Chapter Thirty-Three
Bill Meadows is seated on the sofa in the living room watching the six o’clock news on GNN. Rick Mann has just finished another of his reports from the Federal Courthouse in Phoenix, and anchorwoman Laura Begley reappears on the screen.
“Thanks, again, Rick. By this time, I shouldn't be shocked, I guess. But I still am. Dr. Keating, our chief health correspondent, is with us again tonight. Help me out, Dr. Keating. Tell me that what the plaintiffs are claiming about AZT after all these years just isn't so.”
The camera finds Keating at his usual desk.
“I wish I could, Laura. However, to the contrary, I have someone joining us from Minnesota to tell her own story.” He turns to a large TV screen in the studio, in the style of Nightline. “Cathy?…Mrs. Nyles, are you there?”
The head and shoulders of Cathy Nyles comes to life on Keating’s screen.
“Mrs. Nyles, tell us about your daughter, Lucy.”
“Well, Dr. Keating, we adopted Lucy from Romania when she was just a newborn baby and brought her to the United States when she was two months old.”
“Was she sick at that time?”
“No, she was a normal, very healthy baby.”
“But you took her to a doctor as soon as you got her back home in Minnesota?”
“Yes, like any mother would do with a newborn, for a routine post-natal checkup.”
“And what was the result?”
“Lucy was a perfectly healthy child – no infections, no abnormalities, no symptoms, no nothing.”
“But something was wrong?”
“Yes. Lucy was HIV-positive.”
“And what did your doctor prescribe?”
“First, he put her on a drug called Septra. And then later he prescribed AZT.”
“Did he do any tests on Lucy before he put her on AZT?”
“Yes, he did a T-cell count.”
“He tested her immune system?”
“Yes.”
“And what did he find?”
“He said that Lucy’s T-cell count was perfectly normal and her immune system was just fine.”
“And this, as you said, was right before she started taking AZT?”
“Yes, it was.”
“How often did Lucy get her AZT?”
“Four times a day, in syrup form.”
“Did the doctor see Lucy for a follow-up?”
“Yes, a month after she started taking the AZT. He said he saw quite an improvement.”
“You must have been pleased.”
“No, we weren’t pleased. We were puzzled, because there was nothing wrong with Lucy to begin with that needed improving. She had always been a happy, healthy baby. In fact, what we saw was exactly the opposite. Since she started taking the AZT, she was losing weight, she was falling behind the proper growth rate for children her age, and she was losing her appetite. By the time her first birthday rolled around, even the doctor had to admit she was not doing very well.”
“And did he say what he thought was causing her illness?”
“He blamed it on her HIV infection.”
“Were you convinced?”
“No. We started reading up on these drugs and their side effects, and reading other literature, and the symptoms other people were having on AZT sounded a lot like what was happening to Lucy.”
“What did you do?”
“We took Lucy to another doctor, a specialist at the University of Minnesota.”
“And what did he recommend?”
“She. This new doctor was a she, and she, too, blamed the HIV for Lucy’s symptoms and actually increased her dose of AZT.”
“Did that help Lucy?”
“Initially, yes, it did. But the improvement didn't last very long. Lucy soon stopped growing at all. And on the next visit the doctor did more tests and found out that Lucy's T cells had started to disappear – her immune system was failing.”
“And everyone assumed that it was again the HIV causing the immune failure?”
“Yes. But my husband and I were starting to get suspicious. And finally, shortly after Lucy's second birthday, she woke us up in the middle of the night screaming and tearfully clutching her legs. The muscle pains seemed to be unbearable. We tried everything, from massages to Tylenol. But the same thing kept happening night after night for a whole month, until we finally read that one of the side effects of AZT was the wasting away of muscle tissue.”
“What did you do?”
“We took her off AZT.”
“You stopped giving it to her altogether?”
“Yes, we did. It was scary, but it was our last hope.”
“And how did Lucy react?”
“She became a new child, almost overnight. She started sleeping better. Her muscle cramps went away. She started eating two and three times the amount of food, and started growing again.”
“How did your doctor respond to the news you had stopped giving Lucy AZT?”
“We were too afraid to tell her right away. So for the next two months, she kept remarking how much better Lucy was getting, and what a wonderful job the AZT was doing. When we finally told her the truth – that we had stopped the AZT – she was incensed, and even threatened to have the state take Lucy away and put her in a foster home.”
Sarah walks through the door to the garage into the Meadows’ kitchen, carrying a number of packages in her arms. Unwilling to tear himself away from Keating and Cathy Nyles, Bill just waves and mutters something like, “Hi, honey…how was your day?” only briefly turning around to look. His full attention then returns to the TV, where Keating is winding down the interview.
“According to public health officials at that time, babies with HIV were supposed to only survive about two years, even on AZT.”
Sarah doesn't answer Bill’s salutation. Instead, she drops the packages on the kitchen table and disappears down the hall to their bedroom. Bill senses something’s wrong and calls after her.
“Sweetheart? Is everything all right?”
He turns down the sound on the TV to see if Sarah answers, but not low enough to miss Cathy Nyles’ next line.
“Well, Dr. Keating, two years after we took her off AZT and those horrible leg cramps stopped, Lucy became a budding star in her local ballet school.”
When Sarah doesn’t answer, Bill knows he needs to find out what’s going on and what, if anything, he can do about it, but decides to finish watching the interview first. Laura has suddenly entered the picture with her own questions.
“Mrs. Nyles, it's Laura Begley here. Did Lucy’s HIV status change somehow?”
“No. She is still HIV-positive.”
“And the way you answered that question, I have to conclude that today, almost 14 years after you stopped giving her AZT, Lucy is still alive?”
