Miami Herald - Sunday, January 20, 2002
Stephen Smith, sfsmith@herald.com

It's little things -- at first.

Difficulty making the bed.

Trouble recalling the content of a newspaper article.

Faltering footsteps.

AIDS has stolen the physical health of its sufferers for two decades. Now, South Florida researchers are mining conclusive -- and sobering -- evidence that the virus can rob patients of their mental faculties, a relentless thievery unfolding across years.

And the damage appears to be most severe among older people carrying the virus, a discovery that resounds with new relevance as patients infected during their youth crest middle age, their lives prolonged by potent drug cocktails.

A continuing medical study, begun four years ago, shows that mental impairment can be blamed on more than the erosion that might come with age. Older people infected with the human immunodeficiency virus had significantly more symptoms than older people who aren't infected.

It is another legacy of a disease with seemingly limitless capacity to spawn misery.

And to the doctors laboring to decode the mysteries of acquired immune deficiency syndrome, it is powerful proof of how microscopic viruses outwit the best that science can marshal against them.

"It really is astounding to scientists how complex HIV proves to be and how it can cause damage to multiple organ systems, including the brain," said Dr. Karl Goodkin, a University of Miami psychiatrist who has spent much of the past 20 years studying the virus. "As scientists, I don't think it ever ceases to amaze us."

Or, for that matter, the people whose lives are framed by the virus. Rocky Mountain is a character lumbering out of a Johnny Cash lyrical lamentation, his words loitering in the air: "If you can't laugh, ya gotta cry, and if ya gotta cry, it ain't no fun."

SOMETHING CHANGED

He learned in August 1995 that the AIDS virus had taken up residence in his body.

"I could notice something wasn't running right," said Mountain, 53, of North Miami.

The physical implications of the virus worried him. The mental frightened him even more. He had sung and played guitar, dazzling the crowd with his ability to remember faces and favorite songs.

"I've prided myself too much on my memory to want to lose it," Mountain said. "That's the scariest thing."

So he enrolled in a study presided over by Goodkin, an examination of how the AIDS virus affects intellectual skills and motor functioning of people 50 and older.

"Most important," Mountain said, "was having them watch me. They might catch something I'm not watching."

The seeds for the study were sown more than a decade ago as Goodkin and other researchers began to recognize the mental-health ramifications of the virus. HIV-associated dementia was manifested in patients during later stages of AIDS, and less dramatic impairment was found even in infected people without other symptoms of the disease.

But relatively little research had been conducted among patients 50 and older, a population often neglected in an epidemic that has disproportionately assaulted people in their 20s, 30s and 40s.

Still, older people constituted an ever-larger percentage of AIDS cases through the 1990s. Data from the Centers for Disease Control and Prevention show that while patients 50 and older made up 9.7 percent of AIDS cases reported nationally by 1993, that percentage rose to 13.4 percent by 1999.

In South Florida, the burden borne by people 50 and older is comparable -- and even greater in some counties. The state Department of Health reports that since the dawn of the epidemic, older patients accounted for 13 percent of cases in Broward, 15 percent in Miami-Dade and 16 percent in Palm Beach County.

"The population with HIV is getting older, and there are also older people getting newly infected because there's a lot of denial in the older population," said Dr. Steven Santiago, who provides treatment at Care Resource, South Florida's largest AIDS service agency.

He's treating a patient who has benefited tremendously from the new regime of medicines that arrived in the AIDS medicine cabinet starting in 1996. Virus levels in the patient have declined steeply, while his army of disease-battling cells has summoned reinforcements. Still, the man, in his early 30s, complains of persistent memory lapses.

"We know we're improving patients' quality of life by their not getting opportunistic infections," Santiago said. "But a big part of quality of life is the ability to function intellectually and to feel well emotionally."

That quest drives Goodkin's research.

He snared a $1.8 million grant in 1998 from the National Institutes of Health and began seeking 286 people to participate in his study. To ensure scientific and statistical rigor, he's recruiting older and younger people with the virus as well as people who aren't infected. And he's seeking patients in varying stages of the disease.

Study participants -- 196 have enrolled so far -- undergo a battery of physical and psychological tests, both to determine their current health and to provide the base for comparisons during their three-year role in the research.

The neuropsychological test records responses in a variety of categories, measuring functions such as memory and reaction to visual stimuli.

For instance, people in the study might be given a passage from a story and then queried about it. Or, when a symbol flashes on a computer, they might be instructed to punch a key to measure the speed of their response. Or, they might be given a series of letters and, within a time limit, asked to list as many words as they can that begin with those letters.

Participants are also medically evaluated for any of six symptoms related to memory and movement problems, effects that include impaired concentration, slowed movement, irritability and hobbled coordination.

" It just takes them longer to do mental tasks," Goodkin said. "For example, it takes longer to read a newspaper article. They're used to remembering it without referring back to the article. They find they have to refer back to the article a lot earlier when these symptoms first start showing up."

Early results from the study are striking. Researchers have found that older HIV-positive participants have a level of symptoms approaching twice that of younger infected people. The gap is almost as dramatic when comparing infected older people with those who don't have the virus.

The UM researchers are also analyzing blood samples from the participants and have established a correlation between immune system damage and intellectual impairment. And the older HIV-positive patients had the greatest damage to the cells that lead the immune orchestra.

Scientists know that when it comes to AIDS, the brain is like the canary in the coal mine. It also can be the harbinger of a rebounding infection in patients whose illness appears in check.

GOOD AT HIDING

That's because the virus can sequester itself in the brain and because many of the drugs used to treat AIDS do not penetrate brain tissue effectively.

So Goodkin recommends that doctors begin performing a detailed examination of the brain to detect concentrations of the AIDS virus.

Researchers don't fully understand the why of higher levels of impairment in older HIV patients. They do know that certain deleterious changes associated with aging are amplified by the AIDS virus. There could well be issues related to living with the virus for decades -- and to taking medications for years.

"Doctors are more geared to the physical aspects and managing the side effects than the memory," said Sheri Kaplan, executive director of the Center for Positive Connections, an AIDS counseling and service agency in North Miami. "It's not typically something the physician asks: Are you having problems with your memory?"

Janet Santiago is. She has been dealing with HIV for five years -- and with losing her memory. And she isn't even 50.

She will walk to the kitchen -- and forget why she did.

She was at a birthday party this month for Kaplan -- Santiago works at the center -- and five minutes after a conversation, she couldn't recall what was discussed, let alone the name of the person to whom she'd spoken.

"It's just been getting progressively worse," Janet Santiago said.

"It's gotten to the point now where it's really bothering me. What can I do?"

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