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Keywords:

  • lay immunology;
  • CD4 counts;
  • viral load;
  • surrogate markers

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Acknowledgement
  8. References

Immunity has emerged as a popular health concept across different cultures, in particular concerning persons with human immunodeficiency virus (HIV). Attentiveness to immune status is encouraged and governed by a powerful clinical and public health surveillance system where two surrogate markers, CD4 counts and viral load, are chosen to monitor not only the effects of the biomedical intervention ART (antiretroviral treatment) but also individuals’ effort in adherence and improving lifestyle practices. By interviewing 103 HIV participants, we delineate the reality they encountered while living with these two markers. We explore how they, in response to the doctrine surrounding the markers, shaped their peculiar immunological literacy and beliefs, and tactics for enhancing immunity. We found that the assumed validity of CD4 counts in health surveillance was challenged. The participants’ conceptualisation of immunity was largely pluralistic, characterised by a blending of biomedical knowledge and Chinese health concepts and worldviews, strongly reflecting idiosyncrasy and eclecticism rather than universalism in reasoning about these markers and their relevance to immune status and overall wellbeing. Living with clinical markers is becoming a common experience in daily life; their meanings, their impacts on laypersons, and the utility claimed for them by the biomedical community, need further scrutiny.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Acknowledgement
  8. References

As early as the mid-1990s when this article's first author was a consultant at the HIV/AIDS special outpatient clinic, Taipei Bureau of Sexually Transmitted Diseases Prevention and Control, the phenomenon of ‘CD4 anxiety’, that is, being preoccupied with CD4 cell counts1, had been observed to be pervasive among HIV (human immunodeficiency virus) patients. Accompanying this CD4 anxiety was the commonplace and frequent use of mian yi li (immunity)2 in their conversations, at a time when the term, or its meaning, was relatively novel among the lay public. While more than a decade has passed, and the major mode of treatment has changed from AZT (azidothymidine) to ART (antiretroviral therapy, also known as HAART: highly active antiretroviral therapy), CD4 anxiety still persists.

Surrogate markers and disease control

The anxiety originally arose from a clinical indicator, or ‘surrogate marker’, with which health professionals could monitor the effects of a specific intervention and disease progression (Hengel and Kovacs 2003). In the case of HIV/AIDS, interventions include chemotherapy such as AZT or ART, with the major surrogate markers being CD4+ cell counts (CD4 count) and viral load (Tsoukas 1995). Thus CD4 counts are the most commonly used marker for assessing patients’ immunity, and a decline in CD4 cells is seen as the major cause of immunodeficiency and the opportunistic infections observed in AIDS (Mellors et al. 1997).

As to viral load, the amount of HIV in the bloodstream, this marker can help establish whether one is at risk of further immune damage in the near future. The higher the viral load, the more likely one is to lose CD4 cells in the future. Accordingly, CD4 cells have become an entity cherished by HIV patients.

More aggressively, and at the population level, surrogate markers are used for public health surveillance to monitor disease progression or outcome. While no technological interventions can claim exclusive effectiveness, patients’ personal lives become the target for exercising control. The core of this control mechanism is informing patients of the implications associated with the designated markers and convincing them of the markers’ validity, thereby strengthening their confidence in and adherence to suggested practices. However, we argue that uncertainty about the validity of the markers remains; this may generate discontent and involve challenges to the authority of professional advice. In this article, we will show the manner in which HIV-positive persons construct their personal immunological epistemology, as a result of their long-term experience of living with surrogate markers.

Lay perspective of immunology

Any advances in biomedical science will affect laypersons’ consequent conceptualisation and understanding of the body and health, and this holds true for advances in immunology. With the development of immunology, immunity has become an emerging health concept in modern culture (Martin 1994, Napier 2003, Wilce 2003). Warfare or military metaphors were, and still are, the most popular ‘model’ to imagine and describe the immune system (Martin 1994), and under this frame of reference, more sophisticated ‘self and other’ differentiation has also been analysed (Haraway 1993, Napier 2003). ‘Lay immunology’ has also been examined within specific contexts. For example, in response to accusations of consuming unpasteurised milk, inhabitants of rural areas justified this dietary practice by emphasising the roles that nature, bacteria, dirt, and rawness play in ‘immunising the body’ to maintain health. In a more defensive tone, they emphasised the ‘local identity’ that this particular food item signified (Enticott 2003). Beyond this, the psychobiological context is also relevant. Subjective assessment of one's own immune status has been found to correlate strongly with mood variables, such as style of expressed emotion as well as feelings of vigour and fatigue (Boothe and Davison 2003). Immunity and immunology are, therefore, no longer conceptualised by laypersons in a conventional way. Instead, the lay public has fabricated its own idea of immunology.

Lay immunology is not confined to Western society but has also become common in other societies, like Taiwan. In Taiwan, mian yi li is a fairly recent notion for the general public. Only in the past two decades have laypeople been exposed to this concept, which is sometimes linked to a much more longstanding indigenous health concept – personal constitution (Lew-Ting et al. 1998). Mian yi li has penetrated further into popular health culture with the outbreak of SARS (severe acute respiratory syndrome) in 2003, when personal immunity was strongly emphasised by health professionals as a means of prevention3. Although lay immunology has hardly been examined in Taiwan, we might expect it to draw on indigenous health concepts and concepts associated with traditional medicine.

