Patients are buying the active ingredients that go into making the medicine off the internet and making their own capsules. The 'Chinese rat poison' that patients are gleeful about is a reference to the active pharmaceutical ingredients purchased in bulk from a Chinese manufacturer off the internet, which they are using to formulate their doses.
"A year ago, we did not have the access to Sofosbuvir combination, because of which we would buy the API from China and India and formulate our own drugs. Now, we see in countries like the US, Romania, Canada and the UK, patients are buying the API and formulating the Hep C drugs. People are doing this because desperate times call for desperate measures. The drug is too expensive for people to buy, which is forcing them to resort to these measures," Dr James Freeman founder of the FixHepCBuyers Club in Australia told ET.
...Jefferys explains buying a 12-week treatment of Indian generic Harvoni to treat Hep C genotype 1 will cost about $1,400, including shipping. To buy the API equivalent would be less than $750. The API route has also become an easier way to deceive the customs who get suspicious looking at the larger parcels of medicines that are shipped in bottles...For what it is worth, there actually is a FixHepCBuyers club website; dunno anything about that.
So here's what I want to know - who is making generic sofosbuvir in India? Is it coming out of the licensed plants in India? And if you're making generic sofosbuvir, who are you selling to? (If you're rolling your own sofosbuvir tablets, how do you know you're getting the right dose? You doing QC on that stuff? How do you even know it's the right material?)
Assuming this is actually happening, it seems that we find out what happens when you have relatively poor patients, unethical generic manufacturers, a high price for a drug and a globalized industry. Hard to say what to do (and I'm not a direct Gilead shareholder*), but it seems to me that lowering the price of Sovaldi to the point at which these generic manufacturers are run out of business might be a good idea.
Other weird questions: Has this happened before? If you were Gilead, what could you do about it? (Should you go and bust the sellers in India? Can you, from a legal perspective?)
*I'm sure I own Gilead stock indirectly via index funds.