Are You Positive?
ARE YOU POSITIVE?
A Novel by
Stephen Davis
This book is a work of fiction. Any resemblance to actual events or persons, living or dead, is entirely coincidental.
Copyright 2008, 2010 by L & G Productions, LLC
Chapter One
February, 2012
On November 1, 2011, the Arizona Tribune ran an article in their Sunday Feature section telling the story of Sarah Meadows, a health writer for the paper who lost her brother to AIDS in 1990. Sarah had been covering the AIDS trial in Phoenix, which had taken on a special meaning for her personally.
PHOENIX, AZ – The heart of her story is not unique. In fact, it is shared by hundreds of thousands of men and women who lost a loved one to AIDS in the last thirty years.
Sarah Meadows, born Sarah Noyes in Greenwich, Connecticut, 1967, was accustomed to the finer things in life. Her father was a well-known doctor, prominent in Republican politics both statewide and nationally. Her mother was a graduate of Wellesley College and had blue blood coursing through her veins. Sarah lacked for nothing, from comfort and money to the finest education and friends that money could buy.
It was a perfect life, an American dream come true; that is, until her senior year in high school, when her 15-year-old brother Greg announced that he was gay.
“My dream suddenly turned into a nightmare,” Sarah recalls. “My parents simply couldn’t deal with it. Most of my friends deserted me, like I had done something wrong. But worse than that, everyone abandoned Greg, as if he had leprosy.”
Sarah was the only one who stood by her little brother, gently persuading her parents over the next year that homosexuality was not a disease or a curse, and easing him back into the family. She became his guardian, his mentor, his best friend.
When Sarah graduated and left home to attend Amherst College for a degree in Journalism, she made Greg promise to stay in Greenwich and finish his last two years of high school. Sarah would drive home every other weekend to visit Greg and support him. It meant that Sarah had virtually no social life for her entire freshman and much of her sophomore years.
“That was okay with me,” Sarah admits. “I kind of slacked off in high school a little, didn’t apply myself as I should have, and it was good to focus on my studies and on Greg and forget about sororities and boyfriends for a while. Besides, Greg would have done the same thing for me if the tables had been turned. There was no way I could just leave him hanging.”
It was during Greg’s senior year when the devastating news surfaced. It was a routine physical for life insurance his parents wanted to take out on him before he left for college, a simple blood test that normally means nothing.
“I remember when Greg called me to tell me he was HIV-positive. I was on a date, but ten minutes later I was driving south, hoping to get home before our parents found out.” Sarah’s voice gives only a hint of the desperation she felt at the time.
None of the rest of the family tested positive for HIV. Just Greg. He had three homosexual lovers, but they too all turned out to be HIV-negative.
“This was early 1988, and we weren’t exactly sure what to do. Like an awful lot of people, we believed what we were being told by the ‘experts’ – that HIV caused AIDS, and that AIDS was always fatal – so we had no other choice but to accept the fact that Greg would be dead in two or three years unless the HIV could be stopped.”
They took Greg to their family doctor. Then they took him to an AIDS specialist in New York City, and finally to the Mayo Clinic in Rochester. The story was the same everywhere.
“They all told Greg to start taking AZT, the drug that had been approved just the year before to treat AIDS.” Sarah winces as she remembers. “They said it would kill the HIV and prevent him from getting AIDS, or at a minimum prolong his life. Since there was no contrary information being widely publicized, we had no reason to doubt this advice. It turns out that Greg was part of the first group of HIV-positives who had no symptoms of AIDS but were prescribed AZT anyway, despite assurances from the drug company to the FDA approval committee that they wouldn’t do that. But we didn’t know that!”
There were two problems, however. Greg hated taking pills. He always had. It had been a battle to try to get him to take vitamins when he was younger, and finally the family had given up. Apparently it wasn’t some philosophical stand against drugs as much as a physical abhorrence to swallowing a pill. Or perhaps it was completely psychological. At any rate, he would choke violently anytime he tried.
The second problem was that Greg was in perfect health, and it was hard for him to believe he needed medication. Hard for anyone to believe, for that matter. Though not big into competitive team sports, Greg loved cycling and wanted to ride in Connecticut’s annual 100-mile bkm/Steelcase Bike Tour to help raise money to fight MS that June.
“I would say that in March of 1988, at eighteen years of age, Greg was in top physical condition. Strong, muscular, toned, and aerobically fit,” Sarah offers. “He could easily ride his bike for 5 or 6 hours straight and not show any signs of weakness or exhaustion.”
But the doctors were unanimous. It was just a matter of time before his HIV brought on the symptoms of AIDS, and Greg needed to take AZT if he had any chance of surviving.
“I got a call from my mother at Amherst. She was hysterical and at her wit’s end. Greg was refusing to take his AZT and no one had been able to convince him otherwise.” Sarah hesitates for a moment, trying to hold back the emotion that was building. “I told Mother that I would drive down that weekend and have a talk with Greg, and that he would listen to me and do what I told him.”
By Sunday night they had a compromise. Greg would ride in the MS Bike Tour drug-free, and then start taking the AZT when it was over. It was the best Sarah could do, and it wasn’t easy.
“I had to remind Greg who it was that stood by him the last few years through all the trouble, and basically called in all the favors he owed me. I won’t say that I blackmailed him into taking AZT, but I pulled out all the stops and put on all the pressure I could to get his commitment. After all, at the time I thought it was the only way I could keep my brother alive, and I figured he was just too young or too stubborn or too much in denial to realize the seriousness of the situation.” Sarah bows her head for a minute, seemingly torn between the grief and anger. “I never gave any credence to the idea that Greg’s own intuition was telling him not to take the AZT.”
