A lot has changed since AIDS emerged in the 1980s. Caused by human immunodeficiency virus, or HIV, the sexually transmitted disease was fatal and untreatable. Today, medicines allow patients to live long and full lives.
What hasn’t changed is the stigma. And that, say those involved in treating HIV, discourages people from one of the keys to reducing the disease: testing.
Monday is National HIV Testing Day. First observed in 1995, the day not only encourages testing, but also follow-through with care and treatment.
Testing leads to earlier diagnoses, earlier and more successful treatment and helps minimize the spread of HIV, said Julie Cacioppo, registered nurse clinic manager for an HIV specialty clinic run by Our Lady of the Lake Regional Medical Center. A campaign since 2015 to promote testing has helped Baton Rouge fall from the nation’s No. 1 city for HIV per capita to 10th place.
Yet, the stigma surrounding HIV is such that less than one-third of the people offered free HIV testing locally take advantage of it, Cacioppo said. It’s why the Lake publicizes the clinic’s name, and enough people know its location that some patients are afraid to be seen there.
It reminds Cacioppo of when she began her nursing career in the ’80s — when some medical personnel avoided HIV patients for fear of contracting the disease, falsely believing it could be spread by casual contact.
“Medical staff are not so afraid of people with HIV (now),” Cacioppo said. “I’m not afraid of anyone. But I can tell you the community that’s uneducated about it is still afraid of it.”
Some of the stigma isn’t based in fear but moral attitudes, said Coletta Barrett, the Lake’s vice president of mission integration. Barrett learned that firsthand when she asked her primary care physician for an HIV test. The doctor closed the door and asked why. Barrett said she couldn’t ask others about their HIV without getting tested herself.
“She said, ‘Oh, thank God!’ ” Barrett said. “That exact response is why people don’t want to ask to be tested because they’re afraid of the moral judgment that goes along with it. Encouraging people to get tested will remove some of that moral judgment.”
To combat this, four area emergency rooms and one urgent care center operated by the Lake informs all patients ages 13 to 64 that they will receive free HIV testing unless they opt out. Ochsner began an identical program in 2019. In February 2020, the Lake has offered the same approach to screen emergency room patients for hepatitis C. Funding has come from city-parish government, the Louisiana Office of Public Health and Gilead Sciences, which makes HIV medications.
Patients who test positive are connected with social workers help them get medical care, including selecting a clinic and attending at least the first appointment with the patient. Treatment can lower HIV levels to the point that they can no longer be detected, and the patient can no longer transmit the disease.
“The drugs now are very well tolerated, minimal side effects,” Cacioppo said. “In the past, it was like cancer treatment where it made them feel worse than the disease along, but now it’s very simple. It’s amazing how much it’s changed in the five years I’ve been here. We’ve gone from two or three pills a day to one pill a day regimens.”
Close to 30% of those offered the testing have gone through with it. Many people decline because they consider it highly unlikely they could have HIV. Cacioppo and Barrett hope they’ll change their minds.
“People who feel like they are not at risk, it’s really important to be tested anyway because if we are testing everyone, then testing becomes normalized, and as testing becomes normalized, then having HIV, the stigma associated with that is going to be reduced,” Cacioppo said. “I have an HIV test and I’m not at risk and I tell other people, ‘Hey, go get tested. I did.’ That sends a positive message about it. We want to encourage more and more people to test so we can encourage the positive messaging and reduce the stigma.”