Life on HAART
For the past four years I have been taking antiretroviral therapy. I've seen my CD4 count quadruple and my viral load fall from the high hundred thousands to below 50. It would therefore be easy to conclude that for me treatments have been a success. Not least because it is now well over ten years since I was diagnosed with HIV, and nine years since my first AIDS-defining illness. Quite simply, without my anti-HIV drugs I expect I would be dead by now, or in the last stages of advanced HIV disease.
However, even though my treatments have proved (according to my blood tests at least) a success, I am still very much aware of how serious a condition HIV is and the extent to which it impacts on my life and is likely to do so for the foreseeable future. I am still very medicalised. For a start, there are visits to the clinic every eight weeks for blood tests to monitor the success of my treatments, and their impact on my metabolism. This means that I'm seeing my consultant at least as often as I did in the days before I started taking my combination. What's more, my visits to the clinic last at least as long as they used to. But on top of that, treatments, combined with the length of time I have had HIV, mean that there are other medical issues which require me to visit the hospital.
In one week in late January this year, even though my CD4 count was over 600 and my viral load undetectable, I had to attend three separate outpatient clinics, none of them specifically HIV focused, to see specialists for the monitoring or treatment of conditions which have developed either as a consequence of my treatments, or as a consequence of having a potentially life-threatening illness for well over a decade.
Living with HIV has started to impact on my mental health; just as my lab results started to indicate that its damage to my immune system was being controlled, my mental health declined. I have had two major depressions since I started treatments, each of them as debilitating as any physical illness which HIV has caused. My consultant and the specialist HIV psychiatrist who he referred me to, have assured me that I am far from alone in experiencing mental health problems since starting treatments. For some people these problems have been the direct side-effect of their medication -- depression, psychosis and vivid dreams are all recognized side-effects of efavirenz. For me the causation has been more indirect. I've been corroded by living with HIV for all these years. I've grown pessimistic, and the renewed hope of a future which treatments have provided me with has been compromised by the side-effects and uncertainty which accompanies them.
Fortunately, I've been spared any of the disfiguring body changes (lipodystrophy) which are caused by treatments, even though I've many of the factors which seem to be associated with it, particularly chronic infection with HIV and many years of antiretroviral therapy. A friend, however has not been so lucky, and as he put it: "It's the ultimate irony, you're spared dying of AIDS only to look like you are." Not surprisingly, another friend, who recently started his first combination, has been anxiously monitoring his body shape, fatalistically attributing changes in weight, or post-Christmas thickening of his gut, to early signs of lipodystrophy.
I've had my fair share of side-effects too, including the diarrhea which accompanied my first year on nelfinavir and felt like a tap being turned on in my bowel. Then there was the peripheral neuropathy in my feet and lower legs -- the worst pain I've ever been in, and which still hasn't resolved three years after stopping the drug which caused it. And most recently I've been required to see a cardiologist after developing an irregular heart beat. As I neither smoke nor drink, eat a low fat, high fiber diet, rarely take drugs, have taken regular vigorous exercise since my teens, and currently run at least five times a week, this would seem to be without obvious cause. That's if I wasn't taking antiretroviral medication which has been shown to raise levels of fats in the blood (a risk factor for heart disease), particularly in people like me, with a family history of cardiovascular illness. So far the signs look good -- I may well have bradycardia, a benign condition seen in people with low resting heart rates (particularly runners), but it's required numerous visits to the hospital and a heart rate-raising degree of worrying uncertainty just to get to this potentially hopeful diagnosis.
It is the uncertainty such as this which has become such an unsettling feature of my life on treatments. I am uncertain how long my current drug regimen will continue to work for. Indefinitely I hoped, until last week, when I was told that after years of being undetectable, my viral load was 125. Admittedly modest, but does it mean that I'm becoming resistant to my current combination? It may well only be a "blip," but only more visits to the clinic and more tests will determine this.
Even though my treatments have caused problems, I have found a way of living with them. They're easy to take; twice daily with food (which I've realized can be something as easy to eat as a chocolate bar), and no longer cause any nausea or bowel problems. I don't relish the prospect of having to change to a new regimen. I can well remember the bewildering array of choices between different drugs and combinations which my doctor presented to me in the Spring of 1998 when I started my first regimen. Similarly fresh is the memory of the fretful decision I was asked to make a year later when it was clear that the d4T-related peripheral neuropathy was becoming unbearable, and I'd have to stop the drug despite having good lab results, and choose between AZT and abacavir. Neither of them appeared particularly attractive, well aware as I was of their respective side-effect profiles. In the end I went for abacavir, half expecting to experience the potentially life-threatening (though rare) allergic reaction.
