The information supplied by fixhepc states that each individual patients medication is tested by MNR a properly acreditied lab, which makes up part of the stated cost. Are these results included with the medication when sent out. I ask this for several reasons
1. It will I think go a long way in reassuring the doctors, hospital departments that are going out on a limb in a climate when the majority are refusing to even monitor treatment let alone write the scripts.
2. Peace of mind for the person taking these medication.
3. This is a service which is being paid for.
This may be the case but I am yet to see it said in any of fixhepc literature.
Regards Angus & thank god for you guys.

Genotype 1a, 1.6 million viral load. F0 metavair/fibrosure score. Prescribed Harvoni, insurance won't cover it. That's not exactly the whole story. I was diagnosed 10 years ago and I have been living in fear ever since. I have, or rather had, a hands on job that caused me to cut my hands several times a day. Racked with anxiety and fear that I am infecting others. Became a shut in and cut all ties to friends and family. Haven't been intimate with anyone in over 10 years. I definitely think I am better dead so at least loved ones will stop worrying. I can't bear it any longer. November of last year I thought I was getting Harvoni, but insurance denied it. I was told by my doctor that they would assist me in obtaining the meds and they had a 90% success rate in bargaining with the drug companies. Started planning my life on the outside. After the second denial it was apparent I wasn't going to get them.

Today I was told I should accept I probably won't get Harvoni, ever. My doctor put the idea in my head that a new treatment is coming out, and maybe I will get that. I can't go through this again. I have some funds, and can borrow some more from family.

I want to live, but I don't see the point. With all due respect, I don't need kind words, I need a blueprint. Instructions to follow. I will go to India, Bangladesh or anywhere. Looking at trips to Australia but I don't think I can afford it. P,ease help. Thank you.

Attention U.S. Visitors!
6/07/16 current update:
There is great information in this topic about accessing reliable, affordable HCV treatment. Things are changing rapidly in a good way. Feel free to contact me at This email address is being protected from spambots. You need JavaScript enabled to view it. for the latest information.
Mike



I ordered my 12 week supply of sof & led from Rachel at Mesochem in mid October. I wired the money, $1916.00, to the company bank on Monday. It was delivered to my door on Friday at 7:30 am. I know of one other person I advised who had the same success. It would be nice to hear about other success or non success stories about getting these life saving APIs into the U.S. It might help those who can't get approval from insurance to make the decision to take matters into their own hands here in the States. I know of many people whose insurance would only approve an 8 week course of Harvoni, but want the added assurance of achieving SVR that comes with the 12 week tx. A $700 investment could give them that peace of mind.
Mike

I've been a busy bee swarming all over the internet, posting on every comment board I can. In particular replying to comments from people who disclose they have Hep C, but unlike Pamela Anderson, not the $$$ to pay for treatment.

Have completely blown my cover. But I really believe in what Greg and Dr James are doing.

Gosh there's a lot of trash out there.

Enkel, take a look under FORUM - FAQ - HOW DO I TAKE THESE GENERIC DAAs

I take mine in evening, and sleep like a baby.

It's up to you, choose morning or evening and stick to it. All the best with your treatment.

Here is the best, most definitive article I have found so far on the subject.

Short version ... it's technically illegal, but if you're bringing it into the country for your own use they are almost never going to stop you.

From WebMD (runs four short pages, no publication date posted)
www.webmd.com/healthy-aging/features/let...-of-drug-import-laws


The Letter (and Spirit) of Drug Import Laws
It's illegal (nudge, nudge) to buy prescriptions drugs (wink, wink) from other countries.

By Neil Osterweil
WebMD Feature

Let's make this very clear. It's absolutely, unequivocally, without question illegal to reimport into the U.S. prescription drugs that have been exported to other countries, or to bring in substances that are banned under U.S. law, for any reason, except when you've got a prescription and the FDA or customs agents say it's OK, or decide to look the other way.

Get it? Neither do we.

The old adage that "those who love the law and sausages should never watch either one being made" certainly applies to drug policy. But neither the FDA nor the U.S. Department of Homeland Security are necessarily to blame for the confusion.

Burdened by skyrocketing health care costs, consumers, employers, and insurers are looking for ways to save, and one of the most obvious targets is drug costs. Because Canada and most other industrialized nations impose price restrictions and limit what pharmacies can charge for drugs, the cost of a brand-name medication sold in Toronto can be as much as 55% less than what the identical drug is sold for just across Lake Ontario in Rochester, N.Y.

