Ask the Experts
"I have facial wasting and it's really depressing. When I walk down the street, I'm convinced people are staring at me and know that I'm positive. I've heard there's surgery to fix it. What can you tell me?"
-- T.J., Halifax
Dr. Andrew Denton
Director of Facial Plastic Surgery
With facial lipoatrophy, the main problem is a loss of fat under the surface layers of the skin. We don't know what causes people with HIV/AIDS (PHAs) to get a gaunt, drawn appearance exactly, whether it's due to the medication alone or a combination of disease and medication. Facial lipoatrophy isn't dangerous to health but it can hurt psychologically and emotionally and it carries a huge social stigma because it pinpoints you as HIV positive.
Typically, the problem we see with patients with HIV/AIDS is that the fat loss is quite substantial and a lot of filler is needed to replace it. This can make treatment too expensive for some people. Fortunately, there's financial support available for patients meeting certain economic criteria. The Face Forward Foundation provides a substantial subsidy to eligible patients and there are physicians like myself associated with the program who perform the procedure almost at cost.
The treatment challenge is to replace the lost fat. This means injecting or surgically implanting some sort of agent or material. When the patient has shallow cheekbones in addition to lipoatrophy, an implant can be used to add volume to the cheek as well as to the area below the cheek.
Within the injectable-filler category, there are temporary fillers, which last for about one year, longer-lasting semi-permanent fillers that last from one to two years, and permanent fillers. Each has its own advantages and disadvantages. In cases where the fat loss associated with HIV is not too severe (mild to moderate lipoatrophy), a study has shown that patients are very satisfied with injections of Perlane, a temporary filler that is a form of hyaluronic acid. In the study, results lasted for more than a year and there were only minor side effects.
Semi-permanent fillers such as Artefill and Sculptra are also available. I tend not to use these because of the expense to the patient. Other physicians say they get good results with these products.
The product that I use most is Bio-Alcamid, a semi-permanent filler in liquid form. If necessary, quite a lot of it can be injected into the soft tissues of the face, and the body forms a thin collagen capsule around it, keeping it in place.
Bio-Alcamid is also removable to an extent. However, there are still risks including infection and contour irregularities. These risks can be reduced somewhat with good care before and after treatment. I start all my patients on antibiotics the day before treatment and then continue for seven to eight days after treatment.
Treatment begins with photographing and marking the area that will be injected. Local anesthesia is used to numb the skin and reduce the amount of bruising. Then, filler is injected into the face at three to four different places, depending on the size of the area being treated. The material is massaged to smooth it out.
There is a bit of swelling for two to three days after treatment but patients say there is little or no pain. Patients are told not to do any heavy lifting, bending or straining for the first four days and to avoid direct sun exposure, including tanning beds, for four weeks.
After 40 to 50 days, touch-up injections may be needed to smooth out any uneven places on either side of the face. Some minor asymmetries are normal even after a successful treatment and touch-up, however.
I perform two to three of these procedures each month and, overall, my patients have been very happy with the results. I have never had a patient say that he would not have the treatment again.
Jennifer Hendrick, Ph.D.
Psychologist, HIV Clinic
I think that we are probably underestimating the impact of lipoatrophy. Those who come forward for help may represent only a fraction of the number affected. For the past two to three years, I've been asking people on anti-HIV meds how they feel about their appearance and I get the impression that it can affect PHAs of all ages, from those in their 20s right up to those in their 70s.
Anti-HIV meds have been very beneficial but they also come with a price. And while many clinicians treating PHAs for a long time feel encouraged by what these medications can do, we know meds can come with biological and psychological consequences because of lipoatrophy. We are taking it very seriously.
It's our job to encourage and facilitate the discussion around lipoatrophy with patients so they feel supported and won't try to pretend that it's not important. The impact of lipoatrophy is right up there with other psychological issues in HIV, including adherence, anxiety, depression and substance use.
There's not a lot of good research available about the psychological and emotional impact of lipoatrophy because it's a fairly new phenomenon. But it seems that the amount of distress varies among individuals, based on things such as treatment history, life experience and self-esteem. For instance, some PHAs who have experienced a lot of change in their appearance are fine with it; others with minimal appearance-related side effects can be very distressed.
For some, facial changes make them feel more visible. Having HIV and being treated for it are one thing; being publically out about having HIV is another thing. Some PHAs feel more self-conscious, like they're outed against their will. If people who are self-conscious are also looking for romantic or sexual partners, they might feel lipoatrophy limits their opportunities. Some people consider stopping their anti-HIV meds or hesitate to start medication because of a fear of getting lipo. That's a real concern for health-care providers.
