The HIV Test I Didn’t Want Saved My Life

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STATEMENT: National HIV Testing Day

The HIV Test I Didn’t Want Saved My Life

By Phill Wilson

Today, the Centers for Disease Control and Prevention and the National Association of People with AIDS are sponsoring National HIV Testing Day, in a year that marks the 20th anniversary of the development of the HIV antibody test in 1985. With the passing years of the epidemic, many are numbed to its effects. A day to promote testing is not the news it was even 10 years ago. But on this 20th anniversary, it is worthwhile to look back.

When they think of it at all, most people only think of one AIDS epidemic. But, as a Black man who is also gay, I have lived through two, and I’ve learned hard lessons from both of them.

My first epidemic began in 1980 when hundreds of young gay men, myself included, became infected with a virus that was unknown at the time and that would eventually grow to cause untold pain, suffering and death for millions.

I remember leaving the clinic after receiving the results of my HIV test in 1985. Like most AIDS activists at the time, I had been reluctant to take this new test. I was an HIV counselor at the time, and I had witnessed first hand how people with AIDS were mistreated and discriminated against. There was no evidence that people who tested positive would fare any better.

When people asked me about taking the test, I would always ask, “What are you going to do with the information?” After all there were no treatments at the time, no cocktails, no Lazarus stories and no presidential advisory committees. Indeed, the only reason why I took the test back then was to be able to empathize with the experiences of my clients.

During the 1980s, because the bulk of those identified were young, gay men, the epidemic was characterized in the public mind as a gay plague. By the mid-eighties, it was clear that the virus had begun spreading like wildfire through the African American and Latino communities.

With treatments available and protections against discrimination enacted, there are today many reasons to test. The most important reason is simply this: Knowing your HIV status can save your life. And HIV testing has contributed to overcoming the stigma we worried about 20 years ago.

The gay characterization of the first epidemic had enormous impacts. Many people who thought they did not know a gay person found out they did when a friend or a family member suddenly fell ill or died. Subsequently, the growing awareness of gays in the mainstream increased acceptance. But the other impact of this characterization had a more dubious affect. Those who were not gay did not think it important to be tested.

The virus, however, unlike its human counterparts, doesn’t care who it infects. As a result of many things, including the virus’s ability to attack the poor and marginalized, the gay epidemic gave way to a new one among a population that did not perceive itself at risk. Today, African Americans are more than “at-risk.” In 2003, African Americans represented 13% of the population; however, they were 40% of the total AIDS cases and more than half of all newly diagnosed HIV/AIDS cases. African American teens were 65% of all cases among teens in 2002 and African American women accounted for 67% of new AIDS cases among women in 2003.

Last week, the Centers for Disease Control and Prevention (CDC) released data estimating that 46%–nearly half—of all Black gay and bisexual men (MSM) are already positive and two thirds of them don’t know they have HIV. To put this into perspective, the HIV rate among Black men who have sex with other men is worse than the HIV rates in the hardest hit parts of sub-Saharan Africa. This epidemic needs to change.

The path for change is testing and access to quality medical care. I was infected in 1980 and diagnosed with AIDS in 1990. I am alive today, 25 years later, because I know my status and intervened with life-saving drugs.

People who know their status can save their own life – and the lives of others. The Centers for Disease Control and Prevention estimate that the majority of new HIV infections in this country are transmitted by people who don’t know their HIV status. Studies show that people who learn they are HIV-positive usually take steps to protect their partners. In short, testing is the path to both better treatment and better prevention.

Because in the 1980s the gay community realized that it needed to take ownership of AIDS, the trajectory of the epidemic was changed for that community. Black Americans could benefit from this lesson.

Denial is killing us. Not knowing will not make AIDS go away. No one, particularly those of us in Black communities, can afford complacency when it comes to HIV testing. Complacency is the friend of AIDS. Unlike 1985, AIDS is no longer the automatic death sentence it once was. Now, there is something you can do. I personify what can happen when people with AIDS have the love and support of family and friends and access to appropriate medical care. But you can’t get treated if you don’t get tested.

Phill Wilson is the executive director of the Black AIDS Institute.

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