The Red Market (18 page)

For-profit blood banks were making money even when they were selling infected blood, but the discrepancy in quality was not lost on doctors. In some cities doctors were so alarmed at the risks of using infected blood that they directed their hospitals to buy only from volunteer blood banks. Sensing danger to their business model, the for-profit centers fought back. Private banks began to systematically sue the hospitals for violating American antitrust laws. They argued that since blood was an openly traded commodity, volunteer blood donation constituted unfair competition for raw materials. The doctors’ clinical decisions set patients’ health on a collision course with corporate interests.

Most famously, in 1962 in Kansas City, two commercial blood banks took their case before the Federal Trade Commission and won an injunction against nonprofit hospitals’ use of volunteer blood. In the decision the hospitals were fined $5,000 for every day that they continued to depend on the safer supply of blood. The majority decision by the FTC stated that the nonprofit Community Blood Bank, along with hospitals, pathologists, and doctors, were “illegally joined in a conspiracy to restrain commerce in whole human blood.”

In the years that followed, the American Medical Association fought repeated battles against the Federal Trade Commission’s precedent and was eventually able to overturn the action. But the ruling remained constantly on the minds of many in the medical community who cautioned that the privatization of medicine would create similar problems in other markets for human tissue. They worried that commercial pressures would give incentives to doctors to provide unnecessary treatments.

At the same time as Kansas blood banks were fighting for the right to sell blood from commercial blood donors, the Arkansas Department of Corrections entered into agreements with pharmaceutical companies and hospitals to sell blood plasma taken from inmates. The program helped subsidize the price of incarceration and increased the supply of blood in the state, but at a great cost. The prison system had little incentive to screen the donors for quality, and over the thirty years that the system was in effect, Arkansas blood was linked to outbreaks of hepatitis and contributed to the early spread of HIV. One of the highest-volume buyers of Arkansas blood was a Canadian blood supply company that routinely disguised its sources in order to increase its sales. Without knowing its source, buyers imported diseased plasma around the world, spreading infected blood as far as Japan, Italy, and the United Kingdom.

Eventually the United States and Canada restricted the practice, and finally in 1994, almost a decade after the uniform law against organ trafficking was passed, Arkansas became the last state to outlaw the sale of prisoner blood. Subsequent investigations conservatively estimated that in Canada alone one thousand people contracted HIV through infected blood and another twenty thousand got hepatitis C.

In the context of the rest of the world, Gorakhpur isn’t so much an anomaly as a regression to earlier blood scandals. And with shortages in one area, it is easy to see the problem spread out across the entire medical system. Even after Papu Yadhav’s crime spree, the drastic shortages were ample incentives for other sorts of criminal schemes to increase the overall supply. Today the problem doesn’t just take place behind padlocked doors but also on the streets.

The government-run hospital where Gurya Devi delivered her child has to at least make an appearance of propriety. Its private counterparts are under no such pressure. With only three government hospitals, private clinics are where anyone with a little money goes to receive quicker though not necessarily better service.

The city’s medical infrastructure is a mishmash of backroom clinics and private hospitals. Advertisements for cheap pharmaceuticals line every block and seem to grow almost organically like vines up traffic poles and streetlights. By sheer volume, Gorakhpur sells more pharmaceuticals than New Delhi. Since it’s so close to the Nepalese border—where hospitals are even worse—smugglers and patients carry massive amounts of drugs back to the neighboring country. While care is similar among the government hospitals, the quality of private clinics varies wildly. The places with good reputations have long lines of turban-clad farmers and their emaciated wives circling around the block. They will wait all day for a visit with a respected clinician. Other clinics strive to attract even a single patient in a day. And in many cases the competition over patients can get violent.

Kedar Nath spent much of his life in the small village of Kutwahan farming a patch of dirt for rice, mangoes, and bananas. His face is worn and wrinkled from sixty years of honest work. Three of his sons have gone on to work migrant construction jobs in faraway Mumbai and send a small amount of money home each month to keep the lights burning. Nath stays frugal so that he can stow away something for when he is too old to tend to his land. When I meet him the weather-beaten farmer is wearing a white dhoti and sun-bleached turban. His hands are knotted with age, but his eyes are lively like a young man’s.