Greg left that August to attend the San Francisco Art Institute, to follow his passion and his dream of being a world-famous sculptor. He and Sarah would talk frequently on the phone, and Sarah even visited Greg during Spring Break of her junior year.
“He didn’t look as good as I remembered him,” she recalls. “I just thought he was a little run down, maybe partying too hard, enjoying his new-found freedom from the confines of Connecticut. After all, he was finally surrounded with people who understood and loved him, and I would have expected him to revel in these new friendships.”
But it wasn’t just the late nights or the lovers. At the end of his first year at the Art Institute, Greg was too sick to continue. He returned to his family in Greenwich and went to bed. Never a whiner, Greg began to complain daily about the headaches and muscle aches and nausea. The doctors, of course, said that his HIV had caught up with him and he was now in full-blown AIDS.
“My senior year at Amherst is a blur: Monday through Thursday in classes, then drive home and be with Greg on the weekends. He just got worse and worse. He never had Kaposi’s Sarcoma or anything like that, but he eventually developed PCP – opportunistic pneumonia.” Sarah’s eyes began to water and her voice started to crack. “There was nothing else we could do except watch him die.”
Which he did on April 4, 1990. He was twenty years old. Sarah couldn’t go back to school after the funeral and withdrew from that semester. She stayed away for a year and ended up transferring to Stanford University in Palo Alto, California where she not only finished her Journalism degree but also got a B.S. in Alternative Health after meeting her future husband at Palmer West Chiropractic College.
“I wanted to be close to San Francisco, where Greg had felt at home, and I immersed myself in my studies to try to get over his death. I also offered my help at a local AIDS clinic as often as I could. But it wasn’t easy, and it took a long time for me to feel even somewhat normal again.” Sarah looked out the window as she said, “I loved my brother very much…and he was so talented…”
Did she blame herself for his death?
“I blamed a lot of people, including myself. I blamed his lovers for giving him AIDS, even though I knew they didn’t. I blamed the doctors who couldn’t cure him. I blamed God for creating a world where bad things happen to good people. I mean, it just wasn’t fair, to Greg, to me, or to our family. My parents have never really recovered, to this day.”
The anger began to make its way to the surface.
“Of course I was angry. I was incensed back then, almost paralyzed with the rage from time to time. But I have to say that it was nothing compared to what I have felt listening to the testimony in the AIDS trial. However angry I was in 1990 pales in comparison.”
The intensity of her voice, the energy of her words told a story beyond description.
“I now have even more people to be angry at – Dr. Robert Gallo, for lying to us about HIV; the FDA for so carelessly approving AZT; Burroughs Wellcome for its greed and manipulation; and the entire medical community who turned out to be a bunch of mindless puppets. I mean, where were the doctors of this country, the very people who should have known better, or the ones who at least should have stood up in sufficient numbers and asked the right questions? But especially, where were the press and the media – my own peers – and our investigative journalists?”
She laughs through her tears at the irony of what comes out next. “Where was 60 Minutes when we really needed them? Is everyone so afraid these days of losing their jobs if they rock the boat, that someone like Robert Gallo can get away with killing hundreds of thousands of people because of incompetence, or pride, or just plain arrogance?”
Sarah blows her nose and wipes her eyes and sits back in her chair. She talks about knowing now that the right information had been there all along, even before Greg died, but how hard it was to get to it through the media blackout that prevailed.
Can she forgive them all?
“I’m working on it. There’s a New Age saying that people are doing the best they can with what they’ve got. Mostly I think that’s bullshit. You could use that to excuse Hitler if you wanted to – he was just doing the best he could with what he had. I don’t believe it. I mean, I can’t believe that the people we trust the most with our health – our government, the FDA, the drug companies, and especially our doctors – couldn’t do better than this for the last thirty years.”
Sarah bows her head and almost whispers.
“But the hardest person to forgive is myself.” She pauses. “It’s funny. There are a lot of people out there who are in my same position; they lost someone they loved dearly to AIDS, and many of them needlessly, and solely because they took a lethal drug at the urging of the people they counted on for help. I have no trouble forgiving any of them for what they did or the advice they gave. I’m even sure, in this case, they were doing the best they could with what they had. So why is it so hard to forgive myself the same way?”
Does she wish the AIDS trial had never happened?
“No, I’m glad the truth is finally coming out. Yes, it was really, really rough to live through it all again – really tough to realize the role I had played in Greg’s tragic and unnecessary death. But it would have been worse to keep all of this a secret. If nothing else, we – the American people – better wake up and smell the coffee. Enron and Tyco and HealthSouth and Adelphia and WorldCom and Rite Aid should be enough to prove that there are obviously criminals in high places who care more about money and power than human life, and we better start to question everything that comes our way from our government and from the so-called medical and pharmaceutical industries. And I do mean everything.”
What does Sarah intend to do now?
“My best answer is this: I want to redeem myself and my brother’s death. I don’t want Greg to have died in vain. But it’s not just about Greg. They’ve literally killed thousands of people – more than 400,000 HIV-positives in the U.S. alone in the last twenty years. It was murder. It was genocide. And now there’s proof! So I am dedicating my life and my energy to making sure nothing like this can ever happen again.”
Exactly what form will that take?
“I can’t answer that specifically. Most immediately, I want to help make sure the whole world knows what happened in the AIDS trial, and I’m in a pretty good position to do that at the moment, right where I am. After that, who knows? Maybe I’ll write a book about it some day.”