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MEASURE OF HOPE <br> EVERY DAY, ALL DAY LONG, BRENDA ROMAN TAKES THE PILLS THAT ARE GIVING HER A FIGHTING CHANCE AGAINST AIDS

Looking into Brenda Roman's brown eyes, you see a strong woman, not a woman dying of AIDS.

That's partly because the 28-year-old South Buffalo woman refuses to give in to the virus that has taken her on a roller coaster of illnesses, aches and anguish.

"God didn't let me live 11 1/2 years (being HIV-positive) only to take it for real," she said.

Much of the struggle, she believes, is a mental one: "If you think you're going to die, you're going to die, and if you think you're going to live, you'll live."

For the past nine months, Mrs. Roman has had a new kind of help in her quest to live. She is one of the growing number of HIV-infected people to use an elaborate combination of drugs -- known as the AIDS cocktail -- to fight the virus.

Doctors are encouraging people with HIV to consider using the drug combination, which can at least buy more time. The New England Journal of Medicine earlier this month recommended a national standard for reporting the names of infected people to confidential registries, largely because -- with the success of the AIDS cocktail -- there is now more hope for controlling the disease.

There's no doubt, Mrs. Roman says, that the cocktail has helped slow her body's deterioration.

But despite her improvement, she still gets sick.

On the day of the interview for this article, Mrs. Roman left a message at the newspaper that she had the flu, intensified by HIV. The message didn't get through in time, so when a reporter arrived, she pulled on a T-shirt and fuzzy slippers and stoically hauled herself out of bed.

For the next three hours she talked about her life with HIV and how the regimen of drugs has helped.

Pulling out a clear plastic bin labeled "Brenda's Medicine -- Don't Touch!," Mrs. Roman displayed her bottles -- Viracept, Zerit and Epivir -- plus Bactrim to fight off AIDS-related pneumonia, Benadryl so her skin won't itch, Prozac to fight depression and vitamins to stay strong.

Her "cocktail" is 13 daily pills, plus two more on Monday, Wednesday and Friday, plus the Benadryl, Prozac and vitamins. Her life revolves around this bin, and the precious drugs inside.

She also has changed her life to fight the virus. When it's cold, rainy or snowy, she won't leave her first-floor apartment, "even if you put five pairs of pants on me, because I'm not getting PCP pneumonia."

When she feels tired or stressed, she stops what she's doing, so she won't tax her immune system. Breakfast, pills, lunch, pills, dinner, pills -- her schedule is based on meals and medicine.

But what helps her stick with it is the incentive of having more time with her family -- she is married and lives with three of her children -- and any signs of improvement.

"My T-cell count going up by one point is what encourages me to keep taking my pills," she said. "A lot of people say that doesn't matter, but let me think what I want to think. It definitely matters to someone that's got it."

This regimen is not Mrs. Roman's first.

She had trouble taking the doses of her first drug combination exactly on time, and after she developed kidney stones she switched to a second combination. She could time the doses and tolerate these drugs better, but in July she switched to a third combination based on the newest approved drug. This combination gave her fewer side effects, causing only nausea and itchiness. She said that swallowing the large, chalky pills makes her vomit, so every day she crushes them, mixing them into tall glasses of iced tea.

Mrs. Roman's failure with the first drug combination illustrates the greatest consideration for doctors when starting patients on the therapy: making sure they stick with it and take every single dose on time. Doctors say the most difficult part of the therapy is committing to it.

Kati Walsh, program manager of Erie County Medical Center's Immunodeficiency Services, said the therapy means adjusting to a lifestyle based on the drugs.

HIV can become resistant to two or more drugs at the same time, and if doses are continually missed, the drugs may become ineffective. Worse, this strain of drug-resistant HIV can be passed along to others.

Though Mrs. Roman admitted occasionally missing a dose, she said she tries hard to stick with it. She blamed her recent bout with the flu on skipping her drugs.

"It's a commitment, and I know there's many people who don't like to take medicine," she said. "But if you have family and kids, and they love you, and you love them, then it really matters." Mrs. Roman has not told her girls, 7-year-old Monica, 6-year-old Dalila and 4-year old Babette, about her HIV.

Technically she has full-blown AIDS, but she refuses to accept that, preferring to say she is HIV-positive.

She said Monica knows that her mother is gravely ill, and once said to her, "Mommy, I love you, and even if you die, I will always love you." And though an HIV coloring book for children lay on the floor among a scattering of crayons, she said her younger daughters know only that "Mommy has a bad cold."

Of the perhaps 900,000 HIV-infected people in the United States, many -- like Mrs. Roman -- won't discover for many years that they're infected.

She can remember the exact moment she learned: Nov. 4, 1992, at 4 p.m.

She didn't want the test. Addicted to crack cocaine at the time, she said she believed sniffing and smoking was the reason for her extraordinary weight loss -- from 145 pounds to 98 pounds in a month and a half.

