Diagnosing AIDS: A Pioneer Reflects

LYNN NEARY, host:

Twenty-five years ago Monday, the Centers for Disease Control and Prevention released its first report on a disease that would come to be called AIDS. There were many doctors involved in that first report. Some were recognized in print, others, like Dr. Wayne Shandera were not.

Dr. Shandera was the federal government's chief disease watcher in Los Angeles at the time and he was the first to alert the CDC that otherwise healthy men were contracting an unusual disease.

NPR's Brenda Wilson visited Dr. Shandera in Houston where he's still working with people who are HIV positive.

BRENDA WILSON reporting:

Perhaps there's something about the way the Texas sun beats down on Dr. Wayne Shandera's windshield as he cruises Houston's freeway. It reminds him of the summer of 1981 in Los Angeles. He had just been hired by the CDC as an epidemiologist.

Dr. WAYNE SHANDERA (Epidemiologist): I remember at one point that we found out that there had been an outbreak of meningitis that we didn't know about, that had occurred out in the Watts area, and we didn't hear about it until the reports filtered through. Isn't that unbelievable that in this country in 1980 or '81 there was an outbreak of meningitis that the central health department didn't know about?

WILSON: Today he's still driving down freeways in Houston. A small round man with an almost cherubic face with curls like wings on each side of his head, he appears to be in constant motion, moving between Baylor College of Medicine, where he trains residents and interns, and the HIV/AIDS clinic nearby on Thomas Street.

In 1981 he was coming out of a medical residency at Stanford, ill at ease and unsure of what he wanted to do. The civil conflict in Central America was growing with the U.S. role giving rise to political tensions here. Especially after four U.S. nuns were murdered in El Salvador, his thoughts turned towards religion - he's a Catholic - and a life of service working in public health in LA.

Dr. SHANDERA: I almost didn't move there and - but there was a tug of war psychologically within me about whether I should take that assignment and, you know, I'd go to mass at the old St. Anne's in Palo Alto and think while I was there I really should do that, that that was the right thing, that it was the kind of saying yes to life, but it was a very difficult yes to say, to affirm.

WILSON: About the time he moved to Los Angeles, an immunologist, Dr. Michael Gottlieb, whom he's gotten to know at Stanford, had also moved to the area to teach at UCLA.

Dr. MICHAEL GOTTLIEB (Immunologist): I think he had the ah-ha moment.

WILSON: Michael Gottlieb was the first to see young men with an unusual type of pneumonia and to make the connection that lead to the discovery of AIDS.

Dr. SHANDERA: Mike called me from UCLA that he made an association of pneumocystis all in homosexual men, but they didn't have any, they had very few lymphocytes, that in some fashion they were imunosuppressed. When I thought of pneumocystis I thought of cancer patients and it had been described especially in children with lymphocystic leukemia, there had been reports from starvation victims after World War II in Western Europe, but it was not something you saw very often.

WILSON: Three of the men were patients of Dr. Gottlieb, there was another he knew about, and serendipitously on the day that Shandera met with Gottlieb a fifth case landed on Shandera's desk.

Dr. SHANDERA: And I went out and interviewed that patient and it was a gay man who was there with his partner who was receiving therapy for, as I recall, lymphoma and he'd had PCP as well, so there were five cases of a very unusual infection. We now think of it as a fungus, at the time we called it a parasite, but this was unheard of that you would have PCP in otherwise healthy men, whatever their practices.

WILSON: Shandera says Gottlieb was hearing about other mysterious infections in gay men in New York City and San Francisco and wanted to alert the public.

He knows why Gottlieb called him. He was the CDC's man in LA and could get the word out fast.

Dr. SHANDERA: The only way to really do this, avoiding the lengthy process of peer review, is to go with a public health publication, and one of the best around is the CDC's publication of Morbidity and Mortality Weekly Reports.

WILSON: On June 5, the following lines appeared in the CDC Weekly Report.

Unidentified Man: The occurrence of pneumocystis in these five previously healthy individuals without a clinically apparent underlying immunodeficiency is unusual. The fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or disease acquired through sexual contact and pneumocystis pneumonia in this population.

Dr. SHANDERA: I know that the Centers for Disease Control because it was infecting gay men put it on the second page of MMWR.

WILSON: A month after the CDC report came out, 41 cases of the unusual pneumonia and of a rare skin cancer, Kaposi Sarcoma, were identified in young gay men in New York and California.

