Frank A. is a heterosexual HIV-Positive in his mid-thirties. Born and raised in Canada, he recalls being a little “chubby” when he was small, but grew into a handsome, athletic young man. His biggest problem in childhood was not his parents. It was the disease he was born with: hemophilia.
Hemophilia is inherited from the mother, passed on in the X-chromosome. A male has one X-chromosome and one Y-chromosome, while a female has two X-chromosomes. If one of the female’s X-chromosomes is defective for the gene responsible for blood clotting, she herself will probably not have hemophilia. However, since a male receives his single X-chromosome from his mother, the son of a healthy female silently carrying the deficient gene will have a 50% chance of inheriting that gene from her, and with it the disease.
This was the case with Frank. At birth, there was some hemoraging in Frank’s ears, so they did a blood test and discovered his disease.
The Y-chromosome in men has no gene for the production of factor VIII or IX, which is responsible for blood clotting. Therefore, if a man receives an X-chromosome from his mother that is defective for these factors, he will have no genes at all to produce factor VIII or IX. And without factor VIII or IX, the blood cannot clot and therefore a hemophiliac can bleed to death with even a very small cut.
As a result, hemophiliacs have to be injected with factor VIII or IX on a regular basis – every three or four days – for their entire lives. It started for Frank as soon as he was born. For the first ten years of his life, he either went to a hospital to get his injections, or his mother did it for him at home. When Frank was old enough to learn how to safely stick a needle into his veins, he started injecting himself, as he will do for the rest of his life.
“I had some self-esteem problems when I was young because of my hemophilia, and I really wanted to look and feel as good as I could,” Frank admitted. “To me it was a manageable disease, and I didn’t have much trouble learning to cope with it. I guess you could say it is somewhat like diabetes, but of course the treatment is much more invasive.”
If a hemophiliac doesn’t get his factor VIII injection on time, symptoms can appear in addition to the danger of bleeding to death. Hemoraging can occur in joints, such as an ankle or a knee, and cause pain.
“If you are in good health and you follow your injection schedule, you should be okay. But factor VIII doesn’t last; it gets flushed out of the system in about three days. So if you don’t happen to be near your refrigerator, or miss your injection schedule for some reason, you can suffer tremendous pain. Some part of you could swell, or you could get a cut and not stop bleeding. You have to be in constant vigilance and stay close to your factor source.”
Virtually none of Frank’s classmates or playmates or friends ever knew Frank was a hemophiliac. There was no reason to tell them. Frank would simply take his injections privately twice a week and then go about a normal life. But inside, it affected Frank emotionally.
“In terms of relating to other people, it’s always there, hidden beneath the surface. It’s frustrating. As a kid, I always wished that they would develop something better than the treatment I was taking so that every three days I wouldn’t have to have an injection. I felt that life was tough enough without this. It seemed to me like the treatment was very primitive, that there should be some kind of genetic solution rather sticking a needle in my arm. So I kept waiting for a treatment breakthrough that never came. But it isn’t the worst of illnesses, and it’s something you learn to deal with over time. Since it doesn’t show on the outside, no one would know I have it.”
In fact, Frank didn’t let the hemophilia interfere with his life. With his athletic body build, he played sports like any other young man. But he always felt he could never reach his full potential. “I had the complete package, except for my disease. Everything else was pretty good. If my hemophilia could have been removed from the picture, I could have gotten much more of what I wanted out of life. Even so, I made sure I kept physically fit. Taking injections all the time was simply my personal demon – a huge inconvenience.”
But Frank’s hemophilia was soon to be the least of his worries. In the early 1980’s, they started telling him at the hospital that a new disease called AIDS was transmitted in the blood, and that hemophiliacs could be at risk.
“I was terrified, of course. But at the same time, I was also very skeptical. There were so many contradictions in what they were saying. My mom kept telling me not to be concerned, that I was perfectly healthy and had nothing to worry about. So while I tried not to let it get to me, I still was constantly on guard; my antenna was always up trying to figure out what was really going on. I was also the kind of person who would challenge anything a doctor told me anyway.”
Frank’s parents are both highly educated and well-read, and he apparently inherited their questioning nature along with the hemophilia. “They are people of logic rather than religion; unless they have proof of something, they aren’t ready to believe it. And if there was something they didn’t agree with, they’d advise me accordingly. That was the type of home environment I came from, and where I got the confidence to think on my own.”