Immunity and markers in HIV infection

In the context of HIV infection CD4 cells acquire the status of a metaphorical army, in charge of upholding immunity against the enemy, HIV. The complete name of the disease AIDS, acquired immunodeficiency (immune deficiency) syndrome, already suggests its immunity-related nature. Unlike other commonly encountered chronic diseases, where specific organs or body tissues are affected, HIV attacks the entire immune system, a much more dispersed and intangible idea. Furthermore, and notably different from non-infectious diseases, where the concentration of specific parameters like blood glucose, cholesterol, and urine acid have to be monitored to ascertain a safe range, in HIV/AIDS the concentration of miniature living agents inside the body, that are both exotic and baffling, has to be carefully observed.

Worldwide at the population level, ART has been fully legitimised in HIV/AIDS control owing to its perceived contribution to a dramatic decline in AIDS mortality (Palella et al. 1998, Murphy et al. 2001) although for HIV/AIDS individuals the relationships between CD4 counts, viral load, disease progression, and the perceived health status or quality of life remain to be clarified further (Holzemer 2002, Aiuti and Mezzaroma 2006). Currently adherence to ART is still deemed critical by providers of health care in efficiently controlling disease progression, and barriers to this regimen are intensively scrutinised (Turner 2002). Beyond antiretroviral drugs, however, self-prescribed immunity strengthening or health promotive remedies have been used by HIV-infected persons (Foote-Ardah 2003), and some have proved effective either as assessed by clinical indicators/markers or as self-perceived quality of life (Ironson et al. 2006, Fitzpatrick et al. 2007).

While clinical markers reflect immune status, they can also be used to monitor and control risk behaviour. For example, viral load is frequently used by HIV positive gay men as a reference for practising risk minimisation in unprotected anal intercourse (Rosengarten et al. 2000). So, how does a long-term HIV status affect the ideas about immunity held by people with HIV, and does this involve the formulation of personal theories of immunology? Moreover, how do they assess their own immune status, manage their immune deficiency and judge whether to engage in risky activities? These aspects of lay immunology in HIV have attracted only limited academic attention.

Studies have shown that lay people are more likely to articulate their concepts of disease and health, and medical knowledge in the context of their own illness experiences (Bury 1982). In this article, we delineate the reality that a group of HIV-affected laypersons encountered, and how they maintain a grip on their immune status by using CD4 count and/or viral load parameters.

Method

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Acknowledgement
  8. References

The research applies a parallel mixed method design (Onwuegbuzie and Teddlie 2003). Both qualitative and quantitative data were simultaneously collected and analysed in a complementary manner. Based on preliminary in-depth interviews with four HIV-positive patients, we developed a semi-structured questionnaire to act as the major research instrument.

We posted advertisements and relied on snowballing connections to recruit participants from clinical settings, non-governmental organisations, and supported accommodations. We also advertised for interviewees on the Internet, particularly in gay chat rooms. Between October 2003 and April 2004, we interviewed 103 HIV-positive individuals. The study, including the interview protocol and informed consent form, was approved by the Human Participant Review Board of the institution with which the two authors are affiliated.

The interviews

The participants were asked to read and sign the informed consent form prior to the start of the formal data collection procedure. They then completed (or verbally responded to) a short background information sheet before beginning the in-depth interview. Using this instrument, data collected included socio-demographic characteristics, HIV history, and self-reported CD4 counts and viral load. To respect the participants’ convenience and privacy, we interviewed them at clinics, the researchers’ office, or community-based supportive institutions, depending on their preference.

Each interview lasted a minimum of 30 minutes (usually when a participant had heard of but did not know more about CD4 or viral load) to a maximum of 145 minutes, with an average of 53 minutes. With participants’ approval, 97 interviews were recorded and transcribed by members of the research team. Participants were compensated with NT $500 (approximately USD $15) for their time and transport costs.

The conversation was usually initiated by mentioning the CD4 counts they indicated4 in the background sheet, followed by questions related to their CD4 counts. In doing so, the concept of immunity was always raised and articulated, and subsequently served as a basis on which to broaden the scope of conversation. Key questions pertaining to the present study include: (1) How strong do you think your immunity is? (2) How easy do you think it is to maintain your immunity in your daily life? (3) How much do you worry about your immunity? (4) How helpful would you say is Cocktail Therapy5 for enhancing your immunity? (5) What steps do you take in your daily life to enhance your immunity? (6) From an HIV-positive person's perspective, do you think that engaging in sexual activity might negatively affect one's immunity? For the first four questions, we asked the participants to respond using a 5-point Likert format, and then elaborate their answers further. Thus, in-depth, narrative data were obtained.

