New Delhi: A senior police officer in Odisha, a disability rights commissioner in Tamil Nadu, customs and airline officials around the country, health ministry bureaucrats, pharmaceutical company executives, public health activists and parents of children with epileptic seizures. This is the main cast of people who have been working tirelessly since the COVID-19 pandemic hit India in March 2020 to procure an important drug--vigabatrin--that helps prevent epileptic seizures in children.

While vigabatrin, which comes as a strip of 10 tablets, has always been bought and sold in India’s grey market, the COVID-19 pandemic and the lockdown broke down a system that was already precarious, an IndiaSpend investigation has found. It was easier and cheaper to source vigabatrin from the grey market before the pandemic than it is right now, families told IndiaSpend.

Although the drug is manufactured in India--by Dr Reddy’s, Granules India and the Israeli company Teva--it is for export only as no company has the license to sell it in India. Anyone in India who needs this medicine must take a circuitous route.

India’s lockdown, which began on March 25, hit the imports of all pharmaceuticals. With no new stock coming in, both patients and grey market vendors started running out of vigabatrin. Whatever residual stock remained with Indian vendors started getting sold at marked-up prices. So, Indian patients have begun to individually import small consignments into the country, though this is expensive for many and has put a vital medicine out of their reach.

In the fifth part of our series on the prices of healthcare during the COVID-19 pandemic, IndiaSpend examines how the prices of this non-COVID drug for epileptic children have shot up. In the previous report, we looked at how the price of tocilizumab, a drug being experimentally used for COVID-19, has gone up and how the drug is being sold in the black market. This series has also looked at the cost of hospital treatment during the pandemic, for both COVID-19 and other illnesses. (Read earlier stories in the series here, here and here).

Joint effort

In April, there were early reports about the shortage of vigabatrin. Arun Bothra, a senior police officer in Odisha, heard about this and on May 9, he tweeted an “urgent request to Indians returning from abroad!!” He said that children in India were struggling without vigabatrin and if those returning could legally bring some with them, they should. “We will pay & pick medicines at airport & deliver to those in need,” the tweet read. He began to work with health activist Vaishnavi Jayakumar in Chennai, tweeting to her, “Lets try to help all of them.”

Bothra’s tweets triggered a major all-India coordination, connecting distressed families with generous donors. He received a barrage of emails from people all over the world, offering to donate vigabatrin to families in India. “Some landed in my office in Bhubaneshwar, which my team dispatched to different parts of the country,” said Bothra. “Others came to different airports and we did our best to have it released and distributed, after coordinating with activists like Jayakumar.”

Bengaluru-based Shankar Raman’s seven-year-old daughter has cerebral palsy and needs vigabatrin everyday to keep seizures away. He saw Bothra’s tweet and although at the time he had only eight strips of vigabatrin left, he got in touch with Bothra saying he could offer two strips to any family in need. A family in Chennai needed it. Later, another family in Bengaluru asked for it and Raman agreed to part with two more strips. “Late that night, the Bengaluru police collected four strips of vigabatrin from my residence,” said Raman. “A network of recreational bikers, who had volunteered to help people in distress, were called, and some of them rode to Chennai that night to deliver the two strips.”

“I saw the tweet and wanted to help because I know how important this drug is,” Raman added. “And I know how serious it is for a child to not have this drug. We did not know at the time how long this lockdown would last and the shortage of vigabatrin would persist.”

A few days later, another family in Chennai wanted to donate two strips of vigabatrin, this time to a family in Bengaluru. But they were not sure how to get it across during the lockdown. It was the end of the working day for Johny Varghese, director, Commissionerate for the Welfare of the Differently Abled, Tamil Nadu, and there was no staff around to go collect it. Varghese picked up the medicine himself, then went to a post office and posted the two strips to the family in Bengaluru.

“The Tamil Nadu government set up a helpline in March for people to call and report the difficulties they were facing during the pandemic,” said Varghese. “We got calls about shortages of vigabatrin and started to look into this issue.”

The state managed to get some stock of the drug onto Vande Bharat flights which were bringing stranded Indians back to the country. Tamil Nadu has also placed orders for 8,000 tablets of this drug, Varghese told us. So far, they have imported 3,500 tablets and currently have a stockpile of 2,500. “We are giving these to patients for free,” he added.

Pandemic premium

Families in Tamil Nadu are fortunate that the state has procured this drug and will distribute it for free. In the rest of the country, however, people are struggling with high prices of vigabatrin.

