After Arquette's death on Sunday, medical experts explain how living with HIV/AIDS impacts daily life

By Kara Warner and Mia McNiece
Updated September 13, 2016 07:55 PM
Credit: Amanda Edwards/WireImage

In light of the news surrounding the death of Alexis Arquette – according to a family source, the actress and trans activist died from complications related to AIDS at 47 – medical experts emphasize that patients diagnosed with HIV today “can live a normal life.”

PEOPLE reached out to two experts in the field to answer questions about Americans living with HIV and AIDS: Andrea Kovacs, director of the Maternal Child and Adolescent/Adult Center for Infectious Diseases and Virology at the LAC+USC Medical Center and Dr. Demetre Daskalakis, the New York City Health Department’s Assistant Commissioner for the Bureau of HIV/AIDS.

What does it mean to die of complications from or related to AIDS?

Daskalakis: The term “complications related to AIDS” usually refers to a spectrum of infections, cancers or other conditions related to a weakened immune system caused by HIV, the virus that causes AIDS. The immune system cannot fight off infections and malignancies not seen in people with intact immune systems. Although there are some non-malignant and non-infectious HIV/AIDS complications that can result in death, these are less common. People may also have other co-infections or conditions that may result in mortality. High on that list are hepatitis and tobacco-related illnesses.

What is normal life expectancy for people living with HIV?

Kovacs: If you take the meds, it’s a chronic disease and is managed like a chronic disease. The reasons people die of HIV are multiple and one common cause is that they are not taking their medications.

Daskalakis: Newer data indicates that people that are diagnosed with HIV today and adhere to treatment should live normal life spans. Some data even indicates that they may live longer, likely related to the fact that they are connected to medical services. HIV is a chronic and manageable condition for most people.

Are there common illnesses that prove routinely fatal to those with AIDS?

Kovacs: Some people with HIV can have other problems that are risk factors like drug use, alcohol or if they had hepatitis C, which is probably one of the biggest factors these days. When someone says they died of AIDS the question you would ask is, What is it that caused the person to die? You are always having this chronic inflammation and that increases the risk for cardiovascular disease, dementia and other diseases that maybe someone gets later, but because they have HIV it is accelerated.

Daskalakis: People with AIDS are susceptible to all the common illnesses that cause people without AIDS to get ill. Several opportunistic infections and conditions that do not cause illness in someone with an intact immune system may cause illness and death in people with weakened immune systems due to HIV.

How often do people die of complications related to AIDS now compared to when the disease was first discovered?

Daskalakis: AIDS deaths still happen, but they are much rarer. Nationally, HIV continues to be one of the 10 leading causes of death among people ages 25-44. AIDS-related deaths declined very quickly with the introduction of effective therapy.

In New York City, people living with HIV die more frequently of non-AIDS related causes than AIDS-related deaths. This is similar to national trends. Using N.Y.C. as an example, in the mid-1990s, at the peak of the epidemic, N.Y.C. reported nearly 8,000 HIV-related deaths; in 2014, the last year for which we have compete data, we reported less than 800 HIV-related deaths.

This trend of fewer AIDS deaths continues. HIV is no longer a death sentence. With prompt treatment after diagnosis and follow up with a healthcare provider, people with HIV are living normal and successful lives. It is critical that other aspects of people’s lives be addressed to help support their success in adhering to HIV medications. With adherence, HIV is a chronic but manageable disease. Housing instability, other mental and physical ailments, substance use, and stigma are all barriers to HIV care that need to be acknowledge and addressed to optimize health.