Data analysis

Data analysis consisted of a simultaneous and complementary analysis of the close-ended Likert-type responses and the narrative data. First, the analysis was carried out, for each single question, for the entire sample in order to capture a preliminary overview of responses. Next, considering each question, we concentrated on the qualitative data from all participants who made the same item response. For example, we compared accounts and narratives given by respondents who considered immunity maintenance to be ‘very easy’ or ‘easy’ versus those who considered it ‘difficult’ or ‘very difficult’. We referred to this type of analysis as intensity-differentiated stratified analysis. Main themes emerged when qualitative data across different intensities within a specific item or across different items were further analysed. In addition to frequency and percentage, Spearman's rank correlation was used to determine the strength of association between any two Likert-type variables.

Participants

The sample was predominately male (n = 95, 92.2%), of whom 58 (61%) were ‘men who had sex with men’ (MSM) and 20 (21.1%) were bisexual, whereas all females were heterosexual. The mean age of respondents was 40.3 years, with 81.6 per cent older than 30 years. Although the majority (90.0%) were still within the working age group, and many (72.8%) had completed high school or higher education, only half (52.4%) had held regular jobs during the past year prior to the interview. Consequently, only 29.2 per cent enjoyed a solid financial situation, with the same proportion complaining of serious economic hardship.

Concerning their medical history, HIV-positive status ranged from one month to as long as 20 years; most (67.0%) had a duration of less than five years. Except for nine interviewees who did not know their CD4 counts, the remaining 94 respondents reported a very wide range of CD4 counts, from as few as less than 10 (cells/µL) to as many as 1,500, with a mean of 370. Based on CDC's Revised Classification System (CDC 1993), three categories of CD4 counts are used: (1) Category 1: greater than or equal to 500; (2) Category 2: 200–499; and (3) Category 3: less than 200. Category 3 is a criterion for AIDS diagnosis – a condition faced by 19.4 per cent of the participants. Less than half (42.7%) fell within Category 2, and 29.1 per cent were allocated to Category 1, having the highest CD4 count. The range of viral load observed was dramatically greater (0 to 780,000), with 50 participants reporting a zero viral load count6 and another 17 (16.5%) with a count of less than 10. Seventeen individuals did not know their viral load status at the time of the interview.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Acknowledgement
  8. References

Immunity as constructed upon CD4

All the respondents indicated that the terms ‘CD4’ and/or ‘viral load’ were completely novel to them at the time of their diagnosis. But since diagnosis, some had become extremely knowledgeable about the mechanisms involved in the progression of the disease. Apart from attending lectures and reading professional journals, perhaps the most powerful source of HIV-related expertise was their HIV-positive peers. They shared with each other not only the latest information about ART and the availability of alternative and complementary medicine (CAM) but also recent records of the CD4 counts, viral loads, and health status of their HIV/AIDS friends.

The conceptualisation of CD4 by these respondents reveals that they had grasped some sophisticated biomedical ideas. Particularly, when in referring to their own CD4 counts, immunity was the most often addressed concept (see Table 1). Nearly one-quarter of the participants (n = 23) did not specify exactly what CD4 represented or denoted, although their physicians had informed them of their CD4 counts and viral load during regular outpatient visits. Yet they all knew that greater CD4 counts and lower viral load were desirable.

Table 1. Frequencies of self-reported CD4/immunity related characteristics
variablesn (%)variablesn(%)
CD4 count (self-reported)Worry about immunity
 inline image20020 (19.4)Very much11 (10.7)
 201–49944 (42.7)Concerned37 (35.9)
 inline image50030 (29.1)Fairly concerned21 (20.4)
 Don't know9 (8.7)Not concerned23 (22.3)
 Mean(SD)406 (243)Not concerned at all11 (10.7)
 Range   10~1500Ease of maintaining immunity
Viral load (self-reported)Very easy3 (2.9)
 inline image200545 (2.4)Easy63 (61.2)
 201–5,0008 (7.8)Somewhat easy9 (8.7)
 5,001–10,0005 (4.9)Difficult23 (22.3)
 10,001–100,00013 (12.6)Very difficult3 (2.9)
 >100,0006 (5.8)No response2 (1.5)
 Don't know17 (16.5)ART for immunity maintenance
 Mean(SD)32459 (109475)Very helpful9 (8.7)
 Range  0~780000Helpful65 (63.1)
Better reflects immunity statusSomewhat helpful7 (6.8)
 CD453 (51.5)Unhelpful11 (10.7)
 Viral load23 (22.3)Very unhelpful1 (1.0)
 Both equal13 (12.6)No prior treatment10 (9.7)
 Don't know14 (13.6)Strategies for immunity maintenance
CD4-level satisfactionHealth practises96 (93.2)
 Very unsatisfied3 (2.9)Mental health90 (87.4)
 Unsatisfied32 (31.1)Dietary practises88 (85.4)
 Fairly satisfied15 (14.6)Physical activities71 (68.9)
 Satisfied37 (35.9)Risk reduction46 (44.7)
 Very satisfied5 (4.9)CAM34 (33.0)
 No response11 (10.7)Sexual activities deteriorate immunity
Self-rated immunity statusYes14 (13.6)
 Very good10 (9.7)No32 (31.1)
 Good46 (44.7)It depends49 (47.6)
 Fair26 (25.2)Don't know8 (7.8)
 Poor19 (18.4)  
 Very poor2 (1.9)  

Among the more knowledgeable respondents, the term immunity was always used when making sense of CD4: ‘CD4 is itself immunity’, ‘CD4 is equal to immunity’, ‘CD4 itself is not immunity; it represents or reflects immunity’, and ‘CD4 is partial immunity; a part of overall immunity’.