“Yes, Laura. See for yourself....”
Cathy Nyles turns and looks off camera to one side. In a few seconds Lucy Nyles, a very healthy-looking and beautiful 16-year-old girl, appears on the screen with her.
“Laura, Dr. Keating, I'd like to introduce you to Lucy. And it's her 16th birthday today!”
Keating and Laura chime in together, “Happy Birthday, Lucy!”
Keating could not imagine a more powerful or moving ending. “Thank you, Mrs. Nyles, and you, too, Lucy, for sharing your story with us.”
He turns back toward the studio camera. “There you have it, Laura.”
But Cathy Nyles’ voice is still heard off camera before the feed is cut, sounding very sad.
“Dr. Keating, is it true that they're giving AZT to thousands of little children in Africa these days?”
Bill pushes the mute button on the remote and gets up from the sofa. He goes into the kitchen and pours two glasses of wine, and then walks with them down the hall. He finds Sarah in their bedroom, partially undressed, taking her makeup off at the sink.
“My god, I've just been watching all this stuff from the trial….” He sets one glass of wine down
on the sink next to Sarah and then sits down on the edge of the bed and takes a sip from his own glass. “Looks to me like it's a pretty iron-clad case. Imagine having a drug company found guilty of killing 300,000 people. How do you think it's going to affect...”
Sarah starts sobbing, catching Bill completely off guard.
“Sarah, what's wrong? What did I say?”
Sarah can’t stop crying and doesn’t answer. Bill tries again. “Did I say something to upset you?”
Her crying intensifies, but still no sign of what’s wrong.
“Sarah, you have to talk to me.... Sarah, I've never seen you like this.... Sarah, my mind is going nuts over here. I'm making up all kinds of things.... I must have really hurt you somehow... or maybe you got fired today...or maybe you've been having an affair and you just saw him and broke it off…or maybe you're going to tell me you don't want to break it off, you want a divorce instead....”
Sarah finally turns and goes over to Bill and gives him a big hug while shaking her head No to all of those possibilities. But she still can’t talk through the wave of tears. Bill finally shuts up and just holds her. He knows better. She’ll talk when she can.
Finally she’s able to whisper, “Just hold me, Bill, please, just for a minute, and then I'll talk.”
Bill puts down his wine on the bedside table and pulls her down on the bed with him, cuddling her. A full five minutes goes by before Sarah is able to pull herself together enough to start explaining.
“I was 23 years old, Greg was 20.”
“Greg? Oh, your brother.”
Sarah nods.
“He looked up to me all his life. I was his protector, his guardian angel. I was the one who smoothed things out with Dad about his homosexuality. I was the one who stepped in when the ribbing got really bad in high school. I was the one he turned to for advice and support.”
Sarah starts crying uncontrollably all over again. Bill waits another few minutes in silence. When he thinks she might be ready to continue, he offers his own two cents, trying to make her feel better.
“Yes, I know. You're that way with me, too – a pillar of strength, with always just the right thing to say.”
Unfortunately, that makes things worse for Sarah, who now has to try to talk through the sobs.
“But I didn't say the right thing to Greg – not at the most important time.”
Bill has no idea what Sarah’s talking about. But he doesn’t press her. Instead he decides to let her get it out however she can and whenever she can.
“He had friends that were warning him....”
Another minute goes by.
“His doctor couldn't convince him so they left that up to me....”
Oh, my god. Bill can finally see what’s coming.
“Greg was HIV-positive, wasn't he?”
Sarah nods and cries some more.
“But he wasn't sick, you said. He didn't have AIDS.”
Sarah shakes her head. “No, he had no symptoms...not until he started taking AZT.”
Oh, my god. Bill realizes he has to help Sarah speak the unspeakable.
“It was you who talked him into taking the AZT....”
With that, Sarah curls up in a ball on the bed and wails in a way that Bill had never heard.
“Sarah, you cannot blame yourself for his death.”
“I was the one he listened to,” still sobbing. “He didn't want to take it...it was me who insisted…it was me who made him take it...and now I can see that it was the AZT that killed him...who else is there to blame?”
Bill gathers her in his arms once again and holds her even tighter.
“Sarah, you didn't know…. No one knew…. You did, you said, what you thought was right…. You wanted only the best for Greg, I know that, and so did he, I'm sure.... You didn't kill him.... He died, apparently like a lot of others, from a really crazy situation. He died from a drug that was supposed to save his life. That's what you thought you were doing – saving his life, not taking it....”
“But there were others who knew better at that time…. The information obviously was available.... I should have known…. if I had just done my homework better…. I should have known…. of all people, I should have known….” This brings an even bigger flood of tears.
“But, Sarah, ultimately it was Greg's decision. He could have done that same homework. He could have stood up to you, no matter what you were suggesting, and say 'No, sis, I'm not taking that drug, and here's why.’ It wasn't solely your responsibility.”
Sarah is beginning to get angry now as well.
“But it wasn’t his decision; it was mine in the end. And at least I should have told him that there were some questions about AZT!” She starts screaming as loud as she can. “ALL I DID WAS FEED HIM THE SAME BULLSHIT THAT WAS BEING FED TO ME!”
Bill wasn’t sure which was worse, her rage or her tears.
“You've always been a very trusting person, Sarah. We're just now finding out how powerful the drug companies are in this country, and how the government can lie and get away with it – in a lot of areas. Sarah, Greg's death was not your fault. You have to...”
Sarah looks toward the ceiling, and with a gut-wrenching wail, “Oh, god, Greg, I'm so sorry.... I'm so sorry....”
Bill knew there was nothing more he could say, nothing else to do except hold her close as she wept, until she finally fell asleep hours later.