Then there is uncertainty about how long the body can tolerate a chronic viral infection and potent drugs necessary to control it. Rates of cancer in people with HIV are being carefully monitored after some research suggested that non-AIDS-related tumors were more commonly seen in people with long-term HIV infection. As my consultant said to me: "It's another set of worries for you. First of all there was opportunistic infections. Then there was treatment choices, then side-effects, and now the possibility of other fatal illnesses."
Coupled with the medical uncertainty is a lack of security, particularly as regards employment and money. I've been in and out of work for the past decade, meaning that my CV has many gaping holes. My experiences with work have taught me that for me at least, having HIV does pose very real limitations on my employment opportunities. I have been severely ill, with both physical illnesses and depression, meaning that I have been forced to leave jobs. And even sustained periods of employment and good health have involved regular visits to the clinic, accommodated as far as possible outside the working day, but often at times of the day and with a frequency which even a sympathetic employer found hard to accommodate. Now in my mid-30s, I'm facing the possibility of a future of financial insecurity as life with a chronic and demanding illness leaves me ill-suited to a fast moving and competitive jobs market. With the safety net of benefits which accompanied the chronic illness of HIV disease long since removed, this could mean that chronic poverty may well become another unwelcome side-effect of my life on treatments.
It's also necessary to inject a bit of perspective here. The terrorist attacks in New York and Washington last year made many people feel less secure and worry about their employment prospects. In addition, it's become easy to blame HIV and treatment side-effects for just about every medical condition which raises its head. For example, I'd noticed some lines developing down my cheeks recently, and my instinct was to attribute it to treatment-associated fat loss, rather than look for a less sinister explanation, like aging -- which is in fact the case.
With treatments has also come a redefinition of the way I perceive myself, and I think, the way others look at me. Although I have just written at length about some of the issues I have faced, there is no denying that I am likely to live for many more years, possibly as many as my HIV-negative peers. I'm to expect things from life, not least enjoyment and fulfillment and a determination to make the most of the years of life which treatments are hopefully offering me. I'm no longer prepared to accept the poor quality of life issues which accompany the day to day drudge of living with HIV. On the whole I've become a lot more open about my health. When asked in polite dinner-party chit-chat how I managed to get a housing association flat in central London I didn't try and dodge the question, or hedge the answer, but said simply "I've got AIDS." It killed further envious questioning. Similarly, I've become much more explicit about taking my medication in public, and now either honestly respond to inquiring glances about the handful of pills I'm downing, or simply ignore them, rather than apologetically lying about "vitamins" or scurrying off to the bathroom to take my medication in secret.
There are still limitations to my openness and honesty, not least that I've never told my parents I have HIV, maintaining elaborate fictions for their (or is it my own?) benefit about crucial aspects of my life. This is not because I fear that they'll reject me -- I'm fortunate in knowing that they love me unconditionally -- but because in some way I'm ashamed of having HIV. Luckily I've never had a bad reaction from a person who I've either told I'm positive or has guessed. But, the popular prejudice about the disease has, despite my best efforts at rational thought, penetrated deep into my consciousness. And this popular prejudice isn't only found amongst uninformed Daily Mail readers. Some recent correspondence to the British gay weekly Boyz showed that there's an unhealthy amount of prejudice directed towards people with HIV within the group most affected by HIV in the UK, gay men.
Having said that, because of treatments, and their success for me, I no longer feel I have the right to the sympathy and the allowances which people made before. I'm very aware of how hard it was for many of my friends and particularly my partner of ten years, to support me through what looked like it was going to be a terminal illness. To an extent, the problems I now face aren't as serious, and are more generic -- lots of people live with serious illness which can be controlled with medication which causes nasty side-effects.
I want to make the most of the fact that treatments mean that very possibly I am alive when I expected to be dead. But to do this, I need to be honest. I've found living with antiretrovirals hard, often harder than life before treatments. But, like HIV, they're something which has become part of my life. I hope that at least some readers will identify with what I've written as they too, find a way of coping with, and making the most of, what life with treatments means.
Back to the GMHC Treatment Issues March 2002 contents page.