Concerning immunity, CD4 was frequently referred to as white blood cells, antibodies, immune cells, lymphocytes, natural killer cells, macrophages, and so on. In this sense, CD4 was conceptualised as a living object, mostly a type of cell capable of performing a function. Overall, ‘attacking’ and ‘defending against’ predominated in their reasoning about how CD4 actually functioned, as articulated in the following metaphoric statements:

CD4 is like the soldier of a nation, fighting against the attack of germs and other substances. It is a defensive edge, the immune system. But I hardly know exactly what it really is (090).

[CD4 acts] . . . like the director of an orchestra. It is an index but not an exact standard; it's part of the immune system (094).

Some described even more complex mechanisms:

CD4 enhances one's power of defence (di kang li), to resist virus and increase the strength of cellular tissues . . . to vitalise the tissues (024).

CD4 is an index, but is one which does not fully represent health status. It's only part of immunity because CD8 also plays a role. It all depends on the CD4/CD8 ratio. So, higher CD4 levels are desirable (038).

CD4 is itself equal to immunity. Immunity is harboured in the stream of blood. So, immunity is also equal to blood. We count on our blood to keep us alive and functional (029).

If a ‘partial’ role for CD4 was emphasised, the traditional health concept of physical or personal constitution was also likely to be addressed. This concept had the potential to explain the invalidity of the CD4 count as a marker, that is, its failure to reflect one's immunity or health status in some cases:

CD4 level has something to do with one's ti-zhi (personal constitution)7. Some persons always have higher CD4 levels. Their CD4 counts remain high even when they have an infection (071).

CD4 is itself ti-zhi. Since each person has his unique ti-zhi, the CD4 count that each individual has may be quite different as well. My CD4 count has remained around 200 and I've hardly ever had a cold. But a friend of mine has a cold quite often despite a much greater number like 600. It's all because of personal constitution. That's my theory (084).

In relating CD4 counts to immunity, only 32 participants (31.1%) also mentioned HIV or viral load. The majority of them keenly grasped the reverse association between CD4 counts and viral load, knowing that a rise in CD4 count is followed by a fall in viral load and vice versa. Some provided an elaborate explanation of this relationship:

CD4 is a type of white [blood] cell to which the virus attaches and reproduces (016).

The virus attaches to the outer membrane of the CD4. The increase of CD4 brings up a greater number of virus, and the decrease of CD4 increases the virus’ ability to attack (024).

Although most of them captured precisely the inverse relationship between CD4 counts and viral load, when asked which of the two was of greater importance to one's immunity, 51.5 per cent asserted CD4 counts, 22.3 per cent viral load, and only 12.6 per cent considered both were relevant. However, when asked which they were more concerned about, 32.0 per cent indicated CD4 counts, 27.2 per cent viral load, and 24.3 per cent expressed equal concern for both. Only nine respondents stated that they cared about neither. This variability shows that immunity was not always a major concern for participants. For some, the concentration of the virus within their bodies was more important.

CD4 concerns and attentiveness

With such wide-ranging CD4 counts, the members of this sample took different stances on what constituted normality. Satisfaction with one's own CD4 status was positively associated with CD4 counts; higher levels of CD4 counts led to greater satisfaction (r = 0.37, p < .01) (Table 2). Yet, surprisingly, the CD4 count had a weak relationship with ‘self-assessed immunity’ (r =−0.19, p > 0.05), ‘worry about immunity’ (r =−0.08, p > 0.05), and ‘perceived ease of maintaining immunity’ (r =−0.03, p > 0.05). The same pattern is found when the CD4 counts are classified into three categories (see Table 2). The findings suggest a complicated psychological reaction to the CD4 counts, and the results are illuminated by qualitative data presented below.

Table 2. Correlations between CD4 count/level and CD4/immunity perceptionsa
 CD4 Satisfaction (n = 92)bImmunity status (n = 94)Immunity worry (n = 94)Easiness of maintain (n = 93)
  • a

    Using Spearman's rank correlation

  • b

    n < 103 due to missing values

  • c

    CD4 level: 0 (inline image200), 1 (201~599), 2 (inline image600)

  • *

    P inline image .01

CD4 count 0.37*−0.19−0.08−0.03
CD4 levelc−0.31*−0.24*−0.00−0.08

The preoccupied:  Eleven respondents expressed tremendous concern over their immune condition and CD4 counts. Overwhelmingly gripped by the idea of CD4 counts, their inverse relationship to viral load, and the apparent health implications, these preoccupied HIV sufferers have demonstrated unremitting attentiveness to virtually any changes in bodily state, in their physical condition, and in the ups-and-downs of CD4 counts and viral load. They associated dreadful consequences with reduced immunity and its associated maladies, such as opportunistic infections, developing drug resistance, and hospitalisation. Even more threatening was the possibility of unemployment and incapability to play critical social roles, hence becoming socially disabled people.