He also has a host of health problems that put him on a worn-down public bus to Gorakhpur once a month. His doctor, Chakrapani Pandey, is often found on the American lecture circuit, but has dedicated his life to serving the poor, operating a heavily subsidized clinic in the center of town. He’s one of the most respected physicians in Gorakhpur. Every morning the line of patients for his services begins to form three hours before office hours.

In March 2009 Nath hired a three-wheeled auto rickshaw to take him from the bus station to Pandey’s office. The driver had different plans. When Nath got in the backseat, two muscled men with betel-stained teeth and fierce faces told him that they would take him to a better doctor. “They said Pandey didn’t know what he was doing, and that people at Sitla Hospital were better,” he tells me. When he protested, the men grabbed his arms and held him down. When he cried out for help nobody listened.

Sitla Hospital is just one of many new private clinics that cater to migrant laborers. Inside, four stories of waiting rooms and operating theaters offer a range of general services, but like anywhere in Gorakhpur, it has a near-constant shortage of blood.

Nath says he was dragged up the concrete ramp to the hospital and forced to pay a fee at the front counter. The men then dragged him to a small private room with an iron door. “Then there were four men, and they held me down, one man on each limb,” he says with anger hotly flashing across his face. “I was helpless.” One of the attendants plugged a needle into his arm and drained about a pint of blood into a glass container. When the procedure was over, his white dhoti was stained in blood and they threw him out onto the street with a prescription for a urinary infection. He partially blacked out from exertion and blood loss, and it took him close to an hour to regain his feet. When he could finally stand he hired a rickshaw to take him to Pandey.

A HEFTY MAN WITH
a kind face, Pandey sits behind a massive iron desk with a ceiling light that hangs from a thin white wire until it is lower than his eye level. The only hint of luxury is a massive air conditioner that blasts cold air until the office approaches arctic temperatures. At the mention of Kedar Nath’s name his face falls and he lowers his voice.

“You have seen the lines outside my office—everyone in the city knows I am a popular doctor. But I lose at least three patients a day to agents of other hospitals who want to add to their business,” he says. In Gorakhpur, he says hospitals don’t only compete for blood supplies but warm patient bodies as well. They hire taxi drivers and small-time thugs to stake out other clinics and bring patients—sometimes by force—to commission-paying hospitals. Once, he says, he was able to catch one of the agents, who told him that commissions could reach up to
3,000 ($75) for an ailing patient who might generate large fees for a hospital. The small fortune is enough to make any taxi ride fraught with danger.

“With Kedar they stole his blood. Who knows what else these people are capable of?” he asks. Or, for that matter, what other crimes are committed in the name of medicine?

The identification card I used during a clinical trial for the experimental erectile dysfunction drug Levitra. In 2005 I was locked in a small testing facility along with broke college students and professional lab rats and dosed to test the maximum safe level for the drug.

I
AM THE
Chuck Yeager of erectile dysfunction. Or, at least, one of them.

In the summer of 2005, fresh out of a graduate program in anthropology at the University of Wisconsin–Madison, my meager student stipend was about to run out. I was uninsured and already in debt from student loans. For me, and thousands of students across America, one of the surest ways to make a quick buck is to sign up to be a human guinea pig for a drug trial. Madison is one of a handful of major clinical testing centers in America, and renting out my body was as easy as perusing the classifieds section of the local weekly paper, right next to the ads for escorts and no-strings-attached personals.

Like prostitution, the cash was enticing. The $3,200 that Covance, a local contract research organization that runs clinical trials on behalf of major pharmaceutical companies, advertised on its website seemed like a great deal. In only a few weeks I could earn as much as I usually made in three months. The drug in question was a reformulation of Viagra, one of the highest-grossing drugs of all time.

At the time, Pfizer had a lock on the erectile dysfunction market, and Bayer Pharmaceuticals wanted a slice of the pie. Bayer’s proposed erectile enhancer was a subtle reformulation for what in industry jargon had come to be known as a “me too” drug: one that has the same basic pharmacological properties as something already on the market, but different enough to be eligible for a separate patent. “Me too” drugs still have to clear regulatory hurdles, and Bayer hired the CRO Covance to run the clinical trials. After a brief screening process, Covance, hired me and about thirty other men to spend four weekends together in a room hopped up on massive doses of penis stiffeners.

Of course, I’d be getting paid, but clinical trials aren’t exactly safe. In 2006 eight volunteers enrolled in a week-long study of TGN1412, an experimental drug that was being tested to treat rheumatoid arthritis and leukemia. Within minutes of the first dose six men vomited and lost consciousness. The staff at Northwick Park Hospital in London rushed them to the trauma unit, where doctors recognized the symptoms of multiple organ failure. The doctors saved their lives, but the drug had irreversibly damaged their immune systems. One lost his toes and fingers. Another eventually developed a cancer that may have been triggered by the drug.

In 1999 in Philadelphia the stakes were even higher. Jesse Gelsinger died five days after receiving one of the first gene-therapy cocktails when he was only eighteen years old. Gene therapy offered exciting prospects to combat genetic disorders by targeting specific changes in a patient’s genetic makeup and swapping out bad genes for good ones. If the drug had worked it might have been a first step in a whole new field of revolutionary medicine. But his death had a chilling effect. The media branded the entire field of gene therapy a dead end, and the outrage effectively closed off a promising direction of scientific inquiry. The FDA and investors were so shaken by his death, it took ten years for another gene therapy clinical trial to move ahead. The fallout from that trial hangs over every other modern experiment and raises the stakes for pharmaceutical development. If a drug study goes bad, not only could someone die, but billions of dollars in investment could suddenly turn worthless.

But a dose of rebranded Viagra didn’t seem so dangerous. After all, millions of people were already using it around the country. When I first reported for duty at the squat one-story complex outside the city, I entered through an air lock and a nurse signed me in, told me where to drop my bags, and hung a photo ID around my neck. I made my way through hallways and common rooms that smelled strongly of latex and antiseptic, passing men in their thirties from another study holding small pads of blood-stained gauze in the crooks of their arms. The bandages resembled miniature renditions of Japan’s national flag.

An hour after the last stragglers for the Levitra trial arrived, the head nurse marshaled the volunteers into the dining room and listed the house rules:

“This is basically a feed and bleed study,” the nurse told us. “We’re trying to find out how long the drug stays in your system. We don’t need to know if you have an . . . um . . . we don’t need to know if the drug is having its desired effect—only if it’s abnormal.” To our relief we interpreted that as meaning she wasn’t interested in our erections. After we filed out of the audience hall, I sat down on a couch in front of a giant television and shook hands with the other members of the study, at least half of whom did this for a living.

One of them, a forty-four-year-old veteran of almost fifty clinical trials named Frank, had traveled here by bus from Florida. He was wearing blue sweatpants and a faded Champion T-shirt—a uniform that screams comfort over style. He told me that the trick to getting through is to remain calm with the superficial discomforts. I’d know if things went seriously wrong.

Once, he told me, he saw someone freak out during his first blood draw. The test subject started screaming that the experimental cocktail was burning his arm and that he wanted out. The nurse gave him the option of leaving right then and there, “but he would have had to forfeit his stipend.” The patient ran. But Frank decided to stick with it. There was no way he was going to give up easy money. They dosed him, and he felt the same burn the guy before him did. But instead of panicking, he was content.

Within days the doctors called off the study and sent the compound back to the lab for reformulation. “It felt like a hustle. Those of us who stuck it out got paid for the full thirty-day study with only a few days in the clinic,” he tells me with a smirk. He didn’t know if he had damaged any part of his body, but staying put earned him an easy $8,000.

If it was a hustle, what kind of hustle was it? On a drug trial test subjects don’t work in a traditional sense; many even talk about their experiences as if they are a source of free money. However, just because they’re not actively working doesn’t mean that they’re not providing a valuable service to drug companies. The product these human lab animals are offering doesn’t come from physical or mental exertion, but it is both potentially dangerous and time-consuming. Puzzling over this issue, social anthropologists Catherine Waldby and Melinda Cooper coined the term
clinical labor
to describe the not-quite-work that Frank does for a living. Without their valuable contributions the entire pharmaceutical business could grind to a halt.

The official stance of the drug industry is that there should be no such thing as clinical labor. Volunteering for a drug study has the same mix of altruism and profitability that exists in every other of the world’s red markets. While drug companies begrudgingly compensate people for the time they spend in a clinical trial, they reiterate that guinea-pigging is not a job. It’s a donation.

