A boy opens a fridge and removes two small bottles. He takes a syringe, clean and new. He sits himself somewhere comfortable, clean and well lit: the kitchen table will do. He wears a woolen tank top because he is being filmed at some point in the early 1980s when woolen tank tops were normal, not retro. He inserts the needle into the bottle and draws up the liquid, and he mixes it with the other bottle, and he injects ten thousand people into his right arm, into the crook of his elbow. He looks at the camera, and he grins with joy.
Let blood sit. After a few hours, gravity will partition it: red blood cells below, then a narrow white layer—the buffy coat—that holds white blood cells and platelets. Above, there will be a liquid the color of straw. This is plasma, a liquid that makes up just over half the volume of blood. It carries fat globules, water, salts, and at least seven hundred proteins such as albumin, antibodies, and clotting factors.1 It looks like nothing much next to the insistent red of the blood below. It’s just yellow stuff. But it is worth a fortune.
Separated from a donation of whole blood, plasma becomes fresh frozen plasma (FFP) and is used in transfusions to bulk up volume in bleeding or trauma patients. This is usually collected by blood banks and called recovered plasma. But plasma can have an alternate future where it is not a human body part but a product. Plasma companies collect it from paid donors using aphaeresis machines, which spin whole blood, retain the plasma, and return the rest to the recipient. This is source plasma, and it is purified for its components such as immunoglobulins, which boost immune deficiencies, or albumin, the most common plasma protein, which can maintain blood volume and pressure. These components have come to be known as plasma protein therapeutics. A unit of FFP is cheap: the NHS sells one for under £30 ($42).2 A fraction of source plasma is not. The most popular, intravenous immunoglobulin (IVIG), often costs more than gold (the NHS buys it for about £35 [$49] a gram),3 and one plasma donation can reap medicines worth ten times what a donor is paid (usually about $30). Human and animal blood is the thirteenth most traded commodity in the world, worth $252 billion. Most of that is products derived from plasma, and most of it is coming from the United States, the largest exporter of plasma. In 2016, the category of “human and animal blood”—actually mostly blood fractions such as plasma products—earned the United States $19 billion, close to what it got from selling medium-size cars or soybeans.4 The chief of America’s Blood Centers, an association of blood banks, has called it the OPEC of plasma.5 Half of Europe’s plasma for medicinal products comes from American veins.6
The small boy is grinning because of what was in the bottle. It was plasma-derived clotting factor. Specifically, it was Factor VIII, the name of both a protein found in normal human plasma and a commercial product developed in the 1980s that was usually shortened to “factor.” He is in England but the boy has almost certainly just injected a product derived from American plasma sellers. It has revolutionized the lives of millions of hemophiliacs like him. It would also kill them.
When blood escapes the blood vessels, either inside or outside the body, it performs what is called with scientific poetry a clotting cascade. About twelve things need to happen for blood to clot, that seemingly easy procedure that is triggered when you nick your ankle shaving your leg, or cut your finger with a knife, or pick a scab. That thickening of the blood, quickly done, that seems so easy but is not. If any component of the cascade fails, blood will continue to flow. If the blood continues to flow, you are probably a hemophiliac. If a knock to your knee or elbow or head causes you to bleed internally, without stopping, then you are probably a hemophiliac.
One in five thousand boys is born with hemophilia A, says the US National Hemophilia Foundation. (A is the more common variety and means that blood lacks Factor VIII; there is also hemophilia B, due to a lack of Factor IX. The results are the same: you don’t clot properly.)7 The World Federation of Hemophilia suggests a rate of one in ten thousand.8 Take either figure: hemophiliacs are still rare enough that most people are unlikely to encounter one. A hundred years ago, they would have been rarer because they died young. Hemophiliacs are born with a genetic abnormality inherited from their mothers that prevents blood from clotting. It used to be accepted that women only carried and passed on the faulty gene responsible. But now we know that women can be bleeders: either mild hemophiliacs, with a chromosomal abnormality that means they lack necessary clotting factors; or with genetic abnormalities such as von Willebrand disease or Christmas disease, which cause clotting derangement. The true number of people with bleeding disorders—who have less than 40 percent of the clotting factor in their blood9—is unknown. Anyway, the figure is constantly changing, because for several years in the late 1970s and early 1980s, the factor that hemophiliacs were injecting came with HIV and hepatitis C in it. Hepatitis C, a blood-borne virus ten times as infectious as HIV, can be undetected for years and usually leads to cirrhosis and often cancer. A total of 4,689 hemophiliacs in the UK were infected with HIV and hepatitis C, of whom 2,883 have since died.10 That figure will be out of date by next week: because of the lag time, new cases are continually being diagnosed. A Westminster committee estimated that 32,718 people in the UK were infected with hepatitis C between 1970 and 1991 from contaminated blood products (including transfusions). Only 6,000 have been identified.11 Globally, 40,000 hemophiliacs have been infected with HIV from contaminated plasma products. No one yet knows how many got hepatitis C, but it is certainly hundreds of thousands.
Neil Weller, a hemophiliac from Oxfordshire, thinks he got off lightly. I met Neil through Facebook, which has become a hub for the rightly furious. The survivors, relatives, the grieving. In the UK alone there are campaigns named Contaminated Blood, Factor 8 Campaign, and Tainted Blood. Neil is cheery and chatty, his accent holding the rounded vowels of the west country that give a disconcerting warmth to statements such as: “I was eleven or twelve when I was told I didn’t have HIV.” But many of his friends did. Like most hemophiliacs, he spent much of his teenage years in and out of the hospital, dealing with bleeds. He remembers his fellow hemophiliacs there “and one by one they were told they had HIV and one by one they were going in another ward and they were dying.” When they died, the cause of death was given as pneumonia or something else. One friend, dead at thirty-two, left a two-year-old child. Another was a teenager. But Neil was fortunate, in his eyes: the contaminated plasma he had injected only gave him hepatitis C, a nasty chronic condition but not, as HIV was then, a certain killer. He walks with difficulty, but he is mobile, although he has had two knees replaced and his ankles are rotten. He has had twenty-two operations, including eighteen on his knees and ankles, and spent more than five hundred nights in the hospital. But he’s right: statistically, he is lucky.
Hemophilia is rotten. Hemophiliacs with no access to treatment usually die of bleeding to the brain or into the gut. This was always the case, no matter how much wealth and privilege they had: from Queen Victoria, the most famous transmitter of the faulty gene, hemophilia spread throughout the European royals, lovers of endemic intermarriage. The best-known royal hemophiliac, Tsarevich Alexei of Russia, would probably have died young had he not been shot first in a cellar in Ekaterinburg. Early death is the fate of hemophiliacs in most of the world, where treatment is expensive and rare. Dr. Mark Winter, a noted hemophilia expert, in 2017 recalled a recent visit to Pakistan where “they have got very nice hospitals, experienced doctors, good nurses, they are a nuclear power, but they have no [factor] concentrate.” Of the 250 children with severe hemophilia who attended the hemophilia center in Islamabad, he reported, only one lived beyond eighteen.12
Even with treatment, life for a hemophiliac was hard and frequently excruciating, but not in the way that most people think. It’s “that disease where if you cut yourself you bleed to death,” says Neil Weller, and I dare not tell him that that’s what I thought, before I began thinking better. Hemophiliacs bleed internally, frequently, and with violent pain. Justin Levesque is a severe hemophiliac who lives in Maine. He calls himself a “bleeder” and his license plate is “bruiser.” I asked him to describe the pain to me. This is an impossible request, as pain eludes description no matter how articulate you are. I try analogies. Is it like a broken leg? A burn? A stab wound? He first says, “The worst pain ever. Ever.” He tries again. “Your joint is an enclosed space, and then you’re trying to fill up a water balloon with as much water as you can but you can’t and it can’t pop either. It’s pressure and pain so you can’t think. The only thing I can relate it to is I had a kidney stone one time which was godawful, and it was pretty much on a par with that.” Other hemophiliacs say a bad bleed feels like a broken bone. We’re still in analogies and I can’t conceive of the pain until I see a severe hemophiliac walking: it is a twisted, unnatural movement, the legs stiffened into knock-kneed stilts. It looks like torment.
