Miami Herald (MH) - Thursday, June 20, 1991
David Zeman; Herald Staff Writer

Here are two things you have never seen in AIDS victim Kimberly Bergalis, who was infected by her dentist.

Her anger: "Do I blame myself? I sure don't . . .," she wrote in a letter to state health officials. "I blame (dentist David) Acer and every single one of you bastards. Anyone that knew Dr. Acer was infected and had full-blown AIDS and stood by not doing a damn thing about it. You are all just as guilty as he was."

Her pain: "I have lived to see my hair fall out, my body lose over 40 pounds, blisters on my sides. I've lived to go through nausea and vomiting, continual night sweats, chronic fevers of 103-104 that don't go away anymore. I have cramping and diarrhea . . . I have lived through the torturous acne that infested my face and neck -- brought on by AZT."

Bergalis, 23, is no longer the delicate but beautiful young woman who appeared on national talk shows, in hot air balloons, or standing bravely on windswept beaches. That was months ago, when she was the strong, mature-beyond-her-years college grad who contracted AIDS from her dentist during a 1987 office visit.

Now, the Fort Pierce woman spends her days in agony, drifting in and out of consciousness. Her wasted body resembles a jumble of broken match sticks. She weighs maybe 70 pounds. She hasn't eaten solid foods in two months. She must be carried to the toilet. A rust-colored paste cakes her tongue like broken concrete on a sidewalk.

"She'd like to die," says father George Bergalis. "That's foremost in her mind. She just continually questions why God hasn't taken her yet. Death, as far as she's concerned, will be a relief.

"We don't pray for miracles anymore, we pray for her to pass on as quickly and as painlessly as possible."

But before she dies, she desperately wants you to see her. To see AIDS.

"People never saw the down side of her condition," says her father. "This is the real AIDS, the way people really get. It's not a pretty picture."

Kimberly can barely talk now. She makes sounds, but her mouth cannot form shapes. Her words above are from a letter she wrote April 6 to Nikki Economou, an investigator with the state Department of Health and Rehabilitative Services. It is an extraordinary and bitter account of her body's destruction. Is she glad she wrote it?

"Yes," she said Wednesday, her blue eyes sharp against her sunken face. "Very happy."

"It's the first time she came out and expressed anger," said George Bergalis. "She was keeping that inside."

In September 1987, Stuart dentist David Acer was diagnosed as having full-blown AIDS. Three months later, Bergalis, a University of Florida college student, entered his office to have her molars extracted.

It would take two years before Bergalis also was diagnosed with AIDS. Last August, she learned from the national Centers for Disease Control that Acer was the source. It was the first time a patient ever had contracted AIDS from a doctor.

And she would not be the only victim. According to the CDC, Acer, who died last September, also infected four other patients with the AIDS virus during routine office visits.

Bergalis sat down with her family and their attorney, Bob Montgomery, and charted their options. Together, they decided she would go public, she would devote the time she had left to lobby for mandatory AIDS testing of health care workers and full disclosure of AIDS status between doctors and patients.

"She knew once we made that decision, there was no turning back," said George Bergalis. "It would thrust her life and ours completely out into the public spotlight. It would change our lives forever."

"She's going to be in every history book that's written," said Barbara Webb, 65, a retired school teacher and one of the four Acer patients who tested HIV positive. "She is the prime inspiration for the movement toward mandatory testing."

It is a movement that has drawn significant opposition from the medical establishment. In January, both the American Medical Association and the American Dental Association added new guidelines asking physicians infected with the AIDS virus to either stop performing invasive medical procedures or disclose their HIV status to patients.

However, neither the state nor the national organizations have recommended mandatory testing or disclosure for doctors with AIDS.

"How they cannot embrace testing and removal of those in a position to do harm is absolutely beyond me," said Montgomery, Bergalis' attorney.

"AIDS is a confidential disease," responds Dr. James Howell, district director of the AIDS program for HRS. He noted, however, that state regulatory boards are in the process of setting new standards for reporting infectious diseases.

"If I tested positive," he said, "I personally would not practice surgery or perform invasive procedures."

Howell declined to discuss Bergalis' letter. The investigator to whom it was addressed could not be reached. There was no reply.

"It's a hell of a way to die," Howell said.

Kimberly Bergalis agrees.

