TOPIC:

Is it possible for a 14 year old boy who was born with genotype 1 in the UK to become part of the e-trials???

Thanks in Advance

It is possible to treat people <18 with DAAs but as they are only approved for people over 18 there is an extensive discussion required.

It has been done before. Here is the journey of a 15 yo boy who was treated.

fixhepc.com/forum/patient-stories/311-yo...e-dragon-slayer.html

Hello Boo,
If you're asking about your son, you must have been finding life very hard. Even if the 15yo isn't yours, you must care a lot to be making the enquiry. I am really sorry to learn about your trouble and his. Hepc is truly nasty and the NHS does not always deal with patients suffering with it well. We all know the NHS is hampered by lack of funds and the professionals in it operate in a difficult environment for that and other reasons, though most do their best. All this can upset patients and their loved ones, causing huge pain, frustration and feelings of helplessness. I speak as one who knows and wishes he didn't!
I followed the link Dr F gives in his response to you and it made me feel much more optimistic, as I had the feeling it would before I clicked on it. I hope and trust it has had that effect on you.
You have probably already realised what a good man James Freeman is and have some idea of what he and his supporters have managed to achieve. You may not quite believe that what you've found is real, but it is. I may not have felt well enough to write this post early on a Sunday morning without the treatment FHC made possible, but actually I'm pretty good, and so are lots of other people whose stories you can find here. They are a very warm and supportive group and have done a lot for me, just as they will for you.
All the best to both of you,
RSF

Hi Rightsaidfred,

He's not my son, he's my Brother. My nan has custody of him and I am a close advocate in his care. He contracted hep c genotype 1 at birth from our mother. It's a shit hand to be dealt. Untill December just gone we had no idea about any treatment other than the interferon type which we have chosen to avoid unless absolutely last resort. In the last 6 month his consultant has noticing some scarring appearing in his liver, at his December appointment she said she would try to get the harvoni treatment, but didn't know a) if it would be granted for him b) how long it would take to actually get it c) she might have to appeal for it because it costs such alot of money.
It's astounding to read that we could aqquire it for what I consider as not really alot of money. I'm going to speak further with Dr Freeman. Thankyou for your encouragement it's good to hear from other people, sometimes we have felt totally at a loss with my brother and so frightened for his future ...... But it's starting to feeling like the future will be bright!

Hi Dr Freeman,

Thanks for the link.

We have already been advised by my brother's NHS consultant here in the UK that this treatment will become available for him at some point in the future. However how long and how easily we do not know.

It all just seems to good to be true.

It would be good to talk further and gather more information, get a better understanding of DAA's and how they work and discuss wether speeding the process up (quicker than the NHS here in the UK) is the right option for us.

Regards

Sara

Welcome Boo - what a great sister you are

I'm so happy that you have found this site. It will be a great support for you and your brother over the next while.
I have just come to the end of my treatment. It was a bit of a longer treatment process for me but I have been cleared of the virus for quite a few months now and it's all looking good for the future. There are so many of us here who are living breathing examples of the ability to clear this virus with DAAs relatively quickly, with speedy access and without the dreadful side effects of interferon. A lot of us followed the story of our 15 year old friend posted here by Dr Freeman and we were overjoyed that it had such a happy ending. So there is no question that your brother can go on to live without Hep C.

I have two sons. The blood tests for my oldest son showed that at some time he had HepC but managed to clear it himself which does happen. I would have passed it on to him at birth and it is indeed a shit hand! We'll continue to monitor him but if things change I have every confidence in the new medication.

There is no better person to have in your corner than Dr Freeman but you will see that in so many of the posts. He has been my Dr throughout my treatment despite the fact that I live at the other end of Australia to him. You can make an appointment with him and talk to him via Skype through GP2U which is an online medical service in Australia. This is one very good option.

So keep asking questions and doing your research. We'll be keeping an eye out for you!

Sara, you should talk to Dr. Freeman further for sure.

Welcome Sara!

coral wrote:
There is no better person to have in your corner than Dr Freeman but you will see that in so many of the posts. He has been my Dr throughout my treatment despite the fact that I live at the other end of Australia to him. You can make an appointment with him and talk to him via Skype through gp2u.com.au/about_us.html which is an online medical service in Australia. This is one very good option.

Fixed the link.

Thankyou for all replies

Gives me hope to hear positive stories!!

And everyone is so welcoming and friendly!

My little brother is a special one, against all the odds he is the most respectful and pleasant teenager. He deserves this a million times over. And it is my duty to do whatever I can to better his future!

Hi Boocock,

I am sorry to read your post regarding your brother, but am pleased to also able to offer hope in that you are in the best placed for independent expert advise.

I am UK based and am now thankfully clear of HepC thanks to FixHepC's Dr Freeman and his partners Monkmed - To whom I am forever grateful.

My own experience of the NHS was that they set you an appointment for a few months time saying something like 'we are hopeful we may be able to treat' etc Rather ambiguous. I decided not to wait as I was feeling ill and getting nowhere. The lack of a definite start date or even year, caused added stress and I didn't feel at all supported by my NHS team at that time.

As others here have said, I would book an online or telephone appointment with Dr Freeman to get an independent, unbiased opinion. There are also many more medicines available to the ones the NHS can offer and I believe the advise from Dr F superior to NHS advise as the latter are restricted by budget and bureacracy.

You may well get an offer of treatment here for your brother, but I would still advise Dr F's second opinion as to the best options as back up, if not the best course of action to help him back to good health. My story is an unusual one one. If I had been treated by NHS I would have surely failed the treatment as I was one of a small % to have a slow response and would not have been offered the treatment duration or medicines that finally cleared the virus for me.

I feel it's always best to know all your options and therefore make an informed decision as to which path to take. If you take the NHS route, they may restrict recommended treatment length, so you can add a top-up IF needed. (as I did) . I strongly feel this is something that needs to be shared.

I don't see any need whatsoever in these times to accept a treatment plan that involves Interferon, Are they still actually using this? I do hope not.

Anyway, rest assured, you are in the right place to get the very best independent advise possible and the support of a really genuine and caring community too. If accessing the medicines this way, my opinion is, it is essential you do so through a tried and trusted supply chain that also offers medical support and advise throughout treatment as they do here. Personally, I also would go for licensed generic medicines as the best option too, (although others here may have a different view on that) which FixHepC have access to.

I do hope I'm not bombarding you with info, it is a compkex disease and I wish you all the very best for getting your brother the treatment he needs and if I can be of any advise re NHS please feel welcome to PM me (unofficial as yet) patient advocate for UK patients seeking treatment via the generic route.

Warm wishes, LG.

Hi , another UK one here.
When I was diagnosed the doctor who made a referral to hepatologist was kind enough to give the department a call and speak to someone from the team re options, wait times, and doctors. In that first phone call on the day of diagnosis someone from hepatology mentioned fixhepc as an option so it is already known and accepted by NHS consultants here. Then I seen one of the doctors privately and they agreed fixhepc route was the best in my circumstances. So it is not "either/or", they work in synergy and they monitored me while on treatment.
London girl, I got my not detected quite late as well , at the end of the first course so now I am on second one as you were.