AIDS Day: Ex-Modestan talks about disease that claimed both his parents

November 30, 2009 

Eisenla Kristofer

Kristofer Eisenla, who has written an oped for us about his parents both dying of AIDS.

UNKNOWN — Unknown

Every family has its secrets.

My family's secrets closed the door on my childhood prematurely.

When my parents died of AIDS in 1994, I was 17 -- and one of the only people who knew they were infected. Even my brothers were in the dark until my mother died one month after my father. In Modesto -- a town that could be anywhere in America -- something like this could not possibly happen.

But it did.

My family experienced HIV and AIDS in Jesse Helms' America, when Congress wrote the disease's stigma into law. When my father told me he had AIDS and my mother was positive, I pictured Ryan White. Kept from going to school because he had AIDS, that boy was the symbol of "innocent" victims. I quickly learned it wasn't about innocence or guilt -- just those deserving of compassion.

AIDS was not only an image for us; it was our way of life, full of everyday rituals that I carried out. I gave shots and prepared drug cocktails. I took care of them as best I could. And I kept their secrets. From my brothers, relatives, friends -- from everyone.

HIV/AIDS was the dark cloud that hovered over my head no matter what else I was experiencing -- and I wasn't the infected person. I dealt with my pain in silence while the disease slowly took over, and eventually ended, my parents' lives.

During the 1980s, when my parents learned that they were infected, being diagnosed with HIV was a death sentence. From its beginning as an unknown plague with unknown causes, the disease continued to perpetuate fear even after its transmission and means of prevention were established. We had a president who would not speak about it and a public who associated it with gay men in big cities -- people that many did not respect or accept. Misinformation thrived, but sympathy did not. So my parents hid their illness from everyone.

Over 25 million people worldwide have lost their battle with AIDS -- and transmission rates are not slowing. In fact, according to amfAR, transmission rates nationally have remained at the same level for the past decade.

The disease cuts across every major community. In 2007, racial and ethnic minorities represented the majority of new AIDS cases in the U.S. The share of women living with the disease has more than tripled since the epidemic began; and heterosexual transmission has accounted for a growing share of new HIV infections, 31 percent in 2006.

Although infection rates haven't improved, the lives of people with HIV/AIDS have. My parents would be shocked that the medicine regimen has shrunk to just one pill a day. People are not only living longer, but they are doing so "undetected," without any sign of the disease.

Unfortunately, the stigma is living a long life, too. I vividly remember my mother being too embarrassed to discuss her illness with her own doctor. Over 15 years later, my mother, and thousands like her, would be disappointed in how little has changed.

Fifty-one percent of respondents to a 2009 Kaiser Family Foundation survey said they would be uncomfortable having their food prepared by an infected person. Despite everything we have learned, over one-third of young people still harbor misconceptions about how the disease is spread.

Information has been available for over two decades, but has not reached enough of us.

Attitudes like these are not only prevalent in small cities or towns; they're everywhere.

Both the stigma and ignorance about risk factors reduce the likelihood that people will get tested, which is part of the reason amfAR estimates over 20 percent of those infected are unaware. The stigma is killing people. Infection rates are not going to go down until we address it.

I know that if my parents were alive and infected today, they could expect to survive, live well, and know my brothers and me as the adults we have become. I don't know whether they would still keep secrets. I don't know whether we have come so far that they would not feel the need to.

World AIDS Day is a day to remember. A day to remember those you know who have passed away or who are still fighting the virus. The days of shame felt by my mother may be less obvious, but continue to exist. To honor all those touched by AIDS, we must combat the growing stigma that still remains in our society by moving beyond the old stereotypes and lasting misconceptions.

Eisenla now lives in Washington, D.C., where he serves as deputy chief of staff and communications director for Rep. Diana DeGette of Colorado, working on health care policy.

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