That doesn’t stop almost fifteen thousand people in the United States from making a substantial portion of their income through drug trials. The Internal Revenue Service doesn’t see a problem with it either and happily taxes the cash that the companies pay out.

Unlike, say, working in a sweatshop, providing accounting services, or engaging in prostitution, a test subject doesn’t have to
do
anything. The pharmaceutical companies are simply renting their bodies in order to study metabolic processes. Laboratories pay for the time it takes test subjects to go through trials and to offset the potentially serious risks to test subjects’ health.

From the perspective of the quality of the data, relying on professional guinea pigs is a problem. For the best results doctors need to isolate as many variables as possible—something made problematic when test subjects move from trial to trial, accumulating an unknown mix of experimental compounds in their system. People who have been doing it for a long time can become so used to processing drugs that their immune systems might react erratically in ways not found in the normal world. That’s why in an ideal setting a test subject has had little or no prior exposure to drugs. In the best trials, test subjects are genuinely
treatment-naive,
that is, they have literally no medical histories to speak of. The blanker the subject’s slate, the easier it is for a drug company to transform the data from their bodies into dollars.

As a rule, professional guinea pigs have their own interests ahead of the data’s. This sense of self-preservation can skew results. Testers try to game the system by not taking drugs or pushing studies dangerously close together. Too many spurious drug interactions, and a trial might have to restart from the beginning.
¹⁸

At the same time, pharmaceutical testers are in a double bind. Clinical testing is dangerous work by its nature, and testing centers have trouble filling their rosters with willing bodies. Real volunteers acting out of pure altruism are rare. But paying cash means that professional testers are almost inevitable. The alternative is to bring back the earlier-era model for recruiting subjects. Between World War II and the 1970s an estimated 90 percent of drugs were first tested in prisons. Inmates had little choice when it came to volunteering—they could either choose hard labor or sign up as lab rats. Prisons allowed the drug companies to closely monitor the prisoners’ every movement and could rely on the state to keep them from cheating.

The strict protocols led to a blossoming of drug development with highly accurate data at a fraction of the cost of modern counterparts. But eventually prisoners’ rights activists were able to ban the practice. They compared the dangers of inmate drug studies to the Tuskegee syphilis studies of the 1930s through the 1970s, in which a control group of poor black invalids had been intentionally left untreated by doctors while testing the efficacy of antisyphilis medications. When prisons were banned as test sites, drug companies lost their entire base of testable human flesh and had to retool their research strategy to favor incentives rather than coercion.

Paid volunteers replaced prisoners. And soon an entire class of people—mostly blue-collar workers, ex-prisoners, students, and immigrants—found that drug trials could be its route to financial independence. The situation left drug companies in an uncomfortable position.

A veteran test recruiter quoted in an article by the anthropologist Adriana Petryna said that recruiting is a perennial problem: “I don’t know anyone who has really cracked the code. Sometimes you get lucky and fill a study quickly, but for the most part patients are really difficult to find, and they are difficult to find because everybody is looking for them.”
¹⁹

IN THE COMMON ROOM
of the drug trial, Frank told me that he’s a true veteran of the business. Tall, with a mop of unkempt black hair, he was nearing the end of his clinical trial run. He told me that the trick to making a career on clinical trials is not completely straightforward, but that there is a certain stretch of test centers running from Miami to Seattle that lab rats migrate between like seasonal laborers. “Ideally a lab rat shoots for one trial every other month so that they can get the medication out of the system. That gives you a thirty-day safety margin for any unexpected interactions,” he said. And besides, the pros (who are mostly composed of ex-convicts, illegal workers, or students) are in it for the quick money.

And one more thing: “If you keep doing this you are going to have to take care of your veins, or you will look like a junkie.” And looking like a junkie is a sure way to get kicked out of future studies. He told me how to rub vitamin E on the punctures to speed up healing and to switch arms whenever possible. “It hurts the first time you get stuck with a needle, but between the third and tenth time you don’t care anymore. After a year of studies you want to take the needle from the phlebotomist and do it yourself. With trainees it’s not even a question. They’ll slice you like a razorblade.” For full-time testers, their veins earn the paycheck. And without a delivery method to his circulatory system Frank wouldn’t make a living.