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A Bill To Require Insurance Coverage For Treatment Of A Debilitating And Disfiguring Side Effect Of HIV Medications

H 927/S 618
Sponsored by Representative Sarah Peake and Senator Mark Montigny

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“My insurer denied my request for treatment to remove a three-pound mass of fat from my neck, even though my doctor said it was the worst case of lipodystrophy he had ever seen. I still have chronic pain.”
-- George Hastie, Jamaica Plain

Bill Summary

This bill requires private insurers, MassHealth, and the Group Insurance Commission to provide medical treatment for lipodystrophy, a disfiguring side-effect of lifesaving, but highly toxic, HIV medications.HIV antiviral medications, known as “triple combination therapy” or “the cocktail,” revolution- ized AIDS care in the 1990’s, extending the lives of people with HIV. These medications also can result in lipodystrophy, the abnormal distribution of body fat. The condition creates “visible disfiguring and stigmatizing morphological changes”1 in body shape and appearance, causing profound physical and psychological harm to people with HIV. While there are inexpensive, effective medical treatments for lipodystrophy, insurers routinely deny claims for treatment on the basis that they are cosmetic and not medically necessary.

See the list of organizations and medical professionals who support this bill.

What are the body changes caused by lipodystrophy?

Lipodystrophy results in both abnormal accumulations of fat and abnormal loss of fat. Abnormal fat accumulation may manifest as a significant fat pad on the neck (colloquially called “buffalo hump”), fat accumulation around the front of the neck and under the chin (colloquially called “horse collar”), and increased abdominal girth. Abnormal fat loss occurs most prominently as wasting in the nasolabial folds of the face as well as in the limbs.

How does lipodystrophy harm people with HIV?

Lipodystrophy has severe physical and psychosocial consequences. Fat accumulations on the neck can cause pain, headaches, restricted movement, inability to sleep, and spinal and postural problems. In addition, substantial medical literature concludes that lipodystrophy results in “im-paired quality of life in both men and women with HIV,” 2 including depression, isolation, poor social functioning, and increased stigma associated with HIV. One medical study described facial lipoatrophy as “a scarlet letter” disclosing a person’s HIV status3 while another report observed that patients with facial lipoatrophy feel that they have the word “AIDS” permanently written on their face.4

Does lipodystrophy harm the broader public health?

Yes. The stigmatizing impact of lipodystrophy has caused patients to discontinue their HIV medications5. This in turn can lead to strains of HIV that are resistant to treatment.

Why is this bill necessary?

Effective medical treatments for lipodystrophy include liposuction to remove accumulated fat and injectable facial fillers to correct facial wasting. Insurers routinely deny claims for these services on the grounds that they are cosmetic. People with HIV should receive treatment to correct the harmful side effects of their medications.

Sources:

  1. 1. Fernandes, A.P.M., Sanches, R.S., Mill, J., Lucy, D., Palha, P.F. & Dalri, M.C.B. “Lipodystrophy syndrome associated with antiretroviral therapy in HIV patients: Considerations for psychological aspects,” Rev Latino-am Enfermagem (2007), p. 1043.
  2. 2. Confrancesco, J., Freedland, E. & McComsey, G. “Treatment options for HIV-associated central fat accumulation,” AIDS Patient Care and STDs (2009), p. 5.
  3. 3. Talmor, M., Hoffman, L.A., & LaTrenta, G.S. “Facial atrophy in HIV-related fat redistribution syndrome: Anatomic evaluation and surgical reconstruction,” Annals of Plastic Surgery (2002), p. 16.
  4. 4. Fernandes, supra note 2, p. 1043.
  5. 5. Chen, D., Misra, A. & Garg, A. “Lipodystrophy in human immunodeficiency virus-infected patients,” The Journal of Clinical Endocrinology & Metabolism (2002), p. 4846 (because of “disfigurement from lipodystrophy many patients may discontinue HAART therapy”).