YOU ARE HERE:
New Life
A very personal perspective of life before and after New-Fill, by Edwin J Bernard
I don't recall the exact moment when I realised that my face looked different. It was some time in 1999; 16 years after I became infected with HIV, 11 years after my HIV diagnosis, six years since I first began antiretrovirals (AZT monotherapy, followed by a suboptimal dose of saquinavir with ddC), and three years into dual therapy with 3TC and d4T (to which I sequentially added delavirdine when the regimen appeared to be failing).
I had been living in Vancouver, Canada since 1995, with my former partner, and I hadn't been feeling very good for quite a while - although my CD4 count was between 200-300, despite a rising viral load.
This was just five years ago, but I keep wanting to say 'in those days', since the terms lipodystrophy, facial lipoatrophy and other terms related to fat redistribution syndrome were just being recognised and had no general umbrella name, other than the rather misleading Crix Belly.
Looking back, my lipodystrophy symptoms were classic: thinning legs and bum, evidenced at first by varicose veins near my shins; and central fat gain, evidenced by my needing a new wardrobe of increasingly larger jeans and baggy T-shirts that hid my growing belly.
In April 1999, with a falling CD4 count and a five figure viral load, I had taken what is now termed a structured treatment interruption, since my HIV was found to be resistant to all available drugs, and my current treatment was no longer packing any punch. That year I also experienced what seemed to be a relapse of Crohn's Disease - an inflammation of the small intestines from which I had suffered relatively mildly since I was a teenager - bacterial pneumonia, acid reflux, and an enlarged, fatty liver with no obvious cause.
I do recall that facially I felt that I had aged more than a calendar year by the time the Millennium celebrations began to be hyped, but I put it down to simply being unwell, given what I had been through.
By March 2000, with a CD4 count of 30 and viral load of 627,000 it was time to restart antiretrovirals. By then Kaletra was newly available on expanded access and my doctor at the time, Julio Montaner, and I, put together a mega-HAART package that recycled 3TC (to keep the M184V mutation that was understood to reduce viral fitness), abacavir and ddI (to which my HIV may or may not have been resistant).
By July, although my viral load had fallen two logs, this wasn't enough to prevent new resistance accruing, so we added a second newly-available PI, amprenavir, and the anticancer drug, mycophenolate (CellCept), which had been shown to enhance the effect of abacavir in test-tube experiments. More fine-turning followed, and by June 2001 - now on eight different anti-HIV drugs - I achieved my first ‘below 50’ viral load test together with a CD4 count of 210.
I had got my life back. I was incredibly grateful. But my body - and most distressingly - my face, bore the scars of my illness. I felt well, but still looked sick. I began testosterone supplementation when it was discovered that my chronic fatigue was due to low natural testosterone production (likely caused by the length of my HIV infection) and started seriously working out at the gym, gaining muscle where the fat used to be in my thighs, bum, and arms. I radically changed my diet when the lipid tests showed how the ritonavir-containing Kaletra had increased my heart-disease risk, and I soon lost much of my central fat accumulation.
But my face remained deeply lined and I felt that I had lost my looks - something that - as a vain, gay man - bothered me more than I care to admit. And as my eight-year Canadian relationship ended in the winter of 2001, and I moved back to the UK to start a new single life, my looks seemed more important than ever, if I was not going to spend the rest of this hard-fought-for new life alone.
Even as my health continued to improve and I entered my 40th year with a new appreciation for living, I found myself not being able to look at photographs of myself that showed me smiling, since the lines in my face deepened to crater-like proportions. As I stood in front the mirror pulling the skin on my cheeks back to see what my face had looked like before, I made the decision to try and smile less in general.
Was I just ageing?
That certainly was the answer I gave to the world at large when I brought up the subject, usually to stop someone asking me about my face first - although now I realise that I was much more aware of my facial wasting than anyone else: in fact, some people now tell me they thought the deep lines were actually sexy! And when my doctor at the Lawson Unit in Brighton mentioned that I was able to access New-Fill in November 2002, I turned him down, saying that surely there must be much worse, much more needy, deserving, worthy cases than I.
That night, I examined myself in the mirror for half an hour, trying to figure out if my facial lipoatrophy really was so bad, not realising that candidates for New-Fill are not necessarily chosen due to objective wasting, but how it affects them psychologically. I now recall how often I had actually mentioned my facial wasting - both in person and in emails - to my HIV consultant.
