Hep C Discussion Forum

Matt,

I am so sorry you are being left hanging. They should do a better job of keeping you informed of your appeal case.  I kind of agree that he is probably gathering info from the liver meeting & other sources & he needs time to process it before discussing it with you.  He should just send you a quick email saying just that & you would feel reassured.  

If it were me, I would put together a letter addressed to the insurance company.  Include several studies that support your case for immediate treatment citing the source & URL. Include a personal statement about how you have been affected by hcv & how urgent it is for you to begin treatment immediately. They need to see you as a human, not a case number. When you meet with your dr., give him the letter & articles & tell him you want to have it included in the appeal. Make him understand that you need to present your strongest case, this is not just a routine appeal.

Thanks for the insight everