In Japan, former health ministry officials Akihito Matsumura and Takeshi Abe were arrested. In France, Jean-Pierre Allain from the Central Blood Transfusion Service served two years; Michel Garretta and Jacques Roux were sentenced to four. Fifteen years after the fact, people have been hauled off to jail.

The American haemophiliac community, approximately 8000- 10,000 of whom have tested HIV positive, and which has lost hundreds of its members to AIDS-defining illnesses, is incensed at what they believe has been done to them by an uncaring blood plasma industry. They accuse the pharmaceutical giants of making millions off them (a severe haemophiliac can spend upwards of US$100,000 per year for clotting factor concentrates), while ignoring the welfare of their "million-dollar customers." In the late’70s, developing a process to clean blood products of dangerous viruses was put on the back burner, deemed unprofitable. Even when safer imported products were available, government agencies protected American companies from competition by blocking their approval. After heat-treated factor was approved, old stocks of non-heat-treated factor were sold off to haemophiliacs, many of whom claim they became HIV infected.

Similar scenarios played out in virtually every industrialized country, where "blood scandals" hit the news. Government officials such as Allain and Garretta met their downfall and the pharmaceutical companies that distributed Factor VIII, the blood component that most haemophiliacs lack, have been the subject of  massive lawsuits. In some countries, haemophiliacs have been compensated; in other countries, they have gotten nothing.

In Japan, litigation of nearly seven years was finally concluded in March 1996, with haemophiliacs diagnosed HIV-positivebeing compensated around US$415,000 plus US$1,350 per month. The heads of Japan's Green Cross Company knelt in shame before Japanese haemophiliacs and gave them a formal apology. Kawada Ruhei, an haemophiliac diagnosed HIV-positive, doubts that they really feel sorry: "My friends died one after the other...No, they were killed one after the other. I can never forgive this kind of thing. This crime...could be the worst crime in history."

In America, haemophiliacs diagnosed HIV-positive found themselves continuously stymied by the judicial system from obtaining any legal recourse for their suffering. Over a decade of activism and all-out legal warfare has finally led to a concession which is seen as too little, too late. Four companies are involved: Bayer, Baxter International Inc., Rhone-Poulenc Rorer Inc., and Alpha Therapeutic Corp., a U.S. division of Green Cross. Though not legally compelled to do so, the drug companies have offered a settlement to put an end to years of dissention: US$100,000 per person to HIV-diagnosed haemophiliacs, spouses and partners, and the families of those who have already died. A bitter community has resigned itself to this pittance, believing it to be the best deal possible. U.S. District Judge John F. Grady, charged with overseeing the settlement proceedings, commented that to suggest this amount was adequate would be "absurd on its face."

Hemophilia creates extreme hardships for those afflicted with it. One of the most expensive diseases to treat, it can leave one dealing with as many as 150 bleeding episodes a year, with pain, muscle damage, joint problems and arthritis requiring joint replacement surgery, and continual trips to doctors and clinics. Liver problems are common and many haemophiliacs have died of liver failure. The plasma industry claims that the blood supply is now clean; haemophiliacs have their doubts. The possibility of hepatitis C and other diseases is a constant worry.

The haemophiliac community has been emotionally and financially ground down by a decade of efforts to obtain justice. Allain’s two-year sentence for the misdemeanor of "deception over the quality of products sold," seems like a slap on the wrist for the crime of the century. The day he got out on parole, the gendarmes were waiting to arrest him again, this time on the criminal charge of "poisoning," which carries a sentence of up to 30 years. But what if he has rotted in jail for a crime he not only didn’t commit, but couldn’t have committed?

In a paper published in 1996 in the genetics journal Genetica, an Australian research team asserts that haemophiliacs are not, in fact, infected with HIV, and that substantial scientific proof exists that it was impossible for Factor VIII to ever have been contami-nated with HIV, even before the days of heat treating.

Heading up the team is Eleni Papadopulos-Eleopulos, a medical physicist from the Royal Perth Hospital in Perth, Western Australia. Warm, vivacious, and charming, Eleopulos made me feel like an old friend as she explained her theories to me.

