HIV and AIDS
Despite its familiarity, acquired immunodeficiency syndrome (AIDS) has been recognized as a clinical entity only since 1981. In slightly more than a quarter-century, AIDS has grown from a clinical curiosity to a “pandemic [that is] undoubtedly the defining public health crisis of our time.”1 Although, in developed countries, the availability of highly active antiretroviral therapy (HAART) and comprehensive treatment has converted human immunodeficiency virus (HIV) infection to a chronic disease,2 it remains a terminal disease throughout most of the developing world. Because there is neither a cure nor a vaccine and because primitive public health measures in many parts of the world are inadequate to provide proper treatment or to prevent its spread, HIV/AIDS promises to become a greater public health threat during the 21st century, primarily in the poor and developing world.
The human immunodeficiency virus, transmitted from an infected person, causes AIDS.3 Disease transmission requires intimate exposure to an infected person’s body fluid, particularly blood, semen, and cervicovaginal secretions. HIV transmission occurs most often through heterosexual or homosexual intercourse, intravenous injections performed with shared needles, transfusions of infected blood and blood products, and from mother to fetus or neonate.4
A “clinical latent period” of 4 to 12 years separates the acute HIV infection and the conversion to AIDS. Although few outward symptoms are present during the latent period, the peripheral blood CD4+T-lymphocyte count becomes progressively depleted. In untreated people, the duration of the latent period varies as a function of the baseline CD4+count and HIV viral load in combination with host genetic and immunological factors.5 The latent period may be shorter in cases of massive viral infection from blood transfusion. The latent period also may be longer. There are documented cases of persons infected with HIV for decades who have developed neither declining CD4+counts nor AIDS.6
AIDS can be diagnosed in two ways: (1) by the presence of HIV antibodies and a peripheral blood CD4+cell count of <200 cells/μL; or (2) by HIV seropositivity and evidence of one or more “indicator diseases,” such as Pneu-mocystis carinii pneumonia, Cryptococcus neoformans meningitis, Toxoplasma gondii encephalitis, Kaposi’s sarcoma, primary central nervous system lymphoma, pulmonary tuberculosis, recurrent bacterial pneumonia, or cervical cancer among others.7
As of January 1, 2006, more than 25 million persons worldwide already had died of AIDS and over 40 million persons had HIV infection or AIDS, of whom approximately 1.1 million were residents of the United States. The epidemic remains worst in sub-Saharan Africa and other tropical regions of the developing world where infection rates continue to rise far more rapidly than in the developed world and where the prevalence of HIV infection in several countries exceeds 25%. Of the 4.3 million new HIV cases occurring worldwide in 2006, over 95% occurred in developing countries. In the developing world, HIV spreads primarily through
heterosexual intercourse whereas in the United States and Europe, a major mode of HIV transmission is men who have sex with men. The HIV epidemic in the developing world is further accelerated by lack of preventive services, social stigma, government denial, labor migration, concurrent sexual partnerships, gender inequalities, limited availability of condoms, and lack of circumcision.8 HIV infection is the fourth leading cause of death worldwide, resulting in 2.9 million deaths in 2006.9
heterosexual intercourse whereas in the United States and Europe, a major mode of HIV transmission is men who have sex with men. The HIV epidemic in the developing world is further accelerated by lack of preventive services, social stigma, government denial, labor migration, concurrent sexual partnerships, gender inequalities, limited availability of condoms, and lack of circumcision.8 HIV infection is the fourth leading cause of death worldwide, resulting in 2.9 million deaths in 2006.9
The Centers for Disease Control and Prevention (CDC) estimated that as of January 1, 2006, over 988,000 cumulative cases of AIDS had occurred in the United States with over 550,000 AIDS-related deaths. The actual figure may be higher because of inaccurate diagnoses on death certificates. By January 1, 2006, over 438,000 persons in the United States were living with AIDS, there were over 46,000 new HIV infections annually, and over 17,000 people died annually from AIDS. Approximately one-fourth of the 1.04 to 1.19 million Americans infected with HIV as of January 1, 2004, were unaware of their infection.10 In 1992, AIDS became the leading cause of death in the United States in men between the ages of 25 and 44 years. African-Americans and Hispanic-Americans are affected disproportionately, with infection rates eight and three times higher respectively than in Caucasian-Americans.11 In 2005, AIDS patient ethnicity in the United States had the following composition: African-American 48%, Caucasian 28%, Hispanic 18%, and other ethnicity 6%.12
