Ways to manage facial fat loss are improving,
but prevention remains better than cure
Words Robert Fieldhouse
Images Photos.com
Is
it not enough we have to deal with the threat of illness, let alone get stuck
with a disfigurement which marks us out as being HIV positive, and chips away
at our already battered self-esteem? I’m more than willing to tell people
my HIV status, but I don’t necessarily want HIV to do it for me.”
Maria, HIV positive for seven years, on treatment for three, sums up the problem
that many with HIV wrestle with.
An unwanted badge
In the old days it was the Aids-related cancer Kaposi’s sarcoma (KS)
that filled grown men (and women) with fear. Nowadays it’s loss of fat
from the face, often referred to as facial lipoatrophy, that gives the game
away. While perhaps not instilling the same terror as KS did in the pre-HAART
era, facial fat loss definitely increases fear of stigma or discrimination.
Gaining body mass is often one of the paybacks we may hope for after starting
antiretroviral therapy. Losing a sizeable proportion of your body mass can
leave you literally feeling less than the person you once were. While it may
be easy to build up shoulders, legs and arms with exercise, re-gaining lost
facial fat can be a tougher call.
The culprits
HIV itself is to blame for some of the facial fat loss reported by a high
proportion of people living with HIV. But over the past seven or eight years,
it has become increasingly apparent that HIV drugs themselves are in the most
part to blame. The nucleoside analogue d4T (stavudine, Zerit), an otherwise
potent and well-tolerated drug, fell out of favour with doctors and patients
because of the high rate of facial fat loss reported among those using it.
AZT (zidovudine, Retrovir) and Combivir prescriptions soared on the back of
the fallout from d4T, but now, a few years down the line, AZT and Combivir,
which contains AZT, have fallen from grace for the very same reason. “When
someone looks at me, they don’t see that my CD4 count is above 500 and
I’m undetectable,” says Maria. “They just see someone who
looks sick.” People like Maria take facial fat loss seriously, and reassuringly,
doctors involved in the writing of the current HIV treatment guidelines from
the British HIV Association (BHIVA) do too. For the first time ever, the guidelines
recognise that: “The extent of the continuing use of AZT/3TC combinations
in the future is likely to depend upon the propensity of AZT to produce lipodystrophy,
which is in itself costly to treat and will be
associated with poor adherence.”
Plentiful but not necessarily desirable
This departure comes at a rather interesting time; AZT loses its European
patent in the coming year and hospitals will be able to buy it cheaply from
generic suppliers. Prescribing generic AZT could save primary care trusts
(PCTs) hundreds of thousands of pounds each year. After years of paying a
premium for the patent-protected premiere antiretroviral, it would have been
somehow satisfying to see PCTs finally get it for pennies. But concern for
the financial needs of PCTs pale into insignificance when compared to the
rights of all people living with HIV in this country (man or woman or asylum
seeker) to obtain the best individualised care. And this care should not be
at the expense of unacceptable, debilitating, stigmatising side effects. AZT
is a good drug; it has been studied more than any other HIV drug, and it works.
And it would be unfair and untrue to say that everyone who uses it will develop
fat loss. But growing numbers do. It may take many years, and other factors
(such as how long you’ve been HIV positive, how long you’ve been
on treatment, which treatments you have previously used) may contribute to
the overall risk of developing fat loss. If you are starting therapy for the
first time, it may be wiser to choose a newer nucleoside/nucleotide analogue
such as abacavir or tenofovir as these don’t appear to cause fat loss
in the same proportion of patients over time as AZT or d4T.
Should I switch therapy?
Studies are beginning to clearly show the benefits of switching away from
d4T or AZT to drugs such as abacavir or tenofovir. The 2005 BHIVA guidelines
state that if someone is currently using d4T, “a switch to AZT may delay
but is not likely to prevent the development of lipodystrophy. However, a
switch to either abacavir or tenofovir is associated with an increase in fat”.
Recent clinical trials suggest those people who regain lost limb fat after
switching therapy also see improvements in their facial appearance. One such
trial is the UK-based RAVE study, in which patients whose previous treatment
had included AZT or d4T, were switched to abacavir or tenofovir. At this year’s
International Aids Society Conference in Rio de Janeiro, Dr Paul Benn from
the Mortimer Market Centre at Camden PCT, presented a new analysis from RAVE
looking at facial fat gain. He agreed to discuss his findings with us.
