Hello Dr Freeman, Hello world!

Please can you explain the REDEMPTION trials a bit more? Is this essentially something that you are organising with The Club? Does it mean that you will be asking the members to send you their treatment results?

If so, I would like to say that this is really another GREAT INITIATIVE from Down Under, and it must be one of the best ways possible to show ordinary GPs that it is OK to prescribe DAAs... Me personally, I will be happy to participate (my own wire transfer to The Club went through a few days ago, I think...).

Lets all help to Bust the Scare-Mongering Myths About "Generics" and Buying From "Abroad"!!

are you kidding? tents?
soon you'll probably need to reserve your most luxurious hotels to accommodate the US med tourists paid by their insurer, according to research done in the US :

www.ispor.org/research_pdfs/49/pdffiles/PIH42.pdf

WOULD YOU LIKE AN ALL-INCLUSIVE LUXURY HOLIDAY WITH FIRST CLASS FLIGHTS TO EGYPT WITH YOUR SOVALDI PRESCRIPTION - innovative cost-saving solution for US tax payers.

INTRODUCTION
Gilead implemented a tiered global pricing strategy for SOVALDI (sofosbuvir where the price reflects a country’s ability to pay; a 12- week treatment course in the US costs $84,000 versus $840 in India, Egypt and Brazil.
SOVALDI has generated some strong payer outcry as its price combined with the large patient population (Hepatitis C) results in a substantial budget impact. 


METHODS
This research aimed to evaluate how it could be money-saving for US insurers to reimburse patients for luxury holidays to Egypt where SOVALDI is available at a 99% discount.
On the 26th November 2014, prices were sourced for the Fairmont Cairo 5-star hotel alongside first-class flights on Emirates airline for trips at the following weekend (Friday 28th to Sunday 30th November) reflecting the potential need for prompt commencement of treatment following diagnosis.

RESULTS
The most expensive suite at the Fairmont Cairo was the 233m2 “Diplomatic Suite King,” overlooking the Nile at $10,000 a night for 2 people.
First-class flights for 2 persons leaving on the 28th November and returning on the 30th would cost $42,754.

Therefore, US insurers could afford to send hepatitis C patients along with a friend/partner on a luxury weekend break to the most expensive suite in a 5-star hotel in Cairo to collect their SOVALDI prescription for a total of $63,594.
This means that insurers could give the patient an additional $10,000 in spending money and still make cost-savings exceeding $10,000, as compared to having SOVALDI dispensed in the US.

CONCLUSIONS
The availability of high-cost therapeutics in other countries at a fraction of the price that it costs in the US, offers opportunities for US payers to save costs whilst simultaneously offering quality-of-life improving vacations for patients.

You are welcome. As a doctor I would have no difficulty in supporting a decision to treat.

If it was my son I would treat them if they wanted to.

If, in the worst case, it went badly I would find solace in knowing we tried.

While we know these drugs have risks they are far safer than Interferon/Ribavirin and they have been used. In "UpToDate"

www.uptodate.com/contents/hepatitis-c-vi...nfection-in-children

We can read that PEG Interferon/Ribavirin is approved for use in children.

To me that's like saying amputation is approved for the treatment of gangrene in children but I can't give you antibiotics because they are too new and only approved in adults.

Personally I would take a punt on the antibiotics and leave the amputation to the annals of history....

Hello All

My name is Joan and I am awaiting the arrival of Sof/Dac. I have been informed that the order was placed last Monday, hopefully they will arrive in 2 weeks 3 at latest. I have been HCV for 40 years and have been affected with fatigue, nausea and weight loss. I had to give up my part-time job a year ago. My specialist has suggested I start treatment meaning the only available one being Interferon. Which I have never taken because the side effects were too harsh. I am grateful to Dr Freeman and team for having set up the Buyers Club as I would still be waiting for the announcement of the 'new drugs' on the PBS. Now I have the opportunity to have a cure sooner rather than later and prevent more progression of HCV.
I have been reading peoples stories of their experience of Sof/Dac and find it very informative and helpful as I prepare my mind and body for the 12 week treatment. Thank you all Joan

No, i have not, i have been waiting since mid 80's for something like this to come along, couldnt' see myself doing the chemo treatment cause I didn't seem that bad.

You won't find an official answer, and the trials in children are phase 2 and not scheduled for completion until August 2017.

clinicaltrials.gov/ct2/show/NCT02249182

So let's resort to the logic of first principles.

Children are different in three primary ways (physiologically)

1. They are growing both physically and mentally
2. They may not have all the metabolic pathways for drug breakdown seen in adults
3. They are a different weight

He's old enough that most of his bits are fully formed but some - cartilage in bones allowing them to grow, and his brain are not - it's possible these medications could do stuff here - ?

