Extended Interview: Arlene Bardeguez and James Oleske
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SUSAN DENTZER: Let’s start by talking about the history of this disease, AIDS, and specifically your history, treating some of the earlier cases, especially in your case, Dr. Oleske, and pediatric AIDS in your case, Dr. Bardaguez, of pregnant women who were affected with HIV. Take me back first of all, Dr. Oleske, to the first cases you remember being involved in.
DR. OLESKE: Well, I guess the first case was ’78. I didn’t realize it at the time that this little girl with very unusual symptoms was going to be the first case I would see. We saved some blood so that when the AIDS test became available in ’85, we were able to go back and say oh, my goodness, this little girl had HIV…
After that case, there was a series of kids that I kept seeing that had overwhelming infections and dying of unusual pneumonias, and I wasn’t sure what was going on.
[It took us three more years] before we could convince people in the CDC (Centers for Disease Control) and publish our first groups of patients. By then we knew that women and children were sort of infected and affected, and terribly impacted by this disease, but people could almost not want to believe it. It was easier to believe that gay men and I.V. drug users got AIDS, but not other people. And when it started infecting children and women, then it got a little maybe close to home…
[B]y 1987 … we decided that we had to do something about preventing children from getting infected, and Arlene, myself, other doctors here … we sat down and we said we want to write a protocol that prevents the transmission from the mother to the baby. And that was revolutionary.
We didn’t think it was revolutionary. We didn’t think it was controversial. But it was. Arlene and I and the other people who wrote that protocol had a hard time. We had to almost hide sometimes from the activist group that felt we were killing women and children, and exposing infants to horrible drugs with no data.
But the data we had was that babies died if they got this infection and — well, [Dr. Bardaguez] you can tell your part.
DR. BARDAGUEZ: It was a little bit different. I came to this country in 1991 … and it was in the middle of Brooklyn. So I always remember it was the second year, they called me to hear this lecture on the gay men disease CD-4 counts, and my whole theme was like I need to do deliveries and write discharge notes. Why are they calling me for this, because I don’t take care of the population?
But needless to say, about six months later, we ended up having a woman that actually had the oral thrush, the wasting, etc., and who eventually died and was pregnant, and I was really impressed because it was … my residency … and [she] was one of the first reports in women that were pregnant having HIV infection…
[M]y mentor of the fellowship [in high risk obstetrics] was actually testing some other woman that had risk factors, which was a recommendation at that point. But we ended up having two patients that didn’t have any risk factor other than heterosexual transmission. One of them just came up with this cough and was treated several times, and ended up dying with full … pneumonia. And then when we tracked back the history, the only thing that she had was a prior husband who was an I.V. drug user.
So I got very soon sensitized that this is affecting women, not necessarily I.V. drug users. But [I] never really planned to follow that career because it was sort of a dead end. I mean, there was no hope at that point…
SUSAN DENTZER: Let’s explain what the 076 trial [that demonstrated that AZT decreases mother-to-child HIV transmission] was all about.
DR. OLESKE: [W]e were charged with setting up the trials nationwide, and one of those first trials, one of the early trials was called P-076 which was to give AZT, which was the only drug we had available at the time, to pregnant women during pregnancy, during the birth process, and to the babies for six weeks. And lo and behold, when we did that, we saw instead of the 30 percent of infants being infected and sick and dying of AIDS, it went down to 8 percent. So that was huge. Now it’s gone down to less than 2 percent, so that clearly that strategy was effective…
So we were just doing some things that — people made special things out of HIV. It was always a special disease. It was in the wrong population, that people didn’t want to work with it, or it was a unique disease that required special attention to things like informed consent.
Don’t get me wrong, I’m very much in favor of informed consent, but to the point where it almost tied our hands to take care of women and children. And it was always an exceptional disease that way.
DR. BARDAGUEZ: And also I think that the fear of the unknown. It was clearly the first time that we did a massive trial in pregnant women using drugs. By and large we always tell patients don’t take anything, including aspirin, when you’re pregnant, and now we’re telling them you have to take this medication, you have to take it five times a day at that time. So they really have to be very committed to it.