While the practice of reimporting drugs from Canada, Mexico, or other countries is still technically illegal (with the possible exceptions noted below), it is increasingly becoming a custom more honored in the breach than in the observance. The U.S. House of Representatives has passed three versions of bills that would allow consumers to import legal drugs for personal use. A similar measure, known as the Dorgan-Snowe Drug Importation bill, is currently before the Senate.

In the meantime, the mission of the FDA, as always, is to promote and protect the health of Americans. The mission of the U.S. Customs service is to enforce Federal laws and regulations as they pertain to imported substances such as drugs. And here's where the law gets kind of squishy.

Current law says that if Granny decides she can get her heart medications more cheaply in Alberta than in Alabama, she could be busted for either bringing it over the border or having it delivered to her. Does that mean that dear Granny is likely to do a stretch in solitary? Hardly, experts say, because nobody wants to be seen putting the cuffs on elderly pensioners. Also, they'd have to arrest the governments of the states of Wisconsin, Minnesota, Illinois, Vermont, as well as many city governments and private employers who have turned north for lower-cost prescription drugs.

Don't Ask, Don't Tell

When it comes to the importation of drugs from foreign countries, the FDA acts a bit like Captain Renault in Casablanca who tells Rick that "I am shocked, shocked to find that gambling is going on in here!" as he gambles in Rick's club.

Here's how the FDA puts it in a consumer advisory on its web site:

"Don't purchase from foreign web sites at this time because generally it will be illegal to import the drugs bought from these sites, the risks are greater, and there is very little the U.S. government can do if you get ripped off."

And there's the rub: the words "generally" and "at this time." Under current law, stated in an FDA "guidance" paper titled "Coverage of Personal Importations," the importation or interstate shipment of unapproved new drugs is prohibited. The definition of "unapproved" includes "foreign-made versions of U.S. approved drugs that have not received FDA approval to demonstrate they meet the federal requirements for safety and effectiveness. It is the importer's obligation to demonstrate to the FDA that any drugs offered for importation have been approved by FDA."

Under those rules, it appears to be illegal to import into the U.S. the cholesterol-lowering drug Lipitor purchased in Canada, even though the drug is made in Ireland for shipment to both the U.S. and Canada. To make things even more confusing, the FDA guidance cites "circumstances in which FDA may consider exercising enforcement discretion and refrain from taking legal action against illegally imported drugs."

These extenuating circumstances include importing an unapproved drug for a serious condition for which there may be no effective treatment available in the U.S. But the drug can't be marketed to U.S. citizens by distributors of the drug in question, the product can't be considered to "represent an unreasonable risk," and the patient doing the importing has to be ready to affirm in writing that the drug is for his/her own use. The patient also has to be willing to furnish contact details for a physician in the U.S., or provide "evidence that the product is for the continuation of a treatment begun in a foreign country."

To hedge its bets, the FDA cautions that "even if all of the factors noted in the guidance are present, the drugs remain illegal and the FDA may decide that such drugs should be refused entry or seized. The guidance represents the FDA's current thinking regarding the issues of personal importation and is intended only to provide operating guidance for FDA personnel. The guidance does not create any legally enforceable rights for the public; nor does it operate to bind the FDA or the public."

As for the consequences, FDA associate commissioner for planning and policy William Hubbard told the Wall Street Journal in March 2003 that "any party participating in" an import plan in which a health insurer or claims processor helps arrange a purchase in Canada "does so at its own legal risk." The article also quotes Hubbard as saying that "our highest enforcement priority would not be actions against consumers."

"The agency doesn't go after individuals, per se," says Tom McGinnis, PharmD, director of pharmacy affairs for the FDA. "The agency has tended to focus its priorities on people making money from this illegal activity."

McGinnis tells WebMD that the personal importation policy "has been in existence for a long time, probably since the '50s, and that if you read it carefully, only deals with things that are not available in the U.S." McGinnis says that the policy was intended to allow patients with serious, life-threatening conditions who have exhausted all available alternatives in the U.S. to try, under the guidance of their physicians, alternative therapies approved for the condition in other countries.

Anything to Declare?