Most of their CD4-induced tension came from past experiences with HIV infection, which were distressing enough to cause prolonged anxiety and distress:

My CD4 was zero when I was hospitalised as a full-blown AIDS patient. That was a horrible experience to me and I have been keeping watch on my CD4 count from then on (053).

With CD4 counts well below average, they reported vulnerabilities such as ‘always feeling dizzy, nearly fainting’, ‘weakness and much less energetic’, and ‘. . . having TB and easily catching a cold’. Noticeably, these preoccupied HIV sufferers had CD4 counts ranging from 100 to 811, with an average of 311, and among them, six had a count greater than 300. This average was almost 100 lower than that of the entire sample (mean = 406), but still represents a tolerable condition according to the current clinical standard.

Compared with other participants, the ‘preoccupied’ patients were much less educated (college graduates: preoccupied = 9.1%, others = 33.7%) and had a longer duration of HIV positivity (mean of the preoccupied = 6.50 years; others = 4.72 years). As a result, only 27.3 per cent of the preoccupied had a full-time job, and 45.5 per cent were unemployed. The proportions for their non-preoccupied counterparts were 41.3 per cent and 34.8 per cent, respectively. In summary, the preoccupied group was at a greater disadvantage physically, economically, and psychologically.

The pragmatic:  A pragmatic stance, as displayed by the majority of respondents, involved recognition of the possible implications and impact of CD4 count without dwelling excessively on negative aspects of this, and also a degree of personal idiosyncracy. Regardless of the extent to which such people were concerned over their immunity, they strongly contested the orthodox ideas surrounding CD4 counts. They questioned excessive reliance on counts alone and were sceptical about critical cut-off points, such as the view that a CD4 count of 200 indicates that recovery of health is a lost cause. Instead, they emphasised a holistic view of immunity, and identified an acceptable range for CD4 counts that pertained to their own situations.

How well one is doing and how good one is feeling did not necessarily correlate with CD4 counts. Rather, wellbeing was assessed and perceived subjectively. Virtually all the pragmatist respondents shaped their CD4 viewpoints by empirically and holistically observing the illness trajectories of their HIV peers, against which they considered their own conditions acceptable. ‘Living a normal life’, ‘having a job’, and ‘being energetic’, all justified a normal state of physical health and satisfactory immunity, regardless of CD4 counts. Indeed, to the respondents, the body itself embodied an internal state of immunity, which was visible and perceivable.

CD4 counts as well as viral load were not always trustworthy because most of the respondents believed themselves to be frequently surrounded by, or that they themselves were, ‘exceptions’. That is, illness trajectories or disease progression reflected neither common sense nor official views of the meaning of the CD4 count. Many were either ‘having a CD4 count less than 10 but still doing well and looking great’ or ‘having a CD4 count of many hundreds but still easily catching a cold and looking pale and frail’. These observed deviations, be they positive exceptions (low in CD4 counts but doing well) or negative ones (high in CD4 counts but in poor condition), provoked a great deal of thought and attempted explanation. The following is an interesting case, not only emphasising the idiosyncratic nature of interpretations of CD4 cells but also vividly expressing an image of them:

My CD4 count is low; only 110. But they [CD4 cells] are much stronger – each CD4 exerts a power 100 times greater than that of other persons. I never get sick and have been in good condition in the past three years (059).

The vigour and animation of his CD4 cells, according to his emphasis, has added an additional attribute to a CD4 cell; besides quantity and volume, the quality of CD4 cells is felt to vary among different individuals.

CD4 as conceptualised by HIV-positive persons, therefore, involves a perception of the idiosyncrasy of this micro-component of the body in each individual. To make sense of all the observed exceptions, ideas about personal constitution, as discussed previously, became a dominant source of ideas. Statements like ‘ideal and achievable CD4 levels vary among persons’ and ‘it [what constitutes a normal range of CD4 cells] is inborn’ typify this idiosyncratic thinking.

The idiosyncrasy with which CD4 counts were judged acceptable was used to justify the appropriateness of a specific quantity. For example, this participant stressed the importance of adequacy:

. . . [the number of] 170 is low. But it is enough for me. Besides, my health condition is OK (038).

Stability is another concept, highlighted mainly by the patients of Dr Hsu (a pseudo last name), who has a twelve-year experience in HIV/AIDS clinical care. According to these participants, Dr Hsu assured them that CD4 counts per se were not as critical as maintaining a certain level. As long as the count remained stable, even when lower than the expected minimal normal range (for example, 200–300), one's physical condition could be good.

More philosophically, moderation and equilibrium, both being core concepts of the Chinese worldview, were also used to help cope with less satisfactory CD4 conditions.

. . . but not to be too high . . . . better to maintain a stable range. Everyone should pursue equilibrium. Too high is dangerous. Just like nature. It has to maintain equilibrium, otherwise, all would get out of control. Don't push it [CD4 level] forcefully. It will achieve equilibrium itself (082).

