The Merriam-Webster dictionary defines stigma as “a set of negative and often unfair beliefs that a society or group of people have about something; archaic: a scar left by a hot iron: brand – a mark of shame or discredit: stain: an identifying mark or characteristic; a specific diagnostic sign of a disease.”
In the early years of HIV, stigma was the driving force that influenced most everything connected to HIV/AIDS. Even as death loomed over almost everyone infected, stigma may have been the biggest barrier to research toward a cure, effective and relevant prevention methods, testing and even medical care.
Why so much stigma around HIV?
There are several causes. The obvious is that HIV is linked to sex and drugs. Since the primary means of transmission is through sexual activity and injection drug use, HIV became a taboo subject. Coupled with the fact the first cases were diagnosed in gay men, stigma became synonymous with HIV.
But one of the most stigmatizing factors probably began with President Reagan and his refusal to address the issue until he was forced. The first cases of HIV in the United States were identified in 1981, but Reagan refused to acknowledge its existence until 1987. That fact infuriates many of us to this day.
The response would most certainly have been different had HIV manifested itself in affluent white women. So, how has stigma impacted HIV? As the poet said, “let me count the ways.”
Today, HIV testing is easy to access and, in many places, free. So, why aren’t more people tested? One of the major reasons is stigma.
Just the idea of seeking a test can be frightening. What if someone sees me? Is the tester going to judge me? What if I test positive? Am I going to be rejected by friends and family? What if my employer finds out? All of these questions, all of these fears, relate back to the stigma of HIV. Remember the words used in the definition? Stain, shame, a specific diagnostic sign of a disease.
Seeking and staying in care is extremely important for persons living with HIV. While care is very expensive, Indiana has actually done an excellent job making sure that most folks have comprehensive insurance. In addition, there are programs such as the Ryan White Care Act, which funds HIV-related care and services. We know when individuals are in care, they are healthier, live longer and reduce the chances of transmitting the virus to their partners.
Sadly, even care is influenced by stigma. Some clients are afraid to be seen seeking care at a clinic or doctor’s office associated with HIV. They stay away from care coordination for the same reasons. What if someone sees them entering the Damien Center or Step-Up?
Imagine having access to great care and services that could save your life, but the fear of being judged and stigmatized overpowers the desire to be healthy. It is not uncommon for clients to experience depression, have thoughts of suicide, abuse drugs and/or alcohol because of the burden placed on them by stigma.
And then there’s research. More than 30 years from the discovery of HIV and there is still no cure. Certainly millions of dollars have been spent on research over the years, but one has to wonder if the stigma of HIV has influenced dollars allocated to finding a cure. It took six years for the President of the United States to say “AIDS,” so it’s safe to say, we got a later than necessary start.
The discovery of new and much more effective medications has been quite successful. What was once a death sentence is now a manageable disease. So, we celebrate the successes while recognizing more could have been done had it not been for stigma.
Because of how HIV is transmitted, there are often moral judgments made about the folks who are living with HIV. They are often blamed for being sick, are the subjects of gossip, fear and even victims of violence.
While this was more prevalent in the early years of the epidemic, I am sorry to say stigma remains a serious issue. Seldom are people ridiculed or judged because they have cancer or heart disease or most any other disorder. They are not shunned or disowned or fired from their jobs or evicted from their homes. They aren’t afraid to seek care because someone might see them enter a particular clinic.
From the moment scientists identified HIV, responses of fear, denial, stigma and discrimination have accompanied the epidemic. Discrimination has spread rapidly, fueling anxiety and prejudice against the groups most affected. It has been said “HIV is as much about social phenomena as it is about biological and medical concerns.” Which is why stigma, that mark of shame, is so prevalent in HIV. Often HIV is seen as a moral failure rather than a medical issue.
Stigma is real and it is dangerous. It’s the scar that reminds us we are different. It can result in isolation, self-loathing and a steady decline in both mental and physical health.
In 2016, it is ridiculous it is still a problem. When I talk to young kids about HIV, one of the first things I tell them is “we don’t stop loving people because they are sick.” Even an eight-year old child gets that. Why, as adults, are we still branding people living with HIV? It’s time to stop!
Paula French is a co-founder of Step-Up Inc., an organization with the stated mission “to promote health and well-being among underserved and hard to reach populations,” especially in prevention and awareness of HIV/AIDS.