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.

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.

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

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.