emo Liver Clinics and Generic Rebels

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6 years 9 months ago #1493

Hi Vicki,

Well that's great news that Geelong has forgiven you for being a generic rebel, and that the tide is turning in Victoria.

I went for a routine Fibroscan at the Gold Coast University Hospital today - it's been 14 months since my last, and no change (F0-F1), which was a relief. After your initial experience (that was you on Greg's blog wasn't it? - shameful response by the hospital) I was a little hesitant to disclose that I started sob/dac 6 days ago. But it turned out okay, the nurse was great. They are already monitoring several generic rebels, and the specialists are writing scripts. So I have pathology requests in place for weeks 4 & 12, backup if needed, and bloods taken today. Very reassuring. She did mention 'that doctor from Tasmania', but was unaware that the Buyers Club tests the generics as part of the deal.

According to her Gilead issued a statement in the past week or so that HCV DAAs WILL be on PBS by December and available by April. Which contradicts your information. Has the deal been done I wonder???

All the best with your 4 week results Vicki - hope it's an UND.


NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.
Last Edit: 6 years 9 months ago by Joy.
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6 years 9 months ago #1494

Hi Joy,
It will be interesting to see what happens tomorrow at the clinic.
It's starting to sound like a daytime Soap Opera! "The Days of of our Livers"

Who knows when the DAA's will be on the PBS. I haven't seen any media and I'm sure the Government will milk it. Surely Gilead would have to drop it's price considerably for Australia to afford it.

Stay tuned for the next episode of "The Days of our Livers"

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6 years 9 months ago #1496

BIG LOVE TO EVERYONE!!! ESPECIALLY GREGG, OUR REBEL HEART FOREVER AND DOKTER THE FREE MAN!!
Vicki wrote:

3 weeks ago I was the 1st patient on HCV generics that the Geelong Hospital Liver Clinic saw. Their initial reaction was horror. I was berated for being irresponsible and told I might not be able to be monitored by the clinic for my actions.

I was surprised that the clinic was so far out of the loop with what was going on considering the recent media attention.

I phoned the Melbourne St Vincents clinic and the Nurses there were very reassuring and told me of many rebel patients who are having great success. I could here the happiness in her voice as she spoke about this compared to the angry rebuke I experienced in Geelong. They also told me that Geelong Liver clinic had contacted them about a patient (me) for advice.

During last week I received a phone call from a lovely nurse at the Geelong Liver Clinic. She had been given the task to do the research and bring the clinic up to date. She apologised for the clinic saying, "We are just country yokels in the dark" .

Geelong is one of Victorias biggest regional cities an hour from Melbourne!

We talked for a while about the treatments and the frustrations the doctors and nurses face due to lack of access to both regulated and generic life saving drugs. She was concerned about the many folks who aren't computer savvy or don't have enough money to even buy the Generics.

Nurse also told me after the recent meetings in Sydney with doctors and the Government. The word amongst her colleagues is, that the "HCV DAA's would NOT be listed on the PBS in December for administration early next year".

The nurse asked if she could give my phone number to a few people who were interested in curing themselves with the generics but were nervous of taking this path.

"Oh well I'm not a doctor, I'm not sure about giving people my phone number at this stage. but I would like to help". I answered with bewildered caution.

So it seems they are up to speed and have been empowered with the knowledge of the success of the Generics and the approval to monitor patients like us.

This has given me much food for thought. Things are changing rapidly and hospitals are obviously getting on board with the the Generic Rebels. But still their hands are tied until they can prescribe these drugs themselves. this must be somewhat disempowering for them

How much of a load can the Buyers clubs take and how long will it be until everyone has access to drugs that could eradicate the HCV virus?

And....what about the many who don't have a computer or the 2 to 4K to buy generics? - What can we do to help?

I will attend the clinic tomorrow for my 4 week blood test results. I'll have to wait a bit longer for my 'Viral Load count' Exciting!!!!

A huge side effect from these drugs is love and compassion and the renewed energy to give something back as Dr Freeman and Greg Jefferys have shown us is possible.

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6 years 9 months ago #1528

Hello Vicki
Good to hear your story and that you persevered despite the discrimination. Also good to hear Geelong hospital have come on board and are supportive. Its a matter of education..even for the 'Experts'. I am waiting for Sof/Dac to arrive, in approx 2-3 weeks. I have support through my medical team at RPA liver clinic Sydney. They are treating other people who have accessed their own drugs. I would have found it very hard to take the drugs without their support. My specialist didn't provide me with a script, I saw my GP who wrote one for me, very willingly.
I wish you well.


GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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6 years 9 months ago #1536

Vicki wrote:


Stay tuned for the next episode of "The Days of our Livers"

ha ha "Like APIs through the hour glass, these are the Days of our Livers...

And I agree with you about the bonus of having more energy to spread the love like Greg and Dr James do...


NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.
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6 years 9 months ago #2074

Joan wrote:

Hello Vicki
Good to hear your story and that you persevered despite the discrimination. Also good to hear Geelong hospital have come on board and are supportive. Its a matter of education..even for the 'Experts'. I am waiting for Sof/Dac to arrive, in approx 2-3 weeks. I have support through my medical team at RPA liver clinic Sydney. They are treating other people who have accessed their own drugs. I would have found it very hard to take the drugs without their support. My specialist didn't provide me with a script, I saw my GP who wrote one for me, very willingly.
I wish you well.


