Dilemma of concepts and strategies for the prevention of spread of HIV in relation to human behavior, law and human rights

Dilemma of concepts and strategies for the prevention of spread of HIV in relation to human behavior, law and human rights 1 2 first-author †E-mail:reinhard.dennin@uk-sh.de †E-mail:reinhard.dennin@uk-sh.de reinhard.dennin@uk-sh.de 2 3 4 Institute of Medical Microbiology and Hygiene, University of Luebeck, Campus Luebeck, 160 Ratzeburger Allee, Luebeck D-23538, Germany Institute of Medical Microbiology and Hygiene, University of Luebeck, Campus Luebeck, 160 Ratzeburger Allee, Luebeck D-23538, Germany AIDS Medical Board, Medical Association, Rostock, MV 18055, Germany AIDS Medical Board, Medical Association, Rostock, MV 18055, Germany Centre for European and International Criminal Law Studies (ZEIS), University of Osnabrück, Osnabrueck 49076, Germany Centre for European and International Criminal Law Studies (ZEIS), University of Osnabrück, Osnabrueck 49076, Germany State Key Laboratory for Diagnosis and Treatment of Infectious Disease, the First Affiliated Hospital, School of Medicine, Zhejiang University, Hangzhou 310003, China State Key Laboratory for Diagnosis and Treatment of Infectious Disease, the First Affiliated Hospital, School of Medicine, Zhejiang University, Hangzhou 310003, China The new prevalence data regarding the estimated global number of human immunodeficiency virus positive (HIV + ) cases, i.e., including people who are either aware or unaware of their HIV infection in 2010, lead many to wonder why the increase in incidence has reached today’s unprecedented level and escalated within such a short time. This, in spite of prevention campaigns in countries affected by HIV/acquired immune deficiency syndrome (AIDS) with their urgent messages aimed at preventing HIV transmission by promoting changes in individual’s behavior. This article analyzes the background of the prevention strategies, in particular their political, social and legal concepts in terms of human rights, and reveals traits of human behavior not considered thus far. A radical reappraisal is necessary, at social and legislative levels, as well as options additional to current concepts. When ethical issues come up, they become blamed for outmoded moralistic positions. However, ignoring the reality has led to dire consequences from prioritizing individual human rights over society’s collective need to prevent the spread of HIV. HIV Prevention Human rights Fundamental rights Jurisdiction Decriminalization Introduction 1 We are prompted to write regarding the current prevention strategies in the context of the unprecedented ongoing human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) pandemic (van de Laar and Likatavicius, 2009 2009 ). Figs. 1 1 and 2 2 (UNAIDS, 2010 2010 ) show the selected data on the dynamics of the spread of HIV. In view of the efforts undertaken thus far, and the increasing number of people infected with HIV, the questions are: what are the prospects for halting its further spread, and can it be stopped by the measures applied so far or by measures which cannot currently be countenanced in a liberal and open society? The urgent issue to be realistically addressed is: what is the impelling force driving the ongoing spread of HIV in different parts of the globe? The spread of HIV is not due to a community acquired epidemic like influenza or tuberculosis, but follows the mechanism of individual and intensive interpersonal sexual contact and needle sharing among injecting drug users (leaving aside the special cases of mother-to-child transmission, blood transfusion, and rare situations such as blood-to-blood contacts, e.g., due to biting). At present, AIDS is not curable and still poses a deadly threat to those infected. Ethical and human rights (HR) issues are involved. In general, they impinge on the concept of the “interests of society” which is not generally seen as an object of legal protection. Essentially, here they mean the following issues: Regional statistics on adults and children newly infected and living with HIV and AIDS-related deaths HIV/AIDS has become an international emergency. It has created exceptional challenges with serious impacts on societies in general, communities, social networks, and in particular regarding sexual behavior in partnerships. Established libertarian frameworks need to change in relation to personal autonomy. Prompted by its new host, HIV has created a disastrous situation which necessitates changing the rules and the scales with which our societies and its members are used to living, and requires personal responsibility of a new standard. Basics of the HIV infection and how its features promote its spread 1 Apart from drug-using practices which involve vehicles, e.g., needles and syringes, the transmission of HIV is strictly a person-to-person bound infection, a sexually transmitted infection (STI). The low impact of efforts to curb its ongoing spread results partly from the interaction between certain traits of the HIV itself and its