XIV International AIDS Conference
Barcelona 2002
It seems to me to be a cruel irony that in a world where 95% of people living with HIV are unable to access treatments, the 5% of people who are able to use these treatments have serious doubts and questions about the effects that treatments are having on their lives. Don’t get me wrong: along with most of my privileged HIV positive brothers and sisters, I am desperately grateful to have access to medications that guarantee that ideally I will not die of AIDS or even suffer from AIDS related illnesses for many years. But at the same time, I share their ambivalence about the drugs that are on offer.
Partly this disquiet is fuelled by the many unpleasant and immediate side-effects of treatments: diarrhoea, headaches, nausea, dehydration, fatigue, disturbances of sleep and thought, and so on. Compared to dying, these are, without doubt, trivial, but even trivial things become unbearable if they have to be experienced relentlessly, day in and day out, forever.
The disquiet is also fuelled by our resistance to the medicalisation of our bodies and our lives inherent in the increasingly technical task of monitoring and treating HIV. We resist the territorialisation of daily life: the intrusion of medication schedules, the replacement of subjective assessments of well-being and happiness with clinical measures of immune function and viral activity.
And lastly our disquiet is driven by profound uncertainty about the long-term impact on our health and well-being of drugs that are slowly and inexorably changing us in both fundamental and superficial ways. It is this last point that I want to explore in some detail today: for while HIV and anti-retroviral therapy disturb our metabolic processes, as my colleagues on this platform have shown, the metabolic disturbances themselves cause other disturbances, ripples that spread out to upset the flow of our lives, our sense of ourselves and our social relationships.
Let me begin this exploration with a personal narrative, my own experience with the metabolic disturbances engendered by HIV treatment. For most of the time since I was diagnosed with HIV in 1995, I have been very lucky. I was not ill when I was diagnosed, and so for the first couple of years of living with HIV, I did nothing more than monitor my CD4 count and later, my viral load, with my doctors. In 1997, we decided to hit hard and hit early, and I began taking anti-retrovirals. My first experience with these life-saving drugs was not fantastic – within four weeks of starting my first combination, my liver refused to cooperate, and I became ill for the first time with an iatrogenic form of hepatitus. I was forced to stop the therapy immediately, but I recovered quickly. Towards the end of 1998, we tried again, and this therapy (based on Indinavir, D4T and DDI) was more successful: my viral load dwindled to undetectable, and although my CD4 count stayed where it was at around three to four hundred, I was able to tolerate the combination, more or less. The addition of Ritonavir the following year meant that my pill burden was decreased, and some of the difficulties of daily life – especially trying to eat and sleep adequately on a regimen that had severe dietary and medication timing constraints – were eased. My viral load remained undetectable, and my CD4 count increased to more than 500. Technically, I was in great shape.
Ironically, it was changes to my shape that now began to concern me. Slowly, the person looking back at me from the mirror was being replaced. I noticed the changes to my face first: I developed indentations and prominent veins at my temples, and my parotid glands swelled. There were also changes to the quality of my skin and hair that are difficult to characterise: it was getting somewhat difficult to recognise myself. And then I started to notice that the rest of my body was also changing. At first I liked the fact that as the fat dropped away from my legs and arms, the muscles stood out more, but then I would catch sight of myself in a store window and realise that my limbs were becoming sticks. I stopped wearing shorts in public, embarrassed by my stick figure limbs. The fat that I was losing off my limbs seemed to be migrating inwards towards the centre of my body: although I have not been exactly trim since my mid-20s, my stomach was becoming noticeably round, I was developing breasts, and a hump at the top of my back. It was very strange fatness that I was developing, particularly in my stomach. I was so thin that I couldn’t even get a pinch of flesh around my middle, and yet my belly was getting bigger and bigger. My father asked me jokingly if I was pregnant, and my brother, a bodybuilder, began to suggest exercises that would help me shape up. My nutritionist suggested that I join an exercise class for people with lipodystrophy that was run by the physiotherapists from my local hospital. My doctor suggested that I change drugs again, replacing D4T with abacavir, as D4T seemed to be one of the culprits implicated in the changes that were occurring. After a couple of weeks on abacavir, I developed a hypersensitivity reaction, and had to adjust the cocktail again, this time replacing Abacavir with AZT. My bodily changes continued noticeably, and my blood chemistry was also now detectably shifting. My blood pressure, cholesterol – both HDLs and LDLs – and triglyceride levels increased, despite my efforts to reduce fat intake. He measured and adjusted the levels of Indinavir and Ritonavir I was taking, trying to establish the minimum therapeutic dose that I could take. This relieved the constant headaches and sleeplessness that I had been experiencing. We added the diabetes medication Metformin to the mix, in the hope that this might reduce the abdominal fat deposits, and improve my triglyceride levels. We monitored my pancreas and continued to look for problems with insulin resistance and mitochondrial damage. For a couple of weeks, it seemed to me that we had achieved some balance – I felt better at least. But then there was a sharp decline in my well-being: it became extremely painful to move, and I was sharply fatigued all the time. It was the onset of lactic acidosis. This was the last straw, and I was forced to abandon treatments for a while.
