It’s been three years since Lili — a pseudonym — was diagnosed with HPV, and she has the doctor’s office routine down pat. After countless consultations, treatments, and second opinions, she knows what to look for in her test results and all about the major drugs out there. But this time, all the 40-something accountant could do was smile sheepishly as she explained to her gynecologist how she’d fallen for yet another scam cure.
As with so many medical scams in China, it all started with a seemingly innocuous waiting room chat. The country’s overcrowded top-tier hospitals are infested with so-called medical or pharma intermediaries: scammers who earn commissions by posing as patients and persuading sick people to seek treatments at unregistered medical institutions or buy unapproved or counterfeit drugs.
It’s easy to write off their victims as ignorant dupes. But what about Lili? She has been in and out of hospitals so many times that she knows the system like the back of her hand, yet she’s been tricked three times in three years. Over the course of a year’s worth of fieldwork at a top public hospital in Southwest China, I realized the problem isn’t the patients themselves, but the country’s overwhelmed medical system and the inherent uncertainty of the treatment process. Put them together and you have the perfect feeding ground for quacks and cheats.
Lili’s three experiences of being scammed all began as a casual chat in the waiting room with someone she thought was a fellow patient. At China’s better public hospitals, it’s not uncommon to have to wait half a day before seeing a doctor. And once a person’s name is called, they have only a short window of time — generally no longer than half an hour, and sometimes only a few minutes — before the doctor needs move on to the next patient. These long, anxious periods of waiting give mediators plenty of time to identify and win the trust of their victims.
In the month after her pap smear first came back positive for HPV, Lili had to go back to the hospital four times to take tests and pick up her results. When she overheard two other “patients” in the waiting room talking about another hospital where it was much easier to get an appointment, she jotted down the hospital’s name and decided to go there for her next exam.
It didn’t take long for her to realize something was amiss. Her new doctor frightened her with the potential complications of her condition and urged her to undergo surgery immediately. When Lili took the results back to her regular doctor for a second opinion, she was told that she’d fallen victim to a scam.
The experience made Lili more cautious, but not enough to avoid being duped again. She eventually underwent surgery at the behest of her regular doctors, but she continued to test positive for HPV. At each visit, she asked questions like, “Why has everyone else been cured except me?” “Did I do something wrong?” and “What if it never gets better?” But no one had any answers.
Meanwhile, her usual clinic was so full that Lili barely had time to open her mouth before someone else would burst in and start talking with the doctor. Even when she did manage to get a question in edgewise, her doctor simply repeated the same advice. Worried she’d be seen as a nuisance, Lili rarely pushed the issue.
So it went, until one day, Lili’s nervousness before entering the doctor’s office and her disappointment afterward were observed by an intermediary posing as a patient. This 40-something woman told Lili that she was once just like her: She’d been treated for HPV for what seemed like forever without success. Presenting herself as a compassionate, but disinterested bystander, the woman opened up emotionally to Lili before sharing the key to her recovery.
“She told me that her tests finally came back negative after she’d started taking a certain drug,” Lili told me. Although her doctor discouraged her, Lili was frustrated by the professionals’ lack of practical answers and she decided to take the chance. “I had pretty much lost hope, but I figured I’d give it one final shot.”
It wasn’t until after staff at the gynecology clinic saw a sudden influx of patients all asking about this same, “super effective treatment” for HPV that they realized there were probably scammers squatting in their waiting room. The ploy is simple: Take advantage of the anxiety and desperation that patients experience by selling them certainty. The intermediaries know their highly personal accounts will resonate with most patients better than medical jargon and uncertain diagnoses.
Of course, this is only possible because of the lack of effective communication and trust between doctors and patients in clinical settings in China. Many patients are fed up with the typical approach at public hospitals, which revolves around numerical values on tests rather than their experiences and feelings. Meanwhile, the uncertainty and risks inherent in the diagnositic and treatment processes make the already shaky doctor-patient relationship all the more tenuous.
This atmosphere of mutual distrust between patients and doctors has led to the rise of patient communities, in which patients diagnosed with the same disease reach out to each other for compassion and support. These bonds are easily exploited by scammers, who peddle false hopes to long-term patients looking for a cure to their woes. The ways out they propose, whether a more convenient hospital or a more effective medication, all have one thing in common: They give patients something tangible they can cling to in a system full of doubt. Questionable or counterfeit drugs ranging in price from hundreds to tens of thousands of yuan have been successfully sold in this way to desperate patients like Lili.
Lili’s most recent slip-up came three years after her HPV infection was first detected. Although her doctors have done everything they can and Lili has been actively cooperating with their prescribed course of treatment, no one can say for sure just how long it will take to completely eradicate the virus from her system. Frustrated, Lili decided to try traditional Chinese physiotherapy — specifically, a treatment called qu gong han, or “dispelling uterine chill.”
The deep purple marks left on her body by moxibustion and cupping offer a more visible, tangible sense of getting better than the cold data her doctor can give her. Yet, despite spending thousands of yuan on therapy, her HPV tests are still coming back positive.
Translator: Lewis Wright; editors: Cai Yiwen and Kilian O’Donnell.
(Header image: Patients wait in the corridor of a hostpital in Zhongshan, Guangdong province, Sept. 21, 2016. Wu Jin/Southern Metropolis Daily/People Visual)