If a hemophiliac’s joint is knocked, blood vessels break. People with the more severe kind of hemophilia can also have spontaneous bleeds. Whatever the cause, there is then a “rush bleed,” because within twenty minutes, blood will have poured into the space surrounding a joint. Knees and ankles are most usually afflicted, but also fingers and elbows. The blood keeps flowing until there is no more space. The bones twist and move to accommodate the liquid. That is painful enough. Then the blood that shouldn’t be there presses on nerves, and that is agony. If this happens often, as it does with hemophiliacs, the affected joints deteriorate into arthritic ones. Rupert Miller, whose brother Julian was a severe hemophiliac, remembers his brother waking up all the family, screaming, night after night, in their farmhouse in Wales. All they could do was apply packs of frozen peas to his knees—the cold dulled the agony—and stay with him until the pain abated. The family freezer was filled with peas.
When Julian had a bad bleed, he sometimes went to the hospital. At that time, in the 1970s, the only treatment available was cryoprecipitate, a concentrated version of plasma with clotting factors. Hospitals were the safest place because cryo was difficult to prepare, requiring a freezer (then a rarity in British homes) and a complicated process of thawing and agitation. Julian was sometimes there for many weeks, many times a year. Once he missed two months of school. But his parents wanted him to be as normal as possible. Julian wanted to be as normal as possible and to attend the local school with his friends. He resisted going somewhere like Treloar College, a boarding school in Hampshire for disabled children, which had Gothic buildings, good care, and a dedicated hemophilia center.
In a BBC documentary, a former pupil named Ade Goodyear reminisced about life at Treloar.13 Being there didn’t fix your hemophilia, but if you felt the buzzing or tingling or heat that meant a bleed was coming, you could get treatment quickly and expertly. You never had to miss class again. Your schoolmates, unlike Goodyear’s at his previous school, were unlikely to beat you up just to see what that did to a hemophiliac. (When Goodyear’s previous headmaster introduced him by saying, “You must not hit this boy,” his fate was fixed.) At Treloar there were thirty-five hemophiliac boys who knew what it was like. You weren’t judged. Treloar was a haven.
For every hemophiliac in the developed world, everything changed when Factor VIII arrived. Easy to prepare and relatively easy to infuse, it could even be used prophylactically, to prevent a bleed coming on. It was, says Rupert Miller, “wow.” Factor VIII was a revolution and a liberation. Factor, in the words of a public service video of the time, “is something that will let a hemophiliac live and bleed like a normal person.” For the first time, says Justin Levesque, hemophiliacs could have privacy. “They were going from being public, limping, being in the hospital, being very seen with their disorder, into the private.”
Cryoprecipitate was expensive. But so was this new Factor. The trouble was that one unit of plasma contains only a tiny amount of clotting factors. To be powerful enough, the concentrate had to come from a pool of thousands of donors. The higher the pool, the cheaper the processing costs and the greater the profit margin. This was a consideration, because the process of fractionation to create the new wonder drug was not cheap. Already, as soon as the new factors arrived—there was also Factor IX, for hemophilia B—some doctors were dubious. They knew that the larger the pool of plasma donors in each dose of concentrate, the higher the risk of infection. It was mathematics. In 1983, the vice president of Armour, a large US fractionator, testified to government that people who supplied the plasma for concentrate had it collected forty to sixty times a year. At that rate, “and given the pool sizes in the United States, four infected persons could contaminate the entire world supply of Factor VIII concentrate.”14
But home therapy, as it became known, was powerfully attractive. Hemophiliacs understandably wanted it. Doctors began prescribing it for all sorts of bleeding problems, not just to diagnosed hemophiliacs. Ann Hume was a young expectant mother in Shetland in 1974. When we talk on the phone, I hear Norse in her r’s rolled like surf, and I picture the wild North Sea from my desk in a landlocked city. How silly and romantic. Ann’s story is neither. From a young age, she bled copiously and in alarming amounts, causing dentists difficulty: after a tooth extraction, she could bleed for weeks. Her condition has never been diagnosed, but she was definitely a bleeder. After an abortion—she was young and unmarried, and told it was wise—and then the birth of her first child, she was given cryoprecipitate, preventatively, so that she would not hemorrhage to death. That was fine. For the second child, in 1982, her hematologist said, “‘I’m going to use this new stuff, which is better, and it’s called Factor,’ and I thought Okay, that’s fine. I didn’t know anything about Factor VIII.”
Her daughter was born, she did not bleed too much, and mother and baby returned to their island. That’s when it began: the fatigue, and the joint pain, and the illness that would not get better. After about seven weeks, she felt so unwell, it was difficult to rise out of bed, and she was pushed out of it only by the fact that she had children to care for. (Her husband and her mother told her to snap out of it.) One morning she got up and blood clots “like liver” fell out of her body. Her husband was at work; she had a four-year-old son and a baby upstairs. “I asked my son if he would go and fetch the next-door neighbor and he said no, he was in his pajamas.” Ann stepped through her blood clots to reach the phone, the neighbor came, and she joined in the panic. The kitchen looked like a crime scene. (She later understood that it was a crime scene, given what she discovered.) Ann got to the island’s hospital in Lerwick eventually, and the hematologist in Aberdeen was telephoned. “She said, somebody give her a bottle of Factor VIII and fly her down here.”
* * *
Julian Miller sits on a chair in a TV studio. Its color scheme is 1980s beige but he is not. He wears a loud checked jacket, a pink shirt, and glasses that are the size that glasses were in the 1980s, so half his face is lenses. He has blond hair and eyes so blue, as serene and charming as his upper-class accent. He is probably the first hemophiliac to go on television and say he is HIV-positive.15
He thought he had been infected in the early 1980s. He was told after a routine blood test in 1984. His manner on TV is astonishingly calm. He smiles now and then, when he calls himself a “spontaneous mutation,” because he was the first hemophiliac in his family. He speaks of horrific things with the modulated serenity of priest or counselor. “In 1979,” he says, “it began to be fairly plain that there might be a problem with AIDS infection of American blood products.” He took himself to the venereal diseases clinic at St. Mary’s Hospital in London, as that was the only place then to get information on this new disease called AIDS. He sat down in the corridor “with all the other people who were waiting to see him for a different reason”—another grin—then saw a consultant. “He told me in a very grave, serious way about AIDS […] and I left rather shocked.” His own hemophilia doctor, when Julian expressed his concern, gave the advice that most other worried hemophiliacs were given at the time. Carry on as normal. He said, “‘You’re in more danger of a life-threatening bleeding episode than you are of getting AIDS.’ So I carried on and in October 1984, having been tested, they told me I was HIV-positive.”
Ade Goodyear was fifteen when he was told he was HIV-positive. At Treloar, Goodyear told the BBC, “we went into the office in the medical center in groups of five.” The atmosphere was relaxed but weird, because they had heard rumors. All schools have rumors, but not usually the kind that might kill you. “The doctors cautiously informed us that ‘you may have heard that Factor VIII is not as clean as it should be.’” Then, with artless horror, “we were told who had HIV by the words ‘you haven’t, you have, you have, you haven’t,’ and so on.” The boys asked how long they had got. Two years. Maybe. Of those five boys in that room, Goodyear is the only survivor.
