Opinion and recommendations on integrating persons living with HIV into public policies on disability

Members of the employment and disability commission :

Marc de Montalembert

Catherine Kapusta-Palmer

Danielle Quantinet

Samir Hamamah

Muriel Vray

Willy Rozenbaum

Rapporteurs :

Michel Celse

Laurent Geffroy

Opinion and recommendations adopted by the National Aids Council in plenary session, september 10/09/2009

Progress in treating HIV infection since the arrival of highly effective multi-therapies in the late 1990s has radically altered patients’ lives and future prospects. Initially a disease whose onset was deferred but whose evolution was unfailingly fatal, HIV infection has evolved, thanks to these treatments, to become a more chronic condition : when it is treated correctly, and, most importantly, in a timely manner, patients’ life expectancy can return to near normal. Returning patients’ life-spans to more normal durations poses new questions regarding the professional activity of these persons. Despite spectacular improvement in their state of health, a significant proportion of persons affected by the epidemic continue to confront major difficulties regarding access, maintenance or return to employment. For these persons, who may be temporarily or durably at a distance from employment, recourse to the various compensatory mechanisms of the national system of social welfare (and notably to measures benefiting disabled persons) remains the rule.

Responding to a request from Sidaction, a non-profit group that is a spokesman and fundraiser for various non-profit bodies involved in accompanying and assisting HIV-infected persons in their social and professional integration, the National AIDS Council has decided to initiate an analysis of the nature of the obstacles that prevent persons affected by the epidemic from returning to full activity, and how best to lift those barriers.

This analysis of the obstacles to activity implies scrutiny of the repercussions of HIV infection and its treatments on the health of the persons affected, and the ways in which they may impact their social and professional lives. Too often, the incapacitating effects of HIV — which may not be immediately apparent, but which can be genuinely disabling — are underestimated or ignored. It also entails analysis of society’s image of the disease, which remains highly stigmatized and difficult to discuss, forcing patients to conceal their HIV status. Finally, it involves deeper investigation of the difficulties they encounter as users of a system of care and welfare that is not only complex but which can also prove to be poorly adapted to the specific characteristics of these patients’ pathology and experience.

In order to improve the welfare system’s care for persons living with HIV, and rethink the constraints of the disease in terms of employment, society’s outlook on the people it affects will need to change. The reform mandated by the law on disabilities that was promulgated on February 11, 2005 provides the basis for a new conception of this outlook, and the Council wishes to construct its recommendations within the perspectives potentially opened by this law. Beyond the specific case of HIV infection, these recommendations should be seen as a contribution to an innovative approach to the poorly understood disabilities that are encountered by persons affected by chronic, evolutive pathologies, constructed at a time when the first evaluations of the impact of the February 11, 2005 law are underway, and in a context of ongoing major reforms of various sectors of the welfare system.

 Part I Living and working with HIV today : despite progress in treatment, difficulties persis

I.1 HIV infection is still considered a special disease

I.1.2 Stigmatization continues

In order to understand the impact of HIV on the socio-professional careers of affected persons, particularly their unmet needs for accompaniment and gaps in their welfare protection, we must examine the concrete mechanisms by which discovery of infection can throw individuals’ social and professional lives into crisis. Their state of health is not the only parameter involved ; the difficulties encountered in employment reflect a conjunction of personal factors and structural difficulties in coming to terms with society’s very specific image of HIV infection. It remains an illness that is uniquely stigmatizing, and thus, whether they wish to reveal their illness or to conceal it, patients suffer severe social difficulties.

Diagnosis : a major shift in personal history

Discovering that one is infected with HIV is no longer, in France, synonymous with a short or medium-term sentence of death. It remains, nonetheless, an event that dramatically disrupts a person’s perspective on his or her future. It implies at the least living with significant doubts about one’s health, and means that these persons must, for the remainder of their lives, deal with an evolving series of constraints linked to their state of health and their treatments, which will involve multiple consequences for their future social and professional lives as well as their emotional and sexual relationships.

However, the impact of the discovery of HIV infection appears to vary widely according to the time and the conditions in which it occurs. Important factors regarding the discovery of HIV infection include :

• Time : the person’s age and stage of personal history ;

• Context, in terms of emotional and family relationships ;

Natural history of the infection : the stage of illness at which HIV is discovered, from primo-infection to full-blown AIDS ;

History of the epidemic and its treatments at the time of diagnosis, particularly with respect to the shift created by the arrival of multi-therapies and medications that are simpler and easier to tolerate.