The higher prices pinch more because children with epileptic spasms may need to take one to six vigabatrin pills a day for several years. This means, depending on age, weight and severity of the spasms, some patients need anything between 30 and 180 tablets per month.

Even though no company has a license to market and sell this drug in India, it was fairly easy to buy even from a local chemist prior to the pandemic, said Ankur Maniar, an Ahmedabad-based entrepreneur whose seven-year-old daughter has Leigh syndrome, and epilepsy comes along with this condition. She has been taking vigabatrin for six years now.

“Before the pandemic, we were able to buy vigabatrin for about Rs 700 per strip of 10 pills. By March, vendors were asking for upto Rs 3,000 per strip,” Maniar said, adding that he never thought he would become a “crusader” for vigabatrin. It was easier and cheaper to buy this drug before the pandemic in the grey market, he said, adding, “The pandemic has exposed the flaws in India’s drug regulation system.”

In the case of tocilizumab, which IndiaSpend reported on, COVID-19 patients are struggling to pay high prices for the drug on the black market. However, with vigabatrin, patients are finding it more expensive to buy it legally.

Caught between regulations and red tape

A loose network of parents, health activists and people like Bothra have been working to coordinate with people around India, to distribute strips of vigabatrin. “The government is talking a lot about ‘Make In India’,” said Swatti Bakshi, a Bengaluru-based volunteer with this network. “Even though this drug is made here, Indian patients cannot access it because no company has got a license to sell it here.”

Sensing the vigabatrin shortage, families in the network reached out to Sanofi, asking the company to find a way to sell Sabril to Indian patients. Sabril is made in France, not in India.

A Sanofi spokesperson told IndiaSpend they are trying their best to facilitate access to Sabril: “Because we do not have a license to sell this directly in India but want to help patients, we located a distributor in India who could import Sabril from Singapore, based on import applications submitted by each patient. We also subsidized the price of the medicines which came to India.”

In two consignments, 300 strips have been imported under this arrangement with Sanofi. It is being sold at Rs 1,750 per strip.

However, some patients’ parents said that Sanofi has not worked hard enough to make this drug accessible and affordable to Indian patients during the pandemic. “One family in the network imported Sabril from Malaysia for about Rs 900 per strip, including the cost of the drug, import duties and courier charges,” said a parent who requested anonymity. “Even in France, where Sanofi is based, the drug is available for about Rs 3,800 for six strips, or Rs 633 per strip. Many parents here have said they cannot afford to pay Rs 1,750 for a strip.”

Sanofi acknowledged this struggle in an email to IndiaSpend. “We are subsidising the price, however, it is still higher than the grey market… although now, at least, parents could be reassured that their child is at least consuming an original medicine… However, going forward it is going to continue to be difficult to source these supplies, especially since this need was not anticipated or in our purview. We will continue to do our best to coordinate with the distributor and the parents who reach out to us, either via our website or via patient groups,” the company said.

No easy options

The only other work-around is for Indian patients to apply for personal import licenses to India’s drug regulator. This allows them to import a small and defined amount of the drug for their own use. This process is not easy for many parents who are in urgent need and also works out expensive after taking into account customs duty and courier charges.

Families have been looking to Singapore, Dubai, Bangladesh, Canada, France, Malaysia and Greece for the drug.

“We have managed to get import licenses for 51 patients. Another 26 patients have come forward and would need to apply,” said disability rights activist Jayakumar. She has been keeping a close tab on all patients around India, including how many tablets they need per day, how many tablets they have left with them, and when they would need their next replenishment. For months, she has also been sending updates on these patients to the central health ministry.

The network of families working to ensure vigabatrin is available to those in need has had some success. For example, when the drug controller approves a patient’s application to import a drug into India, it is usually applicable only for three countries. But during the pandemic, officials at the drug controller’s office have been making a modification by hand on approved licenses that says the patient could import vigabatrin from “any other country” as well, and not just the three listed on their application. IndiaSpend has also reviewed these approved applications, which carry this handwritten note.

“This handwritten modification in our approval forms is very helpful and commendable by India’s drug controller,” said Maniar.

“A government official recently remarked to me that there was not enough of an incentive for the system to change just for a few thousand patients who need a medicine like vigabatrin in India. For us families, this drug means everything. For the system, it may not mean much. This is the uncomfortable truth,” said Maniar, adding that the official he spoke about was, in fact, helpful to the families struggling to procure this drug.

(Bhuyan is a special correspondent at IndiaSpend.)

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