Chapter Seven: Treatment

The ill in modern western societies are expected to place themselves in the hands of the ‘science’ of medicine: being sick and being treated have become synonymous. (Lupton 2003:93)

For people living with chronic hepatitis C the issue of treatment is a central concern. Currently the standard pharmacological therapy for hepatitis C is a course of interferon (pegylated or standard) and ribaviron, lasting from six to twelve months depending on the genotype of the individual. This treatment comes with a number of debilitating side effects, and as its efficacy is not guaranteed the issue of whether to embark on treatment is a fraught one for many. A therapy that produces more negative effects than the initial illness is what Illich terms iatrogenesis. Iatrogenesis comes from iatros, the Greek word for physician and genesis, meaning origin (Illich 1976:3). Taking on a physician-originated illness with no guarantee of efficacy is a hard call for many. The decision to go on interferon treatment is regulated by contextual factors, such as workplace and family situation, availability of support and issues regarding disclosure, and for ex-addicts the fear of relapse. Alternative and complementary therapies such as Chinese medicine, homeopathy and naturopathy are utilised by some with hepatitis C. These therapies are useful in alleviating symptoms, and possibly slowing disease progression. While being functional in improving the illness experience, alternative therapies are seldom seen as providing a ‘cure’ and so may be treated dismissively by the Western biomedical system.
Interferon
Clinical iatrogenic disease comprises all clinical conditions for which remedies, physicians, or hospitals are the pathogens, or “sickening” agents. I will call this plethora of therapeutic side-effects clinical iatrogenesis. (Illich 1976:27)

Interferon therapy has been the standard medical response for treating chronic hepatitis C since the early 1990s (Jenner 2003). Developments to this treatment regime have been the addition of ribaviron (standard combination therapy) and the recent development of the longer acting pegylated interferon. The desired outcome of interferon treatment is a sustained virological response (SVR), determined when there is no virus detectable six months after treatment. For this reason the notion of interferon as a ‘cure’ for hepatitis C is problematic, as a SVR or ‘treatment induced latency’ (Sievert 2001:153) indicates the suppression of detectable hepatitis C, not its complete elimination from the body (Jenner 2003, Sievert 2001). The virus may re-appear after a SVR has been noted, especially in the two years following treatment cessation. A number of variables contribute to the efficacy of combination interferon treatment. These are the individual’s genotype (two and three more responsive), gender (women more responsive), age (younger the better), length of infection and health of the liver. Thus the paradox of interferon therapy is that individuals who are the most likely to respond to treatment are less likely to need it immediately (Dolan 1999).

Of the twenty participants in this study the majority had been offered interferon and ribaviron treatment. Nine took up this offer with three clearing the virus. The interferon used in hepatitis C treatment is a synthetic version of an interferon naturally produced by the body as part of the immune response mechanism (Dolan 1999). It needs to be administered by subcutaneous injection (three times a week for standard, once a week for pegylated), as if taken orally it is destroyed by the stomach enzymes (Dolan 1999). Ribaviron is taken daily in tablet form. Treatment duration is dependant on the individual’s genotype. Genotype one and four are the most difficult to clear and require twelve months therapy, whereas genotype two and three need six months. SVR rates for New Zealand most common genotypes, one and three, vary between 33% (genotype one) and 65% (genotype three) using standard combination therapy. Pegylated interferon combination therapy is the most effective to date, with 50-80% of those treated achieving an SVR (Weilert et al 2004). One of the main barriers to treatment success is the intolerability of its side effects, which have led to discontinuation rates of up to 21% in large clinical trials (Sylvestre et al 2004). The most common of these effects are flu-like symptoms (fevers, chills, muscle and joint aches), debilitating fatigue, depression, headaches, nausea, hair loss, skin rash/irritation, anaemia, anorexia, irritability, insomnia, anxiety, and ‘emotional labiality’ (Sylvestre 2004, Swan and Raymond 2004, Dolan 1999).
Restitution, quest and chaos
The story of interferon treatment is one of restitution, but this is a narrative where the clinicians play centre stage, and very often the patient is silenced or relegated to the sidelines. It is a narrative of treatments, trials and sustained response rates, one which is “better told by physicians themselves, in their own journals” (Frank 1998: 201). Thomas-McLean (2004), who uses Frank’s framework in her analysis of breast cancer narratives, reports that the restitution narrative is the story form most desired by her participants. Often it is utilised in a contradictory manner. While “restitution narratives reflect the desire to return to a time when life was ‘normal’” Thomas-McLean asks if it is possible for these women to return fully to their pre-diagnosis state of health (2004:1651). The desired ‘return to normality’ is problematic for many as treatment often leaves its trace, and for Thomas-McLean’s participants this was evident in the visceral reminder of an absent breast. As Lorde (1980) states, of her experiences of breast cancer and mastectomy, the pressure put upon women in this position to wear a prosthesis is that of maintaining a pretence that ‘all is back to normal’. This denies the very real loss and grief felt in this situation and forecloses the ability to integrate bodily and psychological change.