And the other thing that people were skeptical was we say well, this woman has to come in labor, and we have to start an I.V. infusion which means you have to get the medication from the pharmacy, etc. So it was almost a test of the system that can we actually get all that done on a timely fashion. And when they actually look at the results of 076 nationwide, the majority of the women got all the three parts altogether.
SUSAN DENTZER: Dr. Oleske, can you evoke for me some of the stories of individual babies and children you were treating in that time?
DR. OLESKE: You know, I remember — this actually is a picture of one of the first babies, and the children we first saw that were sick, had bad skin and died very frequently, and it was a very frightening era. The PCP pneumonia was bad, but they also got bacterial infections, viral infections, almost everything that was now being described in adults were also occurring in children. And later on again we saw that there were some older kids that were surviving longer.
I’ll have to say that just as this was one of the earlier cases, now if I was to show you a picture of my patients, they’re mostly older children, adolescents, and are doing much better with treatments, and are surviving for longer periods of time. And I think that’s been very encouraging to me, that even before we had all the anti-retroviral drugs, we knew that if we could support families and work on nutrition and all those things, we made the disease a little bit more bearable. We were able to be there for families.
And then as the drugs came down the pike, we had a fight, remember. We would fight because they only wanted to try it in adults first, and we wanted these drugs for our kids. And then AZT, and then DDI, and then the big breakthrough for all of us was obviously not until the ’90s, when in 1997 when the protease inhibitors came out, and there we really started seeing — oh, my goodness, our kids are going to live not just through grammar school.
I mean, we used to watch them die before they were four. And then I got to see them go to grammar school. And then I said, well, they’ll never graduate from high school. They graduated from high school, went to college, and about six months ago one of my patients came up to me while I was making rounds and said, “I’ve got some good news for you, Dr. Oleske,” and I said, “What?” And she says, “I got into medical school.”
When we start having our infected from birth kids go to medical school and become doctors and commit their lives to helping patients, it’s come full cycle. I never in my wildest dreams, Arlene, ever thought I would see a child born with HIV/AIDS doing that. And very proud, very humbled by it, too.
Patients suffered so much in the early days with this disease. Kids died really horrible, painful deaths…
Don’t let anybody tell you that AIDS is not a bad disease. When we go to meetings now, it’s interesting, the young people — and I’m not that old, but the new doctors that are taking care of AIDS patients, and the new patients, for that matter, they don’t have any memory of what a horrible disease this is.
I have doctors get up and giving lectures saying well, the toxicities of the drugs are such that we should delay treatment, and blah-blah-blah-blah-blah. I’m saying to myself, they never went to the funerals I went to. I love these drugs.
Yes, they may cause fat distribution. They have toxicities that we have to work on. But patients are living, and that’s a joy. And I think that there has been now almost a complacency where people said well, I take the drugs, I’m okay…
SUSAN DENTZER: It is thought that much of the transmission that does take place takes place around the time of delivery. Why?
DR. BARDAGUEZ: I wish I knew that. It is really more of an epidemiological finding. We know that about 5 percent, or in some groups 7 percent, of the cases happen in utero, so it means anytime during the pregnancy. But the majority of them are around the time of labor, and we know that there is some exchange between the mother and the infant blood around the time of birth, and very close to the time of birth. But nobody had been able to prove what exactly happened … Hopefully, we will know one day, but in the meantime at least we have ways to prevent it.
SUSAN DENTZER: Let’s take a patient, Mary. Here’s a woman who has survived HIV to date. She wanted to get pregnant. She was willing to face the risks that she could transmit it to her fetus or her child. You’re a physician being asked to help her become pregnant. How did you feel? How did you walk through those risks, that ethical quandary of do I assist this patient in becoming pregnant?
DR. BARDAGUEZ: What I know is that if they want to get pregnant, they will do it, and they will do it on their own with probably even unsafe method, because they will end up having a sexual relationship with somebody that is not infected and end up taking the chance of infecting their partner, or getting the chance of reinfecting themselves.
So what I have seen over the years working with Jim is that we used to have about 10 to 15 percent of the patients coming back with a second and third pregnancy, so it was happening. And particularly the woman have a new relationship, the younger they were, the more likely they were to come back.