new host, the species “Homo sapiens”: After HIV infection with or without an acute retroviral syndrome (ARS), there is a symptom-free phase of variable length, but an infectious stage follows which, prior to the onset of AIDS itself, usually lasts for several years (Pinkerton, 2007 2007 ; Schneider et al., 2008 2008 ). Due to this time lag between HIV transmission and its adverse affects [preliminary stages 1 and 2 ahead of Centers for Disease Control and Prevention (CDC), stage 3 (AIDS)], there is no immediate awareness of the risk and harm caused to as yet uninfected sexual partners. What is needed is a deterrent against risky behaviors, which is effective for both the active transmitter and for the as yet uninfected individual (Section 3). In the context of this time lag, a central problem lies with those who are unaware of their HIV infection. Depending on the algorithm of calculation, in Europe they represent from at least 30% to 50% of the total number of HIV infected people (European Union, 2009a 2009a ; 2009b 2009b ; see also Marks et al., 2006 2006 ). Due to its long latency stage, HIV is spread inconspicuously among the population, thereby creating an unrecognized but continually expanding reservoir of carriers, most of whom are unaware of their HIV status and in turn, the risk they pose to sexual partners, and their role in spreading the disease within the population. These transmission chains may not be interrupted until client-initiated-testing or provider-initiated-testing for HIV is carried out and accompanied by a supportive service and voluntary counseling and testing (VCT) with respect to therapy and prevention measures. During the time before diagnosis—and for too many people thereafter—the person-bound spread of HIV is influenced by phylogenetically coined sexual behavior (for details see Section 3). Moreover, the efficiency of HIV transmission is facilitated through co-infections of other STIs, which are also on the rise. The result of all this is that currently an estimated 34 million people are living with HIV globally and at least 27 million people have already died (UNAIDS, 2009a 2009a ; 2009b 2009b ). Effective for 2008, the proportion of people unaware of their HIV infection is estimated to be up to 90% with regional differences. “Of particular concern is the high number of persons who are not aware of their infection. About 30% of people in the European Union and up to 70% of people in several neighboring countries do not know their HIV status (Annotation: although the prevalence of PLWH is below 1%, the socioeconomic burden is high and still rising). This presents a serious concern for policy makers.” “These people, unaware of being infected, may transmit HIV unknowingly and seem to be a significant contributor to the spread of HIV” (European Union, 2009a 2009a ; 2009b 2009b ; see also the Aids2031 Consortium, 2010 2010 ). “These people may transmit HIV unknowingly and seem to be a significant contributor to the spread of HIV” (European Center for Disease Control, 2007 2007 ). Depending on the global region, too many of them are being HIV tested as “late presenters” with far-advanced stages of HIV disease (mostly with CD4 + cell counts below 350 µl −1 , although no clear cut definition is available). The reservoir of people who do not know or do not want to know their HIV-positive (HIV + ) status is being promoted by those who defend the “right not to know” (RNTK) reflected in the opt-out approach (OOA), which is an essential element of current prevention strategies (Section 4). The uniqueness of the replication cycle of HIV favors adaptation in its new host with ongoing generation of viral genetic diversity (Gifford et al., 2007 2007 ): Carter ( 2010a 2010a ) mentioned Gurirab’s words that “parliamentarians have a duty to protect the rights of all citizens, including people with HIV,” and “by placing restrictions on the travel and movement of people with HIV, we needlessly rob them of their dignity and equal rights.” Scientifically based information is necessary to inform the public of both sides of this conflicting situation (Perrin et al., 2003 2003 ; Paraskevis et al., 2009 2009 ; Cohen, 2010b 2010b ). Of those infected, about 5% belong to the long term non-progressors (LTNPRs) group. They represent healthy carriers who must be considered infectious although an unknown proportion of them, to a greater or lesser extent, are unaware of their status. Furthermore, there are HIV controllers and elite controllers (ECs). ECs represent a distinct subset of untreated patients who appear to be able to completely control viral replication (Blankson, 2010 2010 ). In view of the particular temporal structure of the course of the HIV infection, there is almost no legal HIV adapted scope to be applied to apart from very rare situations due to interpersonal conflicts (details are described in Section 5). Furthermore, the genetic makeup of an individual may modify the course of HIV infection. For example, the extreme CCR5Δ32 deletion mutation protects against infection. “Actors” responsible