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.

What stories guys I don’t think I would cope well having to wait until my claim for life saving treatment was approved or denied. As for the question posed I know what I would do but wouldn’t advise anyone else to do same.

Guys – there is a little technical hitch that you need to think about.

When you start tx, your doctor will almost certainly take your baseline viral load and bloods. If you have already started on the generics (unbeknown to him) then you are going to have a bit of explaining to do when you come up UND before you even start his factory drugs. Worse case scenario, that anomaly could result is his withdrawing his treatment. I mean why would a doc treat somebody for Hepc who doesn’t have hepC, let alone spend a fortune doing it? This would be especially unfortunate for you if you need his 12 weeks of drugs to supplement the 12 weeks of generics you have already gone out and bought. Plus, you want the medical supervision from him, at least at first.

So it’s tricky. Good luck, however you decide to deal with it.
dt

There is another possible hitch and that is the Insurance company thinking that 8 weeks and 12 weeks treatment respectively is enough treatment. Whilst it won’t affect you guys it may compromise their statistics and others later unless you tell em later that you added to the supplied treatment. Just a thought.

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

Surely they will consider those labs as meeting the pretreatment requirements. Less than two months.
M