In January 2003 I met an acquaintance from Brighton who was glowing where he had previously been less than shiny. He whispered conspiratorially that he had just had his second New-Fill treatment and felt fantastic. I surreptitiously examined his face; it didn't seem so different to me, but I certainly saw that, psychologically, the treatment had been a huge boost to him. Consequently, I fell into a mild funk for a several weeks, having an internal debate around denial and acceptance, and finally found the courage to ask my consultant if the offer of New-Fill still stood. He asked me a few questions about how I felt about myself, and on February 7th 2003, I had my first appointment with Dr. Gillian Dean - Brighton's New-Fill-experienced doctor.
I had no real idea what to expect: despite my writing about HIV for a living I had purposefully not researched the intimate details of the treatment so that I would not worry unduly. My Brighton acquaintance had told me it took about 20 minutes and wasn't really painful, so I went with that.
In reality, I must admit, I was rather shocked when I realised that it wasn't just one New-Fill injection in each cheek, but between 15 and 20! Despite the ice pack applied to the area before and during treatment, and the local anaesthetic mixed in with the New-Fill, I still felt the prick of the needle and the trickle of liquid into my cheeks most of the time. It was the sight of the bloodstained cloth that covered the ice pack, however, that made me feel somewhat faint - and after one side was done, I must admit I asked to lie down and have a five-minute break before, literally, turning the other cheek.
But if I was not prepared for the actual treatment, I was even less prepared for the moment I saw the immediate results. After the treatment was over, and I had received a relaxing ten-minute facial massage from the nurse (I was advised to keep massaging my face for at least 20 minutes every day to make sure the New-Fill was evenly distributed) I was led into a small room and left alone with a mirror. It didn't really register at first that it was I who looked back at myself. Then I noticed how full my cheeks looked - almost too full, actually. Had I turned into a chipmunk? Was this Dr. Dean's first disaster? I turned away and looked back again, this time more admiringly. Yes, the wasting look was gone, but as Dr. Dean explained when I subtly mentioned how full my cheeks looked, the effect at first is due to the bulk of liquid that contains New-Fill. After a while, the liquid becomes absorbed and what is left is a gradual thickening of the skin: that is why it usually takes three or four New Fill treatments to reach the required thickness.
That night, I realised that what the New-Fill had done was not fill my face, but erase what I considered to be battle scars inappropriate to the way I wanted to live my life today. Yes, I was - and still am - a confused mix of humbled, proud and amazed to still be here despite the odds against me, and I am very happy to reveal my HIV status under most circumstances. Nor had the facial wasting affected my determination to take my pills exactly as prescribed, since I valued living more than anything. But, I realised that in the years preceding, I had lost a certain confidence about myself that I used to have, linked, I suppose, to how I felt about my looks and attractiveness, but also to how I felt about being singled-out for being HIV-positive in situations where I had no control about disclosure - passing through US immigration, for example.
That situation was particularly relevant since the week after my first New-Fill treatment, I was going to Boston to cover an important HIV conference for NAM. People with HIV are not normally allowed to enter the US, and I had been extremely concerned that I would be singled-out at immigration, my bags searched, my antiretrovirals found, and I would be deported. This time, however, I found I had a new-found confidence as I approached the immigration officer, and I was waved through, no problem. This confidence was commented on for the first time by Anna Poppa, the former editor of ATU after I had suggested New-Fill as a topic for the April issue and revealed I was undergoing treatment. She told me - as many others would in the future - that she hadn't actually noticed my facial wasting – or the lack of it since the treatment - but she had noticed that I seemed happier, more confident and generally more outgoing since the treatment.
The second treatment, on February 28th, was much easier to tolerate, and the 'after' photo that accompanies this piece was taken eight days later. My third, and final, New-Fill treatment took place on April 4th. A follow-up appointment on April 14th with my HIV clinician confirmed that I was happy with how I looked and did not require a fourth treatment.
A lot of good things have happened to me since then - including becoming editor of ATU and finding love again - and it would be overly-simplistic to attribute them solely to the positive psychological effects of my New-Fill treatment. It would also be churlish, however, to imply that New-Fill did not have something to do with my new life.
I just hope that everyone who feels similarly distressed about this side-effect of antiretroviral therapy can soon access this treatment: until then, I feel a little bit like a lottery winner - undeserving, grateful, amazed and extremely happy. In a sense, by living in the right postcode, I did win the lottery. Let's hope that changes very soon.