* * *
The trouble for Julian, and for thousands of other hemophiliacs who injected hepatitis and HIV with their Factor, is who their donors were, what they were donating, and how Factor was manufactured.
By the mid-1970s, the UK’s plasma supply had problems. Concentrates were too popular, and the country could not find enough plasma to process. Most countries aim for self-sufficiency in their blood and plasma supply, but plasma concentrates require a level of donations that hardly any country can maintain. In 1973, the UK began to import Factor from the United States. Many other countries did the same. The United States, in the 1970s, was supplying half of Europe’s plasma. In his book Blood, Douglas Starr quotes Tom Drees, then president of the Alpha Therapeutic Corporation. “‘As the US feeds the world,’ Drees told a conference of fractionators, ‘so does the US bleed for the world. Or, more correctly, the US plasmaphareses itself for the rest of the world.’”16 How? Because they paid people for it. Sometimes, the kind of people you want nowhere near a safe blood supply.
How do you make blood safe? According to the World Health Organization, you take it from volunteer donors who are not paid and who have no reason to lie about their health. Plenty of studies show that when donors are paid, they are more likely to lie about it. Obviously they do: they want to keep getting paid. Paid donors are also more likely to come from sections of society that have poor health to begin with. But the US blood supply has always rested on commerce and transaction. After the Second World War, countries such as the UK, France, and the Netherlands developed a non-remunerated blood supply, often run by a single government entity. The United States did not. It took a book by a British sociologist to change the world. (That is not a sentence you will read often.) In 1970, Richard Titmuss published The Gift Relationship, and it threw the blood business up in the air. He compared the UK’s voluntary, altruistic system with the fee-paying blood business in the United States, and his conclusion was damning for those who considered blood to be a product to be bought and sold like any other. Paying for blood made it unsafe. He wrote soberly, but he used words like “moral” and “right.” Even so, it was only in 1978 that the FDA required all blood to be labeled as paid or voluntary donation, and payment for blood died out.17
But payment for plasma did not. Somehow, plasma taken from blood has become something other than blood: tamer, and less biological. Something you can pay for. This parallel reality began during the Second World War, when a doctor, Edwin Cohn, developed plasma fractionation for military use (plasma derivatives were easier to transport). In the 1950s, trials with gamma globulin, a protein isolated from plasma, proved successful at treating polio. Companies realized how successful plasma might be, if transformed into pharmaceutical products. Trade data lump whole blood and plasma together under the same category but in practice the United States treats them differently. Environmental activists talk of greenwashing: perhaps this was yellow washing. Anyway, it worked. Blood and plasma grew apart in concept and regulation. Now donors gave blood and sellers sold plasma.
But the plasma had to come from somewhere, and lots of it. Even paying for plasma did not bring in the huge numbers required to make good business. What about getting it from a captive resource? In 1947, German doctors were put on trial at Nuremberg for perpetrating “ghastly” and hideous experiments on concentration camp prisoners. Part of their defense was that Americans were also guilty of it. Some prisoners had been infected with bubonic plague in the name of science. Before the war, a doctor named Leo Stanley transplanted testicles from executed prisoners to “senile and devitalized men.” Later he switched to animals, injecting several hundred San Quentin residents with “animal testicular substance” from goats, rams, and boars. During the war prisoners took part in experiments that exposed them to gonorrhea, malaria, and the induction of gas gangrene. Sixty-two Sing Sing inmates volunteered in 1953 to have themselves injected with syphilis. Nearly half developed the disease, which attacks the eyes, brain, heart, liver, bones, and joints, and which can kill. In return, they got “a carton of cigarettes brought in by the doctors at Christmas time, a brief note on their records, and the good feeling which comes from having done something to help others.”18
During the war, more than seventy thousand American inmates gave blood to the Prisoners’ Blood Bank for Defense.19 For the next two decades, there were enterprising efforts to rehabilitate or coerce or coax prisoners into better behavior by using their blood. In the 1950s, writes Susan E. Lederer in Flesh and Blood, “prisoners in the Virginia State penitentiary received days off their sentence for each pint of blood donated.” Prisons in Massachusetts, South Carolina, Mississippi, and Virginia offered prisoners five days off their sentence for each pint of blood given.20 Prisoners were used to giving up body fluids for profit; they would be a rich pool for plasma.
Read about the activities of the plasma industry and you will perhaps wonder why they were never turned into a James Bond film. Companies such as Baxter, Grifols, and Octapharma, which control the industry and which are vast conglomerates with secretive billionaire bosses (in the case of Octapharma), set up clinics in skid rows and prisons all over the country. They also harvested plasma from poor countries. As Douglas Starr writes in Blood, the Nicaraguan dictator Anastasio Somoza had shares in Plasmafaresis, a plasma harvesting company in Nicaragua, which sold plasma to the United States. Locals called the facility “the house of vampires.” In Haiti, a company named Hemo Caribbean paid vendors $3 a sale—$5 if they accepted to have a series of tetanus shots—and flew it out on Air Haiti to buyers in the United States and Europe. New York Times reporter Richard Severo, who exposed the unpleasant trade in poor people’s plasma, wrote in 1972 that the company was shipping 6,000 liters a month, and looking to expand. Haitian sellers had the motivation of being desperately poor. They also had one of the lowest caloric intakes in Latin America, as well as alarming rates of tuberculosis, tetanus, gastrointestinal diseases, and malnutrition. Hemo Caribbean’s technical director, a Mr. Thill, said that “few if any diseased persons slip through,” and even if they did, even if they had venereal diseases or malaria, he was confident that the freezing process killed such bacteria. In Cummins jail in Grady, Arkansas, seventy miles south of Little Rock, a plasma center had been running since 1963. Prisoners were given $7 in exchange, and the plasma was sold for $100 a donation. They queued up in the center to lie down on cots and sell. They were “like little cows,” said an official who worked with Bill Clinton, twice governor of Arkansas.21 The little cows were milked and business was good. In 1974, the prison began selling to a company called Health Management Associates. HMA sold the plasma to North American Biologics, a subsidiary of Continental Pharma Cryosan, a Canadian company. (Cryosan later pleaded guilty to “mislabeling” blood from Russian cadavers as coming from Swedish donors.22 We’ve all done that.) From there, prison plasma was exported worldwide, to Canada, France, Iran, Iraq, Japan, the UK, Hong Kong.
Titmuss’s book caused upheaval in the blood business but not the plasma business. Yet in 1975 a California surgeon named J. Garrott Allen wrote to the Blood Products Laboratory in England, which had been buying American plasma products for years. Did they know, he inquired, that American plasma was “extraordinarily hazardous” and taken 100 percent from “Skid Row derelicts”? It also contained worrying levels of a new variety of unknown hepatitis, later called non-A, non-B, and finally C, which was more frequently encountered in “the lower socioeconomic groups of paid and prison donors.” The practice of selling blood became so popular with some socioeconomic groups, the press began to call it “ooze for booze.” Allen’s research showed that rates of hepatitis in prisoners and skid row donors were ten times higher than in the general population.23 Drug use, needle sharing, general poor health: all of these were risk factors. But nothing changed. Prisoners and the poor were too good a resource.
Reporters embedded themselves on skid row and wrote firsthand accounts. In 1975, reporters for World in Action, a British investigative current affairs TV program, traveled to various US cities to meet people who were selling their plasma. A man named Gary in San Francisco was asked whether he always answers questions about his health truthfully. “No.” He reconsidered. “You know, yeah, most of the time.” He is scornful of the health screening. “I’m healthy, you know?” Another donor says simply, “Pardon me while I puke.”24
By 1980 in the US, payment for blood had come to be seen as unethical. But 70 percent of the country’s plasma came from paid sellers and no one saw anything wrong with it. BPL did not act upon Dr. Allen’s warnings. Hemophiliacs had no intention of giving up Factor and going back to endless hospital stays. They wanted it for three reasons: It gave them a life. They didn’t know about hepatitis C. And no one had told them about HIV, insidiously making its way to being a global pandemic.