Beginning in 1996, the annual death rates from HIV in the United States began to fall as a consequence of widespread treatment of AIDS patients with HAART.13 The trend of increased survival times also has been observed in other parts of the developed world, including western Europe and Australia. Decreasing AIDS death rates in the developed world are attributed primarily to the availabilityof antiretroviral drugs and secondarily to improved prophylaxis against opportunistic infections, improved overall treatment of the HIV patient, improved access to health care, post-exposure prophylaxis, and decreased numbers of new HIV cases resulting from successful preventive efforts.14
Unfortunately, this promising trend is conspicuously absent in the developing world where the large majority of HIV patients reside and where most new infections occur. The death rates from HIV in sub-Saharan Africa and other parts of the tropical developing world continue to rise, largely because of poverty and its consequences, particularly the inability of HIV patients to afford antiretroviral, antibacterial, and antifungal drugs, social and cultural factors, and the absence of an effective public health infrastructure to implement preventive efforts and provide basic medical care.15
AIDS can be considered as a neurological disease although HIV is not classified as a neurotropic virus like rabies or poliovirus. Although HIV does not directly invade neurons, it is considered “neuroinvasive” because, when it enters the body, it infects the paren-chyma of the brain and spinal cord and the cerebrospinal fluid. Infected macrophages and other monocytes are believed to carry the virus to the nervous system.16 Primary parenchymal invasion of the brain and spinal cord produces the AIDS-dementia complex and HIV myelopathy.
Many infections, neoplasms, and other secondary complications of AIDS affect the nervous system. Thus, neurologists may examine HIV/AIDS patients to diagnose and treat seizures, headaches, dementia, confusion, stupor, coma, stroke, meningitis, or movement disorders, and may diagnose HIV infection of the brain and spinal cord, cryptococcal meningitis, toxoplasma encephalitis, primary central nervous system lymphoma, progressive multifocal leukoencephalopathy, and various myelo-pathies, radiculopathies, neuropathies, and myopathies.17 As many as two-thirds of adults and 90% of children with AIDS eventually develop overt, symptomatic neurological disorders.18
Patients with HIV infection pose challenging ethical, social, and legal dilemmas.19 A gradual consensus has emerged over the past two decades that has rendered some of the original issues less controversial. The evidence for this consensus is that scholarly debate over them has largely ceased. However, the resolved dilemmas have been superseded by more urgent
international ethical issues. I discuss the historical account of the original ethical dilemmas because understanding how a consensus over them was achieved offers important lessons that may help to resolve emerging ethical problems.
international ethical issues. I discuss the historical account of the original ethical dilemmas because understanding how a consensus over them was achieved offers important lessons that may help to resolve emerging ethical problems.
The ethical issues in patients with HIV/AIDS during the early stage of the pandemic challenged decision makers in our society to re-examine the fundamental assumptions underlying the care physicians and nurses give AIDS patients and the extent of the patients’ rights. What are the professional duties of physicians and nurses to treat AIDS patients if they risk becoming infected accidentally? Under what circumstances can or should physicians breach their duty to maintain a patient’s confidentiality and privacy by disclosing HIV status to protect his sexual partners from becoming infected? Who should be screened for HIV infections? Is HIV an exceptional disorder requiring a higher level of confidentiality than other diseases? In what ways can or should the civil rights of AIDS patients be compromised to halt the spread of the disease? Should physicians and other health-care workers be screened routinely for HIV? How much claim do patients dying with AIDS have on scarce medical resources, such as intensive care units, cardiovascular surgery, cardiopulmonary resuscitation, and hemodialysis? Should the scientific and public safety rules ordinarily required for the testing of new pharmaceuticals be relaxed for “compassionate” reasons in the treatment of AIDS patients?