A desire to return to one’s ‘normal’ state before the onset of illness suggests biographical disruption: that there was stability in the life previously experienced. However, as outlined in chapter three, the concept of biographical disruption is contextual. It does not apply as easily for people whose lives were already chaotic, such as those of the ex-intravenous drug users in my study. The life they had before illness diagnosis was not ‘normal’ and for most, not one which they would wish to return to. In having gained a distance from the chaos of their using experience many ex-users utilise the quest narrative to reflect upon their past lives. Likewise the experience of interferon treatment can be placed in the context of a quest, regardless of its outcome:
… when I went on the treatment the second time they approved me because I was with two children, I survived, there were only two of us who survived the 32 weeks, just another guy and me.
What happened to the others?
They couldn’t handle it (the side effects).
Were the side effects really severe for you?
They were but it was just my weight, my weight was going down and down and down, so they pulled me off it after 32 weeks they thought that I’d had enough. (Marianne)
While Marianne’s experiences on interferon were chaotic and debilitating, she downplays this, instead expressing pride that she was able to ‘survive’ and withstand the side effects longer than most other trial members. When I asked her if she would go on the treatment a third time, despite the dangerously low level her weight can fall to, she replies “Yeah, I’d give it a go, I’d give it ago for sure”. Marianne’s description of her experience is reminiscent of reality TV shows such as ‘Survivor’ where one team or individual must withstand the odds longer than their opponents. In this sense interferon treatment for Marianne constitutes a quest; it is seen as a trial in the journey of illness, to be experienced as an adventure, not knowing where it will lead.

Just as interferon treatment constitutes a quest for Marianne her dialogue also contains elements of restitution. She expresses faith in the medical system and the willingness to endure future treatments in the hope that one may work. As Frank states, this is not uncommon, for the narrative types are not exclusionary. In one story all three forms can be found, presenting a slippage of dominance from one to another (Frank 1995). While Marianne kept her chaos in the background, for most participants it came to the fore when recounting their experiences of treatment:
… everyone said to me and to (partner) it gets better, it gets better, but it doesn’t, and I think they tell you that just to keep you hanging in there because it is just absolutely wicked it is just cruel. But I mean my mental state, like I came off it two and a half years ago now, and it has taken me really up until now. I had really long hair, all my hair fell out, I got the full force of it; by the end of it I was just on my knees. It has definitely taken a couple of years for me to recover from that treatment. Even within six months of coming off that treatment I was in respite care, I had had a nervous breakdown, emotionally in a terrible state, I was just sobbing, I was brought to my knees, and that just went on and on and on, and then it lifted about, that hung in for about 18 months even after the treatment had stopped I still felt absolutely wretched. (Ruby)
Just as the content of Ruby’s narrative is chaotic so is the form. The cacophony of events tumbles over itself, creating a waterfall of words rather than an ordered narrative pathway. This ‘verbal stockpiling’ (Thomas-McLean 2004) is that of the chaos narrative, where the endless troubles are both articulated and experienced in an overflowing and fractured manner.

