Health

Clinical trials: Guinea-pigging all the way to the bank

Despite unknown potential long-term health risks, these people get poked, prodded and more for otherwise easy cash

Elias Youngquist, 21, holds up the check he earned after giving himself up for medical research to pay for the engagement ring displayed on the laptop screen next to him.
David Martin for Al Jazeera America

LINCOLN, Neb. — Elias Youngquist knew which engagement ring he wanted to buy his girlfriend, but the college senior didn't know how he was going to pay for it. The 1935 vintage diamond ring with an ornate band cost $1,020.

Then he learned of a part-time job that would cover the price of the ring and then some — in just a few hours. The only caveat: the gig could cause suicidal tendencies, psychosis, insomnia and hypertension. He signed up anyway.

Youngquist, a 21-year-old journalism student at the University of Nebraska, became a test subject in a clinical trial for an antidepressant. By doing so, Youngquist joined the front lines of pharmaceutical testing: a Phase I trial, the first step in the U.S. Food and Drug Administration's drug-approval process.

In his role as human guinea pig, he spent two weekends at Celerion's dormlike test site in Lincoln, Neb., swallowing a small white pill at 7 a.m. each Saturday under the watchful eyes of a doctor and two staff members.

"I've spent worse weekends," said Youngquist, a Lenox, S.D., native.

He returned early each morning the following week to have blood samples taken.

Phase I trials, involving 20 or more subjects, are used to determine whether a drug is safe and to learn possible side effects. Youngquist arrived on a recent Monday morning and reported, reluctantly, that he'd been gassy. Now, he said, his chart reads: "Youngquist/Flatulence."

He is part of an underground of people in Lincoln and across the country who step up time and again to get poked, prodded, injected and otherwise sickened as human guinea pigs in clinical trials. The pay is good — sometimes $2,000 or more for a week's work — but the risks can also be high, with some participants suffering lifelong health effects.

If a drug is deemed safe, it can advance to Phase II and Phase III trials on patients to see if it's effective and determine the optimal dosage. These trials typically involve thousands of patients.

Celerion, which is headquartered in Lincoln, recruits in coffee shops in this college town with posters asking, "Spare time this summer?" The company website says test subjects "help people in your community and around the world."

Despite the appeal to altruism, money appears to be the prime motivation for people who sign up.

Tommy Dornish, 22, said the more than $20,000 he made taking part in clinical trials at Celerion helped pay for books, tuition and living expenses while he attended the University of Nebraska. Without them, he said, he would have had to take time off from school to get a full-time job.

He is participating in his eighth study in three years, and he has experienced significant side effects only once, when he suffered jaundice, which turned his skin and the whites of his eyes yellow. He cautions, though, that guinea-pigging isn't for the squeamish, requiring blood draws as often as every 15 minutes.

Dornish said two women were kicked out of a recent study after they couldn't finish a high-fat breakfast — two fried eggs, buttery hash browns, whole milk, buttered toast and bacon — in the allotted 20 minutes.

"I liked it, but a lot of people thought it was gross," he said.

Dornish, who has graduated and now works in Lincoln as a loan officer, said he'll keep doing the studies as long as they let him. But his enthusiasm does have its limits.

"There's a study with a spinal tap," he said. "I don't want to go anywhere near that. Heck, no."

Mark, 29, who asked that his last name not be used, said he was lazy and didn't feel like getting a job when he signed up for a Phase I trial involving a diabetes drug. He experienced what he describes as the "head cold from hell" and quit the study when his snot reached the ground.

"I just felt like my immune system was getting weaker and weaker," Mark recalled, adding that he was sick for two weeks after leaving the study.

Another frequent test subject in Lincoln, an Iraqi immigrant who requested anonymity, has permanent needle marks on his arms from all the blood draws.

"Sometimes people think I shoot up," he said.

Enough oversight?

While guinea-pigging seems like an easy way to make a quick buck, it's often a risky endeavor, and a lack of official oversight could be putting subjects in more danger than getting some side effects. That is to say that guinea-pigging has had its share of scandals.

