by Rose George
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.