There are two aspects to this narrative that bear some scrutiny. The first aspect is the impact of metabolic changes on the health and well-being of positive people. In 2001, I experienced the two worst episodes of ill health that I have had since I was diagnosed with HIV in 1995. I was hospitalised for the first time, and I had to stop my anti-retroviral treatment because of side effects. The hospitalisation was a fairly trivial event, but highly significant for me as it was the first time since I was born that I had been in a hospital as a patient. I was admitted for a surgical procedure – to repair an umbilical hernia. The hernia had developed as a result of my overeager approach to exercise to combat the development of lipodystrophy. I was concerned about how fat I was becoming in some areas like my growing pot belly and gynaecomastea, and paradoxically also worried by how skinny I was getting in other areas as the fat was dropping off my arms, legs and buttocks.
In response to my growing shame at these changes of shape, I enrolled in an exercise class for positive men, which used a combination of resistance and aerobic exercise to reduce abdominal fat deposits and increase muscle. However the solid mass of visceral fat deposits and my zeal at crunches and sit-ups were not a good pair and I developed an umbilical hernia and a prominent diastasis rectii, a strange bulge down the middle of my stomach that appeared when I did a sit-up. The hernia became so painful that I could not continue with exercise, and actually made my appearance worse. My belly was not just big and round, it was now also lopsided and somewhat pointy. It was very disheartening, and though the hernia was repaired, the diastasis is still with me, reminding me each day of the irreparable changes that have been made to my body.
The other health disaster of that year was developing lactic acidosis, which made me as ill as I have ever been, threatening my life. These developments have made me think seriously about my future strategies in relation to medication, and I now see antiretrovirals as a last resort. I do
My experience has become somewhat common for people on antiretrovirals. In the recent survey of Australian Positive People conducted by a team of my colleagues at ARCSHS led by Dr Jeffrey Grierson, lipodystophy was one of the most common health problems related to HIV that was identified by the 894 people surveyed. It was identified by 38.4% of participants, well over half of the people who had been treated with ARV. This study also tried to assess what impact lipodystrophy and lipoatrophy were having on people’s lives. More than 70% of people with lipodystophy agreed with the statement that body changes due to lipodystrophy make it obvious to others that people have HIV. Almost 70% of these people also indicated that they were not happy with the way their body looked, and about 75% of them agreed that changes in their bodies due to HIV had made them feel sexually unattractive. Compared to other HIV positive people in the survey, people with lipodystrophy were significantly more likely to agree with statements indicative of poor body image.
In a world where the threat of stigma and discrimination is the lived reality of most people living with HIV, we have been able to hide our HIV status from most people and avoid discrimination. The physical changes associated with antiretroviral treatments and associated metabolic changes have ended the possibility of anonymity for many people. In my own case, although HIV discrimination is relatively mild in Australia, I have still experienced less favourable treatment in my community because my prominent belly and skinny limbs have announced to the world that I am HIV positive. My positive friends who have significant facial wasting experience this all the time – even people in our social world who don’t understand that these physical affects are due to HIV therapy react negatively to the disfigurement that the drugs cause. I cannot imagine the impact of these changes for people living with HIV in countries where discrimination against positive people is harsh and violent. Lipoatrophy and lipodystrophy marks us instantly as HIV positive to those who recognise the signs: once treatments are widely available in the world, and these physical changes become more common, there will be no hiding our status from those who want to harm us.