A nurse urged her to get checked, and when the time came to get the results, she said she had a horrible premonition as she entered the office.

"She must have been sitting there for a long time, not knowing how to tell me," she said. "I glanced at the paperwork, and I saw HIV-positive, with a plus sign and a circle around it. I didn't make it to the chair; I passed out. Then I started crying and crying."

Even after her test result, Mrs. Roman didn't accept that she was sick. Going into what she called her "time of denial," she turned to her faith, and refused medication. But the virus was starting to affect her.

"I started having symptoms in 1992. I thought it was the cocaine," she said. "I had the runs for six months, my lymph nodes were really swollen, I had unexplained fevers, and when I did get sick, it lasted longer. I was losing weight. In a week's time I lost 12 pounds."

After two years, Mrs. Roman accepted that she had HIV, went into a detox program to quit cocaine and began to take medicine to fight the virus. She has since doubled her weight ("Because of Arby's," she said, grinning). And though she wants to lose weight, she said the extra pounds are her best defense against getting sick.

Mrs. Roman said she believes she was infected more than 11 years ago, by the father of her eldest daughter. She met him in the South Bronx neighborhood where she grew up. She was 17 years old and he was 34. A heroin addict, he introduced her to cocaine and was so physically abusive that she fled to Buffalo in 1990. After she learned that she was HIV-positive, she contacted him again.

"He called me back, and I told him," she said. "What would you think, if you told your ex-partner that you were HIV-positive, and he said: 'Oh my God, it's all my fault! I should have told you!' He loved me selfishly and didn't care what happened to me, and since he was willing to have a baby with me, he didn't care about her, either."

Mrs. Roman's baby did not contract the virus. Neither did her two younger daughters. And four years ago she married Felix Roman, "the only man I trust with my children." He is HIV-negative.

According to a report in the New York Times, AIDS deaths in the United States dropped by 19 percent in the first nine months of 1996 as compared with the same period in 1995. But Mrs. Roman's physician, Lawrence Gugino -- director of HIV services for the University at Buffalo -- said that although this statistic sounds like good news, it's tempered by other facts: The rate among women ages 25 to 44 rose by 3 percent, and the virus is epidemic among black and Hispanic women.

What is encouraging, he said, is that people with AIDS are living longer because of the drug combinations. How much more life the drugs can give people is still unknown.

"I don't think anybody knows yet," Gugino said. "The initial hope was adding 10, 20 years, but we can't know yet."

Ms. Walsh said researchers are working on many new drugs and different classes of drugs to find different angles to attack the virus. She said the problem is that "it's all guesswork."

Scientists don't know the best time to begin the therapy or how long it should be administered. And the drugs are so new that it's impossible to know if there are long-term side effects or how long they will be effective.

Another concern is the price of the drugs, about $24,000 a year. According to James Learned, deputy director of the People With AIDS Health Group in New York City, most health insurance plans pay for the drugs, as does Medicaid, which Mrs. Roman has.

"It's the uninsured folk . . . that are in a horrible position," Learned said. He had no estimate how many people fall into this category, but he said that for them, treatment is probably out of financial reach.

Learned said another scary development that doctors can't explain is the development of diabetes and Cushing's syndrome in some people using the newer drugs. Like the doctors, he said the drugs are so experimental that no one knows what effects they can cause down the line.

Brenda Roman knows that the drugs she's taking may not heal her. But they are giving her some peace of mind.

"I can't sleep that much at night because I'm achy," she said, clutching her bin of pills to her stomach. "But I no longer don't sleep because I'm afraid about not waking up."

Gugino stressed that despite the advances made in treating people with HIV, people should not take the virus lightly, because scientists don't know if they are near a cure.

"There's a new generation of people that are out there engaging in risky behavior," Gugino said. "I don't think anyone should call this a cure. This should be looked at as a way to make this a controllable, chronic disease."

Mrs. Roman said she has used the cocktail to regain control over her life, quitting cocaine without a relapse. She openly talks about the virus in hopes of saving people. She participates in a women's HIV support group, and plans to begin classes at a cosmetology school this fall.

For all her successes, there has been loss, too.

In 1995, a close friend, Amy Jo Kutzbach, died an AIDS-related death. And though Mrs. Roman plans to live, the reality of her health, and how her death will affect her daughters and husband, is something she grapples with every day.

In hopes of helping them deal with her death, Mrs. Roman has spent many hours filling a memory album with her poems, photographs, locks of hair and remembrances, so her girls can remember her. She dedicated the album to her eldest daughter, Monica.

"I don't ask God to heal me anymore, but I ask God just to give me long life to be with my daughters, until they don't need me anymore," she said.

"And when does a child not need their mother? Who knows? Maybe I will see one of my grandchildren."

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