Human guinea pigs "band together" and win a pay hike

Human guinea pigs "band together" and win a pay hike

Two accounts by human lab rats who undertook successful strike action for better pay.

[This article by Robert P. Helms originally appeared in The Industrial Worker of January/February 2003. Some of its phrasing was edited to make it more accessible to the non-guinea pig readers of that labor newspaper, and that has been preserved here.]

I am one of the hundreds of thousands of healthy people in the United States who serve as paid volunteer test subjects in clinical trials that determine the safety of experimental drugs. Our work falls between the legal status of a hospital patient and a temp worker. Our compensation is based on the time involved, how many procedures are needed, and how invasive and discomforting the procedures will be. We pay taxes on our earnings as "independent contractors," and our relationship with the research facility lasts only as long as the "informed Consent" document stipulates. However, we are not discussed as employees in medical literature. Instead, the focus is on protecting (or failing to protect) our rights and safety, just as though we were hospital patients.

In early December 2002 I entered a study at Philadelphia's Thomas Jefferson Hospital, in a group of 20 men. We were given low doses of an anti-anxiety drug (enough to cause some drowsiness but too little for a mood change). We were obliged to defecate in a basket so that the staff could search through the stool for the remains of the drug tablet. A catheter tube was also inserted into a vein and we gave about 15 blood samples during each period. The diet was regulated so that we all got the same very dull institutional meals.

The schedule had five sections in which we stayed in the hospital for four days, and then we were released for 36-hour periods, except for the break over Christmas and the New Year. We were obliged to refrain from drinking alcohol or using any other drugs (not even aspirin or vitamins) for the entire duration of the experiment which, with pre-screening and follow-up appointments, lasted seven weeks. The hospital was conducting the experiment for Merck Pharmaceuticals, the company seeking government approval to market the new drug.

Because the experiment was fairly long and called for an unusually distasteful procedure, the recruiters invited only the most experienced and reliable guinea pigs on their list. A newcomer to the trade is prone to misunderstand the whole affair and not complete a study for any of a hundred reasons. I've done at least forty studies at Jefferson alone, and most of the others had as much or even more experience than I do. Three of us happen to know each other well, and most of us knew each other slightly from earlier studies.

I was also known both to the other volunteers and to the Jefferson staff for my journal Guinea Pig Zero, which deals with this very subject. In 1996, in fact, I evaluated Jefferson as the best of six research units for its respectful, excellent staff. My high regard for the place has not changed since then, but now they have policies regarding me: the journal and its anthology are not allowed in staff work areas and they may not buy publications directly from me. I don't mind, because other units have barred me entirely from their premises.

The pay we originally agreed to for this study was $3,350. Before the first segment of the study was over, every one of us agreed that the pay was too low. As veteran lab rats, we knew that the rate should hover around $200 per day, with some variation from one facility to another and the details of a given study. During the screening period, some staffers could not deny that the pay should have been higher, and guinea pigs were comparing it unfavorably to other ongoing gigs in the area. We all knew of stories where lab rats had done something to pressure the company for more money or better conditions, so our situation provided a good opportunity for a concerted effort. A few dates into the study, I wrote up one-page memorandum that respectfully said we wanted to re-negotiate the package and thought we should get $4,500.

When gathering signatures and pitching it to management, I took pains to avoid giving the impression that the argument was coming mainly from me. Another guy walked the paper around the ward, and I signed my name in the middle of the list. Within a day or so we had all but one man's name on the sheet, and the lone holdout went to the boss after we had handed it over and asked to see it so that he could sign it too. Thus he went from being the most shy to being one of the boldest among us. When we made our presentation to the head nurse and the unit director, about six of us did the talking.

When the job was planned, it was to spread over a longer period in the fall season and be all over before Christmas. The breaks were to be three days long and each week was to have the same schedule. Various delays occurred, but the sponsor still wanted the job completed in 2003, so the schedule was compressed into a much shorter period (the staff wound up doing long overtime shifts and often sleeping at the unit). We volunteers were now expected to refrain from drinking through the whole holiday season. The feces collection exposed us to unpleasant smells that had not been considered in the compensation. An old fringe benefit had been phased out before this study began: the volunteer telephone was now restricted to local calls instead of allowing long-distance on the "honor system." Despite all these changes, the payment had not been adjusted.

Other strategies were used to boost the pressure. We kept referring to better-paying studies that would soon begin within a mile of Jefferson. This meant that some of us could drop out mid-way through the study, screwing up the science and causing a major financial catastrophe for the researchers. Anyone who bolted would be paid pro rata for the time he had put in. I suggested we ingest flexible vinyl propaganda scraps, so that the staff would find little notes reading "more money" in our poop, but many found the idea too vulgar –- go figure!

We were promised a yes-or-no answer before the holiday break, and the bosses assured us that they basically agreed with our request. It remained for them to get the drug company to agree. The promised deadline neared, and tension increased as unrelated issues came up. Two guys were caught breaking the dietary rules by burglarizing a cabinet and gobbling down snacks between meals. Staffers remarked that those guilty of such bad conduct didn't deserve a bonus. In response, we loudly talked about pulling a hunger strike or refusing to eat outside our rooms, in order to keep the pay issue clear of any other concern.

On the evening before the first sub-group was to leave for the holidays and we guinea pigs were making more and more noise about being blown off, the unit director summoned everyone to the lounge for an announcement. They had gotten the nod from Merck two days earlier, but they had only just received a signed agreement over the fax machine. The payment would be increased by $800, which is less than we asked for but plenty of money. We all cheered. Before the meeting broke up, the head nurse emphatically stated that we could not just "band together" and put the sponsors over a barrel in the middle of an experiment. She said that this was an unusual case, and that she herself had miscalculated the figure because of special circumstances.