The data recorded in the Futures III study also indicate that the changes to our bodies due to treatments also increase our own self-stigmatisation. The Australian writer Colin Batrouney, in an article in Positive Living called “Losing Face” has illustrated the depths to which this self-stigmatisation goes for some positive people:
Partly this disquiet is fuelled by the many unpleasant and immediate side-effects of treatments: diarrhoea, headaches, nausea, dehydration, fatigue, disturbances of sleep and thought, and so on. Compared to dying, these are, without doubt, trivial, but even trivial things become unbearable if they have to be experienced relentlessly, day in and day out, forever.
The disquiet is also fuelled by our resistance to the medicalisation of our bodies and our lives inherent in the increasingly technical task of monitoring and treating HIV. We resist the territorialisation of daily life: the intrusion of medication schedules, the replacement of subjective assessments of well-being and happiness with clinical measures of immune function and viral activity.
And lastly our disquiet is driven by profound uncertainty about the long-term impact on our health and well-being of drugs that are slowly and inexorably changing us in both fundamental and superficial ways. It is this last point that I want to explore in some detail today: for while HIV and anti-retroviral therapy disturb our metabolic processes, as my colleagues on this platform have shown, the metabolic disturbances themselves cause other disturbances, ripples that spread out to upset the flow of our lives, our sense of ourselves and our social relationships.
Let me begin this exploration with a personal narrative, my own experience with the metabolic disturbances engendered by HIV treatment. For most of the time since I was diagnosed with HIV in 1995, I have been very lucky. I was not ill when I was diagnosed, and so for the first couple of years of living with HIV, I did nothing more than monitor my CD4 count and later, my viral load, with my doctors. In 1997, we decided to hit hard and hit early, and I began taking anti-retrovirals. My first experience with these life-saving drugs was not fantastic – within four weeks of starting my first combination, my liver refused to cooperate, and I became ill for the first time with an iatrogenic form of hepatitus. I was forced to stop the therapy immediately, but I recovered quickly. Towards the end of 1998, we tried again, and this therapy (based on Indinavir, D4T and DDI) was more successful: my viral load dwindled to undetectable, and although my CD4 count stayed where it was at around three to four hundred, I was able to tolerate the combination, more or less. The addition of Ritonavir the following year meant that my pill burden was decreased, and some of the difficulties of daily life – especially trying to eat and sleep adequately on a regimen that had severe dietary and medication timing constraints – were eased. My viral load remained undetectable, and my CD4 count increased to more than 500. Technically, I was in great shape.