A newer set of ethical questions stems from the global pandemic of HIV sweeping the developing world and causing untold suffering and early death, destroying families, and ruining economies. What is the ethical duty of the developed world to try to halt the epidemic by helping to provide therapy to patients in the developing world?20 Is the global inequality of life expectancy between the developed and developing world resulting from HIV/AIDS an ethical issue?21 To what extent should assistance be provided by governments and by private citizens? To what extent can the developing world dictate safe practices to members of the developing world that they may resist for cultural reasons? Does research using human subjects with HIV/AIDS performed in the developing world require equal, greater, or lesser human subject protection than in the developed world?
IMPEDIMENTS IN THE PHYSICIAN-PATIENT RELATIONSHIP
The relationship between physicians and patients with HIV/AIDS may become strained by physicians’ fear, prejudice, hatred, and burnout. The fear of contracting HIV from the patient during medical care can negatively affect a physician’s attitude toward the patient. Physicians may harbor prejudice and hatred, blaming gay men or intravenous drug abusers with AIDS for having engaged in avoidable unhealthy behaviors. Finally, physicians may develop burnout from the rigors of providing continuous care to a dying patient.22
Is a physician’s fear of contracting AIDS from an infected patient rational? Physicians and other health-care workers who treat HIV-infected patients risk being injured from contaminated needles or other sharp instruments or being exposed to blood or other bodily fluids through their mucous membranes. Although this risk has been estimated, its exact extent remains imprecise because the rates of HIV-seropositivity in patients vary in different communities and the chance of being injured in practice differs among various medical specialists. The risk to most physicians who employ universal precautions is extremely low in the absence of a needlestick accident.
The CDC estimated that a health-care worker has a 0.003 annual risk of becoming HIV-seropositive as the result of an accidental injury from a hollow-bore needle containing HIV-seropositive blood.23 Physicians who do not perform surgery suffer an accidental needlestick or other sharp injury about once every two years, and surgeons suffer them about four times as often. If we assumed that all needles and sharps were contaminated with HIV-seropositive blood, the annual risk of seroconversion would be approximately 0.0015 for a generalist or internist and would be about 0.006 for a surgeon.
These figures are artificially high because not all needles and sharps involved in accidents
are contaminated with HIV-seropositive blood and not all blood-contaminated sharps carry equal risks of transmitting HIV. For example, transmission of HIV has been documented in injuries from hollow-bore needles used in venipuncture but not from solid needles, such as those used for surgical suturing. In a case-control study, Denise Cardo and colleagues identified the following risk factors for needlestick HIV seroconversion: deep injury, injury with a device visibly contaminated with the infected patient’s blood, injury occurring during attempted arterial puncture or venipuncture, and exposure to a source patient who died within two months of AIDS.24 For most physicians who treat relatively few HIV-positive patients, the risk is minuscule. For example, if an internist’s practice consisted of 5% HIV-seropositive patients, his annual risk for accident-induced seroconversion would be no higher than 0.000075. The risk can be lowered further by immediate post-exposure chemoprophylaxis with antiretroviral drugs which are highly effective in preventing HIV seroconversion if administered to exposed caregivers within 48 hours.25
are contaminated with HIV-seropositive blood and not all blood-contaminated sharps carry equal risks of transmitting HIV. For example, transmission of HIV has been documented in injuries from hollow-bore needles used in venipuncture but not from solid needles, such as those used for surgical suturing. In a case-control study, Denise Cardo and colleagues identified the following risk factors for needlestick HIV seroconversion: deep injury, injury with a device visibly contaminated with the infected patient’s blood, injury occurring during attempted arterial puncture or venipuncture, and exposure to a source patient who died within two months of AIDS.24 For most physicians who treat relatively few HIV-positive patients, the risk is minuscule. For example, if an internist’s practice consisted of 5% HIV-seropositive patients, his annual risk for accident-induced seroconversion would be no higher than 0.000075. The risk can be lowered further by immediate post-exposure chemoprophylaxis with antiretroviral drugs which are highly effective in preventing HIV seroconversion if administered to exposed caregivers within 48 hours.25
For at-risk physicians whose practice consists of higher percentages of HIV-seropositive patients, particularly if they perform procedures, the risks become more significant. If a surgeon’s practice consisted of 50% HIV-seropositive patients, his annual risk for accident-induced seroconversion would be as high as 0.003. This is a highly significant risk for contracting what could become a fatal disease. To place these risk data into perspective, the annual risk of death faced by firefighters is approximately 0.002.26
Physicians have responded to the real and perceived risk of HIV infection by devising several strategies. The most rational response has been to adhere strictly to protocols of universal precautions, such as appropriate gloving, shielding, and recapping of needles after injection. Some physicians also formulated regulations and practices that restricted HIV-seropositive patients from undergoing certain procedures in which the risk of HIV transmission is great. Hemodialysis, plasma exchange, cardiovascular surgery, orthopedic surgery, and neurosurgery are examples of such high-risk procedures. This practice becomes of questionable morality, however, when the reason to limit or prohibit these treatment modalities in AIDS patients is disguised misleadingly as “medical appropriateness” or “medical judgment.”