The medical system and physicians within it have little time for the chaos narrative. Their story is one of restitution, and of stoically getting on with it and getting better. Individuals’ considering going on a treatment as debilitating as that of combination interferon therapy need to be aware of exactly what to expect, and be supported through the chaos when it occurs. However, unwelcome side effects are often deemed by the medical profession as “patient concerns rather than medical concerns” (Rosengarten et al 2004:581) and marginalised in relation to the potential of a ‘cure’. Side effects are often downplayed or not mentioned by doctors hoping to “encourage patients to look on the bright side” (Dolan 1999:209), but this is often counter-productive. Ruby’s experience of treatment may not have been so chaotic if she had been given better information:
So definitely I think there should have been more education about just what we were in for, what to expect, at least give you a bit of warning as to what to put in place for yourself. (Ruby)
Ruby’s viewpoint is supported by Miranda’s experience where she, determined to find out what she was in for, approached others on interferon to gather her own information:
I wrote out a letter which I gave to (nurse) inviting people who were actually on the treatment so I could hear from the horse’s mouth, because I can feel that clinicians were only giving me a certain view of the real process. So three women contacted me who were on it … as I had surmised you got the real news. So again I was gathering accurate information about just how tough it was and how debilitating the side effects are … it was useful for me because I was really well prepared when I started, I had my life kind of structured and I think I managed to survive it reasonably well. (Miranda)
Relapse: syringes and side-effects
Issues of compliance to the treatment regime are emphasised in much of the literature on interferon therapy (Strinko et al 2004). Side effects are here addressed as a barrier to adherence, with little heed paid to the meaning, dangers and dilemmas they pose to the lived experience of people with hepatitis C. Only Dolan (1999), Swan and Raymond (2004) mention the risk posed to ex-intravenous drug users by the need to inject interferon, and this is but briefly. Relapse is a very real risk and fear for ex-intravenous drug users embarking on interferon treatment. Not only can the necessity of having to inject the drug be a trigger, but the side effects, both physical and mental, may precipitate a return to drug use to try and alleviate these maladies. Interferon is well documented to produce ‘flu-like effects’, as well as ‘emotional labiality’, anxiety and depression (Dolan 1999). For an individual who has experienced an opiate, or other drug addiction, these symptoms are very much like ‘hanging out’ (chemical withdrawals), and in that respect, there is one sure-fire known way to temporarily relieve that discomfort – through the use of drugs. A relapse back into active addiction then creates a situation invariably more life-threatening than that of hepatitis C alone (Dolan 1999:174).

The danger of relapse does not seem to be significantly attended to by specialists able to prescribe interferon. This can be seen in Robert’s experience where he was encouraged to begin interferon treatment shortly after leaving a drug rehabilitation centre:
… when I went in he [specialist] goes ‘good news’ I was in (support house) by that time and he goes “good news you’ve got the number three type, the easy type, I want you to go on interferon now, today!” He said you can go to counselling. ‘Cos I said I am really worried about depression. And he said don’t worry you can go on antidepressants; I said I don’t want to go on antidepressants and in the end I said look lets just give us six months. (Robert)
Robert was able to stand up to the specialist’s insistence, as he had seen a number of people go through the interferon program, and was well aware of the possibility of relapse:
… all I knew back then was that people that did interferon, people who first started doing it, in Christchurch in NA they would only last like a month and then they’d stop, they couldn’t handle it, or they’d go off and use.(Robert)
Similarly he was aware that the issue of having to inject the interferon could be a dangerous trigger:
I think it would be a trigger for me. I’m sure I could get through it, but fuck I’d rather not be playing around with needles … it will make me want to use. (Robert)
None of these issues were addressed by the specialist Robert saw, and even his concerns regarding depression were brushed off in a cursory manner. Sometimes the optimism that doctors may have of their patient achieving a sustained response can cloud their view of the other dangers that this treatment may pose.