Ironically, it was changes to my shape that now began to concern me. Slowly, the person looking back at me from the mirror was being replaced. I noticed the changes to my face first: I developed indentations and prominent veins at my temples, and my parotid glands swelled. There were also changes to the quality of my skin and hair that are difficult to characterise: it was getting somewhat difficult to recognise myself. And then I started to notice that the rest of my body was also changing. At first I liked the fact that as the fat dropped away from my legs and arms, the muscles stood out more, but then I would catch sight of myself in a store window and realise that my limbs were becoming sticks. I stopped wearing shorts in public, embarrassed by my stick figure limbs. The fat that I was losing off my limbs seemed to be migrating inwards towards the centre of my body: although I have not been exactly trim since my mid-20s, my stomach was becoming noticeably round, I was developing breasts, and a hump at the top of my back. It was very strange fatness that I was developing, particularly in my stomach. I was so thin that I couldn’t even get a pinch of flesh around my middle, and yet my belly was getting bigger and bigger. My father asked me jokingly if I was pregnant, and my brother, a bodybuilder, began to suggest exercises that would help me shape up. My nutritionist suggested that I join an exercise class for people with lipodystrophy that was run by the physiotherapists from my local hospital. My doctor suggested that I change drugs again, replacing D4T with abacavir, as D4T seemed to be one of the culprits implicated in the changes that were occurring. After a couple of weeks on abacavir, I developed a hypersensitivity reaction, and had to adjust the cocktail again, this time replacing Abacavir with AZT. My bodily changes continued noticeably, and my blood chemistry was also now detectably shifting. My blood pressure, cholesterol – both HDLs and LDLs – and triglyceride levels increased, despite my efforts to reduce fat intake. He measured and adjusted the levels of Indinavir and Ritonavir I was taking, trying to establish the minimum therapeutic dose that I could take. This relieved the constant headaches and sleeplessness that I had been experiencing. We added the diabetes medication Metformin to the mix, in the hope that this might reduce the abdominal fat deposits, and improve my triglyceride levels. We monitored my pancreas and continued to look for problems with insulin resistance and mitochondrial damage. For a couple of weeks, it seemed to me that we had achieved some balance – I felt better at least. But then there was a sharp decline in my well-being: it became extremely painful to move, and I was sharply fatigued all the time. It was the onset of lactic acidosis. This was the last straw, and I was forced to abandon treatments for a while.
There are two aspects to this narrative that bear some scrutiny. The first aspect is the impact of metabolic changes on the health and well-being of positive people. In 2001, I experienced the two worst episodes of ill health that I have had since I was diagnosed with HIV in 1995. I was hospitalised for the first time, and I had to stop my anti-retroviral treatment because of side effects. The hospitalisation was a fairly trivial event, but highly significant for me as it was the first time since I was born that I had been in a hospital as a patient. I was admitted for a surgical procedure – to repair an umbilical hernia. The hernia had developed as a result of my overeager approach to exercise to combat the development of lipodystrophy. I was concerned about how fat I was becoming in some areas like my growing pot belly and gynaecomastea, and paradoxically also worried by how skinny I was getting in other areas as the fat was dropping off my arms, legs and buttocks.
In response to my growing shame at these changes of shape, I enrolled in an exercise class for positive men, which used a combination of resistance and aerobic exercise to reduce abdominal fat deposits and increase muscle. However the solid mass of visceral fat deposits and my zeal at crunches and sit-ups were not a good pair and I developed an umbilical hernia and a prominent diastasis rectii, a strange bulge down the middle of my stomach that appeared when I did a sit-up. The hernia became so painful that I could not continue with exercise, and actually made my appearance worse. My belly was not just big and round, it was now also lopsided and somewhat pointy. It was very disheartening, and though the hernia was repaired, the diastasis is still with me, reminding me each day of the irreparable changes that have been made to my body.
The other health disaster of that year was developing lactic acidosis, which made me as ill as I have ever been, threatening my life. These developments have made me think seriously about my future strategies in relation to medication, and I now see antiretrovirals as a last resort. I do
My experience has become somewhat common for people on antiretrovirals. In the recent survey of Australian Positive People conducted by a team of my colleagues at ARCSHS led by Dr Jeffrey Grierson, lipodystophy was one of the most common health problems related to HIV that was identified by the 894 people surveyed. It was identified by 38.4% of participants, well over half of the people who had been treated with ARV. This study also tried to assess what impact lipodystrophy and lipoatrophy were having on people’s lives. More than 70% of people with lipodystophy agreed with the statement that body changes due to lipodystrophy make it obvious to others that people have HIV. Almost 70% of these people also indicated that they were not happy with the way their body looked, and about 75% of them agreed that changes in their bodies due to HIV had made them feel sexually unattractive. Compared to other HIV positive people in the survey, people with lipodystrophy were significantly more likely to agree with statements indicative of poor body image.
