CHAPTER 13
Interrogation Room C
West Jakarta Police Detention Center
Jakarta, Indonesia
Kate leaned back in the chair and thought about her options. She would have to tell the investigator how the trial had begun. Even if he didn’t believe it, she had to get it on the record in case she went to trial. “Stop,” she said.
The man paused at the door.
Kate set her chair down and put her arms on the table. “There’s a very good reason why my trial adopted those children. There’s something you should understand. When I came to Jakarta, I expected to run this trial like any other trial in America. That was my first mistake. We failed… and we… changed our approach.”
The little man turned from the door, sat down, and listened as Kate described how she had spent weeks preparing for patient recruitment.
The trial had hired a Contract Research Organization (CRO) to run the trial, just as they would have in the US. In the US, pharmaceutical companies focus on developing a new drug or therapy, and when they have something promising, they hire a CRO to test it for them. The CROs find medical clinics with doctors interested in clinical research. The clinics, or sites, enroll willing patients into the trial, administer the new drug/therapy, then test them periodically for any health problems — adverse events. The CRO keeps close tabs on every site in the trial, reporting results to the sponsor/research organization, who makes their own reports to the FDA or governing body in countries around the world. The ultimate goal was a trial with the desired therapeutic effect without any negative or adverse effects. It was a long road, and less than 1% of drugs that worked in the lab ever made it to pharmacy shelves.
There was only one problem: Jakarta, and Indonesia at large, had no autism clinics and only a handful of specialty practices focusing on developmental disorders. Those clinics weren’t experienced in clinical research — a dangerous situation for patients. The pharmaceutical industry was tiny in Indonesia, mostly because the market was small (Indonesia imported mostly generic drugs), so very few doctors were ever contacted about research.
The CRO came up with a novel concept: engage parents directly and run a clinic to administer the therapy. Kate and the trial’s lead investigator, Dr. John Helms, met with the CRO at length, searching for any alternatives. There were none. Kate urged Dr. Helms to move forward with the plan, and finally, he agreed.
They built a list of families within 100 miles of Jakarta that had any child on the autism spectrum. Kate booked an auditorium at one of the nicest hotels in town and invited the families to a presentation.
She wrote, re-wrote, and revised the trial booklet for days-on-end. Finally, Ben had barged into her office and said he would leave the trial if she didn’t just let it go; they were ready to recruit. Kate relented, the pamphlet went to the ethics committee, then the printer, and they prepared for the event.
When the day came, she stood by the door, ready to greet each family as they arrived. She wished her hands would stop sweating. She wiped them on her pants every few minutes. First impressions were everything. Confidence, trust, expertise.
She waited. Would they have enough booklets? They had 1,000 on hand, and although they had sent only 600 invitations, both parents could show up. Other families could show up — there was no reliable database or registry of affected families in Indonesia. What would they do? She told Ben to be ready to use the hotel copier just in case; he could prepare copies of the highlights while she talked.
Fifteen minutes past the hour. The first two mothers appeared. Kate dried her hand again before shaking vigorously and talking just a little too loud. “Great to have you here—thank you for coming—no, this is the place—take a seat, we’ll get started any moment—”
Thirty minutes past the hour.
An hour past the start time.
She circled the six mothers, making small talk. “I don’t know what happened—what day did you get the invitation?—no, we invited others—I think it must be a problem with the post…”
Finally, Kate led the six attendees to a small conference room in the hotel to make it less awkward for everyone. She gave a short presentation as one-by-one, each of the mothers begged off, saying they had children to pick up, jobs to get back to, and the like.
Downstairs, at the hotel bar, Dr. Helms got drunk as a skunk. When Kate joined him, the gray-haired man leaned close and said, “I told you it wouldn’t work. We’ll never recruit in this town, Kate. Why the hell— hey-ho, bar keep, yeah, over here, I’ll have another, uh-huh same thing, good man. What was I saying? Oh yes, we need to wrap it up, quickly, I’ve got an offer in Oxford. God I miss Oxford, it’s too blasted humid here, feels like a sauna all the time. And, I must admit, I did my best work there. Speaking of…” He leaned even closer. “I don’t want to jinx it by saying the words No. Bel. Prize. But… I’ve heard my name’s been submitted — this could be my year, Kate. Can’t wait to forget about this debacle. When will I learn? I guess I’ve got a soft heart when it comes to a good cause.”
Kate wanted to point out that his soft heart had certainly driven a hard bargain — three times her salary and his name first on any publication or patents — despite the fact that the entire study was based on her post-doctoral research, but she held her tongue and swallowed the last of her Chardonnay.
That night she called Martin. “I can’t—”
“Stop right there, Kate. You can do anything you set your mind to. You always have. There are 200 million people in Indonesia and almost seven billion people on this tiny planet. And as many as half of one percent could be somewhere on the autism spectrum — that’s 35 million people — the population of Texas. You’ve sent letters to 600 families. Don’t give up. I won’t let you. I’ll make a call tomorrow morning to Immari Research’s head of funding, they’ll continue funding you — whether that hack John Helms is on the study or not.”
The call reminded Kate of the night she had called him from San Francisco, when Martin had promised her Jakarta would be a great place to start over and to continue her research. Maybe he would be right after all.
The next morning, she walked into the lab and told Ben to order a lot more study booklets. And to find translators. They were going out to the villages. They would widen the net — and they wouldn’t wait for families to come to them. She fired the CRO. She ignored Dr. Helms protests.
Two weeks later, they loaded up three vans with four researchers, eight translators, and crate after crate of the trial books printed in five languages: Indonesian/Malay, Javanese, Sundanese, Madurese, and Betawi. Kate had agonized over the language choices as well: over 700 distinct languages were spoken throughout Indonesia, but in the end, she had chosen the five most commonly spoken in Jakarta and throughout the island of Java. She would be damned if her autism trial would fail due to a communication breakdown.
As with the hotel in downtown Jakarta, her preparations were an entirely wasted effort. Upon entering the first village, Kate and her team were amazed: there were no autistic children. The villagers weren’t interested in the booklets. The translators told her that no one had ever seen a child with these problems. It didn’t make any sense. There should have been at least two, maybe three potential participants in every village, possibly more.
At the next village, Kate noticed one of the translators, an older man, leaning against the van while the team and remaining translators went door-to-door.
“Hey, why aren’t you working?” Kate had asked.
The man shrugged. “Because it won’t make any difference.”
“The hell it won’t. Now you better—”
The man held up his hands. “I mean no offense, ma’am. I only mean you ask the wrong questions. And you ask the wrong people.”
Kate scrutinized the man. “Ok. Who would you ask? And what would you ask them?”
The man pushed off from the van and walked deeper into the village, past the nicer homes. On the outskirts, he knocked on the first door, and when a short woman answered, he spoke quickly, in a harsh tone, occasionally pointing at Kate. The scene made her cringe. She self-consciously pulled the lapels of her white coat together. She had agonized over her wardrobe as well, ultimately deciding that projecting a credible, clinical appearance was the order of the day. She could only imagine how she looked to the villagers, who were mostly dressed in clothes they had made themselves from scraps taken home from the sweatshops or the remains of partially-disintegrated hand-me-downs.
She realized the woman was gone, and Kate stepped forward to question the man, but he held up a hand as the woman returned to the door, pushing three children out to stand before them. They stared at their feet and stood still as statues. The translator walked from child-to-child, looking them up and down. Kate shifted her weight a bit, contemplating what to do. The children were healthy; none showed even the slightest signs of autism. At the last child, the man bent down and shouted again. The mother quickly said something, but he yelled at her, and she fell silent. The child nervously said three words. The translator said something, and the child repeated the words. Kate wondered if they were names? Possibly places?
The translator stood and began pointing and yelling at the woman again. She shook her head furiously, repeating a phrase over-and-over. After several minutes of the translator’s badgering, she looked down and began speaking in low tones. She pointed to another shack. The translator’s voice was soft for the first time, and the woman seemed relieved by his words. She herded the children back inside, almost cutting the last one in half as she quickly closed the door.
The scene at the second shack unfolded much like the first: the translator shouted and pointed, Kate stood awkwardly, and the nervous villager presented her four children then waited with worry in her eyes. This time, when the translator asked the child, he said five words, names Kate believed. The mother protested, but the translator ignored her, pressing the child. When he answered, the large man sprang up, pushed the children and their mother aside, and burst through the door. Kate was caught off guard, but when the mother and children followed into the home, she did as well.
The shack was a crowded, three room hovel. She almost tripped walking through it. At the rear of the home, she found the translator and woman arguing more vehemently than before. At their feet, a small child, a gaunt child, was tied to a wooden beam that held the roof up. He was gagged, but she could hear low rhythmic noises coming from his mouth as he rocked back-and-forth, hitting his head on the beam.
Kate grabbed the translator’s arm, “What is this? Tell me what’s going on here.”
The man looked from Kate back to the mother, seemingly caught between his master and a caged animal whose volume and hysterics seem to grow by the moment. Kate squeezed the man’s arm and jerked him toward her, and he began explaining. “She says it is not her fault. He is a disobedient child. He will not eat her food. He will not do as she says. He does not play with the children. She says he does not even answer his own name.”
They were all classic signs of autism, a severe case. Kate looked down at the child.
The man added “She insists it is not her fault. She says she has kept him longer than the others, but she can not—”
“What others?”
The translator conversed with the woman in a normal tone, then turned to Kate. “Beyond the village. There’s a place where they take the children who won’t respect their parents, the ones that disobey constantly, that won’t be a part of their family.”
“Take me there.”
The translator coaxed more information out of the woman, then pointed toward the door for them to leave. The woman called after them. The man turned to Kate. “She wants to know if we will take him.”
“Tell her yes, and to untie him and that we will return.”
The translator led Kate to a patch of deserted forest, just south of the village. After an hour of looking they had found nothing, but they continued searching. Occasionally, Kate heard the leaves and trees rustle as game moved about. The sun would set soon, and she wondered what this forest would be like then. Indonesia was entirely tropical; the temperature was nearly constant from day-to-day and season-to-season. The Javanese jungles were dangerous, untamed areas, home to all sorts of snakes, large cats, and insects. No place for a child. In the distance, she heard screaming and the translator call to her, “Dr. Warner, come quickly.”
She dashed across the dense forest, tripping once and fighting her way through the overgrowth. She found the translator holding a child, even more gaunt than the boy at the shack. Even with his dark brown skin, she could see the dirt and grime caked on his face. He fought the translator’s hold like a caged banshee.
“Are there any others?” Kate asked. She saw a lean-to, a ragged shelter about 50 yards away. Was there a child lying there? She started for it.
“Do not go there, Dr. Warner.” He tightened his grip on the child. “There are no others… to take back. Please help me.”
She took the child’s other arm, and they escorted him back to the vans. They gathered the research team, then retrieved the child that had been tied to the beam, who they learned was named Adi. The child from the forest had no name, and they knew they would never find his parents or anyone who would ever own up to what had been done to him. Kate named him Surya.
When the research team assembled at the van, Kate cornered her translator. “Now I want you to tell me what you did back there — exactly what you said.”
“I think maybe you do not want to be knowing, Doctor.”
“I think I do definitely want to be knowing. Now start talking.”
The man sighed. “I told them you are a humanitarian organization who is doing child welfare—”
“What?” Kate said.
The man straightened. “That is what they are thinking you are anyway, so it makes no difference. They do not know what this clinical trial is. They have never heard of such a thing. Look around you, these people live just as they did a thousand years ago. I tell them you have to see their children and that you will help any that need help. Still they do not trust it. Some believe they will get in trouble, but many simply worry word will get around. Here, it is a dangerous thing to have a child with problems, people keep them out of sight. If word gets around, the other children will have problems finding a mate — they will say, ‘maybe you have his child and he is a problem like his father’s brother.’ They will say ‘it is in his blood.’ But the children tell the truth when I ask them to name their brothers and sisters. Children do not yet know to lie about this.”
Kate considered the man’s story. It had certainly worked. She turned to the team: “Ok. This is our new approach.”
Dr. Helms stepped toward Kate and the translator. “I won’t do it. Lying to a parent to enroll a child in a clinical trial violates basic medical ethics and is simply morally wrong.” He paused for effect. “Regardless of their circumstances or the community’s social norms.” He stared at Kate and then the other staff.
Kate interrupted his revelry. “Suit yourself. You can wait in the van, and so can anyone else who wants to leave these kids here to die.”
The doctor turned to her to fire another volley, but Ben cut him off. “Well, I’m in. I hate waiting in the van. And killing kids for that matter.” He turned and started packing up the gear, only pausing to ask the other staff for help.
The remaining three assistants reluctantly began to help, and only then did Kate realize how on the fence they had been. She made a mental note to thank Ben, but the pace of the day soon picked up, and she forgot.
At the next village, the team tossed out the trial booklets, but when the villagers began collecting them, the team shifted to handing the booklets out: as insulation for the villagers’ homes. The act of goodwill helped to corroborate their story as aid workers, and it was nice for Kate to see the booklets she’d spent so much time on go to good use.
Dr. Helms continued protesting, but the rest of the staff ignored him. As the vans filled up with children, his protests tapered off, and by the end of the day, it was clear to everyone that he regretted his actions.
Back in Jakarta, he cornered Kate in her office one night, long after the other staff had left. “Listen Kate, I’ve been meaning to speak with you. After, um, some consideration, and, to be frank, after seeing some of the effects of this work, on, uh, the children, I have to say I’ve decided that we are well within the norms of medical ethics and my personal comfort zone, and thus, I am, well, quite comfortable leading this trial.” He moved to sit down.
Kate didn’t look up from her document. “Don’t sit down, John. There’s something I’ve been meaning to tell you as well. Out there in the field, you put your safety — your personal reputation — ahead of those children’s lives. That’s unacceptable. We both know I can’t fire you. But I simply can’t work with you on a trial where children’s lives are at stake. If something happened to one of them, if you put them in danger, I couldn’t live with it. I informed the trial sponsor, Immari Research, that I would be leaving, and the funniest thing happened.” She looked up from the paper. “They told me they wouldn’t fund the trial without me. So you can either resign or I will, in which case you’ll lose your funding, and I’ll simply start the same trial with a different name. Oh, and by the way, the movers are coming to pack up your office tomorrow — whatever you decide, you’ll have to find a new lease.”
She walked out of the office and left for the night. The next day, Helms left Jakarta for good, and Kate became the project’s sole investigator. Kate asked Martin to make a few phone calls, some favors were exchanged, and the study became the legal guardian of every child enrolled.
When Kate finished her story, the interrogator stood and said, “You expect me to believe that? We’re not savages, Miss Warner. Good luck telling that story to a jury in Jakarta.” He left the tiny room before Kate could respond.
Outside the interrogation room, the small man walked up to the rotund police chief, who put his sweaty arm around him and said, “How did it go, Paku?”
“I think she’s ready boss.”