Reported by Donna Wilson, STATEWIDE Correspondent

[AIDS patient Laurie Heavey] "You know, everybody's really down on research, and so what I learned here is that everybody's working. It just takes a long time."
[AIDS patient Randy Rader] "I had something because things just weren't right. But like I said, back in those days we didn't have 'AIDS'."
[AIDS patient Cory Daniels] "I know you have to go sometime, and whenever God's ready, He will make it happen. But no, that's something I'm not scared of. More scared of living."
All of these people have one thing in common. They're fighting the virus that causes AIDS, either in their own bodies, or in the lab, or both. At the University of Nebraska Medical Center, they're working hard to prevent the disease and track its mutations. Daniel Cobos is a clinical studies coordinator at UNMC.
[Dr. Daniel Cobos] "After they go through the initial period of having side effects, they come back and they say they're feeling great. People have come in and said, 'Thank you very much for helping me to get on this program, this is the best I've felt in years.'"
Cobos points to a specific case, a patient who two months ago had a viral load of more than 74,000. After taking the medications in the clinical study, the viral load dropped to 875. The patient's T-cell count tripled over that period. All those numbers mean is the patient is feeling a lot better. Over 150 patients participate in the drug trials at UNMC. They call them clinical studies. Were it not for these studies, a lot of HIV positive and AIDS patients would not receive proper care.
[Cobos] "This is a good way for them to access medicines, because as you might probably know, these medications are very, very expensive. So when they go on clinical trial, the meds are paid for, laboratory visits are paid for, and usually people want studies like to monitor the labs very carefully so that's all covered. Sometimes clinical visits are covered also."
[Doctor talking to Cory Daniels] "So it's just generally blurry, the eyes over all? Are there bits of it missing here and there or is it just generally blurry?"
[Cory Daniels] "There's pieces of it missing."
Cory Daniels is participating in the trials. Today she's having problems with her vision. She is in good spirits, though. Since she was diagnosed with HIV seven years ago, she's been sicker than she is today. Cory contracted the virus by having sex with a heterosexual man.
[Cory] "There's a denial period that they usually go through. I went through it for four years. I said, 'Well, if I ignore it, it will go away.' Boy, was I surprised. And then I got real sick. I almost died. I got tuberculosis. That kind of woke me up a little bit. But no, it doesn't go away. I wish it did, but it doesn't."
People in the animal modeling systems lab are trying to make the disease or at least some of its symptoms go away. Dr. Janae Limoges is a clinician and research associate on a research grant that's the only one of its kind in the nation.
[Janae Limoges] "We work on an animal model system of HIV encephalitis."
Janae and her colleagues are trying to figure out how HIV might bring about dementia in human patients. The experiments last about four weeks so the knowledge of treatment response is quick.
[Limoges] "It takes a long time for them to even get the disease. It takes a long time to see if you're going to get a response to your drugs. Whereas at least in our animal model, we can get disease quickly and we can get a quick idea of whether or not a drug might work. It still doesn't translate -- if the drug works in my mouse model, it's not necessarily going to work in humans, but it's a good indication that we may have a promising drug here, we may have something we can move into clinical testing."
Brett Banks is part of a clinical study.
[Brett Banks] "Basically what got me started was I had this fear, terrible fear of having fullblown AIDS diagnosis. My T-cells were getting down there. So at the time when they were starting to get down where they diagnosis you with that, then it was time to do something. At that time they had an open study that was available here, and I took advantage of it. Now my viral load is undetectable and my T-cells are up around 500."
This is where research like Janae's comes in. A quarter of adults with HIV will acquire HIV encephalitis or dementia. It's one of the greatest and most costly worries associated with the disease.
[Limoges] "Currently the great majority of our research that we're doing here in the lab is not to prevent the disease. We're working specifically on just the neurological aspects. Right now we're working on trying to understand it, because if we don't understand how it works, if we don't understand what causes it, then we have a very hard time trying to understand how to treat it, much less how to take that a step further and prevent it."
Laurie is a lab assistant here at UNMC. She is also HIV positive.
[Laurie Heavey] "I was diagnosed in 1989 with HIV. I've been very active since then and do a lot of speaking and education, PSA's, and things like that. But I never really had any opportunity to learn the scientific part of it. So, I thought that that would be a really neat thing to be able to do. So I came and did that for six weeks, and it was fascinating to me."