U.S. Customs, for its part, warns travelers not to assume that medications approved abroad are also legal in the U.S., or that the labeled uses for which a drug is approved elsewhere hold true in the United States. The Customs service also cautions that:

Some medications available only by prescription in the U.S. may be sold over the counter in foreign countries. They could be dangerous to use without medical supervision.
Some drugs that appear to be made in the U.S. may be counterfeits.
It may be a violation of federal or state law to be in possession of some drugs without a prescription from a U.S. physician.
All imported medications must be properly declared to U.S. Customs.

The Customs service warns that "when the type of drug, the quantity, or the combination of various drugs arouse suspicions, U.S. Customs inspectors will ordinarily contact the nearest FDA or DEA [Drug Enforcement Administration] office for advice and will then make a final determination about whether to release or detain the article."

And if all of the above makes perfect sense to you, we'd like to know what you've been taking -- we'd like some, too.

Thank-you DT and Jolie I don't know if it's bullying, yes, maybe emotional bulling, I have my reasons to suspect that, or just pure arrogance.Many NHS staff are overworked and stressed too, but they are being paid to do their job and we are the patients, you know?I am a teacher, when I was diagnosed it was because I also danced and muscles had wasted so had to give it up as muscles were not supporting joints and I was getting injured and I had mentioned this However, I notice on all my letters I am listed as an ex-dancer. Maybe snobbery, thinking dancers are not very bright? The last consultant definitely talked to me like I didn't have more than one brain-cell, maybe he thought that one was was in my feet !

I have already changed hospitals once. The 1st hospital was when Dr didn't show up & left note.
Then Hep C nurse 'forgot about me' (admitted it and apologised eventually) so I couldn't find out my Genotype or blood test
results etc After months or more of fighting for these, I changed hospital. At that hospital there is no way to contact them, you just get an answer-phone IF you're lucky. Eventually I left a message saying 'I do hope I don't have to take this further' then someone called me to say they had 'forgotten about me'. Not that they had my notes to hand, so still had to fight for those details!

Was so much happier at my new hospital, it has been great compared to the first, nice staff, never had to wait for long, even with admin mistakes and questionable fibroscan I have been much happier there until now as I had a good consultant. To change again and set myself back to the beginning is not something I relish the thought of. and no doubt will be noted on my records. Also, I as told the new Dr ********* 'may not stay long' by the nurse. I could change hospital and find I'd been allocated the same guy - Arggg - The stuff of nightmares!

Re GP, He's the nicest one out of a questionable bunch. Finding one with space around here is not easy.
I am just getting to the stage where I can hardly bear to talk to any of them, you know? but at the same time, I cannot afford private scans etc although have paid for my own blood tests recently Have found if I say 'my consultant said it would be helpful if ' .... GP would offered LFTs and even VL test - However if I ask about anything, it is just poo-pooed. Sexism? Doctorism? My partner says he has never had anything like this and is listened to. I do think they are very set in their ways, in more ways than one. Maybe I should just use this prelude before saying anything.

Treatment wise I will take matters into my own hands, Monitoring wise I will sort it out, somehow - Hopefully!
ps Sorry so long!

"It has made me rather tearful, you seek medical advise, wait 8 months for an appointment and they make you feel like a ungrateful beggar."

I think that you must be a very strong person mentally to have withstood this kind of treatment, seen through it, and written here about it. You have survived what sounds like a very toxic series of experiences with the NHS and you should give yourself a pat on the back. Also avoid more of the same encounters in the future, for the sake of your own mental health.

My doc is not a bad doc, but when I complained of fatigue, he blithely made it known to me that I could avail myself of their temporary respite facilites during my wait for tx. This would be a self pay of course. Luckily I can still do all the functions of daily living, ie. get up and get dressed, go to the toilet, feed myself, etc. I bit my tongue but wanted to say that if I wanted to spend that kind of money I would check myself into a 5 star hotel for a week and order up room service. I can just imagine myself in a respite care facility, paying through the nose and then waiting all day till the nurse could be bothered to get me a cup of tea. No thanks.