* * *
After his TV interview, Julian Miller starred in a documentary.25 It opens with a shot of him shaving, a sly reference to most people’s ignorant belief that hemophiliacs can bleed to death from a nick. There are scenes of Julian walking around his parents’ beautiful home in a beautiful Welsh valley, his stiff walk the mark of a hemophiliac, to those who know the sign language, revealing a person in constant pain. He is twenty-five years old in the film but speaks with the wisdom of the old, with such a calmness it seems like defiance, a refusal to capitulate to expected anger. This beautiful house in this beautiful valley, he says, is his quarantine. He cannot work, he can’t easily move around. He has abandoned hope, mostly, of a relationship, of marriage or children, although his brother Rupert, when asked what he wishes for his older brother, says, “A smashing girl who will take him on.” He didn’t get one. In fact, Rupert later wrote, hemophiliacs often didn’t dare masturbate in case they triggered a hemorrhage. “Therefore a shag was out of the question.”26
His mother, with her cut-glass accent and pussy-bow blouse, also seems serene yet tightly wound. Her only demonstration that there is something behind her public face is the occasional biting of her lip. A small tell of pain. She says she is optimistic, that her son is strong and healthy. “Hopefully,” she says, with a pause, “statistics show one thing one minute then another thing the next. So you look on the good side and hope that’ll sustain him. That they find something.” Under the YouTube video of this documentary, Rupert Miller has written, “They had to edit out my father’s part as he could not stop crying.”
Julian says, with his calm, “Originally we were told that there was estimated to be a twenty percent chance of developing the full AIDS syndrome. One in five hemophiliacs would develop it and if you develop it you die. A recent survey by one of the leading hemophilia doctors has now estimated that that might rise to eighty percent.” At this point he laughs. “So it’s getting worse.”
I’m not sure why I’m so captivated by this thirty-five-year-old film. Julian is long dead. Perhaps it is his composure in the face of criminal behavior, collusion, and cover-up that would justifiably have made him howl. But off-camera, sometimes he did. In 2014, Rupert published a book about his and Julian’s lives, called Life of a Salesman (Julian had worked in advertising sales for McCann Erickson, for as long as he was able). Here, at last, is something more than calm. Here is Julian, taken by Rupert to a wedding in a wheelchair because he was in considerable pain. “At the wedding reception a woman, who we had never met before, came up to him, put her nose right in his face, and shouted very slowly: ‘CAN I GET YOU AN ORANGE DRINK?’ ‘No, you condescending bitch,’ he barked. ‘Fuck off and get me some champagne.’” In his last months, in 1991, Julian developed dementia as AIDS attacked his brain. He “talked gibberish,” writes Rupert. “We would sit with him, and every now and again, he’d suddenly sit up in bed, tell us all to ‘fuck off,’ and then fall back onto his side.” While he was dying, he got a letter addressed only to “Julian, North Wales.” It was from a nurse in Rwanda who had heard him on the BBC World Service. When he died, he weighed five stone (seventy pounds). At his funeral, “he arrived in a very small coffin. He didn’t need a big one.”
If Julian had survived five more years, he would have been given antiretrovirals for HIV. He would already have been given synthetic “recombinant” factor, developed in the 1980s as an alternative to plasma-derived factor and now standard treatment for hemophilia. His life span would have been normal. I ask Rupert why he has written his book, and why he still wants to talk about his brother and what was done to him. His answer is simple and pure. “He shouldn’t have died.”
* * *
Heat. What could have saved all those dead was heat (as well as honesty). By 1983, the UK government knew that there was HIV in the blood supply. So did the plasma industry: memos discovered by hemophiliacs suing the giant pharmaceutical company Bayer, which owned the plasma fractionator Cutter Biological, show Cutter managers acknowledging in 1983 that “there is strong evidence to suggest that HIV is passed on to other people through … plasma products.” Later in the year, Cutter staff predicted a “gigantic epidemic” among hemophiliacs.27
Although the new variety of hepatitis was poorly understood and there was no test for it, by the early 1980s it was known that both hepatitis and HIV could be dealt with by good screening of donors, and with heat. But this was costly: the clotting factors weren’t destroyed but they were reduced so that more plasma was needed. Also, companies had lots of inventory of untreated factor on the shelves. They decided that it had to go somewhere. At a 1984 conference at the Centers for Disease Control in Washington, DC, a minority argued strongly that all non-heat-treated product should be discarded. The majority disagreed: it should be a matter for local medical personnel.28 A report by Justice Horace Krever into the contamination by US products of the Canadian blood supply titled one section “The Sorry Story of Blood Product Withdrawals.”29 It was sorry because it didn’t happen. An editorial in the Lancet, while recognizing the benefits of heat treatment, concluded an editorial with the reminder that “by far the commonest cause of haemophiliac death is bleeding.”30
By the mid-1980s, heat treatment was adopted as standard, but some companies continued to export their old, unheated inventory. Cutter sold it to Taiwan, Malaysia, Hong Kong, Argentina, Japan, and Indonesia, exporting more than one hundred thousand vials of unsafe, unheated concentrate—even though by then it produced heated product, too—and earned more than $4 million. In response, Bayer officials told the New York Times that Cutter had behaved “responsibly, ethically and humanely.”31
Because they use so much factor, it has been notoriously difficult for hemophiliacs to identify which batch or company infected them. But one hundred Hong Kong and Taiwanese hemophiliacs got HIV from the untreated factor.32 Carol Grayson, whose husband Peter Longstaff died of AIDS contracted from contaminated plasma, traced back a batch of factor he had been given in Newcastle Royal Infirmary to Arkansas State Penitentiary.33 To those little cows.
The United States was not alone in its monstrous exports: three hundred Iranian hemophiliacs were infected when Iran, then fighting the Iran-Iraq War, bought factor from France. The French took no sides in the war: they also sold blood products to the Iraqis for years after it was understood that the supply was tainted. More than two hundred Iraqi hemophiliacs, aged from six months to eighteen years old, got HIV. A Baghdadi named Khalid al-Jabor lost five sons. Two were forcibly quarantined by Saddam’s regime and died in the hospital. Al-Jabor hid the fourth son until he got too sick, and then he died.34
In the UK, hemophiliacs were used as guinea pigs. Or chimps, actually. In a 1982 letter, Professor Arthur Bloom, a hematologist at the Oxford hemophilia center where Neil Weller was treated, proposed testing the new heat-treated product on hemophiliacs. It had been tested previously on chimpanzees, but animal testing was expensive. Bloom decided that quality controls would be better—and less costly—if they were carried out on hemophiliacs who had not yet been exposed to large pooled products.35 The candidates were called PUPs, for previously untreated patients. Most were children. No PUPs were told that they were a human experiment. One was Colin Smith, treated by Bloom. He died of AIDS at the age of seven. In the months before Colin’s death, his parents had to pick him up in two sheepskins because he couldn’t tolerate the pain of being touched.36 Later it was discovered that a product called Factorate, produced by Armour, was heat-treated with a process inferior to the other companies. Armour was told in 1985 of cases of HIV infection in people using Factorate. It did not modify its process until two years later.37
Tainted blood activists today say that they are “cheaper than chimps.” But bleeders are also used to being told how expensive they are, because of how costly factor is. In 1985, a junior minister named Kenneth Clarke wrote that he was skeptical of heat-treating UK-produced factor. After all, “only hemophiliacs have died.” It’s an extraordinary memo. “Of course,” wrote an unnamed civil servant in the Department of Health’s Finance Department a few months later, “the maintenance of the life of a hemophiliac is itself expensive, and I am very much afraid that those who are already doomed will generate savings which more than cover the cost of testing blood donations.”38 Cheaper than chimps, cheaper when dead.
