The air conditioning is slightly too cold in the clinic waiting room, despite the arid heat outside. Xochitl, a twenty-two-year-old single mother who has struggled with substance use disorder since she was seventeen, pulls up her hood to hold off the chilly draft. She was laid off recently, and heard she could make some extra cash through participating in a clinical trial about a new drug to treat substance use. Her four-year-old son, Jacob, squirms next to her, staring wide-eyed at a man who has just entered the clinic demanding a prescription for more painkillers while threatening a nurse. As the nurse tries to address the man with a security guard at her back, Xochitl hears another voice call out: “Zoch…Chochi?” 

Long accustomed to this name-butchering ritual, Xochitl and Jacob enter the small examination room. It’s even colder than the waiting room. After a few minutes, Dr. Jones walks in.  “Hello, Chochi, my name is Dr. Jones. Thank you for your interest in our clinical trial. I’m sorry, could you please remove your hood? Thank you, I like to see your whole face! We will be administering doses of hydroxamethalcortisone at variable intervals over the course of the trial period, with an approximate duration of 3-9 months. You must come to the clinic three times a week for us to administer the dosage. This is a randomized controlled trial, and you may or may not be in a placebo group. The drug works on the neurotransmitters that control dopamine levels. There are some potential side effects. It may cause vomiting, diarrhea, rash, heart palpitations, fever, and, in extraordinary cases, death. Don’t worry, you will be monitored closely throughout the study to ensure your safety. We will do a full medical history to control for worst case scenarios. Do you have any questions?” He asks this as he hands her the forty page informed consent packet. Xochitl notices the 10 point, single spaced writing.  

“How much will I get paid?” Xochitl asks, thumbing through the pages.  

“$25 per visit. I know it’s not much, but compensation is determined by the IRB at the university. I have very little control over that, unfortunately. Bureaucracies, can’t live with them, can’t live without them.” 

Xochitl glances at Jacob, who is fascinated with a tattered car magazine on a small table in the corner of the room. Sighing, she nods her assent. 

“Great, thank you, Chochi. I’m sorry, how do you pronounce your name? It’s beautiful, I’ve never heard it before.”

“So-cheel,” she says, and smiles. “It was my grandmother’s name, too.” She had other questions, but Jacob started to rip up the magazine while making "vroom, vroom" noises. She sets the packet on the table to pick up Jacob. 

“So-cheel. Great. The nurse will come in with all the paperwork. Cute kid! Well, I’m off. There’s a dozen other people to talk to today. The nurse will answer any other questions.” Xochitl hears more from the nurse, and signs the waiver without reading it. $25 is $25. 

After two months participating in the trial, Xochitl never saw Dr. Jones again. She didn’t feel any effect from the treatment. She thought about that word Dr. Jones used: placebo. She looked it up on Wikipedia: “A placebo is a sham substance or treatment which is designed to have no known therapeutic value.” “A sham?” she thought, “Why would they give me a fake drug?” She felt like she had been taken advantage of. “It’s not worth the money.” She never showed up again. 

Everyone knew that Monica’s house was the de-facto town hall. There, she ran a bilingual childcare that doubled as a home apothecary that provided folks with herbal tinctures and teas that she harvested from the mountains. She learned these from her grandmother, who learned from her grandmother. For a few generations, they practiced their herbalism in secret, away from the disapproving eyes of those who worked at the clinic in town that was built there after the Second World War. 

Monica’s daughter, Xochitl, was named after her grandmother. Xochitl had a good heart but fell in with the wrong crowd in high school. She got knocked up, then got hooked on painkillers she was given at the clinic to deal with lingering pain from a motorcycle accident. She almost had her son, Jacob, taken away from her by the CYFD, after she lost her job at the gas station for missing too much work. Xochitl needed some cash, and didn't know where to go. Monica and Xochitl’s relationship had been strained for years. Xochitl was afraid to leave Jacob alone anywhere. CYFD could show up at any moment. 

Dr. Jones was anxious to begin his clinical trial. He thought the new drug, hydroxamethalcortisone, had real potential to address substance use disorder. He read that this town had one of the highest rates of substance use disorder. The trial would be a chance to help the community. Plus, it was a place with many potential participants who are typically left out of clinical trial research. 

Dr. Jones heard about Xochitl from Danny, who worked at the local bar. Dr. Jones wanted to get to know the community, and so went where we felt as comfortable as possible. Danny and Xochitl were friends since childhood, and Danny was worried about her after she lost her job. When the doctor mentioned that there could be money involved for participating in the clinical trial, Danny’s ears perked up. He texted Xochitl right away. 

Susana overheard Dr. Jones and Danny. She worked at Monica’s as a part-time nanny, and knew about Xochitl’s struggles and how it tore at Monica. The next day, at church, Susana mentioned to Monica that Dr. Jones was in town doing a clinical trial for substance use disorder. Monica, who went to university in the city, was ambivalent about clinical trials and western medicine in general. But she also wanted something that could help her daughter and other young people struggling. 

Dr. Jones had learned enough about the community to know about Monica’s house. He decided to approach Monica and ask for her support. “I’ll help you out, Dr. Jones, but you gotta agree to some of my rules.” Dr. Jones would be in control of the data collection, analysis, and other technical aspects of the trial. But he would be accountable to Monica, who would help recruit people and be sure they heard about results of the trial. Monica also offered to use her degree in biology to explain more technical language to folks. Finally, Monica would be a person to relay concerns from community members to Dr. Jones. Dr. Jones, as he was leaving, turned to Monica and said, “One last thing, please call me Eric.” Nodding, Monica allowed herself to feel some hope. 

Over the course of the trial, participants met once a month at Monica’s to discuss how the trial was proceeding. They organized and recruited on Facebook and WhatsApp. Eric, who had commitments back at the university, would connect digitally when he couldn’t be present. Not everyone bought into the trial. Derek took a few people with him after he watched a YouTube video about government mandated vaccines implanting chips in people’s arms. Monica did what she could to translate Eric’s jargon in ways that couldn’t be misconstrued, but she couldn’t convince everyone. Other griped at the measly $25 per visit. Monica hoped they would buy her argument that the potential reward was greater than that small cash amount. 

Xochitl came to the second meeting. She saw the opportunity to earn some cash and maybe get some help. Her friend Crystal was participating too, and she drove her. Monica was thrilled. It was the first time in years Xochitl and Jacob had come by the house. “Hi Xochitl,” Eric said as she walked in. Surprised, Xochitl looked at Monica. “This dude pronounced my name right on the first try!” Monica smiled as Eric and the rest of the group laughed. 

The trial has a long way to go, but the community has taken ownership over their own participation. Eric, Monica, Xochitl, and the rest of the group look forward to continuing the trial through to its end.