One day, after a routine check-up, something happened. They called Frank and his parents back to the hospital to tell him the results of his latest blood tests. As Frank walked in, he noticed that they had apparently emptied out everybody from the ward. “I thought, ‘Oh shit, this must be serious.’”
They put Frank and his parents into separate rooms. There was a doctor and a nurse in the room with Frank, “probably to calm me down. When the doctor told me I had tested Positive, I looked at him and asked, ‘What am I testing Positive for?’ The doctor answered, ‘For HIV Antibodies.’ I said, ‘That makes no sense. Aren’t antibodies supposed to be a good thing? Doesn’t it mean you have immunity to something?’ He replied in an angry and anxious tone, ‘No, no. You’re wrong. You’re at risk for a terrible disease that will kill you!’”
“I freaked and went screaming around the hospital ward, not so much from the fear of getting sick or dying as much as the stigma that is attached to being labeled HIV-Positive – how you’re treated from then on. You literally become like a social leper. In that moment, I was aware that my life would never be the same. From that day on, I knew I would be victimized, because ultimately, it doesn’t matter what I believe as much as what the people around me believe. In a sense, I had lost my freedom, all because of a lie.”
In the other room, his parents were being told the same story, and advised to ‘comfort your son’. Then they were brought into the room with Frank, where the doctor was spending a lot of time testing Frank’s lymph nodes, trying to find some symptom of the HIV infection.
“But I had no symptoms whatsoever, and I was never sick. And I wasn’t even sure what antibodies were being measured in this test; they could be antibodies to anything. ‘Who knows?’ I asked the doctor. He just shook his head. Looking back, I was on the right track, even as a seventeen-year-old!”
“My mom asked the doctor the same questions I did. She also thought that having the antibodies to a virus meant that you were immune from a specific disease. But these doctors and nurses acted more like priests and nuns, coming from a religious faith and fervor more than from a scientific basis. They were just more or less following orders and acting irrationally. They weren’t thinking. They weren’t looking at the person in front of them to see if they were healthy. They were simply programmed like robots, convinced that HIV was a deadly killer virus.”
Frank felt a mixture of fear, anger, bewilderment, frustration and disbelief. But more than anything, he felt that the doctor was wrong. “It just didn’t make any sense. This is a disease where cells are supposed to be dying, but retroviruses like HIV don’t kill cells. Besides, hemophiliacs like me, who essentially inject other peoples’ blood all the time, have a higher chance of having antibodies to lots of things that can create a false positive reaction to the HIV blood test. Everything about it was absurd. I didn’t have all the scientific data at that time, but I just knew inside that something was wrong; and yet the psychological impact was intense, because they tell you that you’re going to die.”
Frank’s diagnosis immediately began to change his life.
“It affected everything. You’re scarred. You’re not normal after that. I felt like an outcast. I started living in a world that was more like a prison than anything else. You must remember that the propaganda being popularized by the media was so strong that people really believed being HIV-Positive was a death sentence, and that HIV was contageous. It didn’t matter what evidence I presented, or how healthy I was. So I just decided I was going to have to find out how to survive.”
Part of that process was discovering how to relate to other people, and to women in particular. As it turned out, Frank never had any long-term relationships. There were three or four women that he felt at the time could eventually become more than just dates, but he chose not to let it happen.
“I was terrified. I feared rejection if I told them about my HIV diagnosis, and I didn’t think I could go any deeper in a relationship without saying something. So I simply stopped the relationship when it got to that point. I figured that I’d never be able to convince my partner about the truth, so I’d wait.”
Wait for what? In 1990, Frank was certain that the truth about AIDS and HIV would be made public very soon, and then he could get back to a normal life. His father agreed. “My dad told me that in three or four years this would all be over. ‘The truth always wins out in the end, and this fraud will be exposed,’ he said. ‘You’re just not going to have to worry about this in four years.’ So I decided that if I just waited, and not get deeply involved with anyone, my problem would be solved. But as the years passed, I realized, ‘Oh my god, this looks like it’s going to go on for a long time!’ Then I didn’t know what to do.”
So Frank focused on his studies, got his degree, went to graduate school, and made it look on the outside like nothing was wrong, just like with his hemophilia. But inside he felt unfulfilled, and began to withdraw. He got very depressed; and when the public HIV/AIDS lies continued, he felt very disillusioned.
