For Hurley, visiting Mumbai was the trip of a lifetime, but the tourist attractions were simply bonuses. The main goal? To get a 12-week treatment for hepatitis C.
When Elle Hurley visited Mumbai for the first time, she could smell the spice in the air almost immediately upon landing. The daughter of two dry cleaners from Fort Worth, Texas, Hurley had dreamed of going to India for most of her life.
As someone who studied art and music, visiting Mumbai was the trip of a lifetime. She planned to shop in the city’s famous malls, sleep at a surprisingly affordable Four Seasons, and soak in the spirituality at Haji Ali.
These tourist attractions, though, were simply bonuses. Hurley had received a diagnosis of hepatitis C — a deadly virus that infects the liver. Though there was a cure, the sticker price for the 12-week treatment cost $84,000 USD.
Hurley’s insurance company wouldn’t cover the cost, so she flew to India to get the drugs.
Hepatitis C can sit for years without making a noise
Hurley discovered she was positive for hepatitis C during her second pregnancy in 2011 when a routine blood test showed she was carrying the virus.
At the time, Hurley was the retail district manager with Spirit Halloween, a costume store. When her doctor called her with the news, she was driving with a crew full of employees to dismantle their Halloween pop-ups and set up Christmas merchandise. “It hit me out of left field,” Hurley said.
She knew immediately how bad the situation was. At the time, there was no cure for hepatitis C, which is often called a “silent killer.” Since the virus can transmit both through sex and giving birth, Hurley was worried that her entire family was sick and that she could pass on a death sentence to her unborn child.
Hepatitis C is one of the leading causes of chronic liver disease, cirrhosis, and liver cancer. The World Health Organization (WHO) estimates that 71 million people have the disease globally. Though somewhere between 15 to 45 percent of people with the infection will spontaneously clear the virus, over 55 percent will develop chronic HCV infection.
According to the WHO, within 20 years, 15 to 30 percent of that group will go into liver failure. Before the disease starts to physically affect the liver, many people affected experience symptoms including nausea, fatigue, decreased appetite, joint paint, and jaundice.
Hurley visited an infectious disease specialist who told her that her antibody numbers were too low to do anything until she’d given birth. Her entire family was tested for the virus, and Hurley waited to give birth, worrying about the implications the diagnosis would have on her future.
Like 80.7 million people in the United States, Hurley was on Medicaid, and she realized this meant she didn’t have access to many of the clinical trials and experimental medications on the market for hepatitis C.
Every second of denied treatment can be like waiting for a death sentence
Dr. Hwan Y. Yoo, an experienced liver specialist at The Center for Liver and Hepatobiliary Diseases at the Melissa L. Posner Institute for Digestive Health and Liver Disease at Mercy Medical Center in Baltimore, Maryland, explained that getting the medication for hepatitis C isn’t always easy.
Access to treatment depends on a few factors: the insurance company, the categorization of the virus — which has six broad genomes — and the fact that many pharmacies don’t carry the drugs used to treat the disease. Then, as Hurley found, there’s the prohibitive cost.
“Some insurance companies, especially that insurance that belongs to Medicaid, have their own rules,” Yoo said in an interview with Healthline.
“They will treat patients only at a certain stage of liver disease. Early stage patients can wait until they have an advanced form of the disease because the price of the medication is so high. These insurance companies prioritize who is going to get the medication first,” Yoo explained.
Hurley didn’t want to wait to develop more severe complications from the disease. Knowing that she had a disease that could kill her, she sunk into a deep depression.
She struggled with the daily effects of the virus — she was tired all the time, developed granulomas on her lungs, and eventually lost her job and her health insurance. In 2013, two years after receiving her diagnosis, she realized there was a cure for hepatitis C. She lobbied hard to receive it.
But Medicaid wouldn’t cover the cost of the medication.
The out-of-pocket cost of the drug was $84,000, a figure so high Hurley knew it’d be impossible for her to ever take it.
“Basically, Medicaid made it so that unless hep C was going to kill me, like on the verge of getting a liver transplant, they wouldn’t cover the cost of the drugs. I had a family — a husband and two children — and the idea that there was something that could treat me that I couldn’t have, that was very hard.”
Then, Hurley’s mother called. She told Hurley that she’d seen an article about an Australian who went to India to receive a generic cure for hepatitis C. “I didn’t even know this was a possibility — my doctor had never mentioned it. I got off the phone with my mother and started hunting down as much information as I could,” she said.
Hurley’s internet search took her to Greg Jefferys’ blog on Facebook, the Australian her mom had told her about. She read his entire story in one sitting, then contacted him. “I have daily fears of orphaning my children,” she wrote in her email.
He emailed her back immediately, outlining the ways in which she could get a hold of the generic form of ledipasvir/sofosbuvir (Harvoni). “It has a 96 percent cure rate,” Jefferys told Hurley. There were options to ship the medication, but Hurley wanted the security of speaking with doctors and holding the medication in her own hands.
Visiting India was also a bucket list item.
“I’m actually very interested in seeing some Hindu temples when there so it’s a two birds one bucket list trip for sure,” she told him.
A risk worth taking, across the world, to save your own life
According to a recent study in PLOS, the generic form of hep C medication is extremely effective — as well as cost-effective — in curing the disease.
The generic version of the drug costs $1,200 for a 12-week treatment — even including a round trip flight to Mumbai, a stay at one of the nicest hotels in the city, and the money Hurley intended to spend sight-seeing. The treatment would cost significantly less than what Hurley would have had to spend in the United States.
Jefferys explained the technical details of what she’d need in order to get the medication in Mumbai. Hurley contacted her doctor so that she could get the tests completed before her flight. Instead of the implicit support Hurley assumed she’d get from her doctor, though, she found a medical professional who was reluctant to allow Hurley to travel to India.
“She refused to write a prescription for the generic or even do the tests that I needed to get done ahead of time. It took me a while to find a doctor who would be willing to do this for me,” Hurley said.
Though she had no cirrhosis at the time, Hurley had immense fatigue and neuropathy. She switched doctors and completed the required tests, and three months later, flew to India on British Airways.
She stayed in Mumbai for a week, soaking in the sights, getting sick with an obligatory stomach infection, and meeting with the CEO of Bull Pharmachem for a 12-week course of the treatment. She took her first pill the day she landed in the United States again.
Eight months after treatment, her blood tests showed she had cleared the virus. Upon hearing this news, Hurley burst into tears.
“I have discovered a family worldwide that is going through this same thing,” Hurley said. She’s heard horror stories of people having their generic medication seized at customs and immigration. She’s learned about a pharmaceutical lobby that’s trying to discredit the Indian generic, and she’s heard about a network of fraud that terrifies her.
But she’s honest about what led her to fly to India and take the medication. “When it’s your life, you’ll do anything. This was a risk I was willing to take.”
This story is part of Healthline’s series “The Era of Medical Tourism.” This is an alternative look into the cost of being healthy and what people will do — and how far they’ll go — to get the treatment they can’t afford or don’t have access to. What does it mean to take your future into your own hands?
Mariya Karimjee is a freelance writer based in New York City. She's currently working on a memoir with Spiegel and Grau (Random House).