial. This can be done gently, for example, by saying: “I can understand why you would wish that you were not HIV infected, but you are, and we need to deal with it.” Such statements may need to be repeated at subsequent visits until the patient is ready to accept the fact and consequences of their seropositive status.

Depression and anxiety are also common responses in persons who test positive for HIV. The clinician should assess the severity and duration of these symptoms to determine the appropriate treatment. Some studies have found that the risk of suicide is increased in the 3–6 months following a serologic diagnosis, so all patients should be screened for reactive depression and suicidal ideation. It is best to use direct, open-ended questions such as: “How are you handling your HIV diagnosis?” and “What fears or concerns do you have?”

In the weeks and months following a positive test, the clinician can assist patients in coping more effectively by assessing their social support system. This can be done by asking: “Who are you talking to about your concerns and issues?” If patients are isolated, provide them with phone numbers of local AIDS service organizations. Family members can also provide valuable support, but often HIV-infected people avoid seeking their help, or the family has previously rejected them because of their lifestyle. Clinicians can help patients by offering to have family or significant others attend medical appointments, and by integrating supportive others into the treatment team.

Managing Substance Use

Active substance use is a risk factor for HIV acquisition, for medical nonadherence, and for reexposure to HIV through unsafe sex and needle sharing. Many cases of new HIV infection are correlated with unsafe sex during alcohol or drug binges. Patients in drug and alcohol recovery have been shown to be able to achieve good adherence. All patients with current or past drug or alcohol problems should be screened for comorbid psychiatric disorders.

Methadone has significant interactions with nonnucleoside reverse transcriptase inhibitors (NNRTIs) and protease inhibitors (PIs). These interactions are not always predictable (e.g., one agent, nevirapine, can both raise and lower methadone levels). When antiviral drugs are changed, patients should be monitored for both methadone intoxication and withdrawal, and their methadone treatment center informed of the need to adjust the methadone dosage.

Many street drugs, for example, heroin and ecstasy, are metabolized by cytochrome P450 3A4 and 2D6 enzymes, enzymes that may be downregulated by a PI booster, ritonavir and cobicistat, an integrase booster. Inadvertent drug overdoses have occurred due to these interactions. Patients who continue to use street drugs and who are on antiretroviral therapy should be counseled in a harm reduction model about these potentially fatal interactions.