All this has been explored in huge and expensive reports and inquiries. The Archer Report in England consisted of 114 pages and was produced for $104,000. The Krever Report in Canada: 1,197 pages, four years, $11.5 million. Scotland produced the Penrose Report, finally, in 2016: 1,811 pages, six years, $16 million. In the United States, where 4,000 hemophiliacs have died of AIDS, some redress has come in the form of lawsuits and settlements, with many millions of dollars paid out. The French sent some blood officials to jail. Government schemes worldwide have provided some compensation, although the UK government is unique in its repellent refusal to provide compensation or an apology (it insists on calling payments “ex gratia”). These payments cover people infected by Factor, but also by whole blood transfusions. The blood supply and plasma industry have cleaned up. The reports have been done. Everything is better now and tainted blood is history. Isn’t it?
* * *
Hardly anyone visits Saskatoon in February. It is in the Canadian prairies, and there is nothing among the flatness to stop the wind, the cold, the snow. The week before I arrived, the temperature had been minus 40 Fahrenheit. This was exciting. Maybe I would be able to stick my tongue to a lamppost again, as I remembered doing—but probably didn’t—when I last visited Saskatoon at the age of ten. Maybe I would drive a Ski-Doo. I did neither of these things, because for the ten days I was in the province of Saskatchewan, the weather dispensed an unseasonable thaw. This meant that ice melted during the day and froze again at night. It meant black ice every morning. No one was crazy enough to walk on the streets except me, because the roads were salted and the pavements were not. I walked everywhere, for blocks and blocks, bloody-minded and wet-footed. One day I walked for an hour over black ice and slush, while drivers shook their heads in pity and sprayed me with filth, to reach a low, dull-looking beige building. It was clean and neat and nondescript with ample parking. It didn’t look like somewhere that could overturn Canada’s public health care system, or enrage placid Canadians, or provoke new laws.
Saskatoon is cut in two by the South Saskatchewan River, from which the city takes its name (the Cree word kisiskâciwanisîpiy, which I’m retaining for my next Scrabble game). Affluent Saskatoonians moved to the east side; the rest took the west. The west side is the place where earnest strangers on TripAdvisor advise you not to rent accommodation. Stay east. The river now is not the only thing dividing Saskatoon: health and poverty statistics do the same. The city has some of the highest rates of HIV and hepatitis C in Canada, as does the province. On some reserves where Saskatchewan’s First Nations people live, HIV rates are eleven times higher than in the rest of the country and equivalent to Nigeria’s.39 An assessment of Saskatoon’s health disparities found that residents from six low-income neighborhoods, all in the west of the city, are 3,360 percent more likely to have hepatitis C than higher-income Saskatoon residents. An infant born in these neighborhoods is 448 percent more likely to die in its first year of life. This mortality rate, wrote the authors of the report, a senior epidemiologist and the city’s chief medical officer, “is worse than [in] war torn nations like Bosnia.”40
The beige building is on the west side of the river. It belongs to Canadian Plasma Resources, a clinic that pays Canadians for plasma. It looks like nothing much, but many Canadians think it is unethical, wrong, and dangerous. Canada’s health system consists of a nationwide insurance plan called Medicare. This, according to Health Canada, ensures that “all Canadian residents have reasonable access to medically necessary hospital and physician services without paying out of pocket.” Most Canadians translate this to a British visitor as “like your NHS.” They see it as a public system for the public good, and something to be proud of. And for many Canadians, the presence of Canadian Plasma Resources is the beginning of its end.
Kat Lanteigne is a playwright and actor in Toronto. In 2013, she had written a play called Tainted, about Canada’s tainted blood scandal, during which eleven hundred were infected with HIV and thirty thousand—that is a movable number—with hepatitis C. Seven hundred were hemophiliacs and four hundred received transfused blood for other reasons (trauma, cancer, childbirth, surgery).41 So far, eight hundred people have died, including Lanteigne’s uncle. She was in the middle of a year of stage preparation when she read about some new “private blood clinics” that were being advertised on streetcars. “I was in a unique position,” she says. “I had just finished a massive three-year research project about the tainted blood crisis and had interviewed people across the country: tainted blood survivors, hematologists, former Red Cross workers, hemophiliac nurses, family members. So I was able to reach out to them and say these blood clinics were here and we probably should stop them, because we all knew they shouldn’t exist.”
That confidence, that they all knew paying for any kind of blood product was wrong and dangerous, was because of Krever. Talk to any Canadian who knows about their tainted blood scandal, and the word Krever is spoken with reverence. Justice Horace Krever was asked in 1993 to chair an inquiry into how Canadians had got HIV from the blood supply. The inquiry was meticulous, comprehensive, and devastating. The judge found fault with people and institutions and Canada’s system of collecting and distributing blood. The Red Cross, which had done most of the collecting and had continued to distribute tainted factor long after concerns were raised about its safety, was fired from blood services. Canadian Blood Services, a new national organization, was given full responsibility for the blood supply. Health Canada would be the overseer and regulator. The judge’s language was lucid and unmistakable: Canada should not pay anyone for blood or plasma. A voluntary system was safer. After what had happened—he didn’t write this—it was also more moral. It is estimated that eventually eight thousand Canadians will die from contaminated blood.
For twenty years, Canada abided by Krever’s recommendations, mostly. A small company in Manitoba was allowed to buy plasma, for limited use. Canadian Blood Services never paid for blood, and if you wanted to sell your plasma, you had to cross the border and sell it in America. Canada operated like most other industrialized countries: it collected plasma from whole blood donations for transfusions, and had plenty of that. It bought source plasma from the Americans as well as plasma products that used US plasma. Seventy percent of its immunoglobulin products are derived from American blood.42
But in Canada individual provinces have control of health care. If they wanted to pass legislation that allowed paid plasma clinics, they could. Despite Krever’s forceful recommendation that both whole blood and plasma should not be sold, only Quebec had passed a provincial law that expressly forbade the selling of plasma or any product taken from the body. Ontario had none. National legislation forbade the sale of sperm, eggs, and embryos. Provincial laws banned selling organs or body parts. But not blood. Even so, when a new company that no one had heard of arrived in Toronto and set up two clinics to buy people’s plasma, it was shocking.
