Hep C Discussion Forum

coolheat · Senior Member

RE: Flounder update

Bills · Guru

Hi Marsha,

I really admire what you are doing here all these agency's you coming up with. Attorney General, Dept. of consumer affairs; Board of pharmacy. Our u.s. representative, The Joint Commission. You are busy with this. And Thank You

Not to long ago We fought the Dragon and it cost us a-lot of suffering possibly some we may never get over. Now we have better weapons to fight with but we have another entity disguised as our saviour,

People we need to wake up (ME as well) It's the saddest thing happening here and off this forum's , people in real life without support are getting cheated out of a right to be treated with the best and in cases given what the Pharmacy deems better " because of the cost" And we have doctors who don't know any better or don't know how to be our advocate.

If we don't stand up and get involved they may win and the future drugs may also wind up being out of reach for many. We got the cure we fought for it or were fortunate enough to have it handed to us ( the right insurance I feel guilty to admit that it was almost a breeze for me to get Harvoni)

A big secret I'm 57 and never voted, I really hated the lying politicians and the greedy structure that rules us. I have to get registered and make a few attempts to have a voice in this. WE owe it to the people coming into treatment to stand up with them. You herd it many times LETS PAY IT FORWARD if you can. I'm going to get registered to vote and send E-mails, Letters, Calls,

And Thank You Marsha for sharing this information Bill S

coolheat · Senior Member

Over the wknd received 2 letters from buercrats from the calls that I made last wk.. Ca. attorney general recommended calling dept. of consumer affairs; board of pharmacy. Our u.s. representative suggested I get ahold of "The Joint Commission." In the old days; I would have walked right into that one. More later. Thanks for all recommendations, and will pick ball up from where I left off.

dharmabum · Senior Member

Right now, I am worried that ACA will be struck down in the states that do not have health exchanges. What will happen to our meds if those states are off subsidies? Will those states' insurance companies then be within their rights to withhold Harvoni? OOOOOOmMMMMMM...

Cool heat, don't let the turkys get you down!

Jo

Gracie · Guru

That's what scares me as my insurance has a max. "they said" the most I'd have to pay is $3000 and that they would "likely" cover that. They also said they would call me this week and haven't heard anything yet. I'd rather be safe! I'm so excited to start I can hardly stand it. I look in my cupboard every night to make sure it's still there. Seems so easy compared to the needles, fat meals, allergy pills, anemic days of incevik.

Have heard so many SVRs and that music to my ears....

Bills · Guru

I did the same thing Gracie

I held back a week before i started actually taking it and didn't tell anyone. I was always like at least 10 pills in reserve by time I got the next bottle. that plan came in handy when I was told I needed $10,000 to finish TX for bottles 5 and 6.

It gives me chills saying that and remembering what a fight that was.

BS

Gracie · Guru

I haven't started yet, but didn't tell the pharmacy that. He's shipping bottle number two this week. I want to be at least one bottle ahead at all times "just in case". Don't trust the insurance people one bit.

Brian1412 · Guru

That is a great tactic as theu all know what will happen if someone. Were to not continue treatment. It would be imoral?probably illegal and no t good to the b crat trying to do thst.

It would also be a good protevtion and tslk to the liver orgs and have their lawyers give advice hep c community so we can nip these scare tactics before someone gets hurt or worse...lastly dont forget you dtste congress member..they to will get involved especially with medicare etc.

Bills · Guru

Hi Marsha

I am with everything that being said. I had my troubles too. Your on the right track by not accepting their attempts to stop your meds. Again the attorney general was mentioned here. And I also agree it may turn out to be the magic words that get attention fast. Also trying ANY persons or agency's involved. Your Doc, the harvoini support, the foundations that help us, and now I'm hearing Attorney General. I told Everyone I talked to and made it clear how many pills I had left and that they would be responsible if I relapse. I called all of them every day till I got my med and I did get it.