Denial of certain forms of therapy for HIV-seropositive patients should be based on the real risk to the health-care provider, without being a covert action. Each therapeutic modality should be selected on the basis of its efficacy in a given clinical situation. Although the risks of transmission from each therapeutic modality are not irrelevant, they should be considered honestly and directly. Conscious attempts should be made to reduce the risks. If the risks remain too great after reasonable attempts to minimize them, physicians can refuse to perform the therapeutic procedure, although the actual reason should be cited.
In a recent review of performing surgery on HIV patients, Darin Saltzman and colleagues pointed out that, in the past 20 years, restrictive practices have nearly ceased because of improved surgical outcomes, more accurate data showing a low risk to the surgical team, more uniform use of universal precautions, and the availability of effective post-exposure chemoprophylaxis.27 Greater health-care worker risk in treating HIV patients exists in developing countries where HIV prevalence rates are high and where disposable syringes, sterilized equipment, universal precautions supplies, and post-exposure prophylaxis medication are less available.28
Prejudice and hatred can confound the physician-patient relationship if physicians blame patients, such as gay men or intravenous drug abusers, for contracting AIDS because of risky practices. Patients with AIDS from these groups have been stigmatized because of their homosexuality or drug abuse, and may be unfairly perceived as having diminished social value and even as a threat to society.29 Unfortunate public proclamations by a few religious leaders that AIDS represents divine retribution for sinful behavior have exaggerated this stigma.30 Further, a disproportionate percentage of HIV/AIDS patients are already disenfranchised by society because of their minority and socioeconomic status.
The extent to which physicians expressed prejudicial attitudes toward gay male AIDS patients was revealed in a case vignette survey. The physicians were presented with two identical case histories, the only difference being that one was a homosexual man with AIDS and the other a heterosexual man with leukemia. The responding physicians were questioned about their feelings and attitudes after reading the cases. Analysis of these responses disclosed that significantly more physicians blamed the AIDS patient for his disease and felt less sympathy for him, less willingness to talk to him, less interest in attending a party if he were present, and less willingness to work in the same office with him.31 It requires little imagination to extrapolate the damaging effects that these negative attitudes have on a physician’s relationship with an AIDS patient.
In a remarkable but disheartening book entitled Getting Rid of Patients, Terry Mizrahi graphically described the negative attitudes and unprofessional behavior of resident physicians when they were faced with the obligation to care for patients they found unpleasant, hateful, or uninteresting. One such group was composed of patients whom the residents blamed for their condition. Another comprised patients with chronic illnesses whom the residents believed they could not cure. The anger, frustration, depersonalization, and outright discrimination these residents exhibited in their clinical encounters with these patients illustrates the damage that prejudices can wreak on the physician-patient relationship.32
Physician burnout during the chronic care of AIDS inpatients also exerts a negative impact on the physician-patient relationship. In the pre-HAART era when a diagnosis of AIDS was a death sentence, residents on medical wards containing many AIDS patients often cared for severely ill and inexorably dying patients largely of their own age. This care required engaging in a series of emotionally stressful battles in the course of treating acute, life-threatening complications of AIDS when they knew they would ultimately lose the war. Repeated episodes of this frustrating and seemingly futile experience led to physician burnout, similar to that seen in physicians and nurses on inpatient oncology and bone marrow transplantation wards. Burnout is characterized by depression, emotional blunting, overwhelming sense of failure, and nihilistic attitudes toward therapeutic endeavors. A quin-tessential symptom that health-care workers experience with burnout is losing the sense of caring about the patient.33 When physicians have burnout, it is highly unlikely that they can sustain a successful physician-patient relationship.34 Fortunately, these problems are much less common in the HAART era because of markedly increased life expectancies.