Shandera remembers seeing them in the intensive care unit at the University of Southern California Hospital.

Dr. SHANDERA: It was so distinctive, it was so different, and these patient reminded me so much of the cancer patients that were imunosuppressed and they were, they looked thin and wasted and sallow and they looked as if they were within weeks or months of death. Perhaps not even months, more like weeks.

WILSON: A month later Shandera left Los Angeles and returned to the Atlanta headquarters of the CDC, where he spent the next two years completing epidemiology training.

As an infectious disease specialist he was to deal with the AIDS epidemic as a professor, a public health officer, and a physician. Sometimes the work became too painful, despite his religious faith.

Dr. SHANDERA: I think that I kept me going and allowed me to do a lot of the work. There were times when I just couldn't do it. It was quite draining for a number of years. The work was intensive, and I think that's the case, that a lot of things you just have to step back and do something else for a period of time.

WILSON: It would be years before the first treatments for AIDS were developed. For a long time, there was little that doctors could do, except to treat the illnesses that in most cases, led to the deaths of people with AIDS. In the U.S., more than a million people have died.

Dr. Wayne Shandera believes that he has an obligation to serve the poor, so he devotes two days to working with indigent patients at an HIV clinic in Houston. Overnight, Shandera saw changes in patients after the news AIDS drug cocktails became available in the mid-1990s. When Shandera first saw Caroline, who visited the clinic recently with her husband Gus, she already had AIDS.

CAROLINE (AIDS Patient): Swallowing and raw throat. I mean thrush in my mouth. Anything I ate or drink, it irritated me going down until you really didn't want to eat.

GUS (Caroline's Husband): She's been through a whole lot. She got - I mean, she was really down to where she was just skin and bones and...

CAROLINE: I was dying with AIDS, but now it's, I'm living with AIDS.

WILSON: Well, I think you're a real success story. I mean, you know...

CAROLINE: Oh, Yeah. Most definitely.

Dr. SHANDERA: You presented on death's door back in 1996.

CAROLINE: Yes, I actually talked to people who - when I first came here, I was a walking zombie. I say I have one thing I accredit a lot of it to you, being an excellent doctor and following your regimen and taking the medication. It helps.

WILSON: Carol and Gus agreed to talk to us, as long as we did not use their last names. They'd been married three years when she discovered that she was HIV-positive. Though Shandera is a Catholic, he says there's the ideal world and there's the real world. If people can't abstain, then they should be told they can protect themselves.

Dr. SHANDERA: You're exercising precautions of any particulars? Do you...

GUS: We do not practice with a contraceptive.

Dr. SHANDERA: You do not.

GUS: No, we do not.

Dr. SHANDERA: Are you concerned about coming down with the disease yourself?

GUS: I am HIV-positive.

WILSON: Shandera seems stunned. Gus is not his patient, and Carol hadn't told him this story.

GUS: I've been HIV-positive for three years after her, but what I'm saying is that if I would have changed any way, form, shape, of my feelings or intentions toward her, it would have killed her at that time, and I couldn't. You know? That was my wife.

CAROLINE: We did use it. We did for a while, and he quit.

GUS: Because you were trying to push me away.

CAROLINE: Yes.

GUS: That was your choice.

CAROLINE: I was trying to spare you.

GUS: You couldn't spare me. You can't spare me what God's given me. God gave me you, so that's everything that came with you. So that was my choice. You couldn't spare me that.

Dr. SHANDERA: And the entrance is like a tent.

WILSON: So you don't know yet what you're going to play today?

Dr. SHANDERA: Oh, I was going to play a couple of Bach preludes.

WILSON: Each Sunday, Shandera plays the organ during mass at the University of St. Thomas's chapel.

(Soundbite of organ music)

WILSON: Gus's declaration of love in the face of AIDS keeps coming back to Shandera. It is this understanding of love, Shandera says, that has helped him reconcile his faith in God with the misery that AIDS has caused over the last 25 years. As horrible as life sometimes is, Shandera says, you make a choice, and you accept what comes with it.

Dr. SHANDERA: Oh, I think that the greater gift of God is our free will. I mean, he gives us the choice to do as we please, and that's a marvelous gift. And I think that if you don't allow this free will, then you change the world so radically that love is perhaps not possible, that maybe you prevent certain evil incidents, but you also don't allow the great good of the world.

WILSON: In his own way, Dr. Wayne Shandera has tried to bring into this world, through his work, the love he has found through his faith. Brenda Wilson, NPR News.

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