'Buffalo hump' on the neck giving away HIV+ status

MUMBAI: Fifty-one-year-old Madhuri is a long-term survivor of HIV who has been living on lifesaving antiretroviral (ART) drugs since 2005. Although she has endured many challenging side effects of medication, one of the most difficult has been the growth of a 'buffalo hump' on her neck over the years. This growth has now reached a point where it interferes with her ability to sleep, turn around, and be in public without attracting stares and jibes. Madhuri is also concerned that the hump may reveal her HIV status to others.
Thanks to the efficacy of ART, people living with HIV no longer face early mortality. However, many struggle with side effects stemming from drugs that were used decades ago. One such issue is the redistribution of body fat, resulting in a condition called lipodystrophy. Although not a new condition, lipodystrophy is troubling for many people living with HIV (PLHIV), who are now seeking solutions for the changes that have occurred in their bodies after long-term ART use.
Usha, a 45-year-old mother of two from the central suburbs, said she had grown so tired of the hump and the stares that she decided to opt for surgery at BYL Nair Hospital last year. "I could no longer tolerate the stares. The hump was sitting like extra baggage on my shoulder. It was not painful, but it made my life miserable," she said. Usha lamented that many ART centres and doctors do not take the condition seriously, and it took her months to receive surgery. Madhuri said doctors at public hospitals have advised her to exercise and increase physical activity.
Lipodystrophy had long been considered a side effect associated with select ART drugs, particularly earlier-generation agents like stavudine. While WHO phased out the drug in 2009, it kept being used in India for years. The National Aids Control Organisation's observation was that 5-7% of patients were affected by lipodystrophy. In most cases, patients used to lose fat from faces and arms. "But in 1-2% cases, fat got deposited around the neck and shoulder," said Vijay Nayar of NGO Udaan, who knows of a dozen PLHIVs with the condition. "It boils down to the government addressing the side-effects too and not just changing regimens and moving on," he said.
Dr Divya Mithel, an HIV-TB expert, is aware of at least three patients who are living with buffalo humps, one of whom underwent liposuction last year in the hope of a permanent solution. According to Dr Mithel, the condition affects a very small percentage of patients but can cause significant disfigurement in exposed areas, severely impacting quality of life. She echoed that most public hospitals look at it as a cosmetic problem.
Referral centres such as Sion and JJ hospitals reportedly consider lipodystrophy to be among the less serious side-effects of HIV treatment. Dr Nitin Karnik, head of medicine at Sion Hospital, said lipodystrophy is not commonly seen with newer drug regimens. Dr Vidya Nagar, head of medicine at JJ, said considering some ART drugs caused severe toxicity of organs, lipodystrophy was among the less concerning side effects.
Hari Shankar Singh, HIV activist and member of the Delhi Network of Positive People (DNP+), said many HIV patients live with complications of previous drugs because the national programme never kept vigil on side effects.