There is now a legal remedy in the United States for unjustified discrimination against patients with HIV or AIDS. In their 1998 ruling in Bragdon v. Abbott, the U.S. Supreme Court found that the American With Disabilities Act of 1990 provided antidiscrimination protection to citizens infected with HIV because HIV infection counts as a disability.35 Although judicial rulings may not change people’s prejudicial attitudes or erase their negative stereotypes, Bragdon v. Abbott clearly provides a legal remedy for overt and unjustified instances of discrimination against patients with HIV in housing, employment, and education.
THE PHYSICIAN’S DUTY TO TREAT
Do physicians have the right to refuse to treat an HIV/AIDS patient or do they have a professional duty to treat the patient even at their own personal risk? This question has engaged much thoughtful discussion since the risk to physicians was first described. The issue has been approached from several perspectives. For example, historical accounts of physicians’ behaviors and duties in previous epidemics have shown some who have conducted courageous acts of dedication and altruism, and some who have performed acts of self-protection and cowardice.36 Other scholars have emphasized that physicians as professionals have ethical duties to treat the ill that include assuming risks of incurring personal harm.37 Medical societies’ codes of professional conduct have formalized duties of dedication to sick patients.38 The physician’s legal duty to treat illness has been analyzed,39
and virtue-based theories of physician behaviors have been cited to demand that physicians show courage in the face of danger.40 Each of these perspectives sheds some light on the answer.
and virtue-based theories of physician behaviors have been cited to demand that physicians show courage in the face of danger.40 Each of these perspectives sheds some light on the answer.
Historians have recorded physicians’ behaviors during epidemics such as the Black Death of Europe in the 14th century, the Great Plague of London in the 17th century, and the yellow fever epidemic of Philadelphia in the 18th century. During each of these epidemics, some dedicated physicians remained to care for the sick and dying, greatly risking their own health and lives, while others fled. Fleeing physicians provided several justifications for their behavior: (1) the duty to care for their patients who also were fleeing the city; (2) the duty to maintain their own health in order to treat other patients; and (3) the responsibility of self-preservation, which compelled them not to carry out suicidal missions.41 Of course, these justifications may be viewed simply as self-serving rationalizations motivated by the primary goal of self-protection.
Ezekiel Emanuel explained the fundamental reason why physicians have a duty to treat AIDS patients. Medicine, as a learned profession and not a trade, creates binding ethical obligations on its members. Were medicine simply a commercial enterprise whose objective was the accumulation of wealth, no such binding obligations to others would exist. Medicine, however, is a learned profession dedicated to the moral ideal of promoting the welfare of patients as its highest professional ethic, not the betterment of its practitioners’ financial status. When a person enrolls, trains, and becomes socialized into the profession of medicine, he takes an explicit and implicit oath to uphold this commitment to treat the sick, even at some risk to his own health.42
Codes of medical professional conduct provide physicians with the freedom to decide whom to treat, within bounds. (See chapter 3.) To the best of their ability, physicians should treat all patients in an emergency situation. They are neither required nor should they be expected to provide treatment that lies outside the scope of their training. However, if physicians possess the requisite training, it would be unethical to refuse to treat HIV patients solely on the basis of their diagnosis because prejudicial behavior on these grounds counts as unjustified discrimination.
How does the concept of personal risk to the physician fit into this discussion? An irreducible degree of personal risk is implicit in the treatment of sick patients. Physicians over the years have contracted countless cases of infectious diseases from their patients, including plague, tuberculosis, hepatitis, leprosy, and the common cold. The assumption of a certain degree of risk in acquiring infectious diseases is intrinsic to the medical and nursing professions. The willingness to enter these professions entails the willingness to endure these risks.43
Yet there should be a reasonable limit to such risks. No one should require physicians or anyone else to endure risks in their practices that are tantamount to suicide. Extreme risks can be assumed voluntarily as a supererogatory act, but they should not be mandated as a professional duty. At what degree of personal risk do physicians lose their professional duty to continue caring for patients?