It took a while before it was fascinating. At first the thought of the virus attacking Laurie from the inside was devastating to her.
[Laurie] "And to be honest with you, for a while when I first started this job, I wasn't sure if this was going to be for me, if I was going to be able to do this because I found myself really concentrating on T-cells and the destruction of T-cells. I've had opportunities to look in microscopes and look at cells uninfected and then see them be infected and then look at them later and see the destruction. I started envisioning that in my own body, and it wasn't a real good thing for me. I was really caught up in it. So I had some doubts for a while. I thought, you know, I don't know if knowing all this is really good for me. But that's tamed down now."
Laurie is taking a combination of drugs. It's what they're now calling a cocktail. Brett Banks is also taking a combination. He participates in one of UNMC's clinical studies.
[Brett Banks] "It's three meds. I take Crixivan, AZT, and 3TC."
Back to the lab. This is where the process begins, to get the drugs to people like Brett, Randy, and Cory. It's taken years of research to get to them the drugs they're currently testing.
[Limoges] "We can't do certain types of human experimentation, even if people are willing. Even if people say, 'I'm going to die anyway, I don't care, let me be a subject,' you still usually cannot get permission to do certain types of studies by your institutional review boards and the people that protect patients' rights. Even if people are out there volunteering, we still are not allowed to do it."
[Cobos] "When people first started on these meds back in the 1980's, the dosages weren't adjusted quite right and so people got toxic levels, especially of AZT. But now we know exactly how to dose people. There is two main categories that we use. There's anti-retrovirals. That's AZT, 3TC, drugs that fall into that category and the newer drug that is the protease inhibitor. We use combinations of the two."
Over the past decade plus, Randy has acquired lots of information, and as to whether we're paying enough attention to AIDS and what the implications are, Randy says yes and no.
[Randy Rader] "Yes, because I'm in a program here at UNMC where I'm taking the drugs, and I see a lot of my old friends from years and years ago that are here, too. I know it's working in that aspect. But no, because I don't know -- I don't want to stereotype it being Nebraska and the Midwest because people don't care or they just can't be bothered with it or some people say we're too conservative here or whatever. I don't think there's enough education out there."
Janae works in a lab and with patients. She points to the most recent concentration on protease inhibitors. Protease in the cells is used by the virus to replicate. Protease Inhibitors stop that rep indication slowing viral reproduction.
[Limoges] "It targets a different enzyme in the virus called 'protease' which is just one of the substances involved in the viral replication and how it gets into the cells and how it basically replicates itself. Previously we were targeting an enzyme called reverse transcriptase. The first drugs that all came out were nucleoside reverse transcriptase inhibitors and then we had a class of non-nucleoside reverse transcriptase inhibitors whereas these specifically inhibit the protease that's used by the virus for its replication. So it's essentially just hitting it in at a different part of its lifecycle."
Protease inhibitors like Indinavir, Nelfinavir, and Saquinavir, among others, are used in the clinical trials.
[Cobos] "Usually we use two anti-retrovirals and one protease inhibitor, and those are chosen specific to the patient and what the patient can tolerate."
Regardless of the magnitude of the studies or grants, most at the Med Center will tell you it's about people and how much they know about the disease. Whether it's in the lab...
[Limoges] "If you don't really realize what's going on from the patient standpoint or from the disease standpoint, you can get caught up in just doing your research for the sake of doing research. I think that it is nice to get the clinical point of view in there to keep your focus on something that is relevant, something that is pertinent, something that can be used for patient care."
In the hospital...
[Cobos] "There were people who I saw last summer who I truly believed were not going to be around for very much longer, and now they're out there being productive and they'll come in and say I wasn't planning to live this long, I really thought I was going to die. That's very rewarding. That's very good to hear."
Or in the hepers of those who have this disease...
[Donna Wilson question] "What do you think about people who have a suspicion [they have HIV], but don't really act on it? What do you tell them? You had a suspicion."
[Randy] "Mm-hmm. You're just losing an argument with time."
[Brett] "Right now, the only way that we're going to stop this thing is through education. It's very important that they get it. I don't care what the age thing is because this disease has no limits."