Ahmedabad: Generations of families choose to be clinical trials guinea pigs! – ET HealthWorld


Ahmedabad: Generations of families choose to be clinical trials guinea pigs!
Ahmedabad: They earned Rs 100 to Rs 200 picking up rags. So, years ago, when agents arrived in their locality and offered them thousands of rupees to take part in clinical trials, residents scrambled to take up the offer – Rs 5,000 was more than they’d earn after a month of hard labour.

Currently, members from nearly half of the 250-odd families of the Lal Bangla-Nehrunagar locality in Hatkeshwar area in east Ahmedabad regularly volunteer to be guinea pigs for clinical trials for drug testing in humans for Rs 5,000-20,000 payout depending on the trial. Ironically, despite many reeling under health complications, lack of good job opportunities has lured even the second generation to risk their lives for survival’s sake!

The Makwana family is a case in point. Two decades ago, Shakri Makwana, who was recently widowed and left with the responsibility of single handedly raising her son, dared to sign up for a clinical trial. The widow decided it was worth the risk for a handsome payout of Rs 5,000 offered which she could use to educate her only son Sanjay.

When nothing majorly untoward happened to her, an emboldened Shakri signed up for 15-odd trials over the years.

Today, repeated experiments have taken a toll on her health. “She is not my healthy, happy mother. She began suffering constant dizziness, weakness, fever and even memory loss. She is a mere shadow of herself,” says Shakri Makwana’s son Sanjay.

Ironically, Shakri’s ill health forced Sanjay to drop out of school and take up rag picking but Rs 50-100 per day was not enough to put food and medicine on their plates. So when an agent approached Sanjay to be part of a clinical trial, Sanjay signed up. “I needed money for my mother’s treatment and also for my marriage,” he says.

Sanjay started going for trials in 2015. “I would get Rs 5,000 for each trial. I could never earn that much rag-picking. With the money I gathered from the trials, I conducted my marriage. Later my wife Jashi, too, started participating in the trials,” says Sanjay. He confesses his health has taken a major beating due to repeated drug experiments.

“I would experience high fever, nausea and headaches following the trials. Earlier, I could walk for 6-8km to collect plastic waste and rags. I constantly feel giddy and also suffer from fits,” he adds.

Naresh Makwana and his father Prakash, who live in the locality, have undergone clinical trials near Gota. “My father began going for these studies and I joined later as we wanted to make a pucca house and get my sister Bela married,” says Naresh, who developed rashes on the skin and intermittent fever following the trials.

His sister Bela, too, took part in the studies and suffers from gynaecological and gastro-related issues. “Due to my poor health, I am still unmarried at the age of 32,” she reveals.

Lakshmi Vaghela, a local who volunteers for an NGO, says the locality which has residents mainly dependent on rag picking for a living is a fertile point to recruit poor people ready to test experimental drugs for a price.

“It is tough for people to earn a livelihood. This enables agents of clinical research organizations to easily recruit them into taking part in clinical research which they call ‘study’,” says Lakshmi.

According to Lakshmi, entire families have been caught in this trap. “There are some 100 persons in the locality who sign up for clinical research but are not aware of the possible complications. Multiple generations have become involved in this as they cannot get proper jobs and suffer from health issues,” she said.





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