So when Mary came up to me as a sort of pre-conceptional counseling, it is a challenge because you can’t promise that they’re going to have that 2 percent or 1 percent transmission rate. But at least we knew enough about the medications. For example, she was on some medications that … we wouldn’t use in pregnancy. So we knew that we could switch the medication.
Some of my partners that are doing reproductive endocrine were willing to manage her case in terms of getting insemination done. So not only will it help … get her pregnant, but also help the partner to remain negative as they have been for many years…
But I know that is a very challenging subject for many people. Many people still feel like women that are HIV infected shouldn’t get pregnant. But that’s not the reality in which we live, and it’s not the reality of how much we have conquered the disease.
So I think that at some point we’ve got to take this as a chronic illness and deal with it.
SUSAN DENTZER: Dr. Julie Gerberding, the head of the CDC, said earlier this year that every birth of an infant born with HIV contracted through maternal to child transmission represents a public health failure. Do you agree?
DR. BARDAGUEZ: I agree, but I think it’s not only in terms of HIV, I think it’s in terms of a good pregnancy outcome anyway. I mean, in this country we still have among minorities up to 14 percent [with] no prenatal care. So they could deliver an infant with HIV infection, they could deliver prematurely. So the cost to the health care and to our nation is enormous. And I think that until we can get to the level that we can offer care for everybody no matter what the circumstances financially are, and until we can get the hard to reach populations, then we won’t be able to defeat HIV or any other communicable illness, or even pre-term birth.
DR. OLESKE: It’s not only, though, just a failure of the public health system. It’s a failure of our personal systems, of how we treat and talk with our children. And so I am, like Arlene, agreeable that this is a tragic public health failure. And it’s by the way, very cost inefficient.
Every child who is infected with HIV lifetime cost is hundreds of thousands of dollars, and prevention is pennies. So yes, it is a public health failure. But I think we all have to take some responsibilities, whatever sector we are in. That’s not just a public health sector, although that has a major role.
SUSAN DENTZER: What is likely to be done to [Mary’s] infant [once it is born, since you know that the mother is HIV positive]?
DR. OLESKE: Well, again, let’s hope and pray that Mary’s infant is not infected, and if that’s true, then we do very little for the baby. Because we still don’t understand this disease completely though, Mary’s baby will be watched closely … for the first 12 to 18 months. And by four months of age, using the tests that we have now available to us, we’ll probably be able to tell Mary mostly the good news except for that 1 percent. But usually by four months, that the baby is, we think, not infected, or unfortunately, we think the baby is infected.
We sort of tread water — if we don’t think the baby is infected, then we just see the baby periodically and do that serology test, the old fashioned AIDS test, at somewhere around 12 to 18 months, and if that’s negative, and the baby is well, we sort of say you don’t need to see us anymore. Just go to your regular pediatrician and do your thing.
SUSAN DENTZER: So the guidelines would not call for the baby receiving any drugs — AZT, anything like that?
DR. OLESKE: As soon as we know the baby is infected, yes. In other words, say at three months we do a [test] and it’s positive and then we do a viraload and we see that the newborn, three month old, has very high virus, we would treat that baby with three drugs. We wouldn’t wait until they’re a year old. We only wait now for the kids who aren’t infected just to be absolutely sure…
SUSAN DENTZER: So Mary’s baby is born, what is the first test Mary’s baby gets?
DR. OLESKE: Before the baby is 12 hours old, we’ll send blood off looking for the virus in the baby’s blood. That test is about 30 percent sensitive. In other words, it could be negative and it still doesn’t mean the baby is not infected. And if it’s positive, obviously, then we’re really worried about the baby.
At two weeks of age, we’ll repeat that test. Again, depending whether it’s positive or negative, repeating it usually about three months, and then a final time at four months. Based on that data, we can say the baby pretty much is infected or not infected.
If the baby is infected, we treat it, and it needs to be followed, and we hope that that’s one of the babies that goes to medical school. If it is not infected, we still follow, though, for a year.
So it’s tough on parents. It’s not easy, but it’s a lot easier than it used to be.