1st December 2015
Hospitals in Australia I would not take my liver to:
Yes its a silly title and its mostly for Australians but it really gets up my nose that there are hospitals all around Australia that are still blocking their Hep C patients access to generic Hep C meds.
These are the hospitals where the specialists have either been telling Hep C patients to wait, wait, wait or, even worse, they are still treating people with Interferon and Ribavirin.
In my opinion the worst of these is the Princess Alexandra Hospital in Brisbane
Next worst are probably a couple of liver clinics in Sydney and Coffs Harbor.
A classic example of how these hospitals and their staff work is found in this email conversation I had with a patient from one of these two hospitals. It began in early September 2015:
I saw your story on ABC and would like to get these drugs as I have
suffered hep c for 15 years, how would I get these drugs?
I am currently on a waiting list but this has been taking for ever, I
have gone through a couple of trials and little success with interferon.
Can you help as I saw you can get this posted,
Once again I very much appreciate you taking the time to help me,
Thanks for your email.
The main issue when considering your options for treatment is your genotype.
As you most likely know the Sofosbuvir/Ribavirin treatment at best only has about a 68% success rate for genotype 1.
Currently Sof/Riba is the only generic Hep C med coming out of India, its a good option for G2 and G3 but you may also consider generic Daclatasvir from Mesochem in China which is a good option for G3 if combined with Sofosbuvir.
Generic Harvoni is expected to be available in India in December this year, this is a better option for G1 than the Sof/Riba.
Please feel free to write if you have any questions
p.s. Please remember that I am not a medical doctor and any advice I
give is purely based on my own personal experiences and observations.
Please seek professional medical advice on treatment options.
I have an appointment with my doctor on Monday night, I will have the information I require for my illness and will be in contact with you shortly after that.
On 25 Sep 2015, at 11:06 pm, I wrote:
Good Luck with the doctor #####
Sent: Wednesday, October 7, 2015 11:04 AM
To: greg jefferys
Subject: Re: Information on India #####
Our system takes its time, after several calls and a week of waiting I was
finally able to get a nurse to contact me and give me the details I need,
G 3A is my type,
I’m a relapser
Liver is in good condition
Low viral count,
They say by December they will have Harvoni approved for my use,
What is your opinion?
On 7 Oct 2015, at 1:47 pm, greg jefferys <email@example.com> wrote:
Ask them to assure you in writing that they will have Harvoni by
December... I will bet you $100 that they will not.
I bet they will not even guarantee next April, or next July. Wait wait wait... I’ve been hearing that song a long time, too long.
But I hope I am wrong
Finally in December this email arrived
Sent: Wednesday, December 2, 2015 6:41 AM
To: greg jefferys
Subject: Re: Information on India
Yes this government is useless!
I would like to go ahead and source these drugs from you if possible,
Yes sadly here we are in December and nothing on the PBS and the hospital has nothing to offer you. And you know you are not alone... all around Australia specialists and liver clinics have been telling patients with Hep C to not buy generic Hep C meds but to wait until December for them to be listed on the PBS and here we are in December and those same hospitals and clinics are telling people to wait until February.
And you know in February they will be telling people to wait until April and
in the intervening months some of those people they told to wait would have
got cirrhosis, or liver cancer or died!
Please find info attached on the generic Daclatasvir situation, the best treatment optrion for G3 according to the latest reports. As you will see there are several options now, including getting it from India or Australia. In contrast to your hospital I can promise that you will have these medicines in 7 to 10 days max.
After writing and posting the above spleen venting rant I started to wonder if I was not being a bit harsh on the doctors in Sydney?
Then to my astonishment a few minutes later I received a phone call (which is very rare) from a woman who had been a patient at the #### (Sydney) liver clinic for more than two years.
She told me that after two years of being told to wait and wait and wait for the new Hep C meds to come onto the PBS (part of Australia’s national health insurance) she finally decided to use Indian generic drugs to cure her Hep C.
She did the right thing and flew up to Sydney to discuss this choice with her Doctor. This involved considerable time and expense as she lives a long way from Sydney but she felt it was the right thing to do.
So she asked her doctor if he would write the prescription.
Well her doctor’s response left her stunned. Not only did he refuse to write the prescription he verbally abused her, told her she was being irresponsible, that she would lose all support from him and generally berated her.
Now this is a mature, well educated woman who works in the health industry and all she wanted was to be cured of her disease, which this clinic was not doing.
She was stunned!
She stood up and walked out without a word, on the verge of tears. But this is a woman who will not be bullied!
She had made up her mind she was going to get cured and so she would get cured.
She left this clinic and immediately went and saw another liver specialist at another liver Clinic; one that actually cares about the health of its patients (it’s one I have regularly praised in this blog). She immediately got a prescription for Indian generic Sofosbuvir and Daclatasvir and even as I write this she has begun her treatment. By the New Year she will be at “no virus detected” stage.
Was I being a bit harsh on the doctors at this Liver Clinic?
I don’t think so