I recently came across an article about Edmund White, a 71 year-old author, Princeton professor and founder of the Gay Men’s Health Crisis, who has lived for 27 years with HIV. He describes that having HIV today “…is more like a disease like diabetes. There are a lot of inconveniences, but you can go on living.” Despite the upbeat tone of the article, it left me feeling oddly uneasy and wondering whether HIV should indeed be considered a big deal anymore.
I know many people with diabetes and other chronic diseases living long fulfilling lives. Can we say the same about people who live with HIV? Characterizing HIV as an ordinary chronic disease minimizes the unique toll the disease takes not only on the individual, but also on society in general and the gay, bisexual, and transgender communities specifically — groups historically disproportionately impacted by HIV.
Here are some considerations about living with HIV today:
- Most people with HIV will have to take medications for the rest of their lives. If they ever stop these medications, they will be at risk of dying from HIV/AIDS related diseases. These medications can include three or more drugs taken multiple times a day.
- The medications used for HIV are relatively safe, but can have negative effects on brain function, metabolism, fat distribution, cholesterol, and kidneys. Long-term effects of many of these medications are unknown.
- Even when compliant with medications, individuals with HIV are still at risk for a number of illnesses and conditions, including fungal and bacterial infections and cancers.
- There are still many unknowns about how aging will impact the lives of people with HIV; however, as a person ages having HIV may increase the risk of kidney, brain, and heart disease.
- The estimated health care costs over a lifetime for a person newly infected with HIV is estimated at $618,900. (SOURCE: Schackman, B. Medical Care, November 2006; vol 44: pp 990-997)
- The stigma of having HIV can have staggering effects on a person’s social, mental, and personal life, as they often must confront bias and discrimination in their relationships with family members, friends, neighbors, co-workers, romantic partners, and sexual partners.