You can observe that for many common medications there are < 12 yo doses and then Adult doses - tick

If your son is full sized then we need not have concerns that the tablet size is too big for his body - tick

So if you weigh up the risks of treatment they are real, and to a degree unknown.

Then you look at the impact of Hep C and the risks of having it - they are real, substantial and well known.

To my logic the risk of treatment are small, the risks of not treatment are large, so the risk:benefit stacks up on the treatment side.

He's around the age of Gillick competence which is where the child is deemed capable of consent (usual situation an underage girl seeking either contraception or a termination).

On that basis if he wants to do it, and you are assessing a significant impact treatment is not unreasonable.

There is nothing magical that suddenly happens on a child's 18th birthday that says yesterday treatment was dangerous, but today it's safe. It is an arbitrary line in the sand and an adult sized 15 year old should tolerate an adult dose of medication fine and have a risk profile similar to an adult.

I would certainly be thinking along your lines if faced with the same dilemma.

I have also been waiting for Harvoni - I hear you!
As far as I can make out, API is the powder 'format' (for want of a better word)
Then there is now Twinvir, which is capsule format.
Dr F has tested the medicines, so I'm not suggesting anything for you to worry about, just curious as to whether you have Twinvir or a capsulated combination.
Excited for you - and looking forward to seeing how you get along with treatment as we are same GT and liver damage.

Here are the current timelines:

16th November: RVR Medications start being taken by patients (in process) The first patients are taking trial medication for 1 week to assess Rapid Virological Response. They will then continue on with a full course of medication that has already be proven effective

23rd Novenber: Day 7 viral load testing

1st December: Trials subscriptions will open (based on satisfactory RVR results)

26th December - Medications will start shipping to patients

January-February-Mar: 12 week treatment window

April 13th-17th: On treatment and EOT results reported at EASL Barcelona

The results for patients on 24 weeks treatment and the SVR4, SVR12 and SVR24 rates will be reported across the course of 2016.

I'm allergic to certain food (strawberries, citrus fruit, chocolate) and penicillin. Do I need an allergy test before going OS Dac+Sof or Harvoni treatment. If yes what ingredients should be tested?

Hi Dr Freeman Firstly a thousand thankyous
my sov/led is here and I will start tomorrow evening after dinner. tomorrow morning I will have a blood test done to get the viral load before treatment. If you would like to add my results to your trial I would be happy to add my name to the list. I have type 1a/ F2 treating with 12 weeks of sol/led starting 19/10 exact viral load to be determined after tomorrows test. Thank You Poodle

Thanks
I should add that I am now hep clear after my 4th tx, luckily.

But I desperately want to find a way to access the Generics for my son, he's like an adult , as tall as one & weighs more than me !
I guess I was hoping James may drop in & give his opinion.

But I imagine he's run off his feet.

it's just I feel so guilty that my boy was born with the virus.
I went through so many IVF treatments to finally have him, he's so precious to me.

I would do anything to help him.
My miracle boy!

Very grateful for James Freeman for doing what he does, I realise he is a very rare human being, very special.
Not many specialists seem to care as much as him.

xo

Hi Cj
I hope you are able to access treatment for you and your son.
Best wishes

Hello,
I just read your post regarding starting treatment overseas then bringing the meds back to finish up in the US. . I relapsed on my first treatment, so will be extending this second treatment to 24 weeks. If I end up having to go abroad, my biggest fear is not being allowed to bring 6 months worth of meds back into the US; either because the value of the meds might exceed the allowed amount, or because I would only be allowed to bring In 3 months of meds at a time. I hope I am worrying for nothing, and it wouldn't be an issue. I'm gathering info and learning as much as I can about this wonderful and scary quest for The Cure. Am so glad to have found this site, & glad of everyone's willingness to share their experiences. Am getting my finances together, and of course trying to find the most efficient, budget friendly way to do this. As they say, "where there is a will, there is a way!!" Wonderful news to hear so many of you are getting treatment and are feeling better. Yahoo!!

Nadia wrote: A few people mentioned joint pain as HepC related issue. I also suffer from it. During the treatment it has worsened and I'm wondering if that's because I've stoped taking fish oil and other supplements. Is it safe to take fish oil during treatment? I hope it would not interfere with the absorption of the meds.

My joint pain was also worse periodically in the first few weeks of treatment. It's eased again recently, and some days it's better than it has been for the last few months.

Take the fish oil at the opposite end of the day to your meds.

I am sorry but I have not had time lately to keep up with posts here. Any time I get I am helping out on the FB page "hcv treatment w/o borders". I figure if people have found this page they are on track. Many are finding the FB page but have no idea how to use the info.

I suppose actually being able to be busy is a good sign!

I've had some issues but nothing I can't get past. Sides come and then go. I had a second round of sides just recently but they seem to have abated as well. I'm feeling well again ..... Into my fourth week.

I've had a viral load check done and await results. Due mid week.