The annual risk of physicians acquiring HIV from their patients in most settings has been quantified as less than 0.001. In general, this risk is not sufficiently high to justify a physician’s refusal to care for an HIV/AIDS patient because the risk is not excessive by accepted social standards in other professions entailing personal risk. For surgeons whose practices consist largely of HIV/AIDS patients, a more significant danger exists. In this case, it is reasonable for physicians and hospital administrators to devise mechanisms to lower the risk, such as arranging for a group of surgeons to share equally in the treatment of high-risk patients. Pregnant physicians whose clinical practice could put them at significant risk of HIV seroconversation should be suspended from this duty to treat because maternal infection produces a 50% chance of fetal infection.44 All health-care workers should be thoroughly trained in universal precautions to which they should adhere at all times and they should receive prompt post-exposure chemoprophylaxis.45
Medical societies have concurred unanimously that physicians have an ethical duty to treat HIV/AIDS patients. This duty has been affirmed in formal pronouncements by a
number of societies, including the American Medical Association, the American College of Physicians, the Infectious Diseases Society of America, the American Academy of Neuro-logy, the American College of Obstetrics and Gynecology, and the Surgeon General of the United States.46
number of societies, including the American Medical Association, the American College of Physicians, the Infectious Diseases Society of America, the American Academy of Neuro-logy, the American College of Obstetrics and Gynecology, and the Surgeon General of the United States.46
PRIVACY AND CONFIDENTIALITY
The laudable goal of maintaining the privacy and confidentiality of HIV/AIDS patients becomes an ethical dilemma if other persons are harmed in the process. The privacy rights of the patient and the right of third parties in jeopardy of harm from the infected patient may conflict in two related areas: providing consent for HIV testing and the notification of a sexual partner without the patient’s consent. Over the past decade, the aura of exceptionalism for HIV testing that required an added layer of confidentiality protection is in the process of being reversed with the introduction of programs of routine screening and mandatory partner notification.
HIV Testing
When the serum test for the HIV antibody first became available and was validated in 1985, a consensus emerged that the test should be performed only with a patient’s informed and voluntary consent, except in a few well-defined circumstances.47 Mandatory screening without consent was permitted only for the following groups: prospective blood, organ, or tissue donors; military personnel; prisoners; and life insurance applicants.48 Hospitals drafted rules to protect the confidentiality of patients who were tested to safeguard them from harm. These rules required a patient’s written informed consent before the test could be performed.
The justification for classifying HIV infection an “exceptional” disease that required a level of consent and confidentiality exceeding that necessary in other conditions was to prevent the feared outcomes of stigmatization and unjustified discrimination against the patient. Harms to HIV patients, including infringement of liberties and outright discrimination in employment, housing, and education, were amply recorded in the early days of the pandemic.49 These harms could be prevented by requiring voluntary consent and absolute confidentiality of HIV testing.50 The public health argument was widely accepted that a democratic society should favor voluntary rather than mandatory public health programs for disease control.51 HIV was thus granted an exceptional status requiring explicit, written consent and extreme confidentiality of test results in medical records.
Serological data initially supported selective HIV screening. Mandatory HIV screening of low-risk populations was regarded as undesirable because of the relatively high rate of false-positive results in comparison with those obtained from screening high-risk populations.52 Both serum tests for HIV—the enzyme-linked immunosorbent assay (ELISA) and the Western blot test—have a very high sensitivity and specificity for detecting HIV antibodies (specificities of 0.998 and 0.994, respectively), but, according to Bayes’ Theorem, their positive predictive value depends on the prevalence of HIV in the population screened.