for spreading HIV 1 The “actors” responsible for spreading HIV are a group of individuals of heterogeneous composition: already infected with HIV knowingly or unknowingly, and not yet infected with HIV, but at risk. Their behavior ranges between extremes, from immature or irresponsible, uncontrollable or compulsive sexual urges, hetero- or homo-sexual, to prostitution and dependence on drugs. Also, people not normally perceived to be at risk, and those with modest risky behavior are involved in transmitting or acquiring HIV by casual sex or drug use. This is summarized here in the risky lifestyles of people lacking perception of the risk that HIV poses. The spread of HIV occurs in the range of large transmission clusters and two-person clusters (van de Laar, 2009 2009 ; Bezemer et al., 2010 2010 ). However, particularities concerning ethnic communities and immigrants have to be considered (Burns et al., 2009 2009 ). A study from the UK showed a different dynamics of (clustered) viral transmission in the hetero-sexual risk group (slower dynamics) than that among men having sex with men (MSM), and further reflected the spread of non-B HIV subtypes (Hughes et al., 2009 2009 ). Different partnership patterns in Africa, for example, reveal that the cultural matrix based on traditional coined behavior can affect the dynamics of the spread of HIV, and sheds light on the problems facing the prevention campaigns in these countries (Halperin and Epstein, 2004 2004 ; Pettifor et al., 2004 2004 ). But there are also “bridging-people” crossing risk groups, clusters and so forth with different peculiarities who may contribute to some degree to further “mixing” and spreading of HIV (and other STIs like HCV) to risky-sex prone individuals of the communities (Giuliani et al., 2009 2009 ; Ndiaye et al., 2009 2009 ; Chalmet et al., 2010 2010 ). HIV infected individuals are the potential infectors. Data for the USA reveal the high rates of new HIV diagnosis among US gay men (Carter, 2010b 2010b ). “The major at-risk populations in Europe are also men having sex with men, which account for about 40% of all new infections in the European Union, migrants from high prevalence areas, and injecting drug users, the last group being responsible for up to 70% of all new infections in European Union neighboring countries” (European Union, 2009b 2009b ). The review presented by Beyrer ( 2010 2010 ) reveals the deficiencies in taking care of MSM in developing countries. The growing concern of HIV transmission by MSM in China is discussed by Feng et al. ( 2009 2009 ). A study from China indicated that the HIV + rate of MSM in Beijing was 4.6% (2.2%–7.6%) and of those 56.3% (50.9%–62.5%) were reported having had a bisexual sex preference (Ma et al., 2007 2007 ). It is a sad fact that too many of those at risk are simply not able or not willing, for various reasons, to follow the advice provided by prevention campaigns. Their behavior ranges from acting willfully or unconcernedly with reckless disregard for their health or that of others, or not being able to evaluate the remaining infectious risks, particularly those under cART or a combination thereof. Those who are responsible for spreading HIV have, during the past decades, had the chance to assume responsibility for their behavior, but too many of them failed to do so. They had the chance to cooperate in defeating the perils emanating from HIV by following the advice of the prevention programs, but did not. Too many people of volatile disposition, despite being aware of their HIV + status, do not comply with the imperatives, although not always deliberately, while many still uninfected but at risk do not implement self-protection responsibly. Regarding IDU, a statement makes the point “… in Eastern Europe und Central Asia … we are seeing a new upturn in infections in some countries of the region—a new generation of drug injectors is going through the same pattern of HIV spread as the previous generation” (Sidibé, 2010 2010 ; see also Cohen, 2010a 2010a ). Sidibé ( 2010 2010 ) further reported on success in efforts to reduce harm for drug users in Eastern Europe and Central Asia. Indeed this kind of pragmatism instead of punishment in the countries mentioned looks encouraging at first glance, e.g., access to clean needles, opioid substitution, and withdrawal therapy for opiate users, cART for HIV-infected drug users and more (Mathers et al., 2010 2010 ). Strictly following risk reduction measures will help these people. However, this vision does not include the relapse rates of drug users under therapy (Backmund et al., 2008 2008 ; Li et al., 2010 2010 ; Meade et al., 2010 2010 ). The rate of sustained success seems to be too low and will not really help to stop the spread of HIV and other blood-born infections with shared routes of transmission, such as hepatitis B virus (HBV) and hepatitis C virus (HCV), in this at-risk population (Matthews et al., 2011 2011 ). Individual motivation, indicated above, essentially holds true for people in developed countries, especially