emo GAJ's world is changing

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6 years 9 months ago #3066

"Well, this afternoon there was a knock at my door and when I answered it there was a little package on the step.........."

I had decided to use something like the above sentence to introduce myself, explain a bit about why I am here and then use this thread to chart my progress over the next 168 days........but I've changed my mind about that and now think I will just post my progress into my signature.

See how easy that was? I changed my decision......just like that!!!

And the reason I made that change was quite simple, I want to use this thread to talk with you about change itself, because change isn't always easy.

For some change can be exciting, invigorating and liberating, for others it will be a time of doubt, fear and even anger. Often it can be all of these things at once and difficult to reconcile your feelings towards.

...........as Garth put it in the movie "Wayne's World"

Attachments:

G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:

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6 years 9 months ago #3067

This is a time of great change in the Hep C world thanks to people like Dr James, Greg Jefferys and nameless others who are working towards allowing us to access these new DAAs. And those of us posting here can and have seized the opportunity to surf this wave of change. Which is fantastic!

So what is my point?

Well, I'm seeing quite a bit of negativity towards some in the medical profession who aren't "on board" yet.
I understand that in many ways; since being diagnosed I have also experienced many of the things others are complaining about. Seemingly uncaring specialists, GPs and nurses who had little or no sympathy. Who kept telling me to wait, who kept downplaying my symptoms, etc, etc, etc.

And ummm......yeah, just like in any job there are probably some who aren't suited to their role, particularly if that requires "customer contact".

But I've also, over time, considered it from their perspective:

- Most I suspect went into their profession for noble reasons, they wanted to help others, maybe even save a few lives?
- Somehow they ended up in the Gastro/Hep field and dealing with Hep C
- Initially there was no treatment to cure their patients, the best they could do was minimise the impact.
- Then Interferon became available and gave a little hope but with horrendous sides.
- Then Peg/Riba with a little more hope - but still bad sides - such bad sides that most patients refused treatment, and many of those that did treat were surly/grumpy/agro during their treatment.
- And they have to break the bad news to the non-responders and relapsers on a regular basis, and effectively say "I failed".
- Then more recently DAAs started to filter through. Our medico thinks "Finally! Something that works! I can do what I spent all those years training for: help people, even cure them!"
- "IT COSTS HOW MUCH!!!"
- "Now my ungrateful patients are blaming me because they/government/insurer can't afford these new drugs."

Does that sound like the sort of job you would greet with a smile every day? Yeah, me neither.


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 6 years 9 months ago by Gaj.
The following user(s) said Thank You: Joy, Chejai, mikaere

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6 years 9 months ago #3068

So all those medicos should be dancing in the streets now that people are able to source their own DAAs at reasonable cost shouldn't they?

Hmmmmm.........so why isn't that happening?


Well, remember Garth?

That's right, you got it, CHANGE.

It's scary for most people, even those in the medical profession.

Some medicos will adapt to it quickly and start surfing the DAA wave with us almost immediately.

Others will need to sit on the beach for a while and watch before they become confident enough to take the plunge.

There are those who may never do more than dip their toe in the water and will always insist on having the water wings of government subsidy or the lifesaving reels of insurance payments behind them.

Those of us who are already surfing or waiting for our boards to arrive need to convince them that the water is safe and warm. We can do that by calmly owning our own health, politely asking for assistance with monitoring, smiling and thanking them when they agree, and smiling and politely thanking them for listening before moving on and finding someone else if they refuse. Sharing our SRV celebrations with them and showing them that these drugs work, but not not blaming if by some tiny chance we don't succeed.

Of course, there will also be some who will feel so threatened by the change that they will actively fight against it with every breath. This is just human nature, please forgive them. Fighting with them will only harden their stance and cause you unnecessary stress.

Anyway, enough from me for now. What about you?


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 6 years 9 months ago by Gaj.
The following user(s) said Thank You: Joy, Vororo, mikaere

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6 years 9 months ago #3070

I think they need to be 'gently encouraged' to open their minds.

I think they also need to consider that many patients have waited months for an appointment, travel to it and then are met with a negative experience.

I think their should be talks on how to make it a positive experience, even is there is still a wait for treatment or a non-practical response. There is absolutely no need to add to patient anguish.

Compassionate point though !


GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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6 years 9 months ago #3071

Thanks LG,

I should have noted that to some extent I was referring to the Aust experience which appears to be a bit better than UK/US at the moment.

What does apply worldwide is that this change has happened in 6-8 weeks. Until then it was just internet scams and 'maybe happened' rumours so it will take time for the profession to adjust but we can help speed that process.

While I do have some compassion for a medical profession that has probably had to 'harden' itself to its patients to survive, I am more interested in how we and they can become US and work together for the future though you make very valid points about ways they can improve their side of the partnership.


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 6 years 9 months ago by Gaj.
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6 years 9 months ago #3076

Yes, the problem in the UK is, at the moment, very different GAJ. I was treated quite dismissively by my local Hepatology clinic when both I and my GP practice (who have been as supportive as they could be) asked them to help. I found a Hepatologist working out of a local private clinic who was prepared to help. He has a 'day job' running an NHS Hepatology clinic abou 50 miles from here. I've been sounding him out about NHS involvement with generics, and he in turn has been sounding out his local NHS Trust managers. Said managers went to London for a meeting with the Bigwigs,and came back with the directive: No NHS involvement with generics; not even monitoring. There are also the issues of Big Pharma funding of NHS and private research, and the little 'treats' that Big Pharma gives out to individuals in the NHS.