While none of the participants I spoke to had relapsed through interferon therapy, the fear of this happening prevented a significant number from embarking on treatment. As well as relapse, suicide and psychosis are also known to have been triggered by interferon therapy (Burke 2001, Loveday 2003, Onyike et al 2004). These generally relate to interferon’s psychiatric side effects which are acknowledged to be prevalent, (Dolan 1999, Burke 2001, Onyike et al 2004) and are often more distressing than the physical. Physical long term effects can originate from interferon therapy, although these are seldom discussed in medical consultation. Marianne was unprepared for her side effects. She describes being “scared” by her dramatic hair loss (which eventually grew back), but far more devastating was the long term damage sustained to her eyesight:
…the worst thing that’s happened to me is my eyes.
Tell me what happened with that.
Well my eyesight was really bad, and I have to wear glasses now, and I can’t drive at night time very well because the flashing lights, I don’t like bright lights. At night time I watch TV with candles ‘cos I don’t like brightness, and that’s from the injection. ‘Cos I never had that problem before.
Have you talked to the doctors about that?
Well they said it’s a combination of both my age (48) and the interferon.
So this is an ongoing thing.
Yes, I never thought I’d have to have glasses. I noticed when I was on it that my eyes would get very sore, and more so now. (Marianne)
Marianne also has not had her appetite return to normal, despite having her last round of treatment five years ago. At the other end of the spectrum Ruby sustained a massive weight gain during treatment which she has not been able to reduce. This is most likely due to interferon related thyroid damage.

The amount and quality of dialogue between doctor and patient is critical in the individual’s decision to undergo interferon treatment. For patients who are unaware of what to expect from treatment, chances of their adherence to the regime diminish. The importance of side effects for the individual needs to be acknowledged and discussion encouraged so strategies can be put in place for coping throughout this difficult time. Management strategies are generally in place for side effects such as depression with anti-depressants considered a standard adjunct to therapy. While these may be efficacious, many consider this a white-wash and for those who do not wish to take them other avenues such as counselling or peer support are seldom explored. Side-effects rendered more ‘trivial’ such as hair loss and weight changes also need to be acknowledged as potentially carrying a significant psychological impact. Apart from the burden of having to negotiate interactions in a society bombarded by images of the healthy and ‘beautiful’ while looking like death warmed up, the impact of physical effects for people who haven’t disclosed their status is substantial.
Fears and dilemma
I found fear laid across my hands like a steel bar. (Lorde 1980:15)

For individuals who tend not to disclose their hepatitis C status, the issue of whether to go on the interferon therapy adds a whole new dimension to the illness experience. While the symptoms of hepatitis C are generally able to be masked or explained away, interferon treatment with its raft of effects is not that easy to cover. Elisabeth who is extremely reticent in disclosure, has for the last year been preparing herself for the prospect of interferon therapy. This involves putting in place measures which would enable her to avoid the everyday gaze of enquiring eyes:
I had started making changes to my management late last year. I shifted my career to the degree where I don’t have to go and see people so much. So I can actually see them for maybe one appointment, where I could disguise myself or send my partner who also does the same sort of career, so he could go in my place and I could do all the background type of stuff like phone and fax and email so I didn’t have to see people. He has brought a piece of land up north, and I was going to hole up there. I was actually going to run away and deal with it. Go into my cave. (Elisabeth)
The prospect of having to hide from the world in order to undergo a potentially debilitating treatment is daunting. It is also counter-productive as this is a time when inter-personal support can be the most valuable. The fact that Elisabeth and several other participants expressed the need to hide during treatment is indicative of the stigma that surrounds this illness and the negative effect it can have on a chance of recovery.