So were the locations the company chose for its clinics. Location matters in the plasma business, and the biggest plasma business in the world is just over the border. More than forty years after J. Garrott Allen castigated the use of skid row sellers, the plasma industry in the neighboring United States still had a reputation for locating its clinics in poor areas populated by vulnerable people. Grifols, the global leader in plasma protein therapeutics, has nearly 150 clinics in the United States. Thirteen are along the Mexican border. There are four clinics in El Paso.43 A paper coauthored by someone with one of the best names in epidemiology, Cameron A. Mustard, examined the location of plasma clinics in the United States between 1980 and 1995 and found that the number of source plasma clinics operating in extreme poverty areas grew from 77 to 136. Commercial plasma clinics were five to eight times more likely to be located in areas considered high-risk than would be expected by chance. What was surprising was that “such clinics continued to operate in these areas well after the epidemiologies of HIV and HCV [hepatitis C virus] and the links between drug use, infection and blood product infection were established.” This, in dry science language, “is inconsistent with epidemiologic evidence that locating of commercial source plasma clinics—which provide cash compensation for plasma donation—in the midst of active drug markets and poverty represents a risk to blood system safety.”44 The number of people donating plasma had risen as dramatically as the number of Americans living in extreme poverty, according to Kathryn J. Edin and H. Luke Shaefer, two sociologists who published $2.00 a Day, a book about modern American poverty. Over ten years from 2006, the number of people selling plasma grew threefold, to 32.6 million.45 According to figures from the Plasma Protein Therapeutics Association, an industry body, they were donating more frequently. Today, according to the $2.00 a Day blog, “there are over 500 commercial plasma donation centers scattered across the country, most of which are disproportionately positioned in or around poor areas, where the most likely donors, the impoverished, reside. Of these centers, 100 opened their doors during the Great Recession and almost 200 have opened within the last decade.”46 It makes economic sense: the FDA allows Americans to sell their plasma up to twice a week (because plasma contains no cells, the body can replace it within forty-eight hours) and the payment is usually $30 to $50.47
Nowhere else in the world allows people to sell their plasma as frequently as in the United States. European regulations limit plasma sales to twenty-four a year, with at least two weeks between donations.48 “Selling plasma,” wrote Edin and Shaefer, “is so common among the $2-a-day poor that it might be thought of as lifeblood.”49 Selling plasma could raise a $2-a-day income to $3 or $4, about the same inflation as occasionally selling scrap metal or sex. How ethical it is for a profit-making industry to get its source material from poor people who have little economic choice, and what the long-term health costs are for them: that is undecided and unknown. When the journalist Darryl Lorenzo Wellington became a “plasser,” as regular plasma sellers call themselves, he experienced extreme fatigue, passing out for five hours. Of three dozen regular “plassers” he interviewed, “more than half of them confessed to frequent, bizarre tingling sensations, pains, rubbery legs, and severe dehydration, as well as to being homeless, having lied to pass medical exams, and having used ‘tricks’ that allowed them to pass protein-level tests. They lived in circumstances that made plassing a hardship but said, ‘I can’t eat if I don’t plass.’”50 Plasma donors who donate frequently have been found to be at risk of hypocalcemia, caused by the sodium citrate used to stop blood clotting during the plasmapheresis. Several studies that have compared frequent, paid US plasma sellers with European donors have found that the US plasma contained much lower levels of proteins such as albumin and immunoglobulins.51
Canadians looked to their American neighbors and worried that this homegrown plasma company was following similar strategies. Canadian Plasma Resources seemed have taken lessons from the US model. In Toronto, one of the proposed plasma clinics was on Spadina Avenue, close to the Centre for Addiction and Mental Health, as well as a homeless shelter. Another was near Cathedral Church of St. James, which also provided services for the homeless. In hindsight, says Barzin Bahardoust, the company’s CEO, these decisions were mistakes. He is a talkative Iranian, now a Canadian citizen, who speaks for an hour smoothly and without pause. In hindsight, he says, “it was a very big optics problem.”
It was also a very big political problem. Kat Lanteigne and others lobbied and protested. A hearing was held in Ontario’s legislative assembly, during which Doris Grinspun of the Registered Nurses’ Association of Ontario told a committee that “blood and money simply don’t mix—at least not for nurses.” A former deputy minister of health said it was corrosive to have private collection. Objections were not about the safety of paid plasma but the damage that privatization could do to a socialized health care system. If people were being offered money for plasma, why should they freely give blood? Nor was the defense of the Plasma Protein Therapeutics Association particularly persuasive. “The concern about paying for blood,” said PPTA spokesperson Joshua Penrod, “isn’t really accurate, because that’s not what we do.” He said, “It’s as simple as that.”52
Nothing about the plasma industry is simple. Nothing about blood supply is simple. The head of Canadian Blood Services, Dr. Graham Sher, gave the committee some sense of this. CBS collects enough whole blood to be self-sufficient in fresh frozen plasma for transfusion. But it collects only 200,000 liters of plasma for protein products, when it needs 800,000 to meet the need.53 This need is growing: for some reason as yet unclear, Canada’s use of immunoglobulins—particularly IVIG—is greater than in most other industrialized countries. “Nobody can explain the demand,” says Kat Lanteigne. “Last year it was 4 percent, this year it’s 7 percent.” Lucy Reynolds, a researcher at the London School of Hygiene and Tropical Medicine who wrote an exposé of the “grubby” global plasma industry, thinks it is due to off-label use by physicians.54 A pharmaceutical trade publication, remarking upon human blood’s “unparalleled healing properties,” listed neurological conditions for which IVIG is now being used: multiple sclerosis, neuropathic pain, chronic fatigue syndrome, and asthma.55 I’ve seen estimates that up to three hundred conditions are being treated with IVIG. Many of the conditions taken singly would send pharmaceutical company finance departments into a merry tailspin of profit calculation. But what if immunoglobulins could treat dementia? Various studies and trials have explored the ability of IVIG to attack the proteins that build up in a demented, damaged brain. A Baxter product, Gammagard, was disappointing and its development as an Alzheimer’s treatment discontinued.56 But a 2015 study by the Sutter Neuroscience Institute in California, using an Octapharma product, claimed more promising results.57 There is little reason yet for anything other than caution. But if plasma products can be used to treat dementia, this would create a $7.2 billion market in the United States alone.
Graham Sher’s testimony to the Ontario legislature was not what I’d expect from a man who runs an organization set up to deliver a blood service based on voluntary donations of blood products. He did not condemn the practice of paying for plasma. It was something for provinces and territories to determine. “Decades of evidence have proven that drugs made from plasma derivatives today are inordinately safe and just as safe as those made from volunteer donors. This is not the 1980s.” In this, he was aligned with Bahardoust, who believes the protests were fueled by Canadian Plasma Resources’ mistakes. A misunderstanding. Negotiations had been going on with Health Canada for four years before the clinics arrived, but CPR had not done any public relations. “We very much underestimated the sensibility of this issue,” Bahardoust says. “We didn’t do any public relations or any government relations apart from meeting with bureaucrats in Health Canada. That was, looking back, a very big mistake on our end.”
It was also costly. When the Ontario legislature disagreed and passed the Voluntary Blood Donations Act, the clinics were told to shut down. When they carried on operating anyway, the police were sent in.58 Canadian Plasma Resources, unbowed but poorer—it’s estimated it lost several million dollars in its Ontario ventures—went looking elsewhere. CPR needed a provincial government that was conservative and free market and could stand up to unions scared of privatization. It found one in the province where Canada’s socialized medicine system had begun.
* * *
My guide around Canadian Plasma Resources’ clinic in Saskatoon is a tall, fair man called Jason. He is a project manager, not an academic or medic. “A jack-of-all-trades, really.” He grew up in a small town in Calgary and spent most of his career in oil. This is, then, an appropriate switch, as his experience of dealing with a highly lucrative liquid will be useful in the plasma industry. Trapping the volatile prices of oil barrels to give a stable comparison is tricky, but in a 2012 paper for the William and Mary Business Law Review, Sophia Chase gave a persuasive example from 1998, when a barrel of crude oil was worth $13 a barrel, but a barrel of blood would have cost $20,000. Blood separated into its derivative products would have been worth $67,000, while the barrel of oil, even including its derivatives, was worth only $42.59.59 Yes, Jason says. “There aren’t going to be many downs in this business.”
None of these calculations appear in any of CPR’s literature or online. The slogan is “Give plasma, give life,” and the language is that of donation and gift and good, not profit and potential. It is no different from the marketing of voluntary blood donation, until you get to the page on Donor Compensation. But that is for later. First, a tour. Jason fetches me a white coat, more for theater than hygiene, as there are no other requirements such as hand gel or hairnets. The first step for what he calls donors and what I call sellers is an ID test: they must prove that they live within sixty miles of the clinic and not in a shelter or dubious hotel. Local donors, Bahardoust tells me, are more likely to be committed donors. A fixed address is a requirement. They keep a database, says Jason, and update the list of dodgy accommodations as best they can. As for the location limitations, they use Google.