A stronger claim warns:

An uphill [rising CD4] level might cause retaliation (094).

Failing to maintain CD4 levels in a state of moderation and equilibrium, the harmony within the whole microcosm of the body might collapse. An acceptable quantity and quality of CD4 cells, therefore, is no longer based only on absolute criteria but rather on subjectively prescribed frames of reference, which were shaped by a cultural worldview and health beliefs, continuously negotiating with, if not totally rebelling against, biomedical reductionism.

Immunity maintenance and enhancement

The participants’ response to surrogate markers, their discontent with reducing the complex dynamics within their microcosm to simply two indices, was reflected in their management of immunity from a holistic perspective. Most participants presented a positive outlook in response to the question: ‘Do you think maintaining immunity is very easy, easy, somewhat easy, difficult, or very difficult?’ Thus, more than half (64.1%) were optimistic, considering it very easy or easy to maintain immunity. Yet about one-quarter (25.2%) were pessimistic, indicating this task as difficult or very difficult. The remaining 10.7 per cent, however, did not hold a strong position or give specific answers (Table 1).

Despite their varied responses, most of the participants were well aware of the effectiveness of ART in maintaining immunity (Table 1). Participants also reported their engagement with six domains of immunity-promoting strategies: (1) changing undesirable health practices (93.2%); (2) maintaining mental health, including engaging in religious or spiritual habits (87.4%); (3) dietary modification (85.4%); (4) regular exercise or physical activities (68.9%); (5) modifying risky behaviours such as smoking, alcohol drinking, betel nut chewing, drug use, and so on; (44.7%); and (6) using CAM (33.0%) (Table 1).

Immunity optimism:  Taking medicine ‘regularly’ was the top principle proposed by the optimistic respondents for maintaining immune fitness. Although affected by the adverse effects of ART, many were still willing to endure these in order to achieve a normal-range CD4 count and undetectable viral load. They expected not only to survive but also be emancipated from ART treatment. To live without ART, not necessarily to enhance immunity, was thus the appeal that sustained ART adherence.

The ART believers considered that ART itself was enough to prevent the decline in immunity caused by HIV. Additional remedies were not necessary. Yet for others, ART was not the only and ultimate assurance. The adoption of a healthy life style and a regular rhythm of daily living were emphasised as other methods. Many respondents confessed a life of debauchery and disorder before their HIV-status was confirmed. Their new status had prompted them to make a radical change towards a prudent lifestyle. This ‘turning over a new leaf’ reflected a personal Renaissance that they appreciated.

Besides the physical aspects of living, such as sleeping, diet and physical activities, mental wellness was even more strongly stressed, revealing their belief in the biopsychosocial mechanism of immune functioning.

Having a cheerful state of mind is most important. Some have their CD4 count below 10 or below 100 but they still live a good life, not necessarily leading to AIDS (025).

‘Great mood’, ‘peaceful mind’, ‘calm’, ‘positive thinking’, ‘joyful’ and other similar expressions were used to convey an orientation towards spirituality and body-mind unity.

Immunity pessimism:  To some however, immunity maintenance was always demanding and painstaking. Except for a lack of willpower, two hurdles in particular hindered the pessimistic participants from taking on the task of strengthening their immunity. Notably, what had been proposed by the optimistic respondents as the top principle for maintaining immunity, adherence to ART, had become the top impediment for the pessimistic persons. ART was felt to jeopardise their efforts to enhance immunity in many ways. Either the intake of the drugs per se (hard to swallow or feel sick) or the side effects were felt to lead to the development of resistance to ART. Furthermore, the demand of regularity in taking ART also seriously interfered with the daily rhythm of life. Nevertheless, although some could not adhere strictly to ART, hardly any of the participants in this study completely rejected this intervention.

Perhaps even more deeply affecting the effort to find better health were their meagre living conditions, which enmeshed them in a struggle to sustain even a minimum mode of survival. Maintaining immunity was then seen as a luxury.

It all depends on one's living, working, and financial conditions. I have to work due to economic pressure. The shift work I am having now does not allow me to take complete rest. Therefore it's hard to take care of my immunity (030).

Also, job-related obstacles, from work stress to unemployment, became an impediment to improving their immunity, as has been fully captured by the following statement:

To enhance immunity you need a holistic, all-embracing approach. For example, you have to first of all take care of your livelihood . . . [so] having a stable job [is necessary], and attention to other aspects of daily life then becomes possible (034).

Sometimes it was the patients’ own health status that caused frustration. Poor wellbeing, whether judged by clinical indicators or subjective perception, dampened a desire for improvement.

Specific strategies:  Two specific domains of immunity enhancement strategies, use of CAM and restriction in sexual activities, merit further elucidation.

Consumption of special dietary products was common, including a variety of items such as vitamins and minerals, bee propolis, Chinese style tonics such as ginseng, swallow's nest soup, chicken essence, cordyceps and five-elements vegetable soup. The most often self-prescribed complementary remedy was Chinese herbs, followed by massage. The remainder included acupuncture, qi-gong, and meditation. Nine respondents joined research projects, mostly randomised control trials, where they were prescribed items such as herbal extracts or energised water.