In Florida in 2006, Miami-Dade officials determined that the facility of drug-testing company SFBC International, a converted Holiday Inn, was in danger of collapsing and ordered it demolished. A year earlier, Bloomberg Markets reported that SFBC test subjects there were skirting rules prohibiting them from taking part in more than one test at a time.

In 1996 The Wall Street Journal reported that pharmaceutical company Eli Lilly was using homeless alcoholics from a shelter to test new drugs. Testing facilities now require test subjects to show proof of residence.

The most infamous human testing in U.S. history was the syphilis study at the Tuskegee Institute in Alabama.

In 1932 the U.S. Public Health Service recruited 399 African-American men with syphilis — mostly impoverished Macon County sharecroppers — promising them free health care for life. The researchers told the men only that they suffered from "bad blood" and never treated them for syphilis, even after the antibiotic penicillin became available in the 1940s to treat the disease.

The study ended only after it became public in 1972, prompting Congress to pass the National Research Act, which led to rules governing human testing. Among the requirements: an institutional review board to protect participants in studies and informing them about all aspects of a study, including risks, before they consent to testing.

Clinical trials are a big part of the extraordinarily expensive drug-approval process. According to Pharmaceutical Research and Manufacturers of America (PhRMA), getting a new drug approved costs, on average, $1.2 billion, with clinical trials accounting for 45 to 75 percent of that cost.

Youngquist is happy to be getting some of that money. His wedding is scheduled for June.

'Just another lab rat'

ClinicalTrials.gov, a U.S. government website, lists 153,457 studies, almost half of them in the United States. The site does not break down how many of those studies are Phase I, Phase II or Phase III. PhRMA doesn't keep track either.

Bob Helms, a housepainter and former union organizer in Philadelphia who has participated in 75 to 80 studies and trials, has tried to fill that void. For years, he published a jobzine, "Guinea Pig Zero," dedicated to giving guinea-piggers useful information about studies, such as the quality of food and accommodations.

"I think my contribution was just to get something on the table that said the scientific side of it is not the only side," he said. "The person doing it is not doing it to further medical science, humanity. They're doing it for a job. For money."

Now, Just Another Lab Rat (jalr.org) lists Phase I clinics in the United States and even offers a smartphone app, in conjunction with Study Scavenger, promising up-to-date information that allows "motivated potential research subjects to search for studies when it's convenient for them." The site also lists the amenities testing facilities offer, such as big-screen TVs, pool and foosball tables and movie libraries.

"I get paid to watch TV all day. That pretty much sums it up," said Paul Clough, 34, who started the website in 2004 and favors action movies and reality television. "Only 5 percent of the day you might do something related to the study."

He estimates there are 10,000 people like him who make their livings as professional lab rats. The Austin, Texas, native said he has participated in 70 or so studies in the past 10 years and has suffered nothing more than a rash and vomiting.

"I keep trying to quit. Most people do," he said. "They never do. It's too easy — the money. Once you do this for 10 years, you have no work history. It's kind of hard to go get a real job," said Clough, who fielded a call during a Phase I trial for "some cancer drug."

For the cause

But guinea-pigging isn't always about the money. Lifelong space enthusiast Heather Archuletta took a pay cut — and a break from San Francisco's IT world — to enroll in a NASA bed-rest study in 2008, one of only 24 test subjects chosen from nearly 20,000 applicants, she said.

She blogged about the experience, calling herself a "pillownaut" as she spent 54 days lying down with her head angled 6 degrees below her feet to simulate zero gravity. As Test Subject 5705 in a facility at the Johnson Space Center in Houston, she earned $10 an hour for each of the 16 hours she was awake each day. At the end of the study, after nearly two months in bed, standing was painful.

"It felt like someone was sticking knives into the soles of my feet," recalled Archuletta, 44, adding that her bone density has long since returned to normal. "You're dizzy, and it's hard to keep your balance."

The pain and discomfort will all be worth it if NASA sends a mission to Mars, she said.

"I desperately want humanity to get to Mars in my lifetime," she said. When a spacecraft lands on the red planet with astronauts aboard, Archuletta plans to say, "I was part of that. I helped them get there."

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