Positive Nation: Who did you recruit to the RAVE study?
Paul Benn One hundred and five people, all were on either d4T or AZT, had
good virological control on their current regimen and evidence of lipodystrophy.
Individuals were randomised to either tenofovir (52) or abacavir (53). Approximately
90 per cent were men and 80 per cent were white. Of these, 47 were included
in the facial sub-study, 23 were randomised to switch to tenofovir and 24
to abacavir.
PN: Almost 90 per cent of the participants reported lipodystrophy;
what proportion reported facial wasting as a concern?
PB In the sub-study, the majority of individuals, over 80 per cent, reported
facial lipoatrophy. The numbers were similar in each arm at randomisation.
The study protocol did not ask about which areas of lipodystrophy were causing
them particular concern.
PN: You used facial scanning which clearly shows an improvement in
facial cheek volume 48 weeks after switching. Have you asked patients whether
they can see a difference too?
PB Yes, patients were asked to assess whether they thought there was a change
in their facial lipoatrophy. Sixty-seven per cent reported that their facial
lipoatrophy either remained unchanged or had improved compared to 33 per cent
who thought it had got worse. This difference is however not statistically
significant and is probably due to the small numbers in the study.
PN: Do abacavir and tenofovir restore a similar amount of facial fat?
PB The study shows similar increases in facial contour overlying both cheek
areas in those switched to tenofovir or abacavir. The overall study showed
similar increases in limb fat in both groups. There was a significant correlation
with improvements in facial contour and improvements in limb fat.
PN: Have you detected differences in patient’s ability to regain
facial fat, depending on whether they used AZT or d4T previously?
PB Again, as the numbers recruited to the study were small we have not looked
at improvements in facial lipoatrophy according to whether they had received
AZT or d4T previously. However, in the overall study, those who had previously
received AZT had significantly smaller improvements in limb fat compared to
those on d4T. These data will be presented during the European Aids Clinical
Society (EACS) meeting in Dublin in a few weeks time.
PN: Do the results of this study have implications for patients’
choice of initial treatment?
PB This is the first study that I am aware of that shows improvement in facial
lipoatrophy as well as limb fat. Several studies, including RAVE, show improvement
in limb fat following switching away from either AZT or d4T to tenofovir or
abacavir. The Gilead 903 study comparing tenofovir/3TC and efavirenz with
d4T/3TC and efavirenz showed significant differences in limb fat at 144 weeks
favouring tenofovir and 3TC. I do think these have implications for choice
of first-line therapy and also switching could potentially avoid the need
for cosmetic interventions in some patients.
Restorative therapies
For years the main option for treatment-experienced patients with facial fat
loss was to invest in restorative therapies such as New Fill, Bio-Alcamid,
Restylane, Collagen or autologous fat transfer.
I’m loathe to refer to these as ‘cosmetic procedures’ as
to do so would be to glamorise a procedure done simply to combat the effects
of the toxicity of drugs. Most of the facial fillers work; some reportedly
achieve permanent results, others only offer a temporary fix. They work on
the same principle as wound-healing: A foreign object, often made of tiny
beads of gel, is injected into the face. The body recognises the filler in
the same way it would, for example, a thorn, and sends collagen to the area,
which plumps up the face.
Custom-designed silicone implants tend to retain their original size and structure
and remain stable in their position after implantation. They have been used
to treat both moderate and severe facial wasting in a small number of people
living with HIV.
New-Fill
Access to New-Fill varies across the country and for the most part you tend
to only qualify to be treated at your current clinic, should they have access
to the various procedures. Some PCTs have developed funding arrangements which
allow you to be sent to another hospital to have the work done. I meet people
all the time who have paid for the work themselves, often spending £2,000-£3,000.
Yes, the results can be astounding, but at this price, it remains out of reach
for many.
Bio-Alcamid
Bio-Alcamid is a synthetic gel made of 96 per cent water and four per cent
synthetic polymer. It is injected below the skin to restore volume and the
natural contours of the face. It is one of the few products that can be used
in large volumes to correct particularly pronounced fat loss in the face.