My point in telling this is that I can just imagine him with the same blythe tone recommending me for a place in a permanent care home. With the level of fatigue I was feeling that wouldn't have been too long in coming. They'd rather pass you from pillar to post right into the grave than write a prescription for generics to make you better. And they'd be cheery about it.

dt

Thank you all very much for your advice. Unfortunaly I have a Barretts esophagus and until about six months ago I also had dysplacia which has improved greatly .
About 10 days ago I changed to Somac and will try now to go with out any. I also weigh about 105kgs so your advice seems I should switch to Daclatasvir .
I am starting the Sofos/led today and did order Daclatasvir when I first read about this issue and expect it in a few days.
You mentioned a trial where about 50 people have taken Daclatsivir as well as Sofos/led combination so do you think I will not have a problem just adding it instead of replacing the Led?
Thanks again for your advice.!

Your experiences with this consultant are so dire that I wonder about the suicide rate of people attending his clinic.

I am not suicidal. but the 'consultation' with this Dr has definitely had a delayed effect on me and I am feeling down about it.
I think delayed shock.

The fact is, he made me feel like I shouldn't have been there and am selfish to ask for treatment. Worthless.

Yes, I have decided to highlight it. I'm sure this won't help my 'cause' - but I feel it is important that people know how things are for some of us , especially if we dare to ask any ask questions.

My previous consultant was a lovely, kind and excellent Dr, so they're not all the same, but I was allotted this one without any notice. I do feel they are shipping in younger, less experienced Drs to save money now.

It was very awkward because he also contradicted himself - and it became apparent to me he had lied. He knew it and I knew it. This was at the start and unfortunate - For me that is. (I did manage to keep quiet re the 'contradiction' and not point it out)

I have been urged to 'press for an Ultrasound and treatment as soon as possible' by another Dr, would rather not say who. How can I do this if I am not to be seen until minimum June 2016?

I have brought up the matter of the questionable 2nd fibroscan and this Drs reponse ws 'There's no o difference between 8.7 and 6.1' .

It has made me rather tearful, you seek medical advise, wait 8 months for an appointment and they make you feel like a ungrateful beggar. I will clearly have to treat myself, although I get the feeling monitoring will not be forthcoming on the NHS.
This is not my point of principle though, that is the manner in which we are (un) - treated

Then what the hell are they there for, just asking! (apart from drawing a salary under some kind of bizarre false pretences)

My feelings exactly zhuk.
Think he was drafted in to tell patients they will not be treated yet and why. No intentions at all for a medical consultation.

I'm starting to wonder if there is something on my medical records - It's been difficult all the way though - Excpet for one nice Dr and I originally saw him privately, but he did go the extra mile.

My first Dr after waiting for 3 months after diagnosis, didn't turn up - He just left a note with the receptionist saying 'He didn't want to see me'.

LG - Your experiences with this consultant are so dire that I wonder about the suicide rate of people attending his clinic.
I think it is really important that you are highlighting the kind of terrible treatment that some of us have to put up with. People should know that they are not the ones at fault, that some docs simply have their heads up their arse. I think there is a real concern that vulnerable people might be going to this clinic and coming out feeling abandoned and hopeless. Let's hope that they are reading here.

dt

Yes, you could make a good case for just take a course of Nexium HP7 while waiting for meds to arrive. 7 days of Nexium + Antibiotics.

For anybody who has time before starting tx and is bothered by acid reflux, get tested for helicobacter pylori bacteria in the stomach.
Hopefully your doc will have done this but if not then it is well worth doing. This bacteria is a menace and can be eradicated with an antibiotic cocktail. Your acid reflux may not be eliminated but it will be improved.

dt

My new consultant announced ' We are not concerned with symptoms' last week.
He then said 'There is not data or trial evidence to suggest we take notice of symptoms'.
At least he was honest!

With no offer of blood tests, fibroscan , no observations of general health, a fight for an Ultrasound (late December appt. after a week of phoning) - How are Drs supposed to tell how the patient is or if there are any health risk elements?
Or is that a silly question? - I was certainly made to feel silly in my latest 'consultation' - It was clear I was not there to discuss my condition, but to hear a lecture on Commissioning bodies and how I cannot expect anything in the way of diagnostics, advise on symptoms or treatment for some time'.

pat1 wrote: He then followed with ' your result is ok, if I were you I would wait!"

I think if he had HCV and had it for years and then he could treat and treat it right away, then he would. That's just a no brainer, A lot of people have been waiting years for an effective treatment ...sure lets wait some more! ..no thank you