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Willing to risk any AIDS drug


On this day, the only thing about Tema Luft that looks unhealthy is her right wrist. It's wrapped in an Ace bandage. She's got a case of tendinitis. Nothing else about Tema Luft gives her away as a person with AIDS.

"I work out, I go to work," she says, "and I take my DDI."

She pulls a white foil packet from her purse. It contains the anti-viral drug dideoxyinosine, approved this week by the U.S. Food and Drug Administration. Luft has been using DDI -- "compassionate use" was the term used to describe experimental distribution before the FDA action -- twice a day for 21 months. A warning on the packet says: "New Drug Limited by Federal Law To Investigative Use."

The official tests on DDI's effectiveness are still incomplete, but Tema Luft is convinced. She says the drug has prolonged her life. She thinks the FDA should have approved its expanded use long ago.

Others disagree. They believe the FDA commissioner's decision to approve DDI before completion of clinical testing sets a dangerous precedent that could flood the pharmaceutical market with other unproven, perhaps dangerous drugs for AIDS and other life-threatening illnesses.

"But," says Luft, "it was my choice to use DDI. I signed a three-page consent form. I knew it could cause pancreatitis and cause some nerve damage. I knew all that."

Before she got DDI on a "compassionate use" basis, Luft had been taking AZT, approved by the FDA four years ago and, until now, the only drug considered effective in fighting the AIDS virus. But the AZT treatments were not pleasant.

"I was failing on AZT," Luft says during lunch in a Towson restaurant. "It wasn't working for me, and it was making me weak. I became anemic. I needed blood transfusions. I was tired all the time. I had trouble breathing."

Her physician, Dr. Richard Berg, recommended DDI. Luft applied for "compassionate use," got it and started taking the drug. Within months, she felt healthier and stronger. Her storehouse of T4-cells -- vital to keeping the body protected from the illnesses that eventually become fatal -- grew impressively. DDI, says Luft, was a "surprise and a wonderful gift."

But AIDS is virulent. DDI is limited in its effectiveness. "I still feel good," Luft says, "but every month my T-cell count is dropping. Once again, I'm heading to the brink."

Like many men and women with AIDS, Luft follows the latest developments in AIDS research with a passion. She says she was "ecstatic" at a report last June in which researchers at Walter Reed Army Medical Center disclosed that an experimental AIDS vaccine had set off immune responses in patients who already carried the virus. Here was a promising sign: A vaccine, typically used to prevent disease, might prolong the lives of those who already had it. Two-thirds of volunteers who received the vaccine, called gp-160, showed an increase in antibodies and white blood cells, vital to protecting the body from infection. No serious side effects were reported over a 10-month period.

Anything that slows the AIDS virus and keeps it from destroying the immune system is of keen interest to Tema Luft, who turns 39 in a couple of months and would like to live to see 40. She's a heterosexual who acquired this disease from a former boyfriend. She went public a few years ago, appearing on national television to send warnings to other heterosexuals and taking the lead in an important AIDS discrimination case before the Maryland Human Relations Commission.

Now Tema Luft, fighting for her life, wants to try the experimental vaccine gp-160. She knows that researchers at Johns Hopkins Hospital are conducting a variety of tests with it.

"But I've been told I can't get it," Luft says. Unlike the tests at Walter Reed, the Hopkins tests on the gp-160 vaccine will not include people who already are infected. The federal government has not approved such testing.

Tema Luft is angry. Given the possible efficacy of the vaccine, she says she should be allowed into the experiment pool. Similar pleas were heard for DDI several years ago.

"We're willing to take the gamble," she wrote in a plea to an official at the National Institutes of Health. "It's not a lot to ask. I do not want to die knowing that a drug that could save me is sitting on a shelf a few miles from my home. I don't want to be another AIDS statistic. I want to find out if it's true that life begins at 40."

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