In a world where the threat of stigma and discrimination is the lived reality of most people living with HIV, we have been able to hide our HIV status from most people and avoid discrimination. The physical changes associated with antiretroviral treatments and associated metabolic changes have ended the possibility of anonymity for many people. In my own case, although HIV discrimination is relatively mild in Australia, I have still experienced less favourable treatment in my community because my prominent belly and skinny limbs have announced to the world that I am HIV positive. My positive friends who have significant facial wasting experience this all the time – even people in our social world who don’t understand that these physical affects are due to HIV therapy react negatively to the disfigurement that the drugs cause. I cannot imagine the impact of these changes for people living with HIV in countries where discrimination against positive people is harsh and violent. Lipoatrophy and lipodystrophy marks us instantly as HIV positive to those who recognise the signs: once treatments are widely available in the world, and these physical changes become more common, there will be no hiding our status from those who want to harm us.
The data recorded in the Futures III study also indicate that the changes to our bodies due to treatments also increase our own self-stigmatisation. The Australian writer Colin Batrouney, in an article in Positive Living called “Losing Face” has illustrated the depths to which this self-stigmatisation goes for some positive people:
On the first occasion I met him, he rummaged through his backpack and produced a photograph. It was a picture of a young Italian man, heavy set but not overweight, taken at a party with a group of friends. He pushed the photograph toward me and said, “That was me three years ago. I went out for a friend’s birthday.” The photograph was exceptional in one striking sense: the person he was three years ago bore no resemblance to the person he is today, his face ashen and savagely indented by the effects of lipoatrophy. Not only does he bear little or no physical resemblance to the man in the photograph, during the course of the past three years, he has lost his job, stopped having sex and tried to commit suicide twice. The next time, he plans to succeed.The kind of extreme self hatred recorded here has also been noted in other social research on the impact of lipodystophy. The Canadian researchers Collins Wagner and Walmsley (2000) found in a study of 33 people, that the body images of people living with lipodystrophy was poor. Participants in their study described themselves as “Grotesque”. “The weird looking guy with the big neck”. Deformed”. “Bloated belly” “Unloved and Unloveable”. Kirsty Machon, HIV Health Policy Analyst at the Australian National Association of People Living with HIV/AIDS has commented on this study.
That all this would significantly affect the quality of people’s daily lives, she writes, might seem so self-evident as to barely raise an eyebrow. The authors went on, though, to identify a number of areas in peoples’ lives in which lipodystophy had wrought profound and often harrowing changes. Obviously, sex and sexual relations were a major issue. “Cruise suicide” was how one gay man bluntly assessed the effect of lipodystrophy on his sex life. Reported an heterosexual woman who had gained more than 20kg since beginning HIV antiviral therapy: “[My husband] now refuses to have sex with me … only since my body has changed has HIV become an issue in our love lives. Now he is afraid of catching HIV. Perhaps he was in denial before.”It is for these reasons that I am most distressed by the lack of effort from the developers of these drugs to improve the unintended impacts that they are having. It seems to me that the desperate need for therapies to combat HIV gave drug manufacturers the licence to release drugs onto the market that had untenable side effects, and then to just leave them there. If you think about developments in antiretroviral treatments over the last few years, the only refinements to existing treatments have involved repackaging some of them with Ritonavir, developing new varieties of the same culprits, or changing the delivery mechanism so that they aren’t so difficult to take (for example, enteric coated DDI). We are not seeing any significant reengineering of drugs so that their metabolic effects are minimised, despite the fact that it is now five years since Andrew Carr and his team first identified the syndrome. There have been some movements towards developing treatments for metabolic changes, but I’m sure that I’m not the only HIV positive person who is becoming sceptical and resistant to the idea of taking treatments whose sole benefit is mitigating the side effects of other treatments. In the climate of increasing optimism at this conference about the possibility of increasing access to treatments for PLWHA in Africa and other parts of the developing world, I am concerned that this optimism is misplaced, and that what the drug companies continue to offer us is a poisoned chalice. We cannot ignore the fact that it is a chalice – none of us want to die from AIDS if we don’t have to – but I’m absolutely not convinced that dying of cardiovascular disease or pancreatitis is an alternative that I want to take. One of the most significant remaining challenges, and an increasingly important site for treatments activism, is forcing multinational drug companies to continue their research and development of existing therapies to improve their performance in the area of metabolic side-effects so that the lives that their drugs are saving can be lives that are worth living.
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