I don't recall the exact moment when I realised that my face looked different. It was some time in 1999; 16 years after I became infected with HIV, 11 years after my HIV diagnosis, six years since I first began antiretrovirals (AZT monotherapy, followed by a suboptimal dose of saquinavir with ddC), and three years into dual therapy with 3TC and d4T (to which I sequentially added delavirdine when the regimen appeared to be failing).
I had been living in Vancouver, Canada since 1995, with my former partner, and I hadn't been feeling very good for quite a while - although my CD4 count was between 200-300, despite a rising viral load.
This was just five years ago, but I keep wanting to say 'in those days', since the terms lipodystrophy, facial lipoatrophy and other terms related to fat redistribution syndrome were just being recognised and had no general umbrella name, other than the rather misleading Crix Belly.
Looking back, my lipodystrophy symptoms were classic: thinning legs and bum, evidenced at first by varicose veins near my shins; and central fat gain, evidenced by my needing a new wardrobe of increasingly larger jeans and baggy T-shirts that hid my growing belly.
In April 1999, with a falling CD4 count and a five figure viral load, I had taken what is now termed a structured treatment interruption, since my HIV was found to be resistant to all available drugs, and my current treatment was no longer packing any punch. That year I also experienced what seemed to be a relapse of Crohn's Disease - an inflammation of the small intestines from which I had suffered relatively mildly since I was a teenager - bacterial pneumonia, acid reflux, and an enlarged, fatty liver with no obvious cause.
I do recall that facially I felt that I had aged more than a calendar year by the time the Millennium celebrations began to be hyped, but I put it down to simply being unwell, given what I had been through.
By March 2000, with a CD4 count of 30 and viral load of 627,000 it was time to restart antiretrovirals. By then Kaletra was newly available on expanded access and my doctor at the time, Julio Montaner, and I, put together a mega-HAART package that recycled 3TC (to keep the M184V mutation that was understood to reduce viral fitness), abacavir and ddI (to which my HIV may or may not have been resistant).
By July, although my viral load had fallen two logs, this wasn't enough to prevent new resistance accruing, so we added a second newly-available PI, amprenavir, and the anticancer drug, mycophenolate (CellCept), which had been shown to enhance the effect of abacavir in test-tube experiments. More fine-turning followed, and by June 2001 - now on eight different anti-HIV drugs - I achieved my first ‘below 50’ viral load test together with a CD4 count of 210.
I had got my life back. I was incredibly grateful. But my body - and most distressingly - my face, bore the scars of my illness. I felt well, but still looked sick. I began testosterone supplementation when it was discovered that my chronic fatigue was due to low natural testosterone production (likely caused by the length of my HIV infection) and started seriously working out at the gym, gaining muscle where the fat used to be in my thighs, bum, and arms. I radically changed my diet when the lipid tests showed how the ritonavir-containing Kaletra had increased my heart-disease risk, and I soon lost much of my central fat accumulation.
But my face remained deeply lined and I felt that I had lost my looks - something that - as a vain, gay man - bothered me more than I care to admit. And as my eight-year Canadian relationship ended in the winter of 2001, and I moved back to the UK to start a new single life, my looks seemed more important than ever, if I was not going to spend the rest of this hard-fought-for new life alone.
Even as my health continued to improve and I entered my 40th year with a new appreciation for living, I found myself not being able to look at photographs of myself that showed me smiling, since the lines in my face deepened to crater-like proportions. As I stood in front the mirror pulling the skin on my cheeks back to see what my face had looked like before, I made the decision to try and smile less in general.
Was I just ageing?
That certainly was the answer I gave to the world at large when I brought up the subject, usually to stop someone asking me about my face first - although now I realise that I was much more aware of my facial wasting than anyone else: in fact, some people now tell me they thought the deep lines were actually sexy! And when my doctor at the Lawson Unit in Brighton mentioned that I was able to access New-Fill in November 2002, I turned him down, saying that surely there must be much worse, much more needy, deserving, worthy cases than I.
That night, I examined myself in the mirror for half an hour, trying to figure out if my facial lipoatrophy really was so bad, not realising that candidates for New-Fill are not necessarily chosen due to objective wasting, but how it affects them psychologically. I now recall how often I had actually mentioned my facial wasting - both in person and in emails - to my HIV consultant.