the industrialized high-income countries with highly developed economies and media, i.e., a communication infrastructure. In developing and low-income countries, quite different conditions have to be taken into account, e.g., widespread poverty, inequality, tradition-based sexual behavior, social norms such as polygamy, violence against women, and cultural trends. Strategies for HIV prevention in these countries have to be adopted accordingly (Michielsen et al., 2010 2010 ). This also applies to treatment as prevention (TASP) strategies executed in resource-limited settings (Marazzi et al., 2008 2008 ). It concerns infrastructure settings necessary for medical service and management. Strategies for preventing the spread of HIV 1 Legal frameworks 1 At present, people transmitting HIV but protected by the conditions outlined above benefit from such protection without any obligation of a “quid pro quo”. Existing regulations do not encourage them to take up the new challenge. Boundless freedom at the personal level creates a destructive potential at the level of communities and against the interests of societies. “Duties to the community”, Article 29 of HR, and then seem like an idealistic fiction. In summary, this declaration should it come into force, would be directed against the interests of the societies and governments for whom administrations are responsible for maintaining the corporate good. It would undermine the understanding that living together in human communities depends on legal norms on which public order relies. Individual liberties must be subordinate to such collective legal norms. Otherwise, when HR and the basic rights of citizens derived from them are used one-dimensionally against their authentic intention, public systems are in danger of becoming fragile. Finally, the campaigns for decriminalization are needless anyway as because of the unique traits of the HIV infection, criminal prosecutions cannot be applied except in a minor number of cases, as outlined above. Human rights 1 Collisions 1 Certain HR or fundamental rights (FR) can be at odds with the interests of society at large: Thus far, policy makers and legislators have neglected to address the consequences of HR legislation, i.e., its possible misuse. With respect to the transmission of HIV, they did not consider perspicacious measures to counteract possible abuse of the freedoms granted in a liberal society. If governments would seriously assume full responsibility for the communities they serve, they should consider that the personal interests of the at-risk individuals addressed here, in the legitimate interests of society as a whole, have to be given a lower priority than at present. Residual matters 1 What has to be done in the interest of HIV infected people and in the interest of the societies at large to avoid a harsh future reality? Effective treatments exist, but there is no cure. Prevention is therefore key to combating HIV/AIDS and if we neglect it, lives and resources will be wasted (European Union, 2009a 2009a ). Thus far, providing only VCT on a large scale has failed where it is urgently needed to reduce the number of people who do not know they are infected (Alcorn, 2010 2010 ). It therefore needs modifications like a multi-sectoral response. The concepts of the prevention strategies must be customized in relation to the target groups: MSM are different from IDU, IDU are different from heterosexual people at risk, and so forth. Public health services should be allowed to effect. Annulment of HIV exceptionalism 2 Extensions and approaches 2 Besides continuing the current prevention strategies, policy makers have to adjust the next generation of strategies for HIV testing. A combination with the following regulations would help. We propose the following items as a multi-sectoral response as design parameters with respect to extending TASP: Special services should be offered to individuals at risk and HIV-infected persons: Additional concepts which focus on process management are described by Coates and Szekeres ( 2004 2004 ). This would help to reduce the number of persons unaware of their HIV infection, and to increase the portion of PLWH who are aware of their HIV status (Pinkerton et al., 2008 2008 ), thereby promoting treatment, counseling and provision of information about individual prevention measures. A caring society is prepared and eager to help, particularly vulnerable “risk-taking” people, but has a right and duty to demand the cooperation of those at-risk persons. Therefore, those who do not heed the advice put out by prevention campaigns and fail to exercise personal responsibility should be made liable for the consequences as a last resort, whether actively or passively infected with HIV. HIV infection has gained the status of a chronic disease under appropriate treatment. Therefore, HIV exceptionalism, as it stands, must be abandoned and replaced with the obligatory message “must cooperate”. cART treatment project for reducing HIV transmission (TASP) 1 cART, an antiretroviral treatment, is