What is HIV-associated lipodystrophy?

Lipodystrophy is a term for abnormal changes in body fat that affect some people living with HIV (human immunodeficiency virus). The occurrence of lipodystrophy is strongly correlated with the use of early antiretroviral medications. It may involve either or both:

Lipoatrophy — abnormal fat loss in the face, limbs, and buttocks. Fat loss in the face (facial wasting) is the most common presentation (Figure 1). Lipoatrophy is distinct from HIV-related wasting, which is a general loss of fat and lean muscle tissue.
Lipohypertrophy — abnormal fat buildup in the abdomen, breasts (in both men and women), upper back and shoulders (“buffalo hump” see Figure 2), and around the neck (“horse collar”).

Fig 1. Examples of facial lipoatrophy in HIV-positive men receiving antiretroviral therapy.

Fig 2. Example of significant lipohypertrophy in the upper back in an HIV-positive man receiving antiretroviral therapy.

How common is lipodystrophy?

The risk of developing lipodystrophy with current HIV treatment regimens is very rare. Some early antiretroviral therapy (ART) drugs, particularly stavudine (d4T, Zerit) and zidovudine (AZT, Retrovir) — which have not been recommended or commonly used in California since 2003 — are strongly correlated with HIV-associated lipodystrophy. The condition has declined along with use of those early ART drugs.

What causes lipodystrophy?

The exact cause is unknown, but according to the AIDSinfo, potential risk factors include:

Age: Older people are at higher risk.
Race: White people are at the highest risk.
Gender: Men are more likely to have fat loss in the arms and legs, while women are more likely to have fat buildup in the breasts and abdomen.
Length and severity of HIV infection: The risk increases in people with longer and more severe HIV infection.

What are the long term impacts/effects?

Lipodystrophy can have an dramatic impact on the quality of life of people living with HIV, causing both physical and psychological problems. Changes in body fat distribution, especially in the face, carries a social stigma and have been shown to cause physical discomfort and impairment, as well as psychological distress. Many fear that fat loss represents disease progression or worry that visible changes would lead to unintentional disclosure of their HIV status.

For example, in a sample of 250 HIV+ patients starting antiretroviral therapy in 1996, 62.7% reported an impact of body changes on their social contacts, 68% reported an impact on daily performance, 68% on their sexuality and 82.7% on self-esteem.

Physically, symptoms of distention and gastroesophageal reflux may arise because of increased abdominal girth.
Difficulty in exercising and sleep problems have been observed in clinical practice
Gynecomastia, if significant, can cause localized pain as well as pain in the dorsolumbar region.
Psychologically, the morphological changes caused by lipodystrophy can produce anxiety, depression and loss of self-esteem.
Emaciation of the face especially stigmatizes HIV+ patients, causing some to stop all antiretroviral medication.

How do I get diagnosed?

Weight, size and body mass index are important parameters when evaluating lipodystrophy in people living with HIV; however, these criteria alone are not enough to distinguish lipoatrophy from wasting or lipoaccumulation from obesity.

Arm, neck, thigh, waist and hip circumference measurements have been used as markers of lipodystrophy. Although there is no precise value that reliably reflects the presence or absence of fat redistribution, some authors have employed waist to hip ratios greater than 0.95 in men and 0.85 or 0.90 in women as indicators of lipodystrophy. A weak correlation has been shown to exist between body measurements and the results of DEXA (dual energy x-ray absorptiometry) and CT (computed tomography) scans for evaluating body fat mass. Skin fold measurements obtained from the chest, biceps, triceps or from the shoulder, waist or gluteal regions can also be used to estimate body composition in patients with lipodystrophy.

Ask your primary care doctor or an HIV specialist about HIV-associated lipodystrophy if you believe you may be at risk. Depending on the procedure, the treatment would be handled by a dermatologist, plastic surgeon, or endocrinologist.

What are the available treatment options?

The California Health Benefits Review Program’s (CHBRP) medical effectiveness analysis included several potential treatment options:

Facial fillers increase facial fat (i.e., reduce the visible effects of facial lipoatrophy) and limited evidence that their effects persist for 2 to 5 years;
Switching ART to exclude stavudine or zidovudine increases facial and limb fat. * Note: these drugs are no longer prescribed in California.
Metformin reduces body mass index and waist-to-hip ratio, but may increase the likelihood of lipoatrophy;
Tesamorelin (Egrifta) reduces abdominal visceral fat, preserves abdominal subcutaneous fat, and increases lean body mass but insufficient evidence of benefits and risks associated with long-term treatment.
Growth hormone reduces visceral fat. However, there is conflicting evidence as to whether effects persist after treatment ends. Using growth hormone is associated with increased risk of developing diabetes.

Is treatment covered by my insurance?

Under the California reconstructive surgery mandate, any plan governed by the State of California, including Medi-Cal and all California private insurance shall cover HIV-associated lipodystrophy and lipoatrophy treatment and all necessary procedures.

Which insurance plans do not cover treatment?

Insurance plans that are not governed by the State of California do not necessarily cover lipodystrophy and lipoatrophy treatment. For example, if you receive insurance through your employer based in another state, these treatments may not be covered.

Senate Bill 221 – Healthcare coverage: lipodystrophy syndrome

In 2017, Senator Scott Wiener worked with statewide and national advocates, including Equality California to introduce SB 221, which would do the same in California. For a fact sheet on SB 221, click here. During the legislative process, it became clear that the issue with gaps in insurance coverage for lipodystrophy treatment was an administrative and awareness problem — not something that required a legislative fix.

For a detailed analysis of Senate Bill 221 and additional information on lipodystrophy, click here.

Following the 2017 Legislative Session, Senator Wiener and HIV advocates shifted their focus to increasing public awareness of coverage and treatment options for lipodystrophy. The goal of the awareness campaign is to make sure that patients know their rights when it came to insurance coverage, and physicians know that patients are entitled to insurance coverage for these procedures and treatments.

Contact:

For more information contact Brad Lundahl at brad@eqca.org or 323-848-9801.