In January 2003 I met an acquaintance from Brighton who was glowing where he had previously been less than shiny. He whispered conspiratorially that he had just had his second New-Fill treatment and felt fantastic. I surreptitiously examined his face; it didn't seem so different to me, but I certainly saw that, psychologically, the treatment had been a huge boost to him. Consequently, I fell into a mild funk for a several weeks, having an internal debate around denial and acceptance, and finally found the courage to ask my consultant if the offer of New-Fill still stood. He asked me a few questions about how I felt about myself, and on February 7th 2003, I had my first appointment with Dr. Gillian Dean - Brighton's New-Fill-experienced doctor.
I had no real idea what to expect: despite my writing about HIV for a living I had purposefully not researched the intimate details of the treatment so that I would not worry unduly. My Brighton acquaintance had told me it took about 20 minutes and wasn't really painful, so I went with that.
In reality, I must admit, I was rather shocked when I realised that it wasn't just one New-Fill injection in each cheek, but between 15 and 20! Despite the ice pack applied to the area before and during treatment, and the local anaesthetic mixed in with the New-Fill, I still felt the prick of the needle and the trickle of liquid into my cheeks most of the time. It was the sight of the bloodstained cloth that covered the ice pack, however, that made me feel somewhat faint - and after one side was done, I must admit I asked to lie down and have a five-minute break before, literally, turning the other cheek.
But if I was not prepared for the actual treatment, I was even less prepared for the moment I saw the immediate results. After the treatment was over, and I had received a relaxing ten-minute facial massage from the nurse (I was advised to keep massaging my face for at least 20 minutes every day to make sure the New-Fill was evenly distributed) I was led into a small room and left alone with a mirror. It didn't really register at first that it was I who looked back at myself. Then I noticed how full my cheeks looked - almost too full, actually. Had I turned into a chipmunk? Was this Dr. Dean's first disaster? I turned away and looked back again, this time more admiringly. Yes, the wasting look was gone, but as Dr. Dean explained when I subtly mentioned how full my cheeks looked, the effect at first is due to the bulk of liquid that contains New-Fill. After a while, the liquid becomes absorbed and what is left is a gradual thickening of the skin: that is why it usually takes three or four New Fill treatments to reach the required thickness.
That night, I realised that what the New-Fill had done was not fill my face, but erase what I considered to be battle scars inappropriate to the way I wanted to live my life today. Yes, I was - and still am - a confused mix of humbled, proud and amazed to still be here despite the odds against me, and I am very happy to reveal my HIV status under most circumstances. Nor had the facial wasting affected my determination to take my pills exactly as prescribed, since I valued living more than anything. But, I realised that in the years preceding, I had lost a certain confidence about myself that I used to have, linked, I suppose, to how I felt about my looks and attractiveness, but also to how I felt about being singled-out for being HIV-positive in situations where I had no control about disclosure - passing through US immigration, for example.
That situation was particularly relevant since the week after my first New-Fill treatment, I was going to Boston to cover an important HIV conference for NAM. People with HIV are not normally allowed to enter the US, and I had been extremely concerned that I would be singled-out at immigration, my bags searched, my antiretrovirals found, and I would be deported. This time, however, I found I had a new-found confidence as I approached the immigration officer, and I was waved through, no problem. This confidence was commented on for the first time by Anna Poppa, the former editor of ATU after I had suggested New-Fill as a topic for the April issue and revealed I was undergoing treatment. She told me - as many others would in the future - that she hadn't actually noticed my facial wasting – or the lack of it since the treatment - but she had noticed that I seemed happier, more confident and generally more outgoing since the treatment.
The second treatment, on February 28th, was much easier to tolerate, and the 'after' photo that accompanies this piece was taken eight days later. My third, and final, New-Fill treatment took place on April 4th. A follow-up appointment on April 14th with my HIV clinician confirmed that I was happy with how I looked and did not require a fourth treatment.
A lot of good things have happened to me since then - including becoming editor of ATU and finding love again - and it would be overly-simplistic to attribute them solely to the positive psychological effects of my New-Fill treatment. It would also be churlish, however, to imply that New-Fill did not have something to do with my new life.
I just hope that everyone who feels similarly distressed about this side-effect of antiretroviral therapy can soon access this treatment: until then, I feel a little bit like a lottery winner - undeserving, grateful, amazed and extremely happy. In a sense, by living in the right postcode, I did win the lottery. Let's hope that changes very soon.