With the right ID and the right answers on the questionnaire, the donor-vendors are screened by a nurse, then go through to the giving room. It’s an impressive space, as is the clinic: white, shiny, new. It’s not new: when the Toronto clinics were closed down, they simply moved the clinic, cots and all, to Saskatoon. The other clinic is in storage, waiting to be transported to Moncton, New Hampshire, where CPR is planning a second clinic.
There are sixteen cots. Currently the clinic sees about thirty-five donors a day, which is far fewer than CPR would like. Bahardoust would like to see an increase to one thousand appointments a week. That is a reach: business is modest but steady. I ask to interview some people attached to the plasmapheresis machine. Sure, says Jason. He is remarkably casual and open. It’s nothing like a later visit I make to Saskatoon’s blood donation clinic. It had taken me three weeks of asking a Canada Blood Services PR rep to be allowed to visit. Eventual permission was accompanied by strict instructions. “One of the supervisors will give you an operational tour. But you can’t talk to anyone. If you want pictures, we will send you pictures. If you want commentary we will send you commentary.” The PR rep finishes with a flourish. “The woman you are meeting is Karina with a K, and she will not give you her opinion on anything.” By the time I do get to the clinic and take a picture of the clinic sign, I almost hide behind a parked car in case they see me and drag me into the blood services prison for having taken a picture. There’s none of that here at CPR. If Jason doesn’t answer something, it’s because he doesn’t know it. I’d asked Bahardoust for a tour only the day before and been given no restrictions. It is in CPR’s interest to be open and apparently transparent. They remember the bad press and want better. But when Graham Sher of Canadian Blood Services later says that they are losing donors to CPR, I wonder whether it’s because CBS needs a lesson in getting good press.
The first seller I talk to is Gail Wittig. She’s watching something on her phone while the machine takes her whole blood, spins it, retains about 800 milliliters of her plasma, and returns her red and white blood cells. She is exactly the kind of person whom Graham Sher is worried about, because she has given whole blood forty times, and now she gives plasma. She used to do plasmapheresis when Canada’s blood was run by the Red Cross. “When I found out about this place, I thought, I’d like to do that again, I think. So I’ve come over to this side I guess. You can’t really do both.” Studies have shown that once a voluntary donor switches to being paid, either for plasma or whole blood, they rarely return. When a German company began paying for blood donations, then quickly shut down its business, the local Red Cross blood centers could get back only one in six of the donors they had lost.60
Gail works in a lab and knows that this plasma is going to make medication. She says, “They have their little thing out there,” meaning a display cabinet in the lobby that holds a few medicine bottles and empty IVIG vials. She’s not here for the money, she says, but because she thinks that giving plasma, even when it becomes a product with a huge profit margin, is a good thing. It helps people.
The next seller is also a lost blood donor. He’s a twenty-two-year-old student who last gave blood a year ago. Now he’s going to sell plasma instead. Why? “Well, one, you get paid. Two, I did blood before, and I felt good. Plus I’m a student.” I ask him if he knows what happens to his plasma and he is vague. “Kind of. Like, pharmaceutical companies? I don’t know. Not much.” I feel like turning a screw, a little. You know this place is controversial? He doesn’t. I tell him about Krever and tainted blood, waiting for Jason or the clinic nurse to stop me. They don’t. I tell him that people are worried that this clinic is the beginning of something rotten. He is pleasingly concerned, though probably just polite. “I’ll definitely go and research it.” And he will definitely come back for his money. First-time donor sellers don’t get paid until their plasma is quarantined and screened. Seven to ten days after the first plasma donation, they get a Visa card in the post, loaded with $70: $45 for the first lot, $25 for the second. If they sell five lots within three months, they get $50 for their fifth, and $100 for their tenth.
Plasma can be stored for up to three years. At the time of my visit, and probably for a long time after, Canadian Plasma Resources had no market for its plasma. It can’t sell it to Canadian Blood Services because it has no contract to do so, and there is no fractionating facility in Canada. What is not set out in the leaflets and advertising is that this plasma sold by Canadians is currently going no farther than a fridge in the back room overseen by a man called Innocent. The IVIG in those now-empty bottles on display in the lobby was made from American plasma, like 85 percent of Canada’s source plasma, or fractionated outside the country, like all of Canada’s plasma.61
This is the case in plenty of European countries whose residents would not countenance the selling of blood but who use medicines derived from paid American plasma donors. Britons have been using foreign plasma for decades, since vCJD—mad cow disease—infected the blood supply (its prions travel in plasma). In 2002, the government bought a US plasma company to supply enough plasma for protein therapeutics (it buys plasma from Austria when stocks fall) that is fractionated by Plasma Resources UK.62 It quietly sold it off in 2013 to Bain Capital, which in turn sold it to a Chinese conglomerate for a large profit.63 British people who would be horrified at being paid for blood are now receiving plasma products sold by Americans and governed by the Chinese. On its website, BPL claims that it is regularly audited by government inspectors. When I wrote to ask who would inspect it now that it had been liberated into the private sector, no one replied.
Dr. Ryan Meili is a Saskatoon doctor who has worked for many years in an inner-city clinic. During my visit, he was also fighting a campaign for election to the provincial government. When we meet in a downtown café, I recognize him easily as the man whose face I’ve been seeing, billboard-size, all over town. He speaks quietly and fluently. His worry about the new clinic is on two fronts. The politician in him is disturbed by the language of donation, which “gives the impression that this is a benevolent operation, a nonprofit whose main concern is the public good. Whereas it’s clearly a for-profit organization that is selling these products for the development of drugs.” The other worry is medical. The literature into long-term health effects of frequent plasma selling is “not rich,” he says, but the people in his clinic have high rates of diabetes, hepatitis C, and HIV. They have poor diets and food insecurity. “So adding this literal drain on their bodies is something that I think should not be done without significant further investigation, and really should not be done at all.” I ask him whether his medical or moral concerns are uppermost, and he gives an answer that, if I were from Saskatoon, would have got my vote. “The practice of medicine is a political act however you choose to do it.”
Don Davies is the health spokesperson for the opposition National Democratic Party. He objects on the grounds of “two S’s.” Science and safety. “When you introduce a profit margin, you’ve now introduced a competing value to safety.” Anyone who reads the Krever Report understands that, because of its finding that dangerous inventory was given to people only to cut costs. “We don’t think anything should compete with the safety of blood.”
For Kat Lanteigne, creeping privatization is what concerns her most about Canadian Plasma Resources. It is not the safety of the product that concerns her but the safety of the system. A private clinic is not linked to the public health care system, so if something did go wrong, it would be harder to trace. “When you go to a Canadian Blood Services donor clinic, you are under the umbrella of our health care service, so a nurse taking care of you is a Canadian public health care nurse, and if something shows up in your blood you get a phone call immediately from a Canadian blood services nurse, and you go to your doctor and it’s integrated.” She tells me of an artist several years ago who used a bag of blood in an artwork. “A journalist asked him where he got the blood, and he made a joke and said Canadian Blood Services. The agency flipped. But they were able to find that it wasn’t from them, that nothing was missing.” She thinks this kind of scrutiny will be diluted by privatization. Graham Sher of Canadian Blood Services has said differently. “We may have moral objections and philosophical objections to paying,” he told the Toronto Star. “But let’s not make it an issue about safety when it’s not about safety.”64
* * *
In 1987, Ann Hume, living in Shetland with a new partner, was pregnant again. By now there was AIDS in the news, and she thought of this and remembered her terrifying hemorrhages all over her kitchen floor. She asked her hematologist to test her for HIV. “And oh, she went off her head. She said I would never get any viruses out of Scottish blood products.” She got the test and she was negative, but only for HIV. “I went ahead with the pregnancy not knowing I had the hep C. I had got hep C in 1982.” She sends me her medical records, mostly correspondence between the hematologist and Ann’s Shetland GP. Typewritten, first, then computerized. Ann has added handwritten Post-it notes here and there. On a letter dated August 18, 1982, the hematologist wrote that Ann’s Factor VIII level “was totally normal.” Ann’s Post-it: “Yet she still gave me Factor 8?”