Good luck stay on them ,

Bills

bubble · Senior Member

I am irked with all the hoi paloi going on with Gilead and their "insurance companies" attempting to disrupt Tx. at midstream. Once your on your first pill you should not have to negotiate anything further. I realize their are only a handfull of AbbVie Vikera Pac people on this forum- but has anyone had any problems getting a complete shipment of Vikera-Pac? My Tx. went smooth. Their pharmacy actually called me 2 weeks ahead of time to schedule each delivery. Wife and I were on holiday in May and they even arranged an earlier delivery so I would not run out while away. Don't understand this with Gilead. Again, as many people here have stated, you have to persist and get answers from another source. Stopping Tx. midstream is not an option for "insurance companies". It say's that right on the Rx label. That's not insuring anything but failure. Dont bend to anybody on it. . Just my 2 cents.

Jaded · Senior Member

This is terrible. I suggest you send another email Attorney General, State Insurance Commissioner, and your Congressman expressing your disappointment in their lack of concern and response and cc: the emails to every news outlet. The news media will jump on this like vultures and then you will get a response. Sadly that is how you have to be with politicians otherwise they won't be bothered.

Gracie · Guru

Keep calling... it's going to work out, and there is somebody in every company who says things they have no idea about. Frustrating!!!!! I feel you will get thiS resolved pretty quickly and can get on with fighting the dragon!

coolheat · Senior Member

End the day, and did not get call back. Called the gal, she went home, man said that my case is still down for assistance review (which it has been since Fri., which is when I called and said that I could pay for it now.) Fri. is when they told me it was locked down for review. So, redundant, end of Mon. and it is still locked down. OOOOOmMMMMMM.

Update: Maybe it was the omm, but the man just called back and said that I would find out for sure tomorrow. The man said, think positive and don't worry, they wouldn't let me just like go with nothing. He has been their 3 years. OMM

-- Edited by coolheat on Monday 22nd of June 2015 11:08:53 PM

Brian1412 · Guru

It takes a day or 2 for the politicos but if you speak to the aid and then they don't call.. war. A lot going on up on the hill today , but still

glad your getting the meds

Cinnamon Girl · Guru

Hi Marsha, it really is appalling that you`re having to go through all this, and I just want to wish you all the best of luck.

You certainly have the fight and determination to do what`s required so don`t let it go!

Thanks for the update, we`re all in your corner! smile

Tig · Admin

You go girl!! Stay on them like a wet blanket. I'm not surprised to find out you crossed paths with an idiot the first time, seems they are everywhere. That's why we recommend a full frontal assault on every single resource available, even if it requires calling them twice. In this case you discovered the ignorance of the first individual. Keep us updated, we're all rooting for your success!

coolheat · Senior Member

Called same # as given last Wed. when I was told about not qualifying for help on my second mo. worth of Harvoni. This time the person that I talk to was quite disgruntled that I was told I did not qualify for assistance and that I was also taunted with "too bad if you have to stop treatment." Today the lady ask me what our yearly income. She told me that the assistance line is if you make UNDER $78,000. @ year. We are under that line. I told her we scraped together the money and that I did not want to risk going without the pills for a length of time. She said, that she would still call me back today, with an update and that no matter which way we go I would have the Harvoni before I run out. Important: She said that I never should have been given the imfo. from the gal on Wed.. For one she is not in the position to make a decision on whether I qualify or not based on that I only have medicare type drug coverage. They have a special dept. for that. Then when I told her about the gal saying: too bad if you have to stop treatment now, the new person kinda like went reeling. So the short of it so far is that looks like I qualify for assistance, will keep you posted. Maybe someone else won't have to go though this particular scenario. Also, fri. I called Attorney General, State Insurance Commissioner, and our Congressman, ALSO EMAILED: HAVE HEARD NOTHING BACK leave a sleeping dog lie, does not apply here. Will be pursuing this further. Thanks for listening to my drama last week. And all the great suggestions as to how to handle it.

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