Introduction
This Fact Sheet is to update you on:
- how to reduce the risk of developing lipoatrophy; and
- current options for managing and treating lipoatrophy.
The full text of the fact sheet is below. You can also download a printable PDF copy of this resource, or contact us to obtain hard copies.
What is lipoatrophy?
Lipoatrophy is the technical term for the loss or ‘wasting’ of fat from the face and other areas of the body such as the buttocks, upper arms, legs and thighs. Moderate to severe lipoatrophy of the face has a noticeable ‘sunken cheeks’ look and may also include loss of fat around the nose, mouth, temples and eye sockets.
Lipoatrophy is a well-known side effectAn unwanted effect caused by the administration of drugs. Onset may be sudden or develop over time. of some HIV antiviralA medication or substance which is active against one or more viruses. May include anti-HIV drugs, but these are more accurately termed antiretrovirals. treatments. It is thought to be caused by these treatments interfering with the energy-producing components in the body’s fat cells, which are called ‘mitochondria’. Over time this results in the death of fat cells under the skin, which in turn causes thinning of fat tissue.
Lipoatrophy was first noticed several years ago. There is now a large amount of research looking at lipoatrophy and how to manage it. Ongoing research will add to our knowledge about this condition.
Will everyone taking HIV treatments eventually get lipoatrophy?
Taking HIV treatments doesn’t mean you’ll necessarily get lipoatrophy. Research has found that the condition is linked to a small number of specific HIV antiviral treatments.
Which HIV treatments are likely to cause lipoatrophy?
The drugs that have been linked to lipoatrophy are from the nucleoside and non-nucleoside classes of HIV treatments. These drugs are d4T (stavudine) (brand name Zerit); AZT (zidovudine) (brand name Retrovir); and ddI (didanosine) (brand name Videx). There is also some evidence linking Efavirenz (brand name Sustiva) with lipoatrophy.
Some of these drugs are also contained in ‘once daily’ combination tablets (e.g. brand names Combivir, Trizivir, Atripla).
Protease inhibitors (PIs) are not believed to cause lipoatrophy. Other new HIV drug classesA group of anti-HIV drugs with the same target of action. Anti-HIV drug classes include nucleoside analogue reverse transcriptase inhibitors, protease inhibitors and non-nucleoside analogue reverse transcriptase inhibitors, as well as several others. Combining drugs from three or more classes is the basis of Highly Active Antiretroviral Therapy (HAART). like CCR5 inhibitors and integrase inhibitors have not been linked to lipoatrophy to date.
How can I avoid getting lipoatrophy?
Fear of getting the lipoatrophy ‘look’ is one of the reasons some people say they are reluctant to take HIV treatment. Current HIV treatment guidelines recommend avoiding the small number of HIV treatments linked to lipoatrophy as the best way of reducing your risk of developing the condition. The good news is there are now more choices in HIV treatment, so it’s usually possible to select treatments which haven’t been linked to lipoatrophy.
Is Lipoatrophy dangerous to my health?
Lipoatrophy is not life-threatening, but it should not be dismissed as unimportant or ‘cosmetic’. Lipoatrophy can be one of the most troubling complications of living long term with HIV, affecting self-confidence, self-esteem and quality of life.
What options are available for treating lipoatrophy?
Several approaches are being used to treat lipoatrophy, with varying success. These include switching to different HIV treatment combinations, nutritional supplements and facial fillers.
Changing HIV treatments
Changing your HIV treatment combination to reduce or eliminate drugs linked to lipoatrophy will help prevent you from developing the condition. If you already have lipoatrophy, switching drugs may help prevent it from becoming worse, particularly if you are have only moderate fat loss.
A number of research studies have looked at whether changing from HIV treatments linked to lipoatrophy can reverse or improve it over time. In general, these studies have shown that lipoatrophy does not ‘reverse’ or improve significantly in the short term. Over a longer period of time, some people do see modest improvements, although no study has shown that the condition can be corrected just by changing or stopping HIV treatment.
Diet and Exercise
A good diet and regular exercise are important in helping people live well with HIV. While diet and exercise will not replace the fat lost through lipoatrophy, they can help overall health and build more muscle mass in some areas where fat has already been lost (e.g. in the legs, arms and buttocks).
Nutritional Supplements
Various non-surgical approaches are also being researched to see if they can aid fat gain. Of interest is Uridine, which is sold in Europe as a dietary supplement named NucleomaxX. Uridine retails overseas for about $A200 per month’s supply.
Small clinical trials have shown that taking a Uridine supplement can reverse arm and leg lipoatrophy in people taking d4T or AZT. A clinicalPertaining to or founded on observation and treatment of participants, as distinguished from theoretical or basic science. trial of Uridine is underway in 40 HIV patients with lipoatrophy by St Vincent’s Hospital in Sydney. The trial is comparing Uridine vs Pravastatin (a drug used to lower cholesterolAn essential component of cell membranes and nerve fibre insulation, cholesterol is important for the metabolism and transport of fatty acids and the production of hormones and Vitamin D. Cholesterol is manufactured by the liver, and is also present in certain foods. High blood cholesterol levels have been linked to heart disease and may be a side effect of some anti-HIV medications.) vs Uridine plus Pravastatin. The results of this trial are expected shortly.
Facial Fillers
Facial fillers are injectable or surgically inserted products designed to fill hollows in the face, such as those caused by lipoatrophy. These fillers may be either temporary, semi-permanent or permanent. Temporary and semi-permanent fillers break down over months to years and may need replacement or ‘topping up’ at some point. Some ‘permanent’ fillers may be fully or partially removable. All fillers have their pluses and minuses and side-effects can occur.
