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:
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.
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.
The exact cause is unknown, but according to the AIDSinfo, potential risk factors include:
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.
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.
The California Health Benefits Review Program’s (CHBRP) medical effectiveness analysis included several potential treatment options:
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.
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.
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.
For more information contact Brad Lundahl at email@example.com or 323-848-9801.