The most significant dilemma articulated by participants was that of the desire to take a treatment that could potentially clear the virus, against their fear of potential side effects. On both sides of the equation is the element of the unknown. It is impossible to tell on an individual basis whether interferon treatment will be successful and what its effects will entail. These are very real fears, and while the attitude of ‘living one day at a time’ may be beneficial in day-to-day illness management, it does not help when looking down the barrel of six months, one year or longer, of continuous physical and psychological effects. The ethos of living in the present, as espoused by Narcotics Anonymous, makes it difficult to weigh a long term potential gain against continuous short term ill effects. The dilemma of what to fear is expressed by Frank in terms of “embodied paranoia”1:
Embodied paranoia is not knowing what to fear most, and then feeling guilty about this very uncertainty … Embodied paranoia reflects a blurring of internal and external: everything has the potential to threaten. (Frank 1995:174-6)
‘Embodied paranoia’ is a symptom of the unknown and of the self-doubt that comes when one is urged to undertake a potentially curative treatment and is ashamed of being afraid. Fear was a dominant theme among participants who had not undertaken treatment. Here Rose expresses her fears:
That it makes your body a war zone pretty much, depression, suicidal tendencies, the energy and nausea and just feeling really, really yucky and just being out of control, you know I don’t feel I have much of it [control] … if I was really, really sick I don’t feel like I’d have much of a support system, I don’t have lots of savings, I don’t have any one else to rely on, what if I get real sick and I can’t work, who is going to look after me, you know I have to think about that as well. (Rose)
Complementary and alternative medicine (CAM)
Due to the fears and dilemmas created by the prospect of combination interferon treatment many of my participants turned to complementary or alternative medicine (CAM), not necessarily in the hope of a cure, but to aid their illness experience. The terms ‘alternative’ and ‘complementary’ are relative, in that they refer to the additional use or absence of conventional biomedicine. Sharma (2001), Jenner (2004) and Foote-Ardah (2003) in their writings on CAM all make reference to the push-pull debate. This debate is one of whether individuals are pushed towards using CAM because of unsatisfactory experiences with the biomedical system, or pulled towards CAM because it is seen as congruent with their own world views and personal health beliefs. Foote-Ardah in her work on HIV/AIDS and Jenner on hepatitis C, propose similar versions of a third view, which sees individuals as active agents who approach treatment decisions pragmatically. Sharma (2001) and Waller (2004) reflect the push side of the debate, finding that their participants predominately turned to CAM as a result of dissatisfaction with orthodox medicine. Alternative treatment modalities were experienced as valuable in that they offered validation and treatment for symptoms that were not available from conventional medical sources. These findings very much echo the experiences of my participants in their use of CAM.

In general, alternative medicine focuses on wellness rather than illness: it aims to promote health by maximising the body’s own immune response rather than directly attacking pathogens (Brown 2004:2). This is an attractive option for many people and Sharma’s (2001) study of why people used alternative treatments raised central issues articulated by many of my participants. These include the fear or dislike of drugs that are seen as too invasive and their associated side effects. Another issue was “the perceived inability of conventional medicines to cope with the social and experiential aspects of illness” (Sharma 2001:103-4). Many of my participants expressed a desire for information and support around the day-to-day aspects of living with hepatitis C, and that the personal context of their illness be taken into account. The often impersonal and hurried experiences with GPs and specialists contrast with the experiences of visiting alternative practitioners. At alternative practices longer consultation times are common, often a detailed case history is taken and information is available on ways to help alleviate symptoms, to cope on a day-to-day level, and care for the liver.

Several participants felt that unless they were willing to take on interferon treatment, the medical profession had nothing else to offer them:
… it’s like oh well we’ve got this option [interferon], then that is it, kind of thing. If you are not going to take that then you can just fuck off really. (Justine)
… basically have interferon or have a horrible life, you know. With interferon you have got a bit of a chance of having a better than horrible life, or you might even end up having a worse one. We have got nothing else to offer you. (Matthew)
The fixity of the medical profession on interferon was generally at odds with my participants’ desire for information on ways they could best manage their illness. The lack of satisfactory dialogue between patient and doctor can be seen to be a result of differing belief systems: they are vested in different narratives of outcome. Matthew’s experience is indicative of such a situation. After finding that he is physically unable to inject his interferon he decides to return it all to the hospital and announces:
I said to them that I believe my faith and plus I had heard negative reports about the interferon, and that I would like to try Jesus and herbs.
How did they react to that?
Um he [specialist] was quite angry when I mentioned Jesus. (Matthew)
Matthew’s belief systems are diametrically opposed to that of the medical profession. His returning of the interferon and announcement of faith in “Jesus and herbs” was probably viewed as an act of madness and disrespect. However Matthew is fervent in his beliefs. It is such differing intractable belief systems which result in “the multitude of daily interactions where people hurt each other because they ignore what they are unprepared to hear” (Frank 2002:20).