Between his work and his government’s HIV-Positive compensation plan, Frank had plenty of money, and very little expenses since he still lived at home with his parents. He decided to start enjoying himself and his life. In the next few years, Frank traveled and saw the world. It was enough to ease his depression, and he stopped waiting and hoping for the truth to emerge about AIDS and HIV. Traveling was his solution to the prison he felt so strongly – his escape tunnel, if you will.
“It really helped to get away from the terror I lived under every day, from the constant pressure from the doctors and the hospital to take the HIV medications. But more than anything, it changed the focus of my existence away from HIV. Looking back, traveling was my coping mechanism. Rather than telling myself that it will all be over soon, I gradually began to live with the reality instead.”
“But I still missed the experience of deep intimacy with a woman. I miss being able to love, deeply, and be loved in return, to have no secrets and no walls between us. Like a lot of people, my Positive diagnosis took away any chance I had of intimate love. I still think about the couple of relationships I had that could have amounted to something, where the interest was very strong on both sides, but which I terminated out of the blue without giving them an explanation. The fear of rejection was so great that I just couldn’t risk telling them why. I had this picture that if I took that risk, I could go from looking like an ideal partner on the outside to being a leper in an instant. It was too emotionally devestating for me to consider.”
“One could argue that maybe I should have taken the chance and told one of these women the truth. But I think most people, if they really understood the big picture, would also run from this kind of situation. In my mind, I took the high road, considering that I really didn’t have much of a choice, and found a way to live and survive. The media has portayed HIV-Positives as something horrible and contagious, and killers. I feel like it’s me against the world – a complete nightmare from hell. It’s like having a big red X painted on your forehead. No person should have to live with a burden like that, carrying a whole lot of extra weight around on your shoulders every single day. It wears you down mentally, emotionally, psychologically, physically, in every possible way. It’s hard to escape that.”
When Frank read Inventing the AIDS Virus, by Dr. Peter Duesberg, it was a pivotal point in his life and seemed to ease his mind, “because everything made sense to me after that. The things that I had long suspected were finally explained to me in a very clear and scientific way – how the early mistakes were made, the fraud in Dr. Gallo’s lab, and the totally unscientific pronoucement of HIV as the cause of AIDS without any proof or corraboration. I felt some inner peace knowing that there were very prominent researchers who were proving what I had always believed.”
It was the first time Frank felt any support from outside his family, because other than his parents, Frank didn’t have anyone to talk to about this. He has kept it to himself, with no close friends who know his secret, and no support group.
“What I’ve seen over the years is that most other HIV-Positives don’t question the doctor’s orders. Most of them just took the drugs they were handed, and they died. I truly believe that arguing with my doctor has saved my life. I’m also really grateful to my parents, because I know a lot of patients whose parents insisted their children take the HIV drugs right away.”
Despite the intense and constant pressure from his doctors and nurses, Frank never took any of the HIV medications. “They also put a lot of pressure on my mom to put me on the drugs, which she always refused to do. One week while I was at the University, I got sick, and immediately they called my mom saying, ‘That’s a sign. You need to get your son to take the medications.’ But my mom kept resisting them, pointing out that I was not manifesting any signs or symptoms of AIDS.”
“It was even crazy how they described you have to take these drugs. You get up at 3 or 4 in the morning, take the battery of drugs, and then try to make it through the horrible side effect for the next few hours, like the diarrhea and the nausea. Then, of course, comes the cell death, and hair loss, and anemia. You don’t have to be a genius to know that there’s something wrong with the whole picture. So I really had no problem saying No to the drugs, or to the doctor’s orders. But I still get the same mantra every time I go to the hospital. Even the last time, after twenty years of health, the doctors and the nurses were adamant that I had to take the drugs or I was going to die.”
To this day, Frank and his parents remain convinced about not taking the HIV medications, but it’s clear that the emotional trauma of his HIV-Positive diagnosis continues to haunt him. Frank readily admits that his greatest regret is the potential he felt he had in this life that could never be realized. He talks about having been given such a wonderful mind and body, and being unable to use them to their fullest extent.
“So much has been taken away from me, and so unfairly. And all based on a lie. I lay some of the blame right in the lap of the government. I believe they knew, at a certain point, about the medical fraud surrounding HIV, and from that point on they covered it up. Now it may be too late. I mean, what are they going to do? Are they finally going to openly admit that people didn’t die from the HIV virus, but that they died of toxic poisoning from taking AZT or other drugs? The evidence is there; I can see it clearly. So I’ve come to the conclusion that they must know it, too.”
