26th July 2015
I received the email below last night and found it interesting. The writer claimed that the website of Hepatitis Central has removed the contact details of all Indian liver specialists or hepatologists who can treat Hep C in India. I checked the website and it is true, there are none listed. I have tried to contact Hepatitis Central for comment or feedback but have not been able to find a contact link on their website. There may be one there (somewhere) but I can not find it. Anyway read the email and make up your own mind. The hepatologist I saw in India was trained in Edinburgh in the UK and practiced 15 years in London before returning to set up his practice in his home town of Chennai. Does Hep Central really believe there are no competent doctors in India or is there another reason. I would like to hear their side of the story. If anyone reading this has connections with Hep Central please ask them to email me.
Hi Greg,
... I have an interesting observation that you would be interested in.
Here is this website - http://www.hepatitiscentral.com- that used to have listed Indian doctors who would treat Hepatitis C. Last year there were some in India. I looked today - and they have erased them all! Like as if they all disappeared.
Now it seems clear that big pharma made them do it. Obviously, hepatitiscentral.com cares for human lives so much that they black out doctors that can save lives - in India. Disgusting, isn’t it? I lost all respect for them.
Best regards,
#######
Make up your own mind about that email. I don’t know why they took down the contact details for Indian doctors.
Here is another interesting email regarding the situation in the USA, which contains some sound advice to people seeking to access treatment in the USA.
Hi Greg,
Just wanted to tell you what is going on in the US. You are 100% correct in your guess for why there are more emails re generics. One thing, people still should appeal these denials and go through the entire process until they reach a clear dead end - it may take months. (It sucks). Just because there is a tightening at Gilead’s end doesn’t mean that people can’t still win approval through their insurance.
Also, yesterday the FDA approved daclatasvir (Daklinza) (with sofosbuvir) for GT3. We were all caught by surprise. Now we will see if insurance will cover it. I suspect it will be hard to get. The wholesale acquisition cost of twelve weeks of Daklinza is $63,000. That would practically be a bargain if it could be prescribed without Sovaldi, which it can’t. Sovaldi costs $84,000 for a twelve-week course, so with Daklinza the total will cost of $147,000. That is $1750 per day for two pills.
The daclatasvir issue is important for a number of reasons, particularly because it removes Ribavirin from the treatment regime for people who are intolerant to it. For most people the existing treatment reports, such as EASL, suggest that daclatasvir also reduces the treatment period from 24 to 12 weeks whilst lifting the SVR rate.
The appeal of daclatasvir also means that, like generic Harvoni, the scammers will be out there in force. One apparent scam has already surfaced. This is a website promoting a supposedly generic version of daclatasvir supposedly made in Bangladesh by a company called AuraPharma, selling Aurahep, or Aurhep as daclatasvir. My friends in India have checked this out and there is no such company registered in Bangladesh or India. Further it has no presence on the Internet other than through a very suspect “press release”. So please be wary of scams related to daclatasvir.
As I mentioned earlier I and my friends are working hard on the daclatasvir issue and hope to have some kind of news about it soon.
It continues to be very frustrating that these wonderful new drugs are out there, ready to save lives and cure this terrible disease but are only available to the wealthy or those fortunate enough to have very good insurance cover (and sometimes even that is not enough.).