Similarly, in Sarah’s experience all of her interactions with the medical system were deeply unsatisfactory. In Illich’s words the medical system “tends to mystify and to expropriate the power of the individual to heal himself and to shape his or her environment” (Illich 1976:9). This rings true for Matthew, Sarah, Ruby and other of my participants. In a profoundly vulnerable state, Sarah found the harsh ministrations and limited options of conventional medicine scary and upsetting:
Dr X just said oh well there is nothing we can do, except send you to the hospital and I didn’t want to go because what I thought they would do was just, the doctor said there was nothing they could do, they would do a biopsy or a, and I didn’t want, I was in so much pain, and so unsupported and so isolated, in pain and upset, that the last thing I wanted was for someone hurt me. That wasn’t my idea of anything helpful at all. (Sarah)
The medical system’s inability to respond effectively to Sarah’s narrative of chaos exacerbated her feeling of fear and isolation. This was eventually dissipated when Sarah found a naturopath who listened to her story and provided her with the natural, more ‘gentle’ treatment she desired. In this way Sarah, who had been severely incapacitated by her hepatitis C, was able to feel more supported and alleviate some symptoms by taking herbs and carefully modifying her diet.

In general, complementary medicine is used with the aim of enhancing the outcomes of conventional medicine and to support physical, mental and emotional wellbeing (Brown 2004:2). In this sense individuals with hepatitis C may use other treatment modalities such as acupuncture, herbs or supplements to help alleviate the side effects caused by interferon, and to improve the chance of a positive outcome. Miranda before considering interferon therapy tried many different treatment modalities:
I had tried changing diet, naturopathy, homeopathy, kinesiology, acupuncture, I have had two courses of Arvada, I had tried urine therapy, drinking your own urine, um. (Miranda)
She then went on to apply her knowledge of alternative therapies to aid her interferon experience. Miranda describes how she uses yoga practices and massage to help her through her interferon treatment. She says of the massages that they not only help her body but keep her occupied, and provide the human contact and connection that she needs during this period:
I do daily stretches and exercises and some days I can’t, some days I go for a walk and some days I can’t. And I’ve started to have fortnightly massages, because the toxicity seems to be really gathering … there is tension in places where I have never had tension before, and fluid build-up, so I am scrimping and saving to be able to do those things for myself … Because it is not just about getting a massage, it is also about giving myself something to do … (Miranda)
The reference to ‘scrimping and saving’ to be able to afford massage or other therapies is a common theme among my participants. Often a low income precludes their ability to access CAM, or results in the sacrifice of basic necessities.
Economics
Sharma (2001) refers to the hypothesis that users of alternative medicine are possibly marginal people as well as users of marginal medicine (Sharma 2001:102). While this may have been initially so, CAM has largely moved into the mainstream, becoming yet another facet of consumerist society. Indeed if anything CAM is now a preserve of the middle class, being harder to access by marginalised individuals because of the financial cost. While my participants have reported a more satisfying treatment experience due to longer consultation times and attention paid to the individual’s social and emotional context, this attention does not always come cheaply. CAM is not subsidised by the New Zealand Government unlike recourse to GP visits, hospital care, and most forms of combination interferon therapy. For those of my participants who are on a low income the use of alternative therapies was not always an option. Ruby’s experience was that of a complete breakdown during interferon treatment. She felt conventional treatment was the only option available to her as she could not afford the desired naturopathy. Although interferon resulted in an SVR she declares that she would never again put herself through that experience:
And if it wasn’t for the financial side of it, if there was another option if I could have done it, if I had the money I would’ve. If I knew what I know now and I had the money, if it ever came back I think I would do it naturopathically. I couldn’t put myself through that again. But I cured it, so I can’t whinge too loud. But for how long is always a worry too. (Ruby)