Some doctors suggest that temporary and semi-permanent fillers are preferable to permanent ones. The main argument in favour is that problems with permanent implants can be more difficult to correct and also that a permanent filler could rule out the use of other methods that might be discovered to treat lipoatrophy. Other doctors suggest it might be wise to wait for a year or more between injections of different types of fillers.
There are several cosmetic or “cosmetic surgery” procedures involving facial fillers that are being used to treat facial lipoatrophy in Europe, USA, Canada and Australia.
Information about some of these fillers is very limited, particularly their use in people with HIV.
HIV treatment guidelines published by the US Department of Health and Human Services (December 07) list polylactic acid (Sculptra) for the management of lipoatrophy (note: Australia follows these US guidelines). European AIDS Clinical Society Guidelines (October 2007) state that facial fillers of various kinds be considered, but acknowledges there are no clinical trial results comparing different types of fillers to help guide choice.
The cost of treatment with fillers varies between doctors and surgeons, depending on factors such as whether they charge full or reduced cost for the product, whether GST is charged, and what additional fees are charged for doing the treatment. Some surgeons and doctors have treated people with HIV lipoatrophy at low or reduced rates, on a case-by-case basis.
In the next section of this Fact Sheet we look at facial fillers that we are aware of being used for HIV related lipoatrophy in Australia.
Sculptra (polylactic acid, formerly called New-Fill)
Sculptra treatment involves a series of small injections beneath the skin with polylactic acid, a substance that is biologically compatible with human tissue. When used in the face, Sculptra ‘fills out’ and so increases the volume of the treated site, helping to improve the sunken-cheeks look of lipoatrophy. The effect of Sculptra, however, does not last indefinitely and it’s common to need “top-up” treatments relatively frequently (every 9 months to two years or so).
Sculptra has been used in Australia for some time and is probably the most known treatment for lipoatrophy so far. However, research into the use of Sculptra for lipoatrophy has produced mixed results. While some overseas studies have demonstrated good results, a recent Australian clinical trial found that Sculptra did not result in significant measurable improvement of facial fat among patients in the study. However, on the other hand most patients and doctors reported that they did see noticeable beneficial improvements from Sculptra use.
For a course involving three treatment sessions of Sculptra you could expect to pay between $2400 to $3600.
Aquamid
Advertisements have appeared in some Australian gay community newspapers from cosmetic surgeons offering a treatment called Polyacrylamide hydrogel (PAAG or Aquamid) for facial lipoatrophy.
Aquamid is injected into the subcutaneous skin. It then mixes with the water in the skin and creates a vacuum like a permanent sponge inside the cheek. It is a permanent filler, which doesn’t require re-treatment (well, at least for ten years, the manufacturers say, when ageing may have an effect). It is being used in Europe for HIV related lipoatrophy. There have been a small number of clinical trials of Aquamid’s use for HIV lipoatrophy, but none in Australia.
Aquamid costs around $1000 per injection and someone with moderate HIV related lipoatrophy may need around six injections.
Other Facial Fillers
As mentioned earlier, there are several different types of fillers being used overseas for HIV related lipoatrophy. However, information about their use is limited, so we’ve concentrated on those fillers which we know are being used reasonably widely in HIV in Australia. In the course of preparing this Fact Sheet, we became aware of two other products which are being used by some Australian doctors for lipoatrophy – Restylane and Radiesse. This fact sheet will be updated as more information becomes available about these and other lipoatrophy treatments.
Can I get treatment for lipoatrophy on Medicare? Are there any other ways of getting access?
No, the cost of facial fillers is not paid for by Medicare. The cost of the product and administration by doctor or surgeon has to be paid for by the patient.
In Victoria there is a State Government funded program which provides access to facial fillers for HIV lipoatrophy through the State hospital system. No other State/Territory has a similar scheme.
In 2007, NAPWA and its member organisations negotiated a special access schemeBefore a drug has been approved, manufacturers often provide the drug free of charge to people who cannot participate in a clinical trial and who meet certain criteria under a Special Access Scheme (SAS). for Sculptra with the manufacturer (Sanofi-Aventis) and State/Territory Health Departments. This scheme was to assist people on low incomes to access Sculptra. This access scheme is now closed with around 200 patients participating around Australia.
Are there plans to provide access to lipoatrophy treatments and facial fillers through the public health system?
NAPWA strongly believes that people with HIV should have access through the public health system to facial fillers (and other treatments shown to be effective) to restore their facial features lost to anti-HIV treatment and that this is medically necessary and not simply for cosmetic purposes.
NAPWA believes that the arguments in favour are very similar to the successful argument made by women with breast cancer to have breast reconstruction covered by Medicare.
NAPWA and its members will continue to lobby for further access to HIV lipoatrophy corrective treatment, in acknowledgement of the high cost of treatment and the significant unmet need.
Tips
- If you are worried about lipoatrophy you should talk to your doctor about being prescribed a combination of pills that aren’t known to be linked to lipoatrophy. If you currently take any of the treatments known to be associated with this problem, you should discuss the possibility of changing to a different HIV treatment combination.
- If you are thinking about facial fillers for lipoatrophy, NAPWA recommends that you discuss the options with your doctor and get a second opinion if you are unsure. We also recommend that facial filling procedures be carried out by qualified and experienced dermatologists or cosmetic surgeons. In most States and Territories, there are cosmetic surgeons or dermatologists with experience in using facial fillers in people with HIV.
Table of contents
This site complies with the HONcode standard for trustworthy health information: verify here. 