The CAM users emphasised that its use had multiple purposes, not limited to immunity enhancement alone. Thus, they depended on these special remedies to relieve side effects associated with ART and to achieve relaxation and stress reduction. Although they all considered CAM to be helpful, none of the respondents reported CAM replacing conventional treatment (ART). As a whole, these modalities were used exclusively as complementary rather than alternative strategies.

The relationship of sex to immunity was understood by the participants as very complicated. The reason we were interested in exploring this issue further derives from the notion of ‘sexual hygiene’ developed in traditional Chinese society. Sex is considered critical for one's vitality and wellbeing, either beneficently or maleficently, depending on whether harmony and equilibrium is achieved (Straten 1983). This is also a popular folk belief in Taiwan.

Approximately one-third of the respondents (31.1%) did not think that sex would deteriorate or have any negative impact on immunity:

Having sex can release emotional disturbance, which consumes energy but has nothing to do with immunity (003).

You always have a great feeling after sex. If suppressed, it would result in discomfort and negative feelings. So don't suppress it. Just follow the natural way (071).

Even more assertively, some claimed that sex posed no harm to immunity regardless of the frequency. Around half (47.6%) however, gave an indecisive response.

. . . [sex] should be joyful . . . won't cause disorder. But if overindulged, vitality goes down and so does immunity (038).

Thus, only when sex occurred done in a right way and with appropriate frequency would it do no harm and be even beneficial to immunity or health.

Finally, some respondents (11.7%) firmly believed that sex itself would definitely cause immunity to wane drastically, regardless of amount and frequency.

As soon as you do it [have sex], immunity declines (024,036,058).

The more you do it the weaker immunity becomes (042,055).

They advocated absolute abstinence, to which every HIV-positive person should adhere, not only for their own health and immunity but also for that of others. Statements such as the following convey their strong altruistic sentiments:

Don't make any physical contact with any person [as long as you are HIV positive] (082).

HIV persons should not have sex any more . . . but it would be acceptable only if their sexual partners were also HIV positive (094).

Certainly, some of the participants expected a desirable condition, for example:

I am concerned more about viral load [rather than CD4]. A zero viral load allows me to do whatever and go wherever I like (063).

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Acknowledgement
  8. References

Invalidity and discontents

Through a long-term dialogue with CD4 counts and viral load, these HIV-positive participants have shaped a personal outlook regarding these markers and developed pluralistic ways to make sense of them. They re-conceptualised the predetermined range of acceptable counts and cut-off values by incorporating frameworks from other medical theory and worldviews, notably Chinese notions of health and healing, into the dominant doctrine of biomedicine.

These participants demonstrate a flexible style in rationalising immunity or overall wellbeing, whether it was in terms of adequacy, stability, moderation, or equilibrium. Diverging from the conventional ‘self versus others’ discourse (Haraway 1993, Napier 2003), respondents show little evidence of ‘chucking out interlopers’ (that is, others). Rather, they were more committed to strengthening the self instead. In this sense, ultimate immunity was tackled within the context of personal constitution, which can be and was always characterised qualitatively by these participants, representing a Chinese viewpoint on the nature of body. It is noteworthy that a health professional like Dr Hsu did not promote the quantification and standardisation of the immune capacity. The way he responded to his HIV clients’ bafflement and anxiety at any test result that showed them to be outside the ‘normal’ range was to stress individual differences and sufficiency. Thus, despite discrepancies in biomedical training, congruence could exist between patients and their physicians in their understanding of the meaning of markers.

Two features thus characterise lay immunology as applied to HIV/AIDS experience. First, numbers, values, counts, and any other quantitative measure were no longer perceived as all-important. The validity of numerical readings to represent the state of a specific bodily state was questioned. A second related finding is that there was no universally agreed criterion for defining the quality of immunity; rather, relativism and eclecticism were used.

Therefore, without totally contesting the biomedical doctrine, people living with HIV/AIDS have shaped their own epistemology by blending aspects of various medical theories, conventional wisdom, and personal experiences to cope with surrogate markers. This epistemic pluralism reflects sensitivity to cultural tradition and belief, and therefore is more contextually flexible than the universalising and instrumentally convenient approach of biomedicine to specific cut-offs or counts.

Surveillance beyond surrogate markers

Engaging in immunity management, these respondents had to develop means to monitor immune performance. A public health or clinical surveillance system collects empirical data to monitor and launch evidence-based measures conducive to population health. In the personal surveillance system developed by our participants, the observed clues and living experiences were integrated to ascertain the bodily state and make decisions on illness management.

Without fully recognising CD4 count and viral load, these HIV participants relied on multiple sources of clues to inform themselves of their immunity status. Of the referential indications they used, self-perceived physical and mental clues were perhaps the most convincing to them, including symptoms and disorders, physical appearance, and emotional fluctuations. In particular, ‘catching a cold’ was the most widely identified indication. After all, the cold-related symptoms are much easier to perceive and can thereby inform a person of his immunity, compared to the invisible and unperceivable CD4 cells and virus particles. Thus, laypersons have found their own methods and markers for self-monitoring and surveillance.