How do you go about educating/persuading someone who knows which side their bread is buttered on? I agree about not antagonising healthcare workers (though many seem to get antagonised by us simply trying to rationally discuss generics with them). Let the NHS catch up and come onboard if it wants to, and it'd be great if they did. Get any involvement from them that we can. But don't wait back for them to help, it's more important to move on with developing our own alternative networks until the NHS sees sense.

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6 years 9 months ago #3079

"I think they need to be 'gently encouraged' to open their minds."

Ha ha, love the way you put it LG. Would that gentle encouragement include a large sharp object?

Look, my NHS doc really is a good guy, but he has a whole clinic to run. The rest of the clinic staff are mostly lovely people as well, but everybody is towing the party line. I've made a few swipes at bringing the genetics into the narrative but the results were not favourable. I think they are all genuinely motivated by the fear that I will get bad drugs, get swindled, poison myself or make myself more resistant. The first problem is that they are not informed about how we have become organized to prevent these things from happening. The 2nd problem is to get the information through the door in the first place to get them informed. They are working on the coal face 24/7 so how have they got time to find out. I am sure that if I just came out with the generics it would be a BAD scene for little to no gain. Call me a coward but in this situation I am going to protect myself and keep quiet.

When the hordes from the Indian, Chinese, Polish and other communities that are not so averse to sourcing the generics overseas, arrive on their doorstep with their bottles of generic drugs, then they'll have to think about it. If they want to call me in for advice then I'll be happy to help them,

dt

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6 years 8 months ago #3109

Hi Alsdad & dt,

Thanks for your comments. I should point out that it isn't completely plain sailing over here either.

I had to ask my hepatologist about generics to get a response. (I suspect it is still not the done thing for public hep clinics to be recommending generics to their patients) Once I asked, he was forthcoming and told me the clinic had other patients doing the same and that he would write me a private scrip but did ask where I planned to source them from, obviously the "do no harm" rule kicking in but he was aware of Buyers Club, Kingswood and Greg. I then asked if he would monitor and his comment was that as I was a patient of the clinic I needed to continue being monitored anyway. So it can still be a bit "nudge, nudge - wink, wink" over here.

I then told my GP, explaining that I just expected him to monitor my general health. He was more difficult with dire warnings of internet scams, etc. He did calm down a bit when I explained where I got my scrip but I suspect he won't be ready to accept until I start getting results of my bloods.

And yes dt, I'm selfish too. If I hadn't got their support my plan was to keep trying other avenues until I got the generics. But I also want to help others which is why I'm writing about change.

As you say, you both have good docs even though the NHS won't support them within the system at present. I have little doubt they will be discussing with their colleagues, particularly once they start to get "undetectables" and then SVRs down the track. And I should imagine that 2/3 of the hepatologists in the ranks are looking on with interest or talking round the water cooler at the moment anyway. Only a small percentage seize change on first sight but many will jump on board quickly when they see benefits with most of the rest following eventually. And that will open opportunities even if it has to be outside the NHS for now.

Talk with them in a non threatening environment, find out how you can help spread the message to others who they think badly need treatment. Ask them what information it would take to convince their colleagues. Request their input without judging.

Network as you say, but whenever the opportunity arises feed results back to "the system". Let them know of yours and/or others successes. Make small incremental changes where you can and with time it will grow. Maybe not exactly as you currently envisage but that's what change is all about.


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 6 years 8 months ago by Gaj.
The following user(s) said Thank You: Vororo

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6 years 8 months ago #3116

Good luck GAJ,
You're on your way to a healthier liver. :)

All the best,
Cindi


J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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6 years 8 months ago #3121

Thanks Cyndi, appreciated.

It's been inspiring to read of J's and your journey.
You both must be thrilled to finally be able to get him treatment.

Best wishes
GAJ


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:

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6 years 8 months ago #3145

Yes I'm thrilled, he seems happy, ....hard to get a "thrilled" reaction out of a 15 year old !! :lol:
x


J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!

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6 years 8 months ago #3213

Hello GAJ I went to my Doc this morning just for a blood pressure check etc. I am the first patient of his (he has other Hep C patients) that have accessed the generic through the Buyers Club. I provided him with the GP cheat sheet and Dr Freeman kindly set out for me what tests my Doc would have to run at 4 weeks (he has not gone down this road before so was not quite sure and asked me to get confirmation from Dr Freeman).

He was very interested in a chat this morning and from what he was alluding to once I go through the three months of treatments (and hopefully with a good outcome) it is something he will be speaking to his other Hep C patients about and pointing them in the right direction to the Buyers Club. I am still waiting for an appointment at the Clinic at the hospital and will probably be 12 months post treatment before that happens anyway. :(

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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6 years 8 months ago #3215

Good to hear that GP's are getting onboard Lynne (and willing to spread the word, even better)

Glad you've had such a receptive Doc, you will be a eye-opener for him I'm sure :)


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 8 months ago #3221

That's great news Lynne, the more supportive GPs there are the better.

Yes, waiting for liver clinic access is currently a big issue. GPs knowledgable in treatment of simpler cases would be able to take the strain off the clinics and allow them to focus on the patients with complications that require more intensive treatment.

G.


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 6 years 8 months ago by Gaj.

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