Sometimes, people respond to these concerns by isolating themselves socially. For a psychologist, that's a red flag because social isolation can lead to depression and anxiety. Even for those PHAs who are healthy -- high CD4+ counts and undetectable viral load -- visible side effects can force them to confront troubling issues, such as how people may have rejected them in the past.
Then there's the issue of self-esteem. Lipoatrophy can exacerbate low self-esteem, especially if a PHA's sense of self is largely based on appearance. This in turn can play a role in depression and anxiety and relationship problems.
It can also have an impact on a person's motivation and ability to take care of themselves. If a person doesn't feel good about himself, for instance, he may stop taking meds and exercising. One patient I know stopped working out at the gym because he was embarrassed about changes in his face and body. And exercise had been a big coping strategy for him.
There's also the issue of guilt: guilt that you're alive while friends, lovers and co-workers may have died of AIDS. These PHAs appreciate what meds have done for them and don't feel they have the right to report any concern about appearance changes because they have their health.
But some are distressed. They're just not expressing this distress to their caregivers. I would encourage anyone who is feeling the effects of lipoatrophy to discuss it with their primary care physician or their HIV physician or nurse. I think most clinics now have access to mental health professionals, either psychologists or social workers or psychiatrists, and they can really help.
Being listened to and validated helps you realize that it's a problem that's affecting a lot of people, not just you. It's all right to feel concerned about your appearance because it affects how you feel about yourself and your relationships. You don't have to deal with this on your own.
Mental health professionals have the training and experience to help with some of the things that may be part of this: depression, anxiety, self-esteem, the impact on relationships. Even if you've had or are considering the surgical treatments for these symptoms, mental health professionals have a lot to offer as well.
Everybody is unique and reacts to HIV meds differently. We've come a long way from the one-size-fits-all approach to medication. PHAs are considered part of the team and part of the decision-making around their treatment.
Dr. Ken Dolynchuk
Cosmetic and reconstructive plastic surgeon
People with lipoatrophy don't like the way they look and there's also a social stigma. We do as much as we can to help patients get as close as possible to their pre-lipo features.
It's important for people to understand that they probably won't get back to exactly the way they used to look. They also need to know the risks associated with the procedure, including possible infection, nerve damage and even changes in muscle strength and function. Make sure you discuss all of these possibilities with your doctor.
I usually do injections of Bio-Alcamid into one area and then allow things to settle. I ask my patients, most of whom are in their 30s and 40s, to come back in a couple of weeks for a checkup. Then we wait until the injection sites are healed -- approximately six weeks -- before they decide if there are other areas they want injected. Patients who have their upper cheeks done, for instance, often come back and want the brow done, or the lower cheek.
For people with lipoatrophy who are sure they want the procedure, reconstruction surgery is worthwhile.
Director, Face Forward Foundation
The Face Forward Foundation has a Bio-Alcamid subsidy program for people with HIV-related facial wasting / lipoatrophy who are in need of facial esthetic restoration and cannot afford it. We've been around for almost two years now and have helped about 250 patients.
We've figured out a way to reduce the cost of treatment by about 50 percent for individuals who earn below $30,000 a year. Each month, participating surgeons from across Canada treat an average of five patients at the reduced rate. The distributor provides the product to the doctor at cost and Face Forward manages the relationship between the patient, doctor and distributor.
The cost of the procedure is partially determined by how much product is needed. There's a chart on our Web site but the minimum cost to the patient would be $900. Without the Face Forward program, cost to the patient would be about $1,800.
Each person who meets the eligibility criteria is placed on a waiting list and then contacted when an appointment becomes available, usually in about one to two months.
Deciding whether or not to have reconstruction lipo is such a personal thing. Getting support is important but it's a decision that you have to make on your own. We counsel patients on what to expect and we have a buddy system that makes it possible to speak to people who have had treatment and are willing to talk about their experience. We also ask everyone in the program to participate in a quality of life study after the surgery.
For more information and to apply online, visit www.faceforward.ca or call 416.509.2494.
For a personal account of one PHA's experience with facial reconstruction, see "Happy Birthday Handsome."
This article was provided by Canadian AIDS Treatment Information Exchange. It is a part of the publication The Positive Side. Visit CATIE's Web site to find out more about their activities, publications and services.