Stigma of AIDS Is Helping to Spread Epidemic
August 30, 2004
Acquired Immune Deficiency Syndrome. I first heard those words more than 20 years ago. But it wasn't until six years later, while I listened to a man dying of AIDS tell the story of what he was going through, that the reality of what it meant really hit me. By that time more than 100,000 Americans had contracted HIV, and over 60,000 had died of AIDS. The disease had become real for me and for my colleagues in virtually every corner of the country.
So much about HIV/AIDS and the epidemic has changed since then. Yet one thing has not changed nearly enough -- HIV is now, as it was in 1989, the most stigmatized disease in American society. In 1989, the stigma attached to HIV, while undeserved, was at least a little more understandable. We knew very little about the disease then. Fears of being infected from kissing, holding hands or sharing a cup with someone with HIV were still common.
Doctors and patients were scrambling to stir up scientific research programs that in many ways had been slow to respond. Despite a rapidly expanding caseload, there was very little reliable medical or scientific information about the virus, how it was transmitted, or what could be done to treat it.
In fact, effective HIV treatments were virtually non-existent at that time. The few medicines that were being used were no match for the virus, which quickly became resistant. The treatment regimens often involved so many pills and such severe side effects that many people felt that taking their medicines every day was as difficult as the disease itself.
Too often, being HIV positive meant having to cope on your own. It wasn't uncommon for doctors and other healthcare workers to refuse to see patients who they knew were HIV positive. Social workers around the country responded at that time, and services for many people began, gradually, to improve.
The situation today is very different. We know how HIV is transmitted, and we know how to prevent infection. Scientists have learned how HIV attacks the body's immune system, what its weaknesses are and how to exploit them. They've even mapped out the virus's genetic structure.
HIV treatments have also improved dramatically in recent years. With the introduction of powerful new drugs in the mid-1990s, HIV/AIDS death rates began to drop for the first time since the start of the epidemic. More recently, treatments that require fewer pills and cause fewer side effects have begun to help people with HIV/AIDS lead longer, healthier lives. Thanks to these advances in care, HIV is on its way to becoming a chronic medical condition.
Support services for people with HIV have also improved. In practically every city across the country you will find community organizations and groups dedicated to helping ensure that HIV-positive individuals get the care and support they need and deserve.
Yet, despite all this progress, the terrible stigma associated with HIV and AIDS still has not lifted. Isolation, fear and shame continue to cloud this diagnosis for many.
What's worse is that the stigma surrounding HIV actually helps to perpetuate the epidemic. Half of the 1,000,000 Americans estimated to be infected with HIV don't even know they have the virus. The cause is not ignorance as much as it is fear. Each year, tens of thousands of people who have contracted HIV do not get tested out of fear that an HIV-positive diagnosis will mean a life of isolation and discrimination.
Misinformation accelerates the spread of HIV in communities across the country, particularly among minority and poorer populations that already suffer more than their share of prejudice and discrimination. Despite progress in other areas, HIV infection rates among African Americans, Hispanics and women have increased dramatically in recent years.
We can't afford to let another 20 years go by before we separate the myths surrounding HIV and AIDS from the reality. It's time we started seeing the disease for what it is: a serious communicable disease that is both avoidable and treatable. We need more open and frank education and more community leadership to address this epidemic. We must also target resources to address the changing demographics of the disease, so that information and education programs can be tailored to the audiences that need them most.
Finally, people living with HIV/AIDS must have access to the medical care and prevention and treatment information they need. Research advances have meant that more and more people with HIV are living full, normal lives. It's time that the human progress in how we handle HIV/AIDS in our community begins to match the advances being made in the research lab.
Vincent J. Lynch, Ph.D., is Director of Continuing Education at Boston College Graduate School of Social Work, and founder and organizer of the Annual National Conference on Social Work and HIV/AIDS.
This article was provided by Seattle Treatment Education Project. It is a part of the publication STEP Ezine.
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