In the early ’80s, she had proposed that cellular oxidation affects immune function and can cause disease. When a new pattern of immune deficiency was perceived, she noted that all people diagnosed with AIDS had in common their exposure to strong oxidative agents (blood products in haemophiliacs being one example): "From the very beginning, the data did not prove that AIDS was a transmittable disease. On the other hand, I knew about Factor VIII, that it’s a very strong oxidizing agent - that’s how it produces its effect. And I also knew that it wasn’t a pure  agent. I could see how it could be sufficient to produce the immune deficiency and diseases with which the haemophiliac patients were suffering." These  days even a lay person appreciates this principle on some level: our cupboards are full of anti-oxidants such as vitamins C and E.

Her ideas later attracted the attention of Valendar Turner, an emergency medicine physician, also of the Royal Perth Hospital. Turner was interested because of the possible risk to himself and his staff in the extremely busy, overcrowded ER. Two of his colleagues in the ER had been needle-stuck with blood tested HIV-positive, and one of them developed testicular cancer 18 months later. Turner wondered if the six weeks of AZT he took played a part in that - after all, drugs used to treat cancer can cause cancer.

Other members of the team are David Causer, another medical physicist at the Royal Perth, and Prof. John Papadimitriou of the University of Western Australia. Papadimitriou is considered to be one of Australia's foremost experts on electron microscopy.

Eleopulos explained that four conditions were found in haemophiliacs which led to the mistaken assumption that they had contracted AIDS from blood products contaminated with HIV: 1) they were testing positive for antibodies believed to indicate HIV, 2) they had decreased T4 cell counts, 3) they had a clinical syndrome resembling the syndrome seen in gay men, and 4) some scientists claimed to have isolated HIV from their blood. "However," she adds, "these phenomena in haemophiliacs can quite readily be explained without the need for HIV or any other infectious agent. This is quite clear from our study of the scientific literature."

Clotting factor is extracted from plasma, the cell-free, fluid part of the blood. To prove that HIV could have somehow found its way into haemophiliacs, it would first be necessary to demonstrate that 1) donated plasma contains HIV, 2) these HIV particles can survive the process of extracting Factor VIII from the plasma, and 3) HIV can be found in the finished product. So far, this has not been done.

No one has actually seen HIV in blood plasma. Its presence is inferred from the results of indirect and nonspecific techniques applied to virus cultures. AIDS expert Jay Levy of the University of California was able to find what he believed were HIV particles in the plasma of only 30% of the AIDS patients he studied, and then, it was at a low concentration - 10 infectious particles per millilitre (ml). Levy concedes that this isn't enough to establish an infection.

It is widely accepted that the surface of HIV must be studded with knobs containing the protein gp120, which is crucial to the virus's ability to infect cells. But experts such as Hans Gelderblom of the Koch Institute in Berlin (Gelderblom has conducted most of the electron micrography studies of HIV) say that the virus loses it knobs when it buds from the cell. This means that cell-free virus is incapable of infecting other cells. Since plasma does not contain cells, if HIV were present, it would not be inside a cell and thus it would not be capable of causing an infection.

In addition, there is the dilution factor. Factor concentrate is made from the blood of thousands of donors pooled together. Statistically, only one or two of these donors might be infected, so by the time their blood is merged with that of uninfected donors, only a few copies of HIV, or even none whatsoever, would be present per ml.

What is the fate of those few particles as the plasma is processed into Factor VIII? "The particles," states Turner, "simply don’t have the stamina to survive the biological hammering they receive during this process," which involves time delays, freezing, thawing, and drying. Each of these steps alone has been shown to dramatically reduce the number of HIVs inferred per ml. In the case of plasma, where only small amounts of HIV might be inferred to begin with, these combined steps would reduce its presence to virtually nil. Neither has HIV ever been found in the resultant Factor VIII by using electronic microscopy.