She carried on. She was busy with three children and attributed her backaches and joint pains to life or aging. One day she was at the hospital for physiotherapy and saw something in a magazine about the Hemophilia Society. “I wrote to them and got back a letter on leaflets and hepatitis C. I read it and said to my partner, this is what I’ve got. I’ve got all the symptoms.” When she got her positive test result, she was given another leaflet that informed her that 80 percent of people with hepatitis C would get cancer. Her partner said, We can’t tell anyone. The Hemophilia Society said, Don’t tell anyone. The stigma of having a blood-borne virus, in the days of AIDS, was high. “You’ve got this illness but you can’t tell people what it is in case it goes all around the town, and everybody is pointing their finger at you.” And sometimes they don’t believe you. In a letter that Ann sends me from her doctor, the hematologist described this young woman as arriving on crutches and having a vivid imagination. The connection between the two is clear.
Ann hasn’t had cancer yet, just persistent joint pain, osteoarthritis, and overwhelming fatigue. She struggled to look after her children. She couldn’t work. She got a new hematologist, who had to hunt for her medical records because they had disappeared. Disappearance of documents is something tainted blood campaigners get used to. When Lord David Owen tried to access his records from his time as health minister, he was told they had been shredded according to “a ten-year rule.” There is no such thing. But nor are there any records. Ann’s new hematologist, a Mr. Watson, also hunted for something else: in her dossier, there are letters to Watson from the Aberdeen and North East Scotland Blood Transfusion Service, assuring him that Ann had not received any blood products—Factor VIII—from their stocks. A few weeks later, another letter, from the director of the Scottish National Blood Transfusion Service Protein Fractionation Centre, who remembered that hemophilia doctors had used American Factor in the early 1980s. Other letters, other official forgetfulness. Another Post-it note: “This Factor 8 bottle brand name was never found.” She did finally get a diagnosis, of a platelet clotting disorder. And after taking a drug called Arvon, she has been cleared of the hepatitis virus. But she is not symptom-free. Walking is exhausting and painful. Her joints ache. She blames her first hematologist more than the authorities. “I suppose I blame them for taking it into Britain in the first place. If it was American stuff I got, I don’t know, I’ll never know. But the genotype of the hepatitis C I had was called 1A and it’s prevalent in North America. So that’s what makes me think mine was American. But nobody will tell me.”
Other victims of contaminated blood were more successful in their efforts at tracing the source of their infection. But when Jason Evans, whose father Jonathan was killed by AIDS at the age of thirty-two, tried to seek his dad’s medical notes, he was told they had disappeared. In an interview for the BBC, he said, “Had I not met other people in the tainted blood community, I wouldn’t have thought anything of it. But they all said the same thing.” Papers had vanished. “I don’t think you can help but be suspicious.” Evans has now launched another lawsuit—there have been many before, but none successful—using new documents he has found in archives. In early 2017, the English MP Andy Burnham, in his last speech in the House of Commons, said that the contaminated blood issue, usually described as a “tragedy,” with the implication of happenstance and accident, was worse. It was, he said, “a criminal cover-up on an industrial scale.” Medical records had been doctored. Pages were missing. In 2016, a Conservative MP named Peter Bottomley participated in a debate about tainted blood in Parliament. His mother, he said, had had an HIV test after receiving a blood transfusion, and he supported greater transparency and investigation. He said, of people whose blood was tainted, “People should go out of their way to put arms around them, act not just like a two-armed human being, but like an octopus and get right around them and try to meet all their needs in a way that they find acceptable.”65 This was a rare example of warmth toward a community of people who feel mostly discarded and treated with abominable disdain. These people who were “only hemophiliacs.” “We weren’t hearts, we weren’t cancers,” said David Watters, formerly head of the UK’s Hemophilia Society.66
In Canada, Alberta has become the latest province to introduce legislation to ban the sale of blood, even when it’s called “plasma.” But the Canadian Plasma Resources clinic in Moncton is now open for business after months of opposition. The plasma protein therapeutics industry is predicted to grow 10 percent a year, with no recession in sight.
Plasma products are as safe as biological products can be. And accusations that the industry targets poor people are unfounded, according to the Plasma Protein Therapeutics Association. “Plasma donors,” it wrote in a recent press release (not “plasma sellers”), “deserve our gratitude and respect, not sweeping negative characterizations.” To say otherwise is “unfair to plasma donors as well as to individuals living with rare, genetic and chronic disease who rely on access to plasma protein therapies.”67 Perhaps it is also unfair to wonder about the safety of an industry run by only four companies, when conglomerates and monopolies dominate business (the US petroleum industry is in the hands of a handful of corporations; so is its bottled water industry). Pathogen inactivation techniques are sophisticated and widespread. But population growth, deforestation, and climate change are all pushing humans and wild animals closer together. Viruses like that; they like to jump. We can inactivate only the pathogens we know about. Scientists such as Jonathan Quick of the Harvard Medical School believe there will be another major outbreak of something—in our air, food, or blood—in the next fifty years. Since 1975, twenty-five new pathogens have been discovered for which there is no vaccine or treatment. In 2012, a Chinese team detected parvovirus B19, a pathogen discovered in 1974, in more than half of Chinese plasma pools. H7N9, a flu usually confined to chickens, has begun to cross into humans and kill them. China has the largest plasma industry in the world after the United States. How safe is safe? The unhysterical Lancet Haematology wrote a recent editorial on “the big business of blood plasma.” The financial incentive, it read, “can encourage lying during medical screening and could adversely affect the health of some of the donors as well. With some companies pooling hundreds of thousands of donations together for processing, this can be an important safety risk.”68 We can’t protect ourselves fully from what we don’t know is coming.
In the UK, the prime minister has promised a proper inquiry into the contaminated blood scandal, though at first the government wanted the Department of Health to investigate itself. There are hopes but not high ones. The death toll that will come from hepatitis C is unknown, because it is not routinely tested for. When doctors in a London hospital recently did a pilot study, they found that rates were three times as high as was believed. Only 250 of the 1,500 British hemophiliacs infected with HIV are alive. Sixty-two contaminated blood victims have died since plans for the new inquiry were announced in July 2017. Of 89 hemophiliac boys at Treloar College during the years of contamination, 72 are dead. I understand why hemophiliacs call themselves the “shut up and die” community: wait long enough, as some governments have, and probably there will be no one left to complain. I watch on YouTube a short film by Bruce Norval, a Scottish hemophiliac infected with hepatitis C, and a vocal campaigner. He filmed it outside, with him leaning against a concrete post. From the exhaustion in his voice, I suspect it is a prop in more ways than a staging one. He sounds weary, but there is force in his quietness. “I shall retain an absolute shame,” he says, “to be part of a country that would perpetuate such a crime.” He is sure that the British authorities who gave tainted factor to hemophiliacs without telling them and when they knew it wasn’t safe are stalling. They just have to wait sixteen more years and all the infected will be dead, of hep C or complications from HIV, of tainted plasma protein products or what he calls “manky blood.” It’s just math now. But they’re not gone yet. And they’re not done with wanting to know why something that was supposed to be safe, and that was supposed to give them life, gave them death instead. So “for that last little bit,” says Bruce, in his unsettlingly quiet tones, “we’re going to scream blue murder.”