The age factor plays an important role in terms of social and professional integration, since it influences both the nature of the person’s qualifications and his or her initial socio-professional situation. Intervening at a time when the person has not yet achieved academic and professional qualifications, diagnosis may compromise or defer them ; or it may occur later, when the person is already in possession of professional qualifications and/or experience. Clearly an absence or shortage of qualifications and experience, particularly if accompanied by a precarious state of health, constitute a major obstacle to access or return to employment, and require support that focuses first and foremost on training for and re-integration into the job market.

Emotional context, in terms of family and relationships, affects the person’s reaction to his or her diagnosis more generally, for example whether it is concealed or shared with close friends, family members, or within his or her social and professional sphere.

The third factor — stage of infection at the time of its discovery — determines the constraints of treatment and care, which vary widely according to the patient’s state of health. An early diagnosis that does not require immediate treatment, and which may permit later initiation of multi-therapy under optimal conditions, offers far better chances for limiting the pathology’s impact on professional life. Early diagnosis is a factor leading to successful treatment and consequently maintenance of good general health, high quality of life, and the absence or limitation of complications. The introduction of treatment can be thoroughly prepared and its eventual adverse effects anticipated. A late diagnosis, in a context of already damaged immunity or situations of clinical urgency created by opportunistic infections, multiplies the risk of sudden and significant damage to the patient’s career.

The last factor, history of the epidemic, impacts the patient’s perspectives on the future in that, since the arrival of effective treatments, the significance of diagnosis has altered. The historical dimension of the epidemic plays a special role for those who have been affected by the disease for the longest periods, and who thus initially experienced the illness as an inevitable death sentence in the short term. Multi-therapies have sharply altered this perspective, meaning that the question of employment may arise again after an interruption of several years. Such persons may have lived for years in poor health, with numerous disabilities, in very difficult financial situations and in conditions of social isolation ; they may encounter great psychological difficulty in projecting themselves once more into the future, and their distance from the perspective of employment may be extreme. This type of experience of HIV, and the challenge of redefining a future for these persons that involves social and economic integration, require very specific forms of support and assistance.

The impact of HIV on patients’ personal histories would be roughly similar to that of other long-term pathologies were it not for society’s particular perception of the disease. HIV infection — « AIDS« — remains a widely stigmatized pathology. Thus the fragility of patients’ employment status is not only impacted by their state of health, but also by the conditions in which they can, in a given social environment, come to terms with the implications of their illness and its constraints. To reveal their pathology or conceal it is a dilemma that confronts all patients affected by serious illness, but it is especially acute in the case of HIV infection.

The dilemma of secrecy

Studies show that HIV infection is more stigmatized than other chronic pathologies such as hypertension, diabetes or depression [1]. Data from the VESPA study indicate that 6% of persons employed at the time of interview felt that they had been victims of discrimination during their professional career because of their HIV seropositivity. This figure may not seem large, but it should be considered in the light of the fact that some 70% of HIV infected persons who remain employed keep their pathology secret from their employer and colleagues at work. This very high figure suggests that most employees associate revealing their illness with a risk of stigmatization or discrimination. The proportion of persons who have ceased to be employed since their diagnosis of HIV infection, and who feel they have suffered discrimination because of their serological status, is 13% — significantly higher — and this may imply that this type of discrimination played a role in their loss of employment.

Beyond these quantitative aspects, the qualitative implications of secrecy and the various forms of stigmatization and discrimination linked to HIV have been abundantly documented. Several different types of rejection of HIV-infected persons can be distinguished ; although they involve different mechanisms, they are often concurrent.

Fear of contamination. Accounts of reactions of rejection in daily life, founded on irrational fear of imaginary risks of contamination (refusal to shake hands, use of toilets on another floor, fear of mosquito bites, disinfection of computer keyboards etc) are not only a feature of the epidemic’s early years. Such reactions may still be observed today, in the most diverse workplaces — including, sometimes, among certain occupational physicians — and they demonstrate how important it is to continue even the most basic work of informing the public on HIV’s modes of transmission.