Factor VIII has long been supplied as a freeze-dried power which may sit on the shelf for weeks or even months awaiting use. Here's what the Centers for Disease Control (CDC) says happens when you dry HIV: "In order to obtain data on the survival of HIV, laboratory studies have required the use of artificially high concentrations of laboratory grown virus...the amount of virus studied is not found in human specimens or anywhere in nature... Although these unnatural concentrations of HIV can be kept alive under precisely controlled and limited laboratory conditions, CDC studies have shown that drying of even these high concentrations of HIV reduces the number of infectious viruses by 90-99% within several hours. Since the HIV concentrations used in laboratory studies are much higher than those actually found in blood or other body specimens, drying of HIV-infected blood or other body fluids reduces the theoretical risk of environmental transmission to that which has been observed - essentially zero."

Eleopulos emphasizes the importance of this: "If ever a gold standard was needed for the antibody tests, it is in patients with hemophilia. With plasma donations being received from between 2000 to 30,000 individuals, each unit of factor VIII contains myriads of foreign substances, and haemophiliacs are exposed to these week after week, year after year. Each antibody generated from these foreign antigens represents yet another opportunity for a cross-reaction [a false-positive] with proteins present in HIV test kits."

Many HIV researchers have described experiments in which they have "isolated" HIV. Retrovirus isolation requires growing the virus in a tissue culture and then separating it from everything else that is not HIV. Eleopulos states, "This is clearly not the case. What passes for virus isolation is the detection of three phenomena: reverse transcriptase activity, a p24 protein, and rarely, looking for virus particles under the electron microscope. None of these phenomena is specific to HIV. Surprising as it might sound, particles indistinguishable from  HIV in form and appearance are everywhere. They have been found in nerve cells, breast tumors, leukemic plasma, and the placentas of over a dozen different species, including humans and monkeys."

Reverse transcriptase (RT) is believed to be the enzyme that enables the copying of RNA into DNA and gives rise to the name retroviruses. Reverse transcription was first explained as a feature of a retrovirus and is by some scientists considered unique to retroviruses. However, RT can be found in a variety of tissues, including viruses and cells such as lymphocytes, spermatozoa, and placenta, and, most important, the hepatitis B virus (HBV). Since almost all haemophiliacs have been infected with the hepatitis B virus (HBV), one cannot use detection of RT activity in a haemophiliac’s culture to prove HIV isolation.

As for the p24 protein, it is common to all retroviruses, not just HIV. The appearance of p24 in other circumstances, including individuals who are HIV negative, or following transfusion of blood which is free of HIV, in many organ transplant recipients who for unknown reasons often have markedly and persistently raised p24 levels, in 50% of people with chronic viral hepatitis, and even in dogs (!) is not compatible with the idea that p24 always comes from HIV.

My attempts at obtaining the haemophiliac community’s response to the Genetica paper were met with anger and hostility. Activist Michael Davon told me the paper was "a waste of ink and time, as is any discussion with the authors." Kevin Kelley called it a "lie," and told me I was being "hoodwinked by Dr. Eleopulos." My efforts at getting a haemophiliac to actually read the paper and comment on it met with little success. Most dismissed it out of hand: they had seen a lot of their HIV-diagnosed friends die -which meant the Australians just couldn't be right.

Most haemophiliacs I contacted adamantly asserted that "HIV-positive haemophiliacs get AIDS. HIV-negative ones don’t." This view seems to be supported by a study done by a team of Oxford haemophiliac researchers headed by Sarah Darby (Nature, 7 Sept ‘95). Analyzing mortality data among British haemophiliacs from 1977 to 1992, they documented a marked climb in mortality that exclusively affected HIV-positive subjects. This paper is offered as conclusive proof that HIV causes AIDS and that this debate should be put to rest.

Eleopulos replies: "No one is denying that haemophiliacs who are HIV-positive are the ones who get AIDS. But what does being HIV-positive mean? ‘HIV antibodies,’ wherever they come from, are a marker for the propensity to develop certain diseases, just as the ESR (erythrocyte sedimentation rate) is a ‘something wrong’ test, that ox heart protein (cardiolipin) antibodies are predictive of syphilis, and that antibodies to horse blood predict glandular fever. Obviously, a person with glandular fever isn’t infected with horse blood, nor does horse blood cause glandular fever. With AIDS, it’s wise to remember that you’re not always infected with what your antibodies tell you."

