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AIDS Survivors Want Insurers to Cover Surgery for Disfigurements

Many older drugs to treat AIDS and HIV contribute to a condition called lipodystrophy -- abnormal atrophy and deposits of fatty tissue. The condition is often demoralizing as well as disfiguring, but some insurers don’t cover the liposuction and implants needed to correct the problem.
March 31, 2017

A group of AIDS survivors and people living with HIV want a law forcing health insurers and the Oregon Health Plan to cover procedures that treat the side effects of their illness and medication, including the atrophy of fat cells in some parts of the body and the growth of fat cells in others.

The condition, known as lipodystrophy, may be kept at bay by medications and diet, but often as it worsens it must be treated with implants and liposuction, which insurers may try to pass off as cosmetic surgery.

But advocates argue that correcting the disfigurement is critical to a person’s psychological health. The appearance of someone with a hollowed-out face and “buffalo hump” on the upper back can hinder employment and force individuals to subsist on a disability check.

James Cox, who was first diagnosed with HIV in 1985, likened the need for lipodystrophy to a woman receiving breast reconstruction after a mastectomy -- which insurers are required to cover. Cox said mandating lipodystrophy surgery would likely cost less than breast reconstruction per patient and there are fewer HIV patients who would need such surgery.

“For us, this is no different than breast cancer,” said Cox, who is a member of Let’s Kick ASS (AIDS Survivor Syndrome) PDX. “I don’t want to look like a mutant for my grandson. If we’re going to treat HIV, we need to cover the things that come with it.”

Phurab Kelsang, testifying in an orange Buddhist robe, said his illness and condition, including a gaunt face, had caused him to live as a simple hermit away from society, but like Cox he felt the strength to advocate for others. Lipodystrophy “affected my face and the rest of my body. You can see it in my face.”

Only a third to a half of people with HIV experience lipodystrophy, and it’s more common in patients who were first treated with an older generation of HIV drugs, including protease inhibitors and nucleoside reverse transcriptase inhibitors. The condition becomes more common the longer a patient is treated, according to WebMD.

However, HIV itself may interfere with how the body processes fat, and the more severe the illness, the more likely lipodystrophy will occur. The condition may also just become more common as people live much longer with HIV than in the early days of the epidemic.

A 2005 report from the New England Journal of Medicine noted that women with HIV are more likely to see increased fat deposits, while men are more likely to lose fat deposits, especially in the face, limbs and buttocks. Cox reported both problems.

House Bill 3086, sponsored by freshman legislators Rep. Sheri Malstrom, D-Beaverton, and Rep. Mark Meek, D-Oregon City, mandates that private insurers include lipodystrophy surgery among their covered benefits.

Cox also wants it covered by the Oregon Health Plan, but the bill would need to be amended to request that the Health Evidence Review Commission review the medical literature on lipodystrophy surgery. The HERC has the ultimate authority to determine whether these procedures should be included on the evidence-based prioritized list, which decides what the state’s Medicaid program covers.

Cox, who until recently worked for Multnomah County, succeeded in getting the state’s largest and most progressive county government to cover HIV-related lipodystrophy surgery for county employees this year in its self-insured health plan through Moda Health -- but not the plan through Kaiser Permanente.

He received the surgery through Kaiser in 2009 only after the growth on his back had gotten so large that he could no longer comfortably move his head. He said Kaiser otherwise has a great immunodeficiency clinic, but does not routinely cover liposuction or implants for lipodystrophy.

Elise Brown, the lobbyist for America’s Health Insurance Plans, opposed HB 3086, arguing that insurers do cover lipodystrophy surgery “when it is medically necessary.”

“Medically necessary” may be the sticking point -- and Rep. Mitch Greenlick, D-Portland, said that should include the psychological well-being of the patient.

Reach Chris Gray at [email protected].

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