"Do you know what it's like to look at yourself in a full-length mirror before you shower -- and you only see a skeleton," she wrote in her letter. "Do you know what I did? I slid to the floor and I cried. Now, I shower with a blanket over the mirror."

A LETTER FROM KIMBERLY BERGALIS

On April 6, Kimberly Bergalis wrote a note to Nikki Economou, an investigator with the state Department of Health and Rehabilitative Services. In it, she described her condition and her concerns:

Dear Nikki,

Hello. I received your letter, Nikki. Let me tell you something -- since Spring of 1989 my life has taken an unsuspecting twist. When I was diagnosed with AIDS in December of '89, I was only 21 years old. It was the shock of my life and my family's as well. I thought I would die right then and there.

Well I lived Nikki. I have lived to see my hair fall out, my body lose over 40 pounds, blisters on my sides. I've lived to go through nausea and vomiting, continual night sweats, chronic fevers of 103-104 that don't go away anymore. . . . I have lived through the torturous acne that infested my face and neck -- brought on by AZT. I have endured trips twice a week to Miami for three months only to receive painful IV injections. I've had blood transfusions. I've had a bone marrow biopsy. I cried my heart out from the pain of the biopsy. . . . I lived through the fear of whether or not my liver has been completely destroyed by DDI and other drugs. It may very well be. I lived to see white fungus grow all over the inside of my mouth, the back of my throat, my gums, and now my lips. I have it on my tongue. . . . It looks like white fur and it gives you atrocious breath. . . . I've had vaginal yeast infections. And do you know how hard it is not to scream when a physician says "your oral hairy leukoplakia looks better." "My what?" I have tiny blisters on my lips. It may be the first stages of herpes.

I was infected by Dr. Acer in 1987, Nikki. My life has been sheer hell except for the good times and closeness with my family and my enjoyment for life and nature. AIDS has slowly destroyed me. Unless a cure is found, I will be another one of your statistics soon.

Whom do I blame? Do I blame myself? I sure don't. I never used IV drugs, never slept with anyone, and never had a blood transfusion. I blame Dr. Acer and every single one of you bastards. Anyone who knew Dr. Acer was infected and had full-blown AIDS and stood by not doing a damn thing about it. You are all just as guilty as he was. You've ruined my life and my family's. I forgive Dr. Acer because I believe the disease affected his mind. He wasn't able to think properly and he continued to practice.

Do you know my family will be emotionally scarred by this forever? . . . Have you ever awakened in the middle of the night soaking wet from a night sweat -- only to have it happen again an hour later? . . . Do you know what it's like to look at yourself in a full-length mirror before you shower -- and you only see a skeleton? Do you know what I did? I slid to the floor and I cried. Now I shower with a blanket over the mirror.

Are you aware that it's highly possible and probable that I am now affected by an extremely rare bacteriological disease known as MAI (mycobacterium avium intercellular) for which there is no cure? . . . It's nothing personal against you, Nikki -- but I had a harder time forgiving your organization. I forgive -- but my family will NEVER forget. . . .

We need laws to protect against this. OPEN YOUR EYES! I also think you are all a complete bunch of wimps. Not one person was ever man enough or woman enough to join me in my stand. I did it all on my own -- it was me, Mom, Dad, Sondra, and Ali, Bob Montgomery, David Eaton, Ralph Wiles, and Dr. Kuvan. We were a team -- and we're still like family. So don't ever try and take the credit.

Nikki -- you always say you were very concerned. Well, do you realize not a day went by that I didn't speak with either Bob, David, or Ralph? Do you know how many times they've taken me to lunch, just because they wanted to spend precious time with me? Do you know how much I love them? Where were HRS' phone calls?

Well -- I think I've said enough. Like I said -- all is forgiven by me -- there's no hard feelings anymore. But I will never forget.

Sincerely, Kimberly Bergalis

P.S. If laws are not formed to provide protection, then my suffering and death was in vain.

I'm dying guys. Goodbye.

CUTLINE: WALTER MICHOT/Miami Herald Staff. WEAKENING: Bergalis hasn't eaten solid food in months.

CUTLINE: WALTER MICHOT/Miami Herald Staff. HELPING HER COPE WITH PAIN: Kimberly Bergalis is visited in her Fort Pierce home Wednesday by friend Bridget King.

CAPTION: PHOTO Kimberly BERGALIS with Bridget King; photo: Kimberly BERGALIS

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