When doctors told Australian Greg Jefferys he had Hepatitis C and the disease was destroying his liver, the devastating diagnosis was compounded by the cost of a cure. Unable to afford Sovaldi, hailed as a miracle drug, the 61-year-old flew to India, one of a growing army of patients seeking out low-cost, life-saving medicines on the subcontinent.
Their illnesses vary -- Hepatitis C, cancer and HIV are among the most common -- but they are almost always desperate, seeing in India their only hope to save their life or that of a loved one. They contact underground "buyers clubs", make the trip to India to buy from a legitimate distributor or seek out shady online pharmacies promising mail-order cures.
India earned a nickname as "the pharmacy to the developing world" for its tough stance on patents. Successive governments have taken a view that patents should be granted only for major innovations, not updates to existing compounds -- allowing domestic manufacturers to make generic versions of drugs at vastly lower cost.
Sovaldi, chemically known as sofosbuvir, is made by US pharmaceutical giant Gilead and costs over five and a half crore rupees for a 12-week cycle of treatment in the United States. Rejected for a patent in India, generic drug makers, some licensed by Gilead, produce versions such as Mylan's MyHep,that cost around six lakhs a cycle.
More than 130 million people live with chronic Hepatitis C worldwide, according to the World Health Organization, and 500,000 die each year from related liver diseases. Since writing a blog, Jefferys receives 150 emails a day from people in the US, Britain and elsewhere asking for help.
When Loon Gangte, a Delhi-based HIV activist was diagnosed with the virus in 1997, the price of treatment was far beyond his reach. But the advent of generic Indian anti-retrovirals saved his life -- and made the country a global centre for cheap, lifesaving HIV drugs. Gangte is open about carrying medicines overseas for others and says in a decade he has been stopped just once, at Thai customs, and fined. Most countries allow patients to import small amounts of medicines only for personal use.
Pharmaceutical firms say India's disregard for patents will stifle innovation or make drugs commercially unfeasible -- Gilead paid $11 billion to buy the developer of Sovaldi in 2012. But after losing several high-profile patent battles, it appears drugmakers can do little to combat the Indian government's will or that of overseas patients determined to import drugs.
Perhaps the riskiest route is online pharmacies -- a search on e-marketplace IndiaMart turns up dozens claiming to sell generics -- with no guarantee against counterfeits. But legal channels are springing up, including Delhi-based Ikris Pharma Network, set up in August 2014, which does not sell drugs but connects patients to genuine distributors.
