De-stigmatizing Disease

Growing up in the '90s, it's almost guaranteed that you have been offered to wear a red AIDS ribbon, a yellow Livestrong bracelet, or a pink breast cancer pin at some point in your life. It could be said that some diseases even have an era as they rise and fall in the awareness of the public eye. We've seen it in the past with polio and mumps and most recently with cancer and AIDS. However, before the public can accept the severity of these diseases and work for change, they must first overcome the built-in stigmas attached to these diseases. This can be difficult to do, especially if choice was a factor in contracting or developing the disease, which would imply that the person is partially responsible for his or her situation. Ultimately, this makes for a cause that is far less likely to generate sympathy or funding from society.
This is not to say that once they are established, stigmas are static. This is most clearly seen with HIV/AIDS and the work of Elizabeth Glaser and her Pediatric AIDS Foundation. The first noted outbreaks of HIV/AIDS were found to be among homosexuals-and later drug addicts-prejudicially characterizing AIDS as a disease that only affected certain target groups whose actions often did not sit well with 1980s American society. In the eyes of some, it began to be seen as a physical manifestation as well as a moral condemnation of the actions of these vulnerable groups. There was also an upsurge in fear, as people were unclear about transmission and feared contracting what, at the time, was viewed as a death sentence.

Yet we saw a breakthrough when Glaser came forward in 1988 with having contracted AIDS through blood transfusions and unknowingly passing it on to her two children, Ariel and Jake. Here was the arrival of the new prototype for an individual living with AIDS: a common American housewife who simply had bad luck with a routine hospital procedure. To highlight the heterosexual white upper-middle-class broadened the impact of AIDS for middle America, allowing it to realize that this disease was no longer isolated to the supposed "others." To understand that it too could affect them was a key step in the movement toward gaining awareness and support for HIV/AIDS.
Presently, red ribbons are synonymous with the cause and there are thousands of walks, dance marathons, and even Live 8 concerts held in order to raise AIDS awareness. The stigma attached to AIDS has come a long way from the times of when Michael Jackson was still black and flux capacitors could take you back to the future.
Well, here we are, back to the future, all the way to Columbia's Dance Marathon, a fundraiser held for the Elizabeth Glaser Pediatric AIDS Foundation just two weeks ago. For 28 hours, in the background of Sexyback, Miss American Pie, and YMCA, statistics were flashing on the Roone Alredge Auditorium stage that indicated that there are greater problems to come.
For instance, last year 1,653 students were admitted into the Columbia University Class of 2010. By the time these first-years have made it through a full day of work, sleep, and classes, 1,800 children around the world have been infected with HIV.
While it can be agreed that HIV/AIDS has been mainstreamed into the consciousness of America, and there has been greater acceptance of those living with AIDS, the stigma is far from being eradicated. For example, as the rate of infection continues to increase, it becomes increasingly problematic if and when medical issues become factors in the employment and admissions decisions of corporate and educational entities.

As unfortunate as it is, companies may not want to hire what they see as a potential liability, or take the economic loss when an individual takes a leave of absence due to illness. Despite protection extended from the Federal Vocational Rehabilitation Act, the potential for harassment and discrimination would thus discourage workers from revealing their status. This inherently raises the question of privacy and the need to disclose medical information. In general, the release of medical records varies by situation and privacy content and the purpose for which they are needed. Yet at what point should people be compelled to reveal their medical history? It would most likely need to be at the point when symptoms do start to surface and when their medical needs would be interfering with their employment duties. However, this leaves them vulnerable to the repercussions of this admission. The solution, to pull a Tom Hanks-circa-Philadelphia, is the courtroom, where justice is blind in areas that others are not. And until the social consensus becomes as sophisticated as that of the law, the court may be the only place where disease stigma can be truly separated from the individual. Despite having heightened awareness, which is a mark of progress, it is in sectors like the workplace that it becomes evident that we still have a long way to go in terms of eliminating disease stigma when it comes to AIDS.