Over the years I have been asked whether human guinea pigs would start a union, and I've said that it's logistically farfetched and that we would suffer a lowering of status if we were to be included under the Labor Relations Act. Patients and lab rats hold a stronger hand in the courtroom than workers do, and the effort I have just described would have been a failure had it been aimed at union recognition or had we used a union rep to speak for us. However, the head nurse was wrong when she said we couldn't do this again. The guinea pig workforce may be too fragmented and fluid to form even an unofficial union, but the drug industry is extremely cash-rich and competitive. This makes the industry able to throw a bone to small groups of savvy volunteers.

The victory at Jefferson demonstrates that healthy lab rats certainly can and should "band together" and demand changes in their contracts when the need arises.

Human Guinea Pigs Organize and Win

[This article by Dave Onion appeared in defenestrator (Philadelphia's anarchist newspaper) and the PhillyIMC website in April 2003.]

The drug study is familiar to many Philly anarchist activists. Often with too much going on to be able to work regular jobs, some of us find ourselves choosing the alternative exploitation of leasing our bodies to huge pharmaceutical companies as human guinea pigs for monetary compensation.

Early December, right after the start of a study to gain the multinational drug company Merck FDA approval for a yet-to-be-released anxiety medication, 20-odd subjects of the study got together in the lounge of Jefferson Hospital's Clinical Pharmacology Unit and complained angrily about the nature of the study we'd just started. Though it initially seemed to pay near average ($3300), the study was much more intense than any of us had expected. For one, it stretched out over Christmas and New Years (during which time we were allowed no alcohol or coffee) with the first period ending immediately before Christmas making most guinea pigs' Christmas preparations especially difficult. Our single day off every four days was near worthless free time considering we would spend the day scrambling to catch up on our daily lives and then not even be allowed to hit the bar afterwards. On top of this, our "PK days" every four days were grueling, with blood draws nearly all day. Also the pay, once we'd calculated our hourly wage equivalent, was a measly $6 an hour. Further vexation came from Merck. As one of the largest and richest corporations on the planet (raking in over $8 billion in profits in 2000), Merck was cutting costs in the unit to the point of trying to scale back on $5 meal tickets given to guinea pigs after a screening (usually after fasting from the day before).

The study was made up, for the most part, of seasoned veterans in the study world, including three anarchist activists, though most of us knew each other from past studies. After some discussion, during which our feelings of getting screwed proved mutual, Bob Helms, Philly's local anarchist historian (also in the study) drafted up a letter to Merck demanding an additional $1500 for the study. The letter cited our pay, the intensity of the study and reminded Merck we were aware of the going conditions and pay rates for other studies going on. The one guinea pig who wouldn't sign on later enthusiastically asked for the letter back after some subjects suggested to him the possibility of appropriating his unearned scab pay on the way home from the bank. Now everyone was on board. The letter was sent off to Merck via the unit's head nurse with a verbal message that a good number of us were seriously considering not returning for the second leg of the study if our demands weren't met, in effect putting hundreds of thousands of Merck money on the line.

In the meantime, despite the relative misery of consistently terrible food, TV over-saturation, bruised arms from failed subcutaneous vein searches, the study became territory for unusually interesting interactions, partly inspired by the unusual conditions of guinea pig work place class struggle. A good amount of dialogue took on a very political character. Represented in the study were blacks, whites, Moslem, anarchist, Christian, queer, a number of let's just say "extreme heteros," even a belligerent right wing capitalist (with a weakness for civil liberties). With CNN and the insane president looming constantly on the screen, the seemingly inevitable war against Iraqis became a constant theme of discussion, with near unanimous agreement that the boy king was off his rocker. At one point frustrated with a near total abstention of imperialist fervor in the study, our capitalist friend (incidentally very enthusiastic about our demands to Merck) left the room screaming "Is there not one fucking American in this study?" Another brief moment of inspiration came while watching In the Name of the Father, a film on the struggle of a Irish man framed as an IRA combatant. Mostly taking place in prison with a theme of struggle for justice and prison conditions, the film was a constant reminder of our own situation. Life in a drug study is strangely reminiscent of life locked up. The aesthetics, the boredom, the covert exchange of small (in our case, food) items, the people you meet ... (though food at CFCF [a city jail–- Ed.] is without a doubt better than that at Jefferson). Given the nurses' un-prisonlike treatment of us, our voluntary status and that we were getting paid for this, we tactfully refrained from a "unit riot."

It was some time before we heard back from Merck. As a fair number of us were seriously considering walking out for more profitable or simply less grueling activity, we wanted an answer before the end of the first period. As this date approached, guinea pigs became increasingly restless and we started talking about ways to step up the pressure. One suggestion was to ingest notes reading "more money" which the nurses would be obliged to fish out of our shit. But many of the nurses, already working long hours and with their own beefs with Merck (having to retrieve half digested pills from our shit for instance) were on our side. And for the most part we mutually recognized each others' conditions. Some were starting to feel the head nurses were stalling or simply hadn't even passed on our note. Finally, just a couple days before the end of the first period we were called into the lounge and the announcement was made that Merck agreed our study deserved better pay and would add an extra $800 to our checks. Needless to say, we were jubilant. Not quite the $1500 we'd asked for, but most of us expected less if anything at all.

Taken from the Guinea Pig Zero website: