Miami Herald - Sunday, August 16, 1998
Karen Rafinski, Herald Staff Writer

A new class of AIDS drugs saved him, helping him reclaim his mind, his life and his health.

But the miracle nearly slipped through his fingers a year later, simply because he skipped a few pills.

"If you're lazy just a few days, you're lost," the Fort Lauderdale resident said, poking his fingers at the air for emphasis. "You skip one dose and it could cost you your life."

He didn't mean to. But once in a while he was so tired that he'd fall asleep before he took his midnight dose. That was all it took for the HIV virus to develop resistance to the drugs and renew its assault.

Sohn's tale is all too common and stories like his are part of the reason why protease inhibitors are turning out to be underachievers, AIDS experts say. Many people simply can't handle an unforgiving regimen consisting of up to 50 pills taken each day at different times with different dietary restrictions.

In a recent survey of AIDS patients conducted by Dupont Merck, 43 percent admitted that they'd slipped up at least once in a week's time.

And that may be why, in carefully controlled laboratory tests, the drugs helped about 70 percent of patients -- but in the real world doctors estimate the drugs have benefited only 40 to 50 percent. The medical community is turning its attention to helping patients like Sohn so that protease inhibitors live up to their potential.

A national team of experts is studying how best to help patients keep up with their medicines and will issue guidelines for such programs this fall. The Florida Department of Health will use that work as the basis for a state initiative tailored to the needs of local communities.

Personal regimen

The Miami-Dade County Health Department currently is surveying AIDS patients on its own to develop a program over the next six months that will custom-fit pill regimens into patients' lifestyles.

Broward has had some success recently by giving patients beepers programmed to remind them to take their pills.

But the help available now is scattershot and often depends on how much time a doctor is willing to spend educating patients, local experts say. Too often, though, patients are sent home with a handful of prescriptions and little or no guidance.

"People are really left on their own," said Angela Gaetano of Community AIDS Resource Inc. in Miami. "We really need more programs to support people in this, but right now there's not enough funding for it."

Sohn is lucky enough to participate in a small but novel program in Broward County that could help lead the way. The cooperative project between the North Broward Hospital District's Urgent Care Center and Nova Southeastern University gives pharmacists the job of educating and working with patients to keep them on track.

Center doctors refer patients to the program if they believe they are at a high risk of failing to take the drugs properly. Risk factors range from being homeless or drug-addicted to simply having a job and a busy life that doesn't permit time to stop and pop pills on a rigid schedule. The Dupont Merck survey found the problem cut across all socio-economic lines.

Stick to the schedule

But often, experts say, the biggest problem is persuading a person to commit to the schedule. Dr. Gordon Dickinson of the Miami Veterans' Administration hospital has seen a homeless man living under a bridge do it successfully. All it required was the will to do so.

"If you can't take them like we're prescribing, the next best thing is don't take them at all," Dickinson said. "If you don't take the pills, the virus will still replicate. But when you make up your mind to take them, the drugs will still work. If you take them hit-or-miss, you will build resistance and when you do want to take them, it won't work."

It can be a tough sell.

But sometimes it works. One patient was addicted to cocaine and Dickinson talked him into quitting the AIDS drugs. The man kicked his cocaine habit and got back on the AIDS regimen, successfully improving his health.

The dilemma of getting patients to take drugs correctly is common to many diseases, particularly when the pills aren't needed to fight pain or if they cause side effects.

Kathleen K. Graham, the pharmacist who runs the program Sohn participates in, notes that when a hospital district clinic used jelly beans to simulate the regimen, its doctors failed miserably.

"Some of this is so complicated, I sometimes wonder how anybody is able to do it," she said. "That's why we'd ultimately like to expand this program so that everybody goes through it."

Learn about lifestyles

Many of the people in the program, like Sohn, have failed once already on protease inhibitors. So when the levels of the HIV virus in his blood began to climb, Sohn was referred to Graham's program in Fort Lauderdale. Unlike most doctors, the program's pharmacist has up to an hour to spend with each patient so she can learn about their life and design a regimen they can live with.

She starts by explaining why taking the drugs correctly is critical, sketching out diagrams on scratch paper as she goes. If a patient misses a dose, the blood level of the drug drops too low to protect the patient. Every time that happens, the virus gets the chance to reproduce in the presence of the weakened drug and mutate into a form that might be resistant. Once a resistant virus is formed, the drug is powerless to stop it, even at the right dosage.

And if the patient infects someone else, that person also won't respond to the drug.

"If they know why they have to do all this, they're a lot more motivated to do it instead of letting people think if they miss a pill it's no big deal," Graham said. "With other diseases, it may be no big deal, but with this disease it's a real problem."

Different strokes

Then she moves on to detailed questions about a person's life to custom-fit a regimen he can live with. For example, she helped a man hide his pills in Tylenol bottles so he could attend a family reunion without his relatives finding out he had HIV. Often, she gives working people a simple twice-a-day regimen so they don't have to take pills at work when they're busy and worried about curious co-workers.

After just one week, there is a follow-up with the patient. That allows the pharmacist to spot problems early and offer solutions. One key issue is side effects. Graham found that waiting a month until the next doctor's visit didn't work because by then many patients had given up because of digestive problemsand other discomforts. By treating the side effects quickly, she's able to keep patients on their pills.

Once the patient has established a routine, additional follow-ups are scheduled as needed.

For Sohn, who is back on a new regimen that has lowered the level of HIV virus in his blood to undetectable levels, a simple twice-a-day routine seems to have worked. And, as she does for most patients, Graham gave him a pillbox with compartments for each daily dose that helps patients keep track of their medicines. He's learned to control his diarrhea with daily doses of chocolate -- Hershey's, Special Dark. He laughs about it, but swears it works for him.

"I take my pills every day because I have to take them and that's it," Sohn said.

And it seems to be working for others, too. Graham presented the preliminary results of an informal study of the program at the World AIDS Conference in Geneva, Switzerland, recently. Of the 122 patients studied, they stayed on the regimen for an average of 7.2 months, compared to 4.5 months before. And most in the program are still going strong, with about 70 percent of first-time therapy takers lowering the virus in their blood to undetectable levels.

"We're getting clinical trial-type numbers but we're doing it in the real world," she said.

For Sohn it's been a second chance-and he's holding on tight.

"This clinic saved my life," he said. "I had given up already. . . . But now, for me, the AIDS doesn't exist. . . . I'm happy like never before because I have a gift and the gift is life."

CAPTION: photo: Donna Sabatino examines Eckhard Sohn (a), Kathleen Graham explains medications to Sohn (a)
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