Matthew’s experience is one of being ‘pushed’ towards CAM. He has found the use of herbs to be beneficial, but due to his long term beneficiary status the use of alternative therapies often means that basic necessities such as food need to be sacrificed:
… basically I wouldn’t give you five cents for the medical, how I have been treated over the years, it is so frustrating, because basically the doctors, they can’t help you and ah that’s sort of what has got me on the natural health road. But it has been such an uphill battle, because one month, one week you have to decide, do I eat, you know, and you get selfish … you think do I eat or take herbs this week … you are basically living on the breadline. (Matthew)
Likewise Sarah who is living in extreme poverty has found the use of herbs incredibly beneficial. This poses a problem due to the restrictions of her budget:
I spend $50 a week on bills, which leaves me $100, and $80 of that goes on food, and the rest goes on medical and a bit of petrol, so there is no dentist, money for clothes, or extras. It is no lifestyle (laughs). There is no money for clothes or haircuts or anything like that. There is nothing … the herbs have helped that (naturopath) prescribed for me, she is someone who I would trust with my life, and I do trust with my life. She is very expensive, $100 a visit, it is the best money I have ever spent … chronic poverty that is very difficult. (Sarah)
Matthew and Sarah’s sustained use of CAM despite severe financial difficulties shows that income level is not necessarily a correlate of CAM use. This finding is reinforced by de Visser and Grierson (2002) who found that many people with HIV/AIDS spent money on unsubsidised CAM despite living below the poverty line. Here the question that needs to be asked is: what necessities did these people have to forgo in order to access complementary or alternative therapies?

Complementary and alternative therapies are regarded by many scholarly authors as providing individuals with a greater sense of control in managing their illness (Foote-Ardah 2003, de Visser and Grierson 2002, Jenner 2004, Manheimer et al 2003, Sharma 2001, Flatt 1999). Treatment regimes are generally more flexible and self-managed than conventional treatment. Also the issue of payment may add an element of personal control. The personal responsibility for treatment payment precludes the ability of outside agencies to exert pressure or feelings of accountability. This should not be an issue as the expense of CAM therapies is problematic, and it would be highly advantageous for them to be subsidised for those in need. However, as participants’ antidotes of interferon relate, subsidies can bring their own additional problems:
I was really very aware of how much it was costing, and the doctors really let me know, all round right from day one, the doctors really let me know what it was costing the government for me to be on this program, how very fortunate I was and this was a very expensive drug and you just better handle it, and do it well, do us proud, you know because this is costing us a lot of money. (Ruby)
Then she actually said ‘you know you are very lucky to be getting this treatment, it is very expensive and it is cutting edge’. And I went stony cold and I said ‘oh yes’ in my sweetest voice ‘I consider myself so lucky, and I am extremely grateful to be getting this for nothing’. (Miranda)
Economic factors play an increasingly important role in influencing access to expensive treatments such as interferon (Dolan 1999). Presently to be eligible for interferon treatment in New Zealand an individual needs to be at least six months drug free. Considerable literature has been written on the prioritisation and inconsistencies of treatment criteria, addressing issues such as whether current drug users should be receive treatment (Edlin et al 2001, Onyike 2004, Leavit 2002, Sadovsky 2001, Sylvestre 2004). Unfortunately due to size restraints this is a topic that I am unable to address in this chapter.
Conclusion
Presently interferon therapy occupies a central role in the medical response to treating hepatitis C. Interferon therapy is caught up in a narrative of restitution, where the fears and desires of patients are often shadowed by the bright light of a possible cure. The efficacy and adherence to interferon treatment could be much improved if individuals’ concerns were attended to and the social, contextual and emotional locality of the patient taken into account. The side effects of combination interferon treatment are debilitating and for some people they may create long term repercussions. Patients need to be made aware of what to expect to enable them to prepare and hopefully gather the support around them that they need. Complementary and alternative therapies are beneficial for many in managing and alleviating the symptoms of hepatitis C. It is distressing to hear people in need making decisions about whether to pay the rent, buy food, or purchase a needed alternative therapy. Acknowledgement by the medical profession of the efficacy of certain alternative treatments would help to promote a case for subsidies for those in need. This use of alternative treatment modalities in a complementary fashion with interferon treatment is likely to provide a more comfortable treatment experience, thus improving adherence and in some cases an increased chance of a sustained viral response. This can only be a positive outcome for all.