Restylane
At this summer’s International Aids Society meeting in Rio de Janeiro,
researchers reported results on the use of a facial filler called Restylane.
Though the study was small, only involving ten participants, all reported
their appearance to be very much or moderately improved after just one or
two injections.
David’s story
David opted to have fat removed from his body transferred to his face, which
had taken the toll after extensive antiretroviral therapy. He has been on
antiretroviral drugs (ARVs) since the Concorde trial in the late 1980s which
looked at AZT therapy alone in people without any HIV-related symptoms.
He’s well experienced when it comes to ARVs and an expert patient whose
current combination of ddC, nevirapine, fosamprenavir/ritonavir and T-20 has
made him the healthiest he’s been for years.
David had used ARVs for at least 12 years before he noticed his face was changing.
He paid for one treatment with New-Fill but described the look as “rather
flat” and “the benefit was soon lost, whereas with the fat transfer
was still there”. His first NHS-funded facial fat transfer was 18 months
ago and the procedure was repeated again recently. “The first time it
was a shock, but I felt 100 per cent better.” His doctors and others
in the clinic have negotiated hard with local PCTs to make procedures such
as New-Fill or autologous fat transfer available to people who are struggling
with the negative consequences of the long-term use of some ARVs.
Philip’s story
Philip went to a cosmetic surgeon in Brussels earlier this year to have liposuction
on his neck after nine years of antiretroviral therapy left him with fat accumulation
under his chin. He began to notice changes to his face after just one year
on ARVs. “By two years it had become very marked. The three years on
d4T, 3TC and indinavir were probably the most damaging. I likened myself to
Skeletor, the cartoon character
from He-Man.“My face was sunken. At first I convinced myself that I
was developing chiseled
features and people were only staring at me because I looked like a male model.
Alas, I was kidding myself. A lot of friends just assumed I was quite ill
at the time and so had lost a lot of weight.”
In addition to the fat loss on the face, Phil had to cope with fat accumulation
around the neck and the top of his back. “It had the effect of worsening
the impact of the facial wasting and made my fat distribution on the face
look quite freaky.” Philip’s clinic dismissed his body fat changes
for quite a long time, even suggesting it was just part of the ageing process.
Finally they acknowledged that it was quite marked, once research emerged
around lipoatrophy. He was then put on a waiting list for New-Fill and it
took nearly two years before he eventually received treatment.“I didn’t
pay for New-Fill as it’s part of a clinical trial. However, I wish I
had as I’m now in the position of needing a top-up as the treatment
is two years old and failing. But the waiting list is so long, I could have
to wait a year, which means I will probably have regressed back to the state
I was in pre-treatment.” “The liposuction on the neck cost £700
in a Brussels clinic. I was offered it on the NHS, but was told I could be
waiting as long as two years. “I’m over the moon with the results
as I now have a jawline again and no longer get stared at in the street or
bars. I was equally delighted with the effects of New-Fill, but disappointed
that I now face the prospect of looking freaky again before I get my top-up.
For that reason I’m seriously thinking of leaving the trial and having
it done privately.”
Clinical trials
If you are worried about facial wasting, please talk to your doctor about
what options are available. These may include switching treatment or participating
in a clinical trial. You can find out about HIV clinical trials by asking
your doctor, HIV research nurse or by looking at www.aidsmap.com.
And finally
Perhaps it’s not the physical changes that switching therapy may bring
about that are important; it’s the improvement in your quality of life
which comes with the degree of anonymity (at least) or looking terrific (at
best) that the different approaches confer. If you are worried about facial
fat wasting, it is best to talk through your options, including switching
therapy with your doctor.
Further information
• www.bhiva.org for
the 2005 HIV
treatment guidelines
• www.cloverleafproducts.com
for more details about Bio-Alcamid
• www.sculptra.com
for more details about New-Fill
• www.restylane.com
for more details about restylane
• www.elyzea.co.uk/gb/price_gb.htm
for the Brussels cosmetic surgeon willing to operate on people living with
HIV
• For more on managing body fat changes, attend one of Robert Fieldhouse’s
workshops taking place in November and December. See the advert on page 27.