Self-monitoring of CD4 counts and viral load level, as advocated by health care and public health professionals, is meant to assign responsibility to the patients, as is routinely done for various chronic diseases. A complete surveillance system is hierarchical in nature, from self-surveillance at the individual level, clinical surveillance through patient-physician interaction, to public health surveillance at the population level. But number and cut-off values provoke anxiety and distrust in people experiencing disease so that, as we have seen, they may develop qualitative markers for self-surveillance that challenge the authority of biomedical perspectives. An understanding of this contributes to our understanding of the effects of biomedical knowledge and its technological interventions.

Pluralism in immunity enhancement

In response to the elusiveness and uncertainty of surrogate markers, the respondents developed four strategies for immunity management. As a whole, they tried to sustain and nourish their HIV-infected bodies with an immunity enhancement enterprise aimed at regaining immune function, following its deterioration by HIV.

First and foremost, to directly target HIV, conceived of as an intruder, ART was seen as a necessity. Without fully understanding the mechanism behind ART, these respondents believed that the treatment either suppressed the virus's power or killed a percentage of viral particles. This might be thought of as a ‘germ suppression’ strategy. The second, representing a germ-avoidance strategy, was conservatism in matters of sex, either avoiding or reducing sexual practices as much as possible, or engaging in sex only with protection to prevent additional attack and harm caused by germs other than HIV. It should be noted however, that hesitation and cautiousness with regard to sex was largely thought to reduce further risk rather than maintain immunity. Both germ-suppression and germ-avoidance strategies were engaged in to prevent further decline of an already weakened immune system and the health of the body in general.

The third strategy included lifestyle management to modify different aspects of daily life routines. This strategy was directed at nurturing the micro-environment inside the body to consolidate inherent qualities of bodily essence in the effort towards health maintenance or recovery. This essence, designated as physical constitution by some of the respondents, has to be kept in a desirable condition. A well-supported internal body environment is felt to uphold immunological activity and ready the immune system to manage adverse conditions, such as opportunistic infections. Finally, practices such as the use of CAM exemplified a more explicit strategy to construct a robust personal constitution which might maintain or boost immunological health.

These strategies were adopted to build up a personal, multifaceted infrastructure for sustaining immunity. For some, changing their lifestyle to remedy past deviance and return to a ‘norm’ of positive living was itself encouraging and powerful because of the moral satisfactions associated with it. Similarly, taking an altruistic approach towards sexual contact indicated a moral commitment that participants found sustaining.

In conclusion, a disease category like HIV/AIDS illustrates the instability of techno-scientific medical approaches, and a situation where lay and professional epistemologies are evolving. We have shown that discontent with the use of ART and reliance on the two markers led persons with HIV to develop alternative rationales, involving an ethos of holism, naturalness, and integration, reflecting the ‘heterogeneities of biomedicalisation practices and effects in different lived situations’ (Clarke et al. 2003: 185). Despite the epistemological gap between patients and professionals, both parties aim at the same goals. As living with clinical markers becomes a common experience of daily life, the emergence of these markers, the dissemination and reception of their clinical implications, and lay perceptions and reinterpretations of markers, is an important topic for further research.

Acknowledgement

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Acknowledgement
  8. References

We acknowledge the financial support from National Science Council grant (NSC 93-2412-H-002-001) and Centre for Disease Control (DOH91-DC-1063) for this study.

Notes
  • 1

     CD4, or CD4+ (T4) cells, are a type of T cell involved in protecting against viral, fungal, and protozoal infections. In general, the CD4 count is the most commonly used surrogate marker for assessing the state of the immune system. The normal range of CD4 cell counts is 500–1500 per cubic millimeter of blood.

  • 2

     Literally, mian means prevent from or avoid; yi means diseases or plagues; li means power or capability.

  • 3

     Particularly at a time when many people were flocking to consume a wide variety of immunity-strengthening dietary items and herbs, a strong warning came from the government and health professionals against this misconception and practice, claiming that excessively strong immunity may result in even worse outcomes if one contracted SARS.

  • 4

     Because physicians in Taiwan have always referred CD4 to their patients by its direct transliteration from English, in this study, the researchers and the participants all spoke about ‘CD4’ as in English.

  • 5

     Both cocktail therapy (ji wei jiu liao fa) and anti-virus drug (kang bing du yao) are the common terms used by HIV/AIDS patients in Taiwan when referring to ART.

  • 6

     A zero viral load is indicative of an undetectable level of virus, although none of the participants reporting a zero viral load used the term ‘undetectable’. They believed that it meant there were no viral particles within their body.

  • 7

     Ti-zhi denotes personal constitution. Literally, ti means body and zhi quality. It is an indigenous health concept prevailing in many Chinese societies. In Taiwan, ti-zhi is a daily term for laypersons to conceptualise their state of wellbeing and on which to base their health-promoting activities.

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