SPECIAL SERIES : The Hustle Issue
Human Guinea Pigs
Medical research studies may hurt a little, but they pay a lot
 

Joanie Arvogast felt nervous and anxious entering the research ward at San Francisco General Hospital that early autumn morning. She had never heard of the drug, and people told her she was crazy to participate in the study. But she desperately needed money to pay off a debt and she could not count on her part-time job as a theatre usher to pay the bills. Her roommate had experience volunteering for medical studies, so when Arvogast saw the ad posted on Craigslist, she signed up.

Inside the cold hospital room, doctors connected her to a set of machines to monitor her vital signs. They gave Arvogast a beverage to drink containing cranberry juice, vodka and the date-rape drug gamma hydroxbutyrate (GHB). She started to feel sleepy, so sleepy she could not keep her eyes open. The GHB took affect and she fell asleep, having intense dreams. After what felt like a great nap, she awoke to an awkward moment. Doctors hovered over her, watching her every move.

By 3:00 p.m. she stopped feeling the effects of the drug and spent the rest of the day and evening in the research ward, watching an assortment of movies in her private room, catching up on her reading and taking naps.

Arvogast would spend four separate nights in the research ward undergoing the same procedure. Sometimes she drank the GHB-infused cocktail; other times it was a placebo (an ordinary cocktail). A month later she received a check for $800.

It has been over six months since completing her first study. Arvogast now has a full-time job and her debt has long been paid off, but she still has volunteered for medical studies involving caffeine and nicotine. Initially, Arvogast volunteered for the money, but now she doesn’t mind helping and she has even made friends with a few of the nurses in the hospital ward.

“They like me at the hospital,” she says. “They say I’m an easy patient.”

Arvogast is one of the bold, brave and sometimes broke individuals who use medical research studies to supplement their income. Arvogast and others donate their time and bodies, side effects be damned. But money isn’t the only motivating factor.

Stroll around U.C. San Francisco and you’re bound to find bulletin boards with flyers advertising research studies. Websites like Craigstlist are another hot place to advertise. Earn up to $900 per month to donate sperm, test high blood pressure medication for $500 or make more than $200 for being a good sleeper. But making what appears to be a quick buck is not always the case.

As a research associate at the UCSF School of Dentistry, Eric Gschweng is conveniently located steps away from the Oral Medicine Clinical Center. It is one of the reasons why the 25-year-old frequently participates in the tongue biopsy, a brave feat considering the procedure. After being injected with a local anesthetic, a clinician uses a punch biopsy tool (resembling a circular razor) to cut a portion of Gschweng’s tongue (roughly 1?4 of a pencil eraser). His contribution to assist the study of oral disease earns him $200. Gschweng’s advice for the medical novice? Don’t be scared. “Fear exaggerates the pain, but being poor necessitates the donation,” he says.

According to Kristopher Sarosiek of clinicalconnections.com, medical research studies or clinical trials vary depending on the organization and the study’s purpose. Healthy patient studies focus on the drug’s safety and its side effects. By testing on a healthy person, the organization can determine whether the drug is safe for everyone to use. Compensation ranges from $200 to $400 per day to test a generic version of a popular drug. Participants can earn up to $1,000 per day to try a drug not available to the public.

Studies that require a patient to stay in a clinic for a long length of time tend to pay the highest amount, says Sarosiek. He recalls a sleep study that required a patient to stay in a window-less room for one month to monitor the body’s ability to maintain its internal clock without sunlight. No clocks were allowed in the room and the patient was awakened at different times during the night. The patient made over $4,000 for the month-long stay.

Other clinical trials are geared toward patients who have an existing medical condition, such as diabetes. Instead of payment, patients can try a new medication created for the particular illness. Sarosiek thinks more people seek clinical trials that do not provide compensation because the studies hold promise for those who can’t afford current treatment or have no alternative because the drugs do not exist for their condition.

Peter Li* volunteers for money, but it’s the subject matter he finds more interesting. “There’s usually like three types of studies I really have interest in and will go out of my way to make it possible,” Li says. With his science background, he prefers trials dealing with physical performance, nutrition and especially male fertility. Currently Li donates his frozen sperm for use in a long-term study to determine how long sperm retain their shape and potency, earning $100 per donation.
No study is perfect. What about the side effects? “All that is discussed in the meeting beforehand,” says Matthew Meyers, clinical research coordinator at the UCSF Department of Clinical Pharmacology. During the inform consent process, the patient is told everything about the study, from the medication used to side effects experienced by other patients. If the patient is still interested, they endure the screening process, which includes disclosing the patient’s medical history and giving a blood and urine sample, “just to make sure what they’re telling us is true,” Myers says.

All clinical trials have to be approved by an Institutional Review Board (IRB) to make sure they are ethically responsible. “Doctors and nurses will take care of anything that may happen. If side effects get too severe, we completely remove them from the study and give them care,” Myers says. Li has experienced positive and negative side effects from trials. After finding out his bloodwork regularly came back borderline anemic, Li confirmed a hereditary condition called Thalessmia minor. The condition affects the size of his blood cells but fortunately for Li, he has no symptoms. However, he does remember shivering uncontrollably during an overnight stay for a hospital study that required blood be withdrawn at frequent intervals.

Arvogast says she didn’t mind doing the GHB and nicotine research studies, but she is hesitant to subject herself to untested drugs and chemicals that haven’t been exposed to humans and “things that glow.” The first time Gschweng underwent the tongue biopsy, the pain lasted several days. But by the fourth time, he was eating solid crunchy food an hour after donating.

Beginning volunteers should ask questions and trust their instincts. “Sometimes a subject doesn’t always listen to his/her own gut feelings/intuition about when to decline a study, especially if there is also a large financial incentive,” Li says. Websites like clinicalconnection.com and clinicaltrials.gov contain a lengthy list of questions to help volunteers conduct their own screening before agreeing to a study. “If the clinic is not able to answer those questions or to address those concerns then obviously it is a study you want to stay away from,” Sarosiek says.

For her next study Arvogast will be given GHB while using a driving simulator to test the effects of the drug behind the wheel. Money was her initial reason to volunteer for the first GHB study, but it has changed. “I was getting paid, but you know if I can help out in any way as far as research, I’m happy to do it.”

*Name has been changed because source doesn't want family to know that he donates sperm.

CONTACT JONES AT AJJ@SFSU.EDU

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