San Francisco Chronicle - Tuesday, December 1, 1992
Yumi L. Wilson, Chronicle East Bay Bureau

Today, Perry is in the limelight more than she ever dreamed possible, showered with offers for television interviews and speaking invitations. Unfortunately, her new-found fame has not come without a price.

On Oct. 15, 1985, Perry tested positive for HIV, the virus that causes AIDS, just a year after her husband of 14 years died of complications from the disease. But Perry, 40, has managed to turn tragedy into triumph, becoming a role model for the tens of thousands of Bay Area residents infected with HIV or AIDS.

"When I was first diagnosed, they told me I had AIDS," said Perry, who overcame cocaine addiction, depression and alienation from family and friends to achieve her goals. "They told me a lot of different death dates -- I have six months to live, a year to live -- lots of misinformation. And I'm still here."

'THE REWARDING THING'

Today, Perry joins thousands of people on World AIDS Day as they remember the 160,372 people who have died from the disease since 1981. World AIDS Day will be marked by events including the unveiling of the AIDS quilt, an art exhibition and a planned protest against the treatment of HIV-positive prisoners at the Vacaville California Medical Facility.

"The rewarding thing for me is, I'm getting the message out," said Perry, who has strived to heighten AIDS awareness, especially among blacks and women, two groups in which the rate of new infections is increasing. "Maybe by knowing me, you'll think a little bit different or have sex a little bit gentler so your condom doesn't break." Perry travels throughout the Bay Area, hoping to eliminate the stigma against people infected with AIDS or HIV and to convince others that being HIV-positive is not a "death sentence." In Alameda County alone, 911 people are living with AIDS; in San Francisco County, the total is 3,541. It is estimated that thousands more are HIV-positive.

Now a state certified counselor for HIV testing, Perry has talked at the University of California at Berkeley, San Francisco State University, scores of Bay Area schools, churches, detention centers and on radio and television programs. She plans to work with the Magic Johnson AIDS Foundation and hold sensitivity training at several major corporations.

The safe-sex message seems to be well-heeded in classrooms where Perry first asks students if there is anything about her that would make them say, "Ooh, 'she's got AIDS." When the class says, " 'No, she's beautiful,' then I tell them."

DOZENS OF LETTERS

Confirming her success are dozens of letters stacked neatly in a pile on Perry's coffee table. In one note addressed to her and another HIV-positive speaker, a student wrote: "If I had not met you two, I might have been one of those ignorant people with unjustified prejudice caused by fear toward others with AIDS."

Another read: "Just to look at you on the outside, it seems everything is right for you. You're a real beautiful woman, nice personality, fresh haircut. It just seems like you have it going on. You touched deep down in my heart today, that AIDS is no joke."

Yet Perry is the first to admit that staying healthy is not as easy as it may look. An average day consists of taking a raft of such anti-AIDS drugs as AZT, DDI and DDC -- about 16 pills in all as part of a clinical trial, which supplies the medication for free.

Currently, she is diagnosed with ARC, AIDS-related complex, a condition in which different forms of the AIDS virus are present in an individual but the person remains clinically healthy. She has fought off three bouts of pneumonia, shingles and is now trying to recover from knee surgery.

OTHER MEDICATIONS

She takes numerous other medications to combat the side effects of the anti-AIDS drugs, but Perry said she feels much safer being in a clinical trial. Earlier this year, she became involved in an underground treatment, which promised to be a "cure for AIDS." After experiencing severe side effects and finding no evidence that the drugs were working, she stopped.

Perry now makes it a point to promote the benefits of clinical trials, especially in the black community, which has been wary of testing since the revelation that doctors withheld treatment from 400 black syphilis-infected men in Tuskegee, Ala. Although some doctors maintain the merit of the study, conducted from 1932 to 1972, many black leaders and community activists called it genocide.

Perry said anyone considering clinical trials should be cautious, but she believes the benefits outweigh the consequences.

"The clinical trial affords you to get the medicines and get them for free," said Perry, now a firm believer in the trials offered at Highland Hospital in Oakland. "You still have a chance of get-ting sick, but you have hospital support."

The hardest part of living with HIV has been the loss of support from her family and boyfriends. Since her husband's death, Perry has found it difficult to find a new love. Her father died in a car crash two years ago, and her mother and most of her family refuse to speak to her.

New friends, many whose lives have been touched by AIDS or HIV, have replaced much of the loss.

"I don't have intimate boyfriends, but it's kind of better," she said. "Because I think if I had a boyfriend right now, I'd be focusing on him. I wouldn't want to go out and speak. I wouldn't want to deal with the kids. But I still pray and ask, 'God, please send someone.' "

CAPTION: PHOTO

Monia Perry, who takes about 16 pills daily, in the kitchen of her studio apartment in Oakland/BY MICHAEL MALONEY/THE CHRONICLE

Always watch for outdated information. This article first appeared in 1992. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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