Moral disapproval. HIV infection continues to suffer from an image as a shameful disease, which first arose from its principal modes of contamination and the initially most affected population groups, immediately perceived as « high risk« communities. Infection with HIV leads to questions and rumours about the origin of one’s contamination, involving suspicion of practices that society prohibits or disapproves, and which are performed in secrecy, whether they involve drug addiction or sexual behaviour. In both of these respects the disease is perceived as the result of more or less deviant or irresponsible behaviour, suggesting either « divine retribution« or at least the idea of logical or even deserved consequences. Beyond the possible stigmatization of his or her pathology per se, when a person reveals his or her seropositivity in the work environment, this opens up speculation regarding his or her private life and supposed morals ; the person will almost inevitably be forced to confront a series of prejudices that are sexist or homophobic, or involve addiction to narcotics. Even if hostile reactions are absent, the revelation implies permission to intrude into the private sphere, and it is difficult to set boundaries to this intrusion. Talking about HIV necessarily means talking about bodily practices, and always involves talking both too much and too little.

Unemployability. Although infection with HIV is no longer a synonym for full-blown AIDS and a more or less rapid death sentence, the incertitude inherent in the evolutive nature of the disease constitutes a major obstacle to the employment of affected persons. According to the study « HIV and employment : the business perspective« (VIH et emploi : le point de vue des entreprises), which was carried out under the aegis of AIDES, a non-profit association, in 2001, 100% of the employers interviewed declared they would not follow up a job interview with someone who stated that he or she was seropositive. Factors here include the role of irrational ideas about modes of contamination, which are the source of forms of discrimination specific to HIV and lead numerous employers to a priori exclude seropositive persons from various fields of work (professions involving food, contact with children, etc), but also a more general attitude of excluding employees who potentially present health risks. Employers anticipate a risk of lower performance and higher absenteeism from employees affected by a long-term illness. For the same reasons, people who have jobs and who reveal their seropositivity may then see slower progression of their career ; their employers may not wish to take the risk of giving more responsibilities or key functions within the company to employees who may not be able to fulfil them. Numerous accounts describe employees being shut out from key jobs or fired from work on various pretexts due to this attitude.

As previously stated, fear of stigmatisation and the risk of exposure to various forms of discrimination if one’s serological status is revealed lead many persons to conceal their infection. However, this strategy does carry risks. In a professional environment, concealment means that the employee must keep his or her medical appointments (consultations, exams, treatment) entirely separate from his or her work schedule, thus cutting into time for personal leisure or vacations and possibly undermining medical follow-up (forsaking consultations or medical exams for lack of time). It also implies that the employee renounces any possibility of modifying his or her job or work schedule for reasons of health, and that he or she limits as far as possible the frequency and duration of sick leave. This strategy may also compromise the quality of observance of treatment, if work schedules conflict with treatment schedules or if the workplace does not provide the necessary conditions of discretion. More generally, concealing HIV infection means that the person must maintain unchanged levels of performance despite the variable effects of the pathology or treatment on his or her physical and mental capabilities. The physical and psychological cost of these compensatory efforts and the management of this duality in daily life may be considerable, and may prove difficult to maintain in the long term.

I.1.2 HIV is still an obstacle for accessing, maintaining or returning to employment

At the end of 2007, the number of HIV-seropositive persons in France was estimated at between 113,000 and 141,000 [2]. Because of the combined effect of therapeutic progress, which has meant a dramatic reduction in the number of deaths, and the uninterrupted progression of the epidemic, with roughly 6000 - 7000 new diagnoses of seropositivity every year, this population is constantly increasing. With an average age of 28 at the time of diagnosis of seropositivity [3], the vast majority of seropositive persons is of working age and is thus potentially affected by the problems of employment.

According to the Vespa study [4], within the population of persons living with HIV and of working age (under the age of 60), only 56.5% were actually employed in 2003. Those who did not have jobs were unemployed (18.1%) or inactive (25.4%). These overall figures conceal a number of important variations.

A population that faces varying difficulties with employment

The population of people living with HIV is far from homogenous regarding the difficulties they face with respect to employment. Data from the Vespa study in 2003 show a gross employment rate of 53.9% among persons diagnosed with HIV before 1994, and 59.3% among those diagnosed after 1994. These levels vary widely, according to several factors that are usually associated with greater difficulty in the job market : the employment rate of seropositive women (44.6% among those diagnosed before 1994, 46.9% among those diagnosed since 1994) is lower than that for seropositive men (respectively 57.3% et 61.5% ) ; that of foreigners is lower than that of French citizens (49.5% and 47% vs 54.3% et 64.3%) ; that of persons with fewer years of study is lower than persons who have higher academic qualifications (48.5% and 53.4% vs 66.5 % and 72.7%).