There are many studies that implicate clotting factor itself as the cause of AIDS in haemophiliacs. UC Berkeley virologist Peter Duesberg has shown that the more clotting factor, the more AIDS. But some haemophiliacs claim to have developed AIDS after one dose of factor. Turner addresses this concern: "The fact that some people get the AIDS diseases with little clotting factor doesn’t mean much. Some people who are perfectly healthy develop bacterial septicemias and die within 24 hours. There are multiple reasons, mostly unknown, for individual suscepti-bility. Does anyone know why some people get some diseases?"

Aren’t we simply replacing the missing Factor VIII in haemophiliacs - bringing them up to speed with the rest of the population -and why should that cause illness?

The problem is, Factor VIII up until recently wasn't available in a pure form. The only way you could get it was mixed in with lots of foreign proteins. To get enough Factor VIII, haemophiliacs ended up taking a concentrated blood product made up of as little as 1% Factor VIII and as much as 99% foreign proteins.

It is these contaminants that are the problem, according to Dr. Duesberg, writing in Genetica. In this companion piece to that of Eleopulos, it was postulated that it was the foreign proteins which contaminate Factor VIII that are responsible for immune suppression in haemophiliacs. He cited a number of researchers who had reached the same conclusion.

Duesberg’s paper points out that haemophiliacs treated with pure FVIII either did not develop immune deficiency or even recovered lost immunity. Noting this phenomenon, the Schwartz group (Lancet 1994) believed that pure FVIII might "inhibit HIV" and even suggested using it to treat AIDS patients in other risk groups!

The development of factor concentrate in the ’60s was an incredible, life-saving breakthrough for haemophiliacs. Previously, haemophiliacs would live a very limited life, often being bed-ridden, and would usually die in childhood from internal bleeding. Now, they can live a long time but still have health risks the general population doesn’t have.

It is understandably very difficult for them to accept the idea that the substance they rely on for their very life may be the cause of many of their problems. If claims of HIV had never come along, the fact remains the blood products were not clean and still might not be. Haemophiliacs have described themselves as being infected with "every microbe in the book." Stephen Keale told me, "I have tested positive for every virus that they can test for...I figure people with hemophilia my age (28) and older have every virus that there is." Could at least some of these "viral infections" be nothing more than multiple cross-reacting antibodies misleading us?

If HIV were the cause of AIDS-defining illnesses in haemophiliacs, then logically, haemophiliac AIDS must be contagious. It has been claimed that the wives of haemophiliacs have developed AIDS. The CDC reported that between 1985 and 1992, 131 (around 16 per year) of the estimated 5000 haemophiliacs’ wives were diagnosed with AIDS diseases. However, Duesberg indicates that 1.6% of all people over age 20 die each year, so, of all these wives, 80 would die naturally per year. Since AIDS-defining diseases of the wives of haemophiliacs are typically age-related opportunistic infections, mostly pneumonia (and never Kaposi’s sarcoma, dementia, lymphoma, or wasting syndrome), how are these 16 AIDS cases per year to be distinguished from the 80 natural deaths that would occur in the same period?

Eleopulos disputes that any evidence exists that haemophil-iacs' wives become infected: "Where is it? Where is the proof? Maybe in the mid 1980s a few were found to be positive. Back then, all you needed was a p24 band on the Western Blot. But if you test ordinary people who donate blood, you’ll find a significant number of them have a p24 band. So, before 1987, these people were all considered to be infected with HIV. Now they wouldn't be. And if they had treatment...they could have become AIDS patients just by treating them with AZT."

Even so, it seems that there has been an explosion of AIDS since the advent of HIV on the scene. Don Paul Lucas told me, "I have been in the hemophilia community for 43 years. In the first 30 years this community didn’t experience 10% of the deaths that it has in the past 13."