When both tests are used, the false-positive rate has been estimated to fall between 0.0001 and 0.00001.53 A false-positive rate of 0.0001 would be perfectly acceptable for a screening test if the population screened had a disease prevalence of 0.1, because there would be only one false positive for each 1,000 true positives. But the same false-positive rate would be unacceptably high if the population screened had a disease prevalence of 0.00003, because the number of false positives and true positives would be about equal. Thus, for example, the positive predictive value of a positive HIV serology in a homosexual man, intravenous drug abuser, or woman prostitute is 0.999, but it is only 0.647 in a woman who is a first-time blood donor with no HIV risk factors.54
There was an early consensus among scholars and public officials that screening high-risk patients was valuable, but routine screening was rejected by most institutions and in most jurisdictions. Even in the earlier phase of the pandemic, some commentators advocated voluntary screening of all patients on hospital
admission if they lived in communities with high seroprevalence rates. In this way, hospital inpatients, who probably represent a high-risk group, could receive immediate treatment following diagnosis.55 In this spirit, the CDC recommended that hospitals treating patients in communities with high rates of HIV infection should offer voluntary HIV serum testing and counseling to all patients aged 15 to 54.56 This policy seemed justified by the results of a subsequent study showing that mandatory inpatient HIV testing was not cost-effective unless the hospital seroprevalence rate exceeded 1%.57 However, subsequent studies performed in the HAART era showed that HIV screening was cost-effective even in relatively low prevalence populations.58 These data helped spur the CDC to abandon their longstanding selective policy and to advocate broad routine screening (see below).
admission if they lived in communities with high seroprevalence rates. In this way, hospital inpatients, who probably represent a high-risk group, could receive immediate treatment following diagnosis.55 In this spirit, the CDC recommended that hospitals treating patients in communities with high rates of HIV infection should offer voluntary HIV serum testing and counseling to all patients aged 15 to 54.56 This policy seemed justified by the results of a subsequent study showing that mandatory inpatient HIV testing was not cost-effective unless the hospital seroprevalence rate exceeded 1%.57 However, subsequent studies performed in the HAART era showed that HIV screening was cost-effective even in relatively low prevalence populations.58 These data helped spur the CDC to abandon their longstanding selective policy and to advocate broad routine screening (see below).
Prior to the 1990s, asymptomatic HIV-seropositive patients who were identified early benefited from being followed medically at intervals and from receiving preventive counseling on how to halt the spread of HIV to others. However, the identification that an asymptomatic patient was HIV-seropositive could be perceived as a social liability because the patients could be unjustifiably discriminated against in employment, education, or housing. These two opposite effects were generally perceived as more or less balancing each other; therefore, the patients themselves were permitted to make the decision about whether they would undergo early testing.
This balance has been disturbed now that there is compelling evidence that patients receive health benefits by early determina-tion of HIV seropositivity. Patients found to be infected with HIV, before it has pro-gressed to AIDS, can undergo preventive treatment for infectious diseases that later could become florid and difficult to treat. Tuberculin tests can be performed on HIV-seropositive patients before they become anergic, and inactive tuberculosis can be eradicated to prevent its activation later in the course of AIDS. Similarly, before anergy occurs, HIV-positive patients can be immunized against Haemophilus influenzae, pneumococcus, and hepatitis A and B. Furthermore if identified in a timely fashion, life-saving prophylactic treatment can be given to prevent infection with Pneumocystis carinii, Mycobacterium avium complex, and Toxoplasma gondii, among others. Further, patients can be screened for common complicating co-infections such as syphilis, gonorrhea, chlamydia, viral hepatitis and human papilloma virus.59
A major benefit of early HIV diagnosis is the early institution of HAART. HAART dramatically prolongs life expectancy of patients with AIDS, and earlier institution of HAART prolongs life in comparison to HAART started during HIV-related immunodeficiency.60 One reason for this effect is the prevention of AIDS-related opportunistic infections.61 Moreover, by lowering the HIV viral load, HAART can prevent transmission to uninfected sexual contacts of patients on therapy.62 Thus, the benefits of early diag-nosis of a patient’s HIV-seropositivity now clearly exceed its harms.
In response to recent recommendations from the United States Preventive Services Task Force63 and the publication of cost-effectiveness data from the HAART era showing benefits of HIV screening in low-risk situations,64 in September 2006, the CDC issued a sweeping revision of its earlier testing guidelines. Whereas the CDC previously recommended routine HIV testing only for persons at high risk or for persons in health-care environments with high seroprevalence rates, the new CDC guidelines recommended routine HIV screening for all persons aged 13 to 64 years irrespective of risk factors, HIV seroprevalence, or other factors.65 The CDC policy contains an “opt-out” provision that permits patients to refuse HIV testing, but its default mode is to permit testing in the absence of explicit refusal.66 No longer is there a requirement for the patient to sign a separate consent; general consents are sufficient. Commentators have pointed out that the new CDC policy is evidence of the “end of HIV exceptionalism” in which HIV testing now is considered to be identical to that of any other diagnostic testing.67 State and local policy-makers now must decide whether and how to change existing laws to incorporate this recommendation.