The standardized employment rate (corrected to reflect socio-demographic composition comparable to that of the general population) is estimated at 49% for persons diagnosed before 1994 and 59.3% for persons diagnosed after 1994. The employment rate in the general population in 2003 was 65.3%.

Thus the Vespa study clarifies two factors : one linked to chronology of diagnosis, which is clearly affected by the evolution of available treatments, the other linked to social conditions prior to diagnosis.

The employment rate of HIV seropositive persons varies strongly according to the date of diagnosis : it is 25% lower than that observed in the general population for persons diagnosed before 1994, and only 9% lower for persons diagnosed after 1994. Quite logically, the effect of infection on the employment rate appears stronger in persons who developed the pathology before the arrival of effective tritherapies. However, the impact of infection remains significant even among persons who were able to benefit from effective treatments as soon as their infection was diagnosed.

This relative improvement of the overall employment rate conceals a number of growing disparities linked to pre-existing socio-demographic factors. Within the group of persons diagnosed before 1994, the employment rate of people with low levels of academic qualifications is 29% lower, and that of persons with higher levels of qualifications is 17% lower, than the employment rate of people with equivalent levels of qualification in the general population. This disparity appears far more significant in persons diagnosed after 1994. Among this group, the employment rate of persons with low levels of academic qualifications improves to only 14% less than the expected rate in the equivalent general population, but the disparity has grown with the group of persons with higher levels of academic qualification : their employment rate is similar to that observed in the general population. HIV infection thus operates as an amplifier of pre-existing social disparities even within a context of effective antiretroviral treatments, whose benefit is unevenly distributed in terms of the patient’s employment situation.

Finally, the Vespa study demonstrates that a very high proportion of unemployed HIV infected persons – more than 64% - wishes to find work. [5]

HIV reveals and amplifies initially dissimilar difficulties

Epidemiological observations, which identify the population groups most exposed to risk, reveal the existence of factors of social and/or economic vulnerability that are strongly associated with the epidemic. The population groups that are most affected, in the sense that they concentrate the great majority of persons infected in France and/or register the highest prevalence — male homosexuals ; migrant heterosexuals, and particularly migrant women from sub-Saharan Africa ; intravenous drug users ; transsexuals ; detainees in correctional facilities ; and both male and female sex-workers — are all, for different reasons and to varying degrees, marginalized groups within society. Clearly the obstacles that these groups encounter in society in general, and particularly in the job-market, differ profoundly, and clearly these are factors that may (but do not necessarily) contribute to a more fragile social position, one which the pathology may amplify into crisis. Sexual orientation may, for some individuals, be a source of discrimination in employment and/or social and family isolation, but many homosexuals are very well integrated into society and their professions. A migrant woman from sub-Saharan Africa will encounter different social situations depending on her immigration status (legal or illegal), her family situation, and her degree of integration or isolation from community networks.

Epidemiological observation describes a sociology of the HIV epidemic that has varied over the 25 years since the onset of the epidemic. The most obvious change has been the increase in heterosexual transmission, essentially affecting migrants, especially women. Thus among new diagnoses of seropositivity, more than half the heterosexual contaminations involve migrant persons from sub-Saharan Africa [6]. These populations tend to cumulate multiple administrative difficulties (irregular immigration status, difficulties in accessing health insurance and social welfare programs), economic difficulties (precarious and ill-paid work that is often part-time), and social and cultural difficulties (gender relationships, complex family situations, language barriers etc). These difficulties complicate and may dissuade such persons from access to treatment and care, and they make observance of treatment more burdensome, cutting down its chances of success [7]. The consequential damage to health may in turn have adverse effects on these patients’ social and economic situations (loss of employment and/or income). In this sense, HIV today affects populations that are socially less well off and whose social and economic situation is more likely to be damaged by the pathology than in the first few years of the epidemic.

The impact of HIV on the social and economic conditions of infected persons thus appears to vary widely according to the initial social context, leading today to a dual situation. Measured in terms of revenues, one group of middle-class persons maintains conditions close to those observed within the general population, while other groups appear far poorer.

Sommaire

• Part I Living and working with HIV today : despite progress in treatment, difficulties (...) [page 1]
• Part II HIV infection as a paradigm for a new approach to disability [page 3]
• Annexe I Descriptive outline of the main welfare benefits regarding sickness, impairment and (...) [page 4]
• Annex II List of acronyms [page 5]
• Recommendations [page 5]
• Acknowledgments [page 5]