AIDS Drugs Bring Hope and Challenges
MICHELE NORRIS, host:
This is ALL THINGS CONSIDERED from NPR News. I'm Michele Norris.
His patients in Alabama know him simply as Dr. Saag, the tall, balding, bespectacled man who's also one of the top AIDS researchers in the world. Back in the '90s, Michael Saag was one of the first doctors in the U.S. to use a new class of life-extending drugs to treat AIDS and HIV patients. He runs the University of Alabama-Birmingham Center for AIDS Research. Dr. Saag was in Washington the other day lobbying members of Congress to expand funding for AIDS. He stopped by our studios and we talked about his three decades of work with AIDS. His clinic first opened in the late 1980s, when all of medicine was deeply frustrated by a cruel and mysterious disease.
Dr. MICHAEL SAAG (Director, University of Alabama-Birmingham Center for AIDS Research): There were patients coming to us from all over the country who were coming home to die, basically. And we could do nothing much except hold their hand and give them hospice-type care and it was quite wearing on the staff and all of us, just watching so many young people die. By the mid-1990s we started working with these newer drugs and it's an incredible triumph of modern science that we could design targeted therapy, much like a smart bomb, to particular mechanisms of how that virus reproduces itself and these drugs actually began to work.
Initially, we used them one at a time. The virus is very clever, if a virus can think or be clever, where it can mutate and change and make itself so that the drugs don't work anymore, we call that resistance. By 1995-'96, we started putting all the drugs together in what was called a cocktail, and we were able to sort of corner the virus where it can't mutate its way out. Once you suppress the virus, then people's bodies heal themselves. Suddenly patients who were on death's door started almost rising like Lazarus, and going back to work and getting back into society.
NORRIS: How did that transform your practice?
Dr. SAAG: It was an unbelievable, almost indescribable experience. We went from this incredible time of grief and mourning the loss of so many patients who we got to know, to the point where patients were coming in and throwing their arms around our neck and said, thank you for giving us our life back. It was incredibly empowering. And what added to that, which we found out later not to be the case, is that we really, for a moment, in 1996 thought we were going to cure people of HIV. In other words, get rid of the virus as if it were never there, like you cure a strep throat. But we found out later that that wasn't going to be, and we started throttling back, at least the enthusiasm for cure.
NORRIS: How has that affected you as a physician, and how does it affect your staff to sort of ride through the ups and downs of all of this?
Dr. SAAG: It is clearly a rollercoaster, I think the ups and downs is a great way to describe it. And there are moments of exhilaration where you almost feel weightless, and there are moments when you feel you're pulling three to five Gs as you come to the bottom. In the early days, a lot of our staff burned out. They just couldn't take dealing with the patients dying every day.
Now, interestingly, our staff are burning out again but for a totally different reason, and its mainly from workload. Patients are living longer, so our census continues to grow. That's a good thing, but our funding is flat. We don't have the ability to hire additional staff. Our clinic runs at about a million dollar a year deficit every year because third-party payment doesn't cover the cost of care and Ryan White, which is being reauthorized right now...
NORRIS: You mean Ryan White funding?
Dr. SAAG: The Ryan White funding that our clinic gets is maybe one quarter of our expenses, and we've been flat-funded for seven years. And two weeks ago got a five percent cut.
NORRIS: You mentioned staff burnout. How does that manifest itself?
Dr. SAAG: In many ways. Most of our nurses and social workers are there at 7:30 in the morning and they leave at 7:30 at night. They don't get paid overtime. They go to clinic during the day, they come back at 5:00 p.m., they have 45 calls to return from patients. During the day they're slipping away to fax a form, they're taking a phone call, they're calling a 1-800 number and being put on hold for 15 minutes, and they do it out of just a love for what they do and a commitment to the cause. That'll work for about three or four or five weeks, or seven or ten or twelve months. But year in and year out you just can't continue that pace.
And so nurses will resign and move on, or a social worker will resign and move on, and we're finding it more and more difficult to replace them. Not because our salaries aren't competitive, it's because we don't have enough FTEs to really cover the workload, number one.
Dr. SAAG: I'm sorry, fulltime equivalents, positions, to have enough people there to cover the workload so they aren't overworked. And then when people look into the job to say do I want to do that? They go whoa, I don't want to work that hard. I can go and do shift work and get paid the same. And that's why I'm concerned about the future of my clinic, because I don't know where the next wave of nurses, where the next wave of doctors are going to come from.
NORRIS: Are you experiencing a bit of burnout yourself?
Dr. SAAG: I don't think so. I ask myself that question.
NORRIS: You paused before you answered.
Dr. SAAG: I had to think about it. I don't think I am. I think as long as I can keep a staff together who are dedicated, I'll be fine. But there's one other issue that's come up in the last five years that adds to stress at the care-level provider level. And that is the population of patients with AIDS is changing. It's very different than what it was in 1988 to 1995. Current patients are more disenfranchised from society. They're generally more poor. A lot more of them now have mental illnesses that, a lot of which aren't treated. And there's a fair amount more substance-using patients who we're taking care of.
Those patients are more difficult to manage than the patients who, for example, we might have been taking care of in 1988 to '90. Today's patients have been beaten up by society, a lot of them. And I'm a guy in a white coat and even though down deep I care a lot and I want to help them, I'm still society who's treated them bad in some way. I'm the establishment. And it takes a while for them to gain trust, and sometimes they never do. And so the rewards of patient care are different and not nearly as exhilarating as they may have been 10 years ago, so that also wears on physician and staff burnout.
NORRIS: Doctor, you're in Washington right now, you're knocking on doors, you've been visiting with lawmakers. You can look people in the eye and you can tell if you're connecting with them, if you really have, if you've got them. And I'm wondering if you, if you felt that, if you really felt that they understood what you're up against. Or if, instead, you're dealing with what some call the Magic Johnson effect. That if lawmakers have in their mind the image of someone who's living with a manageable disease, who's very healthy, who looks, you know, like a perfect specimen in many ways. If they have that image, in their head right now instead of someone who is wasted, who is suffering, who's on death's door.
Dr. SAAG: It's extremely variable. There are certain policymakers who, within a microsecond, I can tell they get it. On the other end of the spectrum there are people who, for a lot of different reasons, haven't focused on HIV, mainly because they're doing something else. But I think the majority are, I think, intrigued by the fact that a physician in practice, who also happens to do research, is coming to see them. And I have to say it's also empowering for me for the staff, who know that I'm here and representing them. That's important.
NORRIS: You get choked up when you talk about your staff. They're really going through it right now.
Dr. SAAG:It's, it's tough. It's tough, tough, tough. They are, they are there every day just laying on their sword and...
NORRIS: Is there someone in particular whose story you're thinking about right now?
Dr. SAAG: It's everyone. We have nurses, we have social workers, nurse practitioners, physicians, everyone, every day is laying it out. And I just don't know if they're going to be able to hold on until we get some help.
NORRIS: Dr. Saag, thank you so much for coming in to talk to us.
Dr. SAAG: Thank you.
NORRIS: Dr. Michael Saag. He's Director of the University of Alabama-Birmingham Center for AIDS Research. Transcript provided by NPR, Copyright NPR.