Prior to the AIDS era, haemophiliacs were observed with candidiasis, pneumonia, t h r o m b o c y t o p e n i a , lymphopenia, lymphoma, pulmonary tuberculosis, and Pneumocystis carinii pneumonia, all AIDS indicator diseases. Eleni Eleopulos comments, "Nowadays we accept that haemophiliacs appear to have an increased incidence of these diseases, and irrespective of whether this is either more frequent reporting or a true increase, can we be certain it is due to HIV?"

In 1982, haemophiliac deaths from all causes increased 200-300%. This means that we don’t know with great accuracy how many haemophiliacs died and what they were dying from before reporting tightened up in 1982. There were few cases of PCP diagnosed in haemophiliacs before 1980 not because there weren't any, but because no one was aware of immune suppression in haemophiliacs, so no one was looking for it and the appropriate diagnostic tests weren't carried out.

During the AIDS era, PCP is now over-diagnosed. The CDC permits presumptive diagnoses of PCP, that is, definitive tissue diagnoses are not required in all situations. Other types of pneumonia can easily be mistaken for PCP without definitive diagnostic tests.

Not only that, but AIDS as a whole is over-diagnosed. The CDC examined 3001 death certificates listing AIDS as the cause of death, but only 85% met their own case definition! Turner told me that in 1992, the CDC found seven haemophiliacs who had been diagnosed as AIDS cases and discovered that none had a positive HIV antibody test, none had an AIDS indicator disease, and two had no symptoms whatsoever! However, all had low T4 cell counts.

Studies have shown that age is not correlated with AIDS risk in any group except haemophiliacs. But what is it that actually makes it more dangerous for haemophiliacs to simply get older? First, the more years of life, the more vials of factor concentrate. Not only that, but haemophiliac treatment often includes horribly dangerous drugs called steroids for various conditions such as low platelet counts and joint problems. One of the first cases of PCP reported in the medical literature was in a haemophiliac receiving steroids.

At the large teaching hospital where the team works, Eleopulos and her colleagues are regarded as somewhat of an embarrassment (the Royal Perth Hospital hosts a large, orthodox AIDS unit). Nevertheless, bubbling with irrepressible humor, Eleopulos expressed dismay at the response to her work: "We never get any requests to talk about our ideas; there’s no interest in providing any scientific answers to the questions we raise. I really gave up on expecting to convince any of the scientists. Ten years ago I sent to one of those Australian journals here a paper on Kaposi’s sarcoma, saying there were other more likely causes than a virus. And the review was so awful! They said ‘She has not got a clue.’ Now, everybody agrees that Kaposi’s sarcoma is not caused by HIV, even Gallo. But they forget who said it first."

Most HIV positives are now being treated with protease inhibitors. The FDA has expressed concern about the possibility that PIs are causing a drastic increase in the occurrence of bleeds in haemophil-iacs. Many reports have been posted on the Internet of personal experiences that confirm this. In view of the common occurrence of liver dysfunction and failure in haemophiliacs, the use of drugs that are as tough on the liver as PIs seems to be a horrible blunder. News is now creeping in of people "crashing" on protease inhibitors - they’re doing well until one day they suddenly just fall over dead. Yet, hundreds of haemophiliacs are compliantly dosing themselves with the HIV treatment du jour -the triple combo therapies that include AZT and similar drugs combined with protease inhibitors.

Haemophiliacs are the last people on earth who need to be exposed to the cruel toxicity of anti-HIV drugs, especially in light of the proof presented by Eleopulos that they aren't infected with HIV anyway! Yet, once a person has been diagnosed as HIV positive, they would probably drink Drano if PI guru David Ho, honored as Time magazine’s Man of the Year in 1996 told them it would "inhibit their HIV." Eleopulos is discouraged that no one listens to her: "But I don’t blame them. I mean, who are we? No one has ever heard of us. So who do they believe, us or the Man of the Year?"

There’s no question that haemophiliacs have suffered enough. It’s the agent of their suffering that needs to be reassessed, and therapies given that address the real problems: hemophilia itself and impure blood products. "I’m sorry," says Eleopulos, "I’m so sorry, that people are dying for nothing. And they’re really dying for nothing. The sooner they stop treating people for HIV, the better."