That's great to hear Joan. I have to say I was given the opposite impression by my doc at RPA, admittedly I am not in a bad way as yet with F0 so maybe that makes the difference - but she definitely tried to dissuade me of the idea of accessing generics...it was more of the 'Wait, everybody will get it on the PBS early next year'. Although she has been saying that since 2013 heh

So I will likely be doing treatment alone with GP monitoring...I'm glad that you have had a more positive experience :)


And a great outcome for you Vicki, hope everything goes well.
.


GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
Last Edit: 6 years 9 months ago by zhuk.

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6 years 9 months ago #2090

Hello Zhuk

Thank you for the good wishes. Sorry to hear that you didn't get the support you wanted from the liver clinic. I hope you can get support from your GP. I became very sick last year and the virus escalated. Within a year my fibroscan went from 8.6 to 17 which sent off alarm bells. The specialist tried to get the New Drugs from Gilead through compassionate access but I was declined because I wasn't sick enough. So my option was Interferon. Which I declined. I think I am being supported by the liver clinic because I have to take action now as fortunately I don't have cirrhosis and don't want to wait to get it.

Hope your treatment goes well.


GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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6 years 9 months ago #2112

That great news you can get the help you need now Joan, before your condition worsens. I daresay you ware right that the reason the clinic wasn't amenable to my suggesting treatment is that my disease progression isn't very significant yet - but that is heartening that they are assisting some patients and haven't put the blinkers on re generics. Good to hear.

I hope all goes well with your treatment too, best of luck :)


GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26

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6 years 9 months ago #2127

Hello Vicki I live in Bendigo Victoria and am facing an 18 month wait at the Base Hospital before I even get to the Liver Clinic. I have purchased generic drugs from China through the Buyers Club and expect delivery within the next two weeks. I am very nervous but also excited to take the meds and to see the end of this virus. I was diagnosed in February this year.... no idea where, when or how I contracted it. I have struggled every day with the fear of living with this virus but acknowledge that there are many many people a lot worse off than me. My GP is supportive of me taking the generic meds.

I will post on here once I receive the meds and start my journey.

All the best


Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!

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6 years 9 months ago #2163

Hi all,
It sounds like some of the regional liver clinics are behind the eight ball. And many seem to have very long waiting lists for new patients. Knowing your genotype and weather you have any fibrosis via a fibroscan is important for getting your med combination right.

I got my doctor to make an appointment for me at the the Liver Clinic at St Vincents in Melbourne, as a back up when Geelong Hospital were trying to pursuade me to have a biopsy, instead of another fibroscan and generally acting pretty grumpy. Hepatitis C Australia suggested I do this, to get a second opinion, also suggesting that the City hospitals were more advanced in dealing with Hep C patients than their regional cousins. It seemed their current waiting lists weren't as long. I was able to ring the nurses there anytime for reassurance and advice. Which I'm sure you can do too.

I aslo suggested to the Geelong clinic that they might contact their colleagues in Melbourne to seek their advice on patients using Generic meds. They have done this and are now a bit better at dealing with Generic Rebels. Though, the nurse at Geelong is wonderful.

I cancelled my Melbourne appointment after a few more reassuring conversations with the nurses at St V's Melbourne.

I'm wondering, as word spreads of these new wonder drugs that "work". More and more folks with Hep C are going to be seeking treatment to what appears to be an already overloaded system. How many fibroscan machines are actively working? When will the Liver Clinics extend their opening hours?

It's one thing having these drugs put on the PBS or getting them via a buys club, but it's important that you know whether you have any fibrosis or other medical conditions that might influence treatment.

My biggest concern was getting my med combination right for a successful outcome. So far so good/great/fantastic!

It's wonderful that we all have got the treatment now. We are on this journey together, advocating for each other and other peoples lives who can be saved.

We will, keep on asking questions, keep on getting our doctors and specialists to keep up to date with treatment and monitoring.

Take care and keep on keeping on x

Last Edit: 6 years 9 months ago by Vicki. Reason: punctuation!

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6 years 9 months ago #2165

Hi Lynne

Welcome to the forum. Wow must have come as a shock to you. A great time to have hep c really (well you know what I mean). So glad you're onto this early. I found out in 2007 and it floored me really. So happy to have you on board with your journey. Theres no studpid or embarrassing questions here as we are all learning about these amazing new drugs. Em


Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
Last Edit: 6 years 9 months ago by emilio.
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6 years 9 months ago #2214

Hi all I purchased Meds yesterday and have got follow up care in New Zealand they are aware of what im up too and back me 100% and are supportive of those who want to liberate themselves. This clinic is run privately by clinicians who work in the public health system. Its really encouraging that I have support and that word is getting out about generics


SVR 24

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6 years 9 months ago #2215

As it should be. It's oh so liberating. All the best.

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6 years 9 months ago #2219

Amen to that Vicki :)


SVR 24

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6 years 9 months ago #2222

Hello again I made an appointment with a Specialist here in Bendigo just to arrange for Fibroscan etc. I am Genotype 1b with 3.13 million viral load. The Doctor at the Royal Melbourne was happy with my Fibroscan and also with the ultrasound....it appears that at present I have a fatty liver (which many people have anyway) but otherwise no obvious hardening/cirrhosis etc. I am aware just how "lucky" I was to be diagnosed through a bloody test which showed up liver function wasn't so good. I am not seeing the Specialist here again because he tried to more or less say that because my first husband was an IV drug user that is where I caught the Hep C (even though I told him I didn't use drugs and never had). Anyway I have a supportive GP and will be starting the med soon I hope (still waiting for delivery). I will contact the Hep C Clinic here in Bendigo to let the Hep C nurse know what I am doing. It will be interesting to see what sort of reaction I get.

Will post again once the meds arrive.

Lynne


Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!

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