DATE: Sunday, March 9, 1997                 TAG: 9703090148

SECTION: FRONT                   PAGE: A1   EDITION: FINAL 

SOURCE: BY TONY WHARTON, STAFF WRITER 

                                            LENGTH:  138 lines

PROSPECT OF AIDS SURVIVAL CREATES CHALLENGES ATTITUDES AND PROBLEMS CHANGE AS NEW DRUGS EXTEND PATIENTS' HOPE.

Until recently, the staff of Tidewater AIDS Crisis Taskforce mourned at least a dozen deaths a month from the disease. Now, they rarely hear of more than two a month.

Some of Dr. Alan Wilson's AIDS patients have had psychiatric counseling - because they're getting better.

Then there are the AIDS sufferers who ran up significant credit card debt, expecting they wouldn't live long enough to pay it back, and now have to figure out how to do just that.

In Hampton Roads and across the nation, at least for now, the history of the AIDS epidemic has taken a dramatic turn: It is changing from a terminal disease to a chronic illness.

A ``cocktail'' of expensive, experimental drugs is forcing the virus that causes AIDS, called HIV, to retreat, with much of the credit going to the protease inhibitors introduced in the past two years.

Nationwide, deaths from AIDS fell 13 percent from the first half of 1995 to the first half of 1996, federal health officials reported Feb. 27. In Virginia, there was a 22 percent drop for the same period.

That change is infusing sufferers with new hope and providing researchers with some breathing space in which to find more permanent solutions. It also is confronting caregivers and AIDS patients with new, unexpected dilemmas.

``There's kind of an unusual thing I've been seeing,'' said Wilson, an Eastern Virginia Medical School physician and researcher with one of the largest AIDS practices in the area. Hampton Roads has the second-largest number of AIDS cases in Virginia.

``People were focused on just living for the next two to three years,'' he said. ``They weren't thinking about the long term anymore.

``And now someone says to them, `I have news for you: You're going to live.' That's not as easy to adjust to as you might think. They have to reset their minds.''

Norfolk resident Kyle Taylor, 38, was diagnosed with the virus in 1988. Over the years, he said, those with AIDS often have heard that a big breakthrough was coming.

``After a while you get to the point where you don't want to set yourself up to say, `OK, I'm all better now and I can go out and do the things I did before,' '' he said. ``Because I'm not all better. The virus is not eradicated. Who's to say that next month I won't die?''

But for now, he's feeling better. He's been on various drugs for three years as part of national clinical trials, and in December he started the full combination of inhibitors.

Don, 38, is one of the success stories.

The Norfolk man, who asked that his full name not be used, developed AIDS in 1994 and was in bad shape by last summer. He had wasted away from 140 pounds to 97. He had had two bouts with pneumonia, a frequent killer of AIDS patients, and four attacks of shingles, a painful disease of the nervous system.

``I was pretty depressed,'' he said. ``I have a very supportive network of friends, but it wasn't good.''

In August he started on protease inhibitors and other medications, a total of 15 pills a day. Now, he's up to 126 pounds and the level of virus in his blood is so low as to be undetectable. Most of his physical symptoms disappeared in the past two months.

``Overall, I feel a lot better,'' he said. ``I'm not what I once was, but I'm not as bad as I was, either. I'm trying to walk around the neighborhood and get my strength back up.''

Maria Johnson, 34, has had AIDS for 14 years. She lost her daughter, Emanuela, to AIDS last summer, and the heartbreak only worsened her condition. Last fall, Maria began taking protease inhibitors.

``I consider it very much a miracle,'' said Maria, whose immune system is rapidly recovering. ``I am a longtime survivor of AIDS, but this has really given me hope that I'm not going to die.''

Don and Maria are not cured. Even when no symptoms are apparent, researchers believe, HIV is lurking in parts of the body, such as organs and tissues, where it can't be detected. If the drugs were halted, they think, the virus would rapidly return.

The protease inhibitors attack AIDS by zeroing in on reproduction of HIV and crippling a critical enzyme it needs. Once the virus' prodigious rate of reproduction has been halted, the body's own immune system can fight back. Patients' overall health improves because they eat and sleep better.

The good news is not universal. Some patients can't take the drugs because of side effects. Some wait too long. Doctors have found that the earlier patients start taking the medications, the better they work.

Still, for many AIDS patients, the drugs have been life-changing.

``The numbers look real good, the clients feel good, and they've started putting on weight,'' said Jim Spivey, director of Tidewater AIDS Crisis Task Force. ``It's not unusual to say to someone, `Hey, you're gaining a little weight,' and they say, `Yeah, I've actually got a little pudge here.' ''

This medical success has produced some ironic results.

Perhaps the greatest, while the hardest to document, is the effect on patients as they realize how a normal or near-normal life expectancy changes their priorities.

Don said he is looking forward to going back to work. Others have trouble with that. Wilson said he knows patients whose ideas about life have changed dramatically.

``They're now well enough to go back to work, but many of them say they don't want to return to their previous jobs,'' Wilson said. ``They've had some time to do some thinking, and some are going back to school, others are looking at totally different careers.''

Martin Mendelsohn, director of Full Circle Aids Hospice Support in Norfolk, said, ``We're just beginning to address the full impact of this.''

It's still difficult for many AIDS patients, as healthy as they are, to work full-time jobs because they're easily fatigued, he said. But they feel too well to stay home. One way Full Circle has dealt with that is turning them into volunteers for Full Circle and other groups.

The patients' apparent health puts them in a difficult position with the bureaucracy, Spivey and Wilson said. Many AIDS patients receive Social Security payments, along with other financial resources, because they are considered to be disabled.

Now, Wilson said, ``They may not meet the classification for disabled anymore. I know of one patient who already is considered no longer eligible.''

The trouble is, even the AIDS patients who are doing so well, and might not be considered disabled, are still in the grip of a very dangerous disease, he said.

``My immune system is still severely depressed,'' Don said. ``My whole life is going to be changed no matter what happens because I have to be careful of disease and infection.''

He and other patients also must continue to take the medications, which can cost $1,000 a month or more.

AIDS patients and caregivers are worried that such expensive, long-term treatment will overtax the already-strained system of insurance, government support and private resources.

``The cost is thankfully not a problem yet for me,'' Don said. ``My private insurance had dumped me, but the Veterans (Affairs) agreed to keep me on.

``Of course, the insurance is astronomical even if they keep you. Of everything that has happened, the insurance has been the worst of it all, just trying to deal with it.''

Wilson and Spivey point out that keeping AIDS patients on the medications is important to the public health as well. Doctors don't want a resistant strain of the virus to develop.

``The last thing we want to do is breed resistance,'' Wilson said. ``That's one reason patient compliance is very important.

``That's really a future worry, though. The trend right now is still very positive.'' ILLUSTRATION: Color photo

GARY C. KNAPP

Kyle Taylor of Norfolk says he feels better since he has been using

the full combination of inhibitors to fight AIDS. KEYWORDS: AIDS TREATMENT ANALYSIS

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