to be offered according to the updated guidelines (de Cock et al., 2009 2009 ) as part of additional behavioral prevention programs (Rotheram-Borus et al., 2009 2009 , Padian et al., 2008 2008 ). However, this can work only for those who are aware of their HIV infection; will current prevention campaigns reach the estimated tens of millions of people (globally) still unaware of their infection? How can they be reached when the “right not to know” their HIV status—that their legal advocates insist on—is rooted in HR legislation? Furthermore, such a strategy can work only at a population level; in reality at the individual level, transmission of HIV by patients receiving cART will still occur because of widely varying conditions and situations such as an individual’s current viral load (VL), side effects from drugs (cART), uncontrollable sexual behavior, coinfection with one or more STI, special attitudes of drug consumers, inconsistent adherence, and emergence of antiretroviral resistance (Roquebert et al., 2009 2009 ; Fox et al., 2010 2010 ; Rieder et al., 2010 2010 ; Wang L. et al., 2010 2010 ; Carrico et al., 2011 2011 ). Even Act UP, Paris/F warns against relying on cART alone to effect prevention of HIV (ACT UP-Paris, 2009 2009 ). The same holds true regarding social and economic circumstances of PLWH (Armstrong and del Rio, 2011 2011 ). However, several studies showing positive effects from applying TASP (Montaner et al., 2010 2010 ) must be thoroughly checked against other data. For example, one study showed persistent genital HIV levels in women receiving ART although HI-VL in plasma was undetectable (Cu-Uvin et al., 2010 2010 ). These strategies may tempt at-risk people (HIV + or negative) to be imprudent and also risk infection from other STIs because of a decline in their inhibition threshold (Bezemer et al., 2009 2009 ; Dieffenbach and Fauci, 2009 2009 ; Donnell et al., 2010 2010 ). This also might hold true for pre-exposure chemoprophylaxis (Grant et al., 2010 2010 ; Michael, 2010 2010 ). In particular, the riskier routes of HIV transmission require thorough examination (Wilson, 2010 2010 ; Bengtsson and Thorson, 2010 2010 ). The statements “there is increased evidence of risk among key populations …” and “the resurgence of the epidemic among men who have sex with men in high-income countries is increasingly well documented” should be taken as serious signals (UNAIDS, 2009a 2009a ). At the European Union level, there is particular concern about the high number of people who are not aware of their infection, and therefore this issue is being raised with policy makers. Late diagnosis usually leads to late treatment and to an increased danger of transmitting the virus to partners. However, the starting prerequisites about how to ensure that at-risk people are tested remain open. The commentary by Hale et al. ( 2001 2001 ) and the statements of the Aids2031 Consortium (2011) provide a disturbing picture of what may happen if the global communities do not take action. Unpopular questions 1 What is the threat to future generations if neither a preventive vaccination nor a curative treatment becomes available? Is there a saturation level in HIV prevalence with which societies can cope? However, who decides what is acceptable? The latest data convey a chilling message of the potential silent spread of HIV in future generations. Current concepts and strategies for prevention need supplementing (Vernon and Jumper-Thurman, 2002 2002 ), and it will probably be necessary to reexamine established paradigms if we are to succeed in protecting future generations from the scourge of HIV. “There is nothing to suggest that HIV will plateau, or that it will not reach one billion cases before 2050. It is unlikely, but not impossible that HIV could attenuate itself, but when and at what human toll?” (Hale et al., 2001 2001 ). However, “the key fact about HIV is that it is a nonequilibrium infectious agent” (Baltimore, 1995 1995 ; see also Gifford et al., 2007 2007 ). On an evolutionary time scale HIV is in some respects just at the beginning of its invasion of its new host, Homo sapiens. It is not considered acceptable to criticize a person’s lifestyle, which allows them an almost unlimited degree of freedom regarding their individual self-realization, even when they show little regard for the consequences it may have for society at large. But if we do not broach the subject of what to do about those who refuse to behave responsibly, our societies will be paving the way for the spread of HIV in future generations. “There have been many successes in the AIDS response in recent times including increases in HIV treatment coverage and prevention of mother-to-child transmission services, and an indication of decline in HIV incidence in some regions.” However, at the moment, globally five people are becoming infected with HIV for every two people accessing treatment” (UNAIDS, 2010 2010 ). This is the situation that human societies will be facing in the future. 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