TOPIC:

I purchased my drugs, harvoni, through the buyers club, but my doctor said that he wont support me if i take these medicines. i dont know what to do, but i really want to start the treatment. any help would be really appreciated

What country?

Australia

I would direct your doctor to the local hospital Infectious diseases clinic & in the meantime as long as the meds are the right type for your geno type (check this site) start taking them. Your local doctor sounds to me like one of those people that went to uni once in there early twenties got a degree & sat back for a decade or 3. Regards Angus

Hi apcail,

There are many doctors, both GP and specialist in Austalia who now support use of these generic medications although some are opposed and others just don't know enough to be comfortable but we should be able to provide some guidance.

Perhaps if you could tell us a bit more about your situation, we could provide further advice. You don't need to give any detail that will identify you but the more you can tell us the better ideas we may be able to provide.

When you say "my doctor" do you mean your specialist/GP? And is this a family/private specialist/GP type clinic that provides all your medical support or a bulk billing or hep clinic type place that you just go to when sic? Has this doctor been treating you for your hep c? Are they opposed to you taking this treatment or just not comfortable with supporting you through it?
What part of Australia are you in, and is it a major city or a rural area?

<edit> just noticed the title says "hep dr" and yes there are still a few who are not supportive but the questions remain much the same. It would help if you can tell us a bit about your hep too. Genotype? How long? Fibrosis? Etc.

Hello Apcail,

I am sorry to hear this has happened and am happy to monitor your treatment.

My father Dr John Freeman, FRACP who is a Consultant Physician sent me an email:

James
This is ridiculous. What happens about this?

He also said he would be happy to monitor you and suggested that your doctor's behaviour is out of line with the expected duty of care.

Consider this. If you came to me as a GP and said "I smoke dope for my chronic pain" would it be reasonable for me to say "I refuse to be your GP because...."

In this email from back in early December of last year you will not that Professor Greg door asked me to let Greg Jefferys know that both he and St Vincents we supporting patients taking generics

From: GP2U Telehealth <This email address is being protected from spambots. You need JavaScript enabled to view it.>
Date: 4 December 2015 at 16:44
Subject: Fwd: RVR Results for CG
To: greg jefferys <This email address is being protected from spambots. You need JavaScript enabled to view it.>

Hi Greg,

A few bits below (see email trail)

1) Greg Dore has asked you to let people know that he and St Vincents are now officially on board.
2) I had a transplant patient from RPA in Brisbane today who tells me that the consultants at RPA had a meeting on Tuesday and they are now also willing to monitor patients on generics.

[snip]


Generic treatment is safe and effective and hundreds of patients have benefited. You don't need permission to do what is best for your health.

My specialist referred me to get harvoni from a man named greg jeffereys, who referred me to "Fix Hep C". i had done a lot of research into the fix hep c buyers club and have the drugs now. i just went to see my specialist and he said that he hadn't seen these drugs before, asked me why i didn't go through greg jeffereys, so due to this he will not support me if i decide to go a head with these meds. now he has me starting on the treatment that the pbs is supporting. It is just such a waste to go through all this just to have it be shot down.

So your specialist supports generics, wrote you a script to go through Greg J, but dId not recognise the drugs obtained through Buyers Club (Twinvir?).
The specialist now plans to support your treatment with branded Harvoni, which I can't see as a bad outcome. I am sure someone will buy the generics off you.
Which state do you live in, by the way? I am curious why the specialist trusted Greg J so much but did not know about the FixHepC connection and the other generics.

.

So sorry to read if this Apcail, I know how stressful this kind of thing can be in many ways.

I am in the UK, which is behind in many ways re Australia in its thinking. I went to my GP armed with Dr Freemans 'GP Cheat sheet' (above) and lots of info regarding 'Supply chain integrity' and he has now referred me to a new specialist who is more open and up-to-date with the latest info.

I'm not sure how things work re referrals in Aus? but if your GP is onboard, he could re-refer you to a more open minded Dr and by the look of the posts above, you have just the one offering their services.

Do not lose faith, you will get there in the end, more and more Drs are seeing the good results and coming round to the idea.

Good luck.

I reckon if you have the drugs now, start taking them now. They will be the same drugs you would have to wait till March to get under PBS. Harvoni is just the registered brand name for sofosbuvir + ledipasvir which is exactly what you would have got through Buyers Club, presuming that's what you were prescribed.
Technically if your specialist referred you to Greg Jeffreys who referred you to Buyers Club, you did get them through Greg J. Your specialist is being an arsehole (someone had to say it).

Dr Freeman has offered to monitor you. Make an appointment with him via GP2U (or personally if you are in Hobart) and arrange that.

Good on you Sonix tell it like it is, some of these doctors need exposing, the pussy footing around their behavior , enough. Go for it Apcail, offend his ego and save your vital organ. Poodle

Sonix nails it, I was going to suggest the same thing last night but was tired and thought I better wait until I have had some sleep before having a rant.

We have an emoticon for rants now.....

# rant

Hi Apcail and Sonix,

I expect I am in the category of taking generic meds (since late October 2015) that I would be discussing with my specialist (the free PBS version) in early April 2016. Some five months to then of HCV wrecking my liver is my view.

I have a lot of sympathy for the position medicos find themselves in - they like to be in control and given the stakes, so they should. But this later day plague has run rampant and until recently there has not been the meds to reasonably control it; it appears there now is.

I have a lot of sympathy for people who invent things and come up with meds that cure diseases like this. They should be compensated and given the protection of patents to ensure they have a reasonable go at getting some pay back - payback, not gouging.

But ...... We are in the situation we are in and want to get better. My view is that we would be fools and somewhat irresponsible if we didn't. Hard place to be in; but it makes the question of what to do meds wise, easy (at least for me).

I expect you will find this forum a good sense of support information and emotionally, and often a good read when someone decides to have a rant. I have watched many members through their postings move from arranging treatment to starting treatment and if this is the outcome for you, the support is here. Much more than I remember in the Interferon days when we felt like grateful recipients of the poisonous nectar someone else enabled our getting.

yours

J.

Thanks Sabrecat,

A thoughtful and well expressed summation that I agree with. The only other comment I would make is that while the decision process was also very easy for me, we need to be mindful that for some it may take longer. However as you say this forum can and does provide information, support and encouragement as people work through that process to arrive at what is their decision.