Thanks Doc,
The nicest place I can think of visiting right now would be Hobart.
There is a doctor there.
I owe him a beer.
And a life.
Mike

Yeah, frustrating is about the mildest way I can phrase it. Since my insurance only covers people on the transplant list, I don’t think I’m going to skew any data for them. They just pay if they are looking at having shell out half a million for a transplant-until persistant me comes along.
They will probably change the language in their treatment criteria and take the EHM language out because of me. That is my only concern.
CM

Hi Jan,
Take whatever pill you can get your hands first is my advice, but doing that has put me in the same pickle as you described. I’m just going to tell my doctors the truth and go from there.
Follow your heart.
Mile

Hi Doc,
I have another Mum question.
Your mum is sick, diagnosed 18 months ago with HCV. She was shocked when she heard the doc’s words. So shocked, in fact, her first words were “Is this a death sentence?” After being reassured she wasn’t knocking on death’s door, the lovable old gal gets a referral to see the clinic GI. Well, he doesn’t know much about HCV, he’s mostly a “tube pusher”, sticking them in from both ends. Well, he tells old mum she is very lucky, some brand spanking new drugs have just come out, both are FDA approved, but not as a combined treatment. He tells mum how well they work and how lucky she is because, she’s not that sick and the old treatments were expensive, long, hard to impossible to endure, and, for the most part, ineffective. So he prescribes Sovaldi & Olysio “off label” and tells mum, by the way, these are pretty expensive and your insurance may not cover them. Well, mum being mum, she has saved her pennies, has a fairly comfortable pension from working hard all her life and has “good” insurance. So she’s not too worried, UNTIL the doctor says “I’m talking $1800 a pill expensive”. When mum wakes up, she is in shock, but decides to get the script. She is not surprised by the insurance company’s denial, appeals it and gives up after the subsequent “final” appeal’s finding: Not an FDA approved treatment. Fast forward, Harvoni is approved, mum gets her script, mum is denied, denied again on appeal, but this time, she appeals directly to the “Board”, explaining all her EHMs and how she has felt sick all her adult life, but just found out the reason. Appeal denied, not F-3 or F-4. So mum, not satisfied with her “plumber” GI, gets a referral to a liver specialist at the state’s flagship university medical center. They are busy, so she has to wait 7 months just to see an APN. In the meantime, she educates herself, about HCV, about the insurance system, about all relevant things concerning her plight. She also demands one more script from the plumber. The plumber has an APN now that specializes in HCV-seems HCV business is picking up. Well, the APN says mum’s vl has gone from 5 million down to 1.6 million in the past year and mum can be treated with 8 weeks of Harvoni instead of 12. (Mum’s been known to enjoy a glass of wine or three, but has been a teetotaller since being diagnosed. VL? Hmmmmmm) Well, script written: denied, appealed, denied, appealed to the “Board”: denied. So mum writes a letter to the Board asking to see the criteria for treatment. They won’t furnish it (said talk to the plumber, but he was tired of wasting his time with old mum by now and simply ignored her requests. So mum FOIs the insurance (state) for the criteria, gets it and finds a person can get treatment based on EHMs, regardless of Metavir score. She also discovers Greg Jeffreys, Dr, Freeman, fixhepc and Mesochem generics. So, the now extremely well-informed old biddy develops a plan to get well: Go to India, Go to Australia or Get the meds straight from Mesochem. She also pursues the “ultimate” and final independent external review for her Harvoni denial as is allowed under new federal law, with little hope if a reversal after all the denials. So mum decides to import the sof & led, and begins treatment. After 3 weeks, she is feeling lots better now, she gets a letter saying the independent review overturned her denial. She can get her factory Harvoni for $5 a bottle. Of course, she is going to get it, but is in a bit if a quandry: Start the real Harvoni now, wait and start after being tested at 4 weeks. Finish up the 12 week course of generic and get the next $5 bottle of real Harvoni in 4 weeks. OR just take all 20 weeks worth, finishing up the generics and then, taking the factory meds. But then, testing issues come in.
Well, mum trusts her PCP to help guide her and also her new GI, who said “I don’t care where you get the medicine, I just want you to get it and let me monitor your treatment”.
So, 8 weeks, 12 weeks, 20 weeks?
What would you tell your MUM?
Thanks,
Mike

ps: this is s long post snd you are a busy man. I really want to know your feelins on this, but would like to hear others as well. Been one hell of a fight. The specialty pharmacy people were amazed. They said, of the hundreds of people seeking approval from my insurance company for the new DAAs, only those on the transplant list have been approved. She also said I was the first to go all the way to the external review stage. I am F-1.

Hi DT,
And thanks. I will pass the link along. It’s too late for me to test, since I am in my 4th week of treatment as of today. We’ll see next week how things are going when the test results come back.
Thanks again.
Mike

Yes klhilde,
The internet is a valuable tool. We can fight the greed with knowledge. The Force is with us.
Mike

From my Hepmag post:
We are suffering an injustice at the hands of Gilead and, by extension, our government.
The US was founded on the principle of equal justice. Gilead is basically a hedge fund. They snapped up the company that developed sofosbuvir because they saw the profit potential. See below:

The cognoscenti were there to hear Gane. An unshowy, respected doctor, he had been working on hepatitis C since the early 1990s, and for the past year, had been carrying out a clinical trial of a particularly promising new drug developed by a small American pharmaceutical company called Pharmasset. The drug was known by its laboratory name, “PSI-7977”, and today, Gane was to give an update on the trial, called ELECTRON.
Sofosbuvir, for all intents and purposes. Gilead bought them out for $11 billion. Check their latest earning reports….

Well, that is fine, because, it too, is the American way-at least until they start telling people “We will sell you your life for your life savings.”

The Founders broke a few English laws to start this great country.

We owe it to them and ourselves to bend a few today in the name of fairness and justice for all. This should not be a rich person’s cure.

Globalization has set the price for a 12 week treatment of pure generic harvoni at just less than $2000.

Buyer beware.
Buyer be informed.
Buyer get well.

Mike