The new CDC guidelines also have impacted on approaches to formerly contentious HIV ethical and legal consent issues. One important issue is whether HIV testing ethically can be conducted on critically ill patients from whom consent cannot be obtained. The new CDC guideline will support hospitals in the design of policies permitting clinicians to test critically ill patients for HIV without explicit consent when the physician determines that testing is likely to alter the patient’s diagnostic or therapeutic management in a meaningful way.68 A second issue is whether patients can be compelled to undergo HIV testing after a health-care worker caring for the patient has sustained a needlestick injury.69 Whereas most patients readily consent, I have performed ethics consultations in instances in which consents were not given or possible. In one case, the patient refused testing. In the second, the patient died and post-mortem testing was requested. Hospital lawyers were divided on the question of whether state law banned post-mortem HIV testing without prior consent. In the new paradigm of non-exceptionalism, these questions would be easier to resolve because the elevated standard of explicit consent demanded by HIV exceptionalism no longer would be required.
I believe that the CDC revision will facilitate an appropriate revision of protective laws that have overprotected patients at the risk of health-care workers. A strong argument can be made that health-care workers suffering needlestick injuries have a right to know if they have been exposed to HIV and other pathogens. They should not be forced to undergo the risks of chemoprophylaxis and worrying because laws enacted to protect patients from discrimination have unreasonably interfered with the appropriate medical care of health-care workers.
Partner Notification
Until the mid 1990s, the law in the United States was curiously ambivalent regarding public health surveillance of HIV and AIDS. Beginning in 1983, the law mandated that AIDS be reported in all states, but there was no similar uniform mandatory HIV reporting. Throughout the 1980s, most states did not classify HIV infection as a sexually transmitted, communicable disease; thus, the sexual contacts of HIV-seropositive patients without AIDS were not traced systematically. Partner notification was considered as an entirely voluntary pursuit.70
This seemingly paradoxical situation was largely the result of the influence of politically well-organized gay organizations that understandably feared that mandatory HIV reporting and partner notification laws could compromise their privacy and confidentiality and lead to a series of discriminatory practices. Thus, HIV infection without AIDS became an exception to the public health rules governing other sexually transmitted diseases. Throughout the 1980s, medical groups attempted unsuccessfully to have HIV classified as a sexually transmitted, communicable disease.71
Public attitudes about HIV as an “exceptional” disease began to change in the early 1990s with the publication of data showing that HIV-seropositive patients without AIDS benefited directly from early comorbid disease prevention and antiretroviral treatment. When these data became widely publicized, the organized opposition to reporting the HIV-positive status of patients began to diminish. Thereafter, both the number of states requiring that HIV infection be reported by name and the number permitting or requiring partner notification increased.72 A 1999 review found 31 states with laws mandating that public health officials be notified of positive HIV status with patients’ names.73 Contrary to fears, the introduction of mandatory reporting by name did not diminish the use of voluntary HIV testing in publicly funded programs.74 The current public health regulation trend to increasingly require HIV patient reporting by name has been described as the social change “from exceptionalism to normalism.”75 Some scholars have argued that only a national HIV surveillance system can adequately monitor the epidemic, and they have proposed a model national system.76
Voluntary partner notification schemes have had mixed results.77 In the only randomized trial undertaken, the responsibility for partner notification was left to the index
patient in one group and to the health-care provider in the other. Despite a state law that required the HIV-infected patient to notify his partner(s), the investigators found that index patients were unsuccessful in doing so whereas public health counselors were highly effective.78 A successful partner notification program run by public health workers has been in effect in Sweden since 1985.79
patient in one group and to the health-care provider in the other. Despite a state law that required the HIV-infected patient to notify his partner(s), the investigators found that index patients were unsuccessful in doing so whereas public health counselors were highly effective.78 A successful partner notification program run by public health workers has been in effect in Sweden since 1985.79
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