“I realize that Big Pharma’s goal is to make money, and that comes first; and apparently it doesn’t matter if the HIV test kits are fraudulent. The government goes right ahead and supports the murder of those found to be HIV-Positive using these tests. The last time I went to the hospital I saw patients being poisoned with these HIV drugs. I see people being murdered with my own eyes. I remember some of their names, and their faces. It’s a very traumatic experience, especially when I know that all of these deaths were preventable. So nothing has changed since 1984. To me that’s unconscionable.”
“What’s the difference between this and the NAZI concentration camps? Back then the people were taken into death chambers and given gas. Today we take them to the hospitals and give them lethal drugs. It’s so hard for me to believe it’s going on right now, in 2006! At times I can’t even sleep at night, it’s so shocking.”
“The doctors and hospitals go about their business as usual of giving lethal drugs to these patients, and then blame everything on this killer virus called HIV, while the people who don’t take these highly toxic drugs are perfectly healthy. There’s no recognition of reality, no correction in their thinking. It’s almost as if all the evidence is simply ignored. And apprarently there’s no one to stop them. Now they have to save face and continue this charade, because if the public found out, they’d demand to know how they could let this go on for so many years while innocent people die from these drugs. I mean, enough is enough. What I don’t know for sure is when it stopped being a fraud and started being a cover-up.”
It’s now almost twenty years since Frank was diagnosed HIV-Positive. How does he feel today?
“Physically, I feel great. Of course, I still have to take my factor VIII injections twice a week, but that’s never been a real problem. On the other hand, there are times I say that I hate this life, that it’s not the life I want, that I can’t keep living like this, that I don’t want to keep living like this. But the will to live as a human being is very strong, so I have to believe things will get better. Or at least I cling to that hope.”
“If you want to make someone really crazy, tell them they did something they didn’t actually do, and watch how it effects them. Well, I’ve been told there’s something wrong with me, and there’s nothing I can do about it. At the hospital they look at me like I’m some kind of lunatic, because most people just follow orders. In fact, the hospital environment is a lot more insane than the rest of the world. There have been opportunities when I have tried to explain my situation to other people – totally in a hypothetical way, of course, because I never let anyone know it’s me that I’m talking about – and they seem to understand. Just ask someone to explain why people are not dying like flies from sex if the lethal virus HIV is sexually transmitted? Why is AIDS confined to certain risk groups when HIV infection is supposedly found equally throughout the population? People know there’s something not right about this, but they don’t have the scientific background to question the so-called authorities. Besides, they are brainwashed every day with the media, who are always sure to say, ‘HIV – the virus that causes AIDS.’”
“The people I’m most disappointed with are the health care professionals, who seem not to question anything. I believe that the general public is a lot smarter than the medical community gives us credit for. When I look around, I see signs of the AIDS industry coming apart. The typical person on the street, even after so much brainwashing from the media, seems to have an open mind, and they know something is wrong instinctively. Maybe they can’t put their finger on it right now, but I truly believe that in the next five years – with more blogs and information available on the Internet – there’s going to be a domino effect that will eventually bring down this house of cards.”
“There’s still some part of me that’s waiting for the day when it will be announced that HIV has been a fraud from the very beginning; and I’m to the point that if it doesn’t happen in the next five years, I think I’ll go mad. I can only cope for so long, and sometimes I lay awake at night, imagining that I will have to continue fighting with my doctors and nurses for five more years, and wondering whether I’ll make it.”
“The one positive thing that gives me hope is that just in the last few years, people are asking more questions, and I think the Internet has something to do with that. Especially young people, because something doesn’t add up for them. They know that what they’ve been told doesn’t make any sense. And that kind of questioning is much more pronounced that ten years ago, from what I can see.”
What about Frank’s hopes and dreams for the future?
“I have the same dreams and aspirations as any other human being – a full life and someone to share it with. But above all, I long for freedom from the stigma, without having to feel I have anything to apologize for. I want my dignity restored. I feel as if part of me was taken away with this diagnosis – my dignity as a human being. From the very beginning I’ve had to admit to something that isn’t true. That’s what’s been eating me alive, and I want my freedom back, both as an individual and as a valued member of society. What’s that old saying, ‘and the truth shall set you free?’ Well, I want the truth to be told, that’s all.”