World AIDS Day is held on 1 December each year and is an opportunity for people worldwide to unite in the fight against HIV, show their support for people living with HIV and to commemorate people who have died. World AIDS Day was the first ever global health day and the first one was held in 1988. — From the World AIDS Day website
By Rose Farnan, BSN, ACRN; Infectious Diseases Program Manager at Truman Medical Center
When Paris Hilton was overheard saying, “Most gay guys probably have AIDS ,” the whole world seemed to gasp in shock, and then they laughed! I mean, what was she thinking?
It’s now been over 30 years since medical professionals first identified cases of HIV and AIDS. We know how it is, and is not, spread. Better treatments equate to longer, healthier lives for people infected with HIV. And with these advancements, comes more tolerance, right?
Newspaper headlines like the following are ancient history:
- Landlord of a California social services organization terminates lease and changes locks claiming that the organization is bringing in diseases
- Michigan police officer tickets woman for not disclosing HIV status before he searches her car
- Texas woman killed by boyfriend because she has HIV
Yeah, remember those headlines? They have gone the way of the dinosaurs.
When I started working in Truman Medical Center’s Infectious Disease Clinic in 1991 I was totally unprepared for the hatred and fear people with HIV faced. Every day, I heard stories of patients who had been kicked out of apartments, fired from their jobs, asked to leave their church, or told never to contact their families again. I witnessed healthcare workers who were afraid to breathe the same air, or touch the hand of a person who had AIDS.
Thankfully, today, those kinds of stories are becoming more and more outdated.
Healthcare workers often contact me to ask about volunteer activities working with AIDS Service organizations or for HIV educational materials to share with schools and churches. There’s just one problem: someone forgot to tell people living with HIV that the stigma of having this disease is less of an issue.
Nationally, 3 out of 5 people living with HIV are not receiving health care. The reasons for this are varied, but almost always are due to some form of stigma. The same is true in our clinic.
We hold focus groups with our clients every year to hear what they have to say about our services. Last year we asked why they miss their appointments and what can we do to improve their clinic experience. We were told that (patients) often miss appointments because they don’t want to be seen in our clinic. They feel that people walking by would know they have HIV. They don’t want educational materials addressing HIV in the waiting room. Again, because someone coming into the clinic would “know” that people sitting in that waiting room have HIV.
Several years ago we stopped using the Infectious Disease clinic name because patients were concerned that “everyone” knew it really meant HIV clinic. Now the same concern is expressed about our current clinic name, even though it is very generic and could mean any type of medical clinic.
So, back to those headlines. You actually don’t have to think back 30 years or even 10 years. They all ran in newspapers across the United States in 2012.
The sorry state of affairs is that the stigma associated with HIV has never gone away. And people living with HIV still suffer the consequences.
There is a new way of thinking about HIV that may help. The Stigma Project proposes an “HIV-neutral” world where people are informed and aware of the state of HIV, but emphasis is placed on the humanity of all people and not casting judgment based on HIV status.
That is the world I want to live in. Please join me in creating an HIV-neutral world so that all people living with HIV will know acceptance in this lifetime.
For more information about how you can help break the stigma of HIV in your community, please visit the following sites:
- World AIDS Day website
- Centers for Disease Control and Prevention/HIV
- The Stigma Project
- Black AIDS Institute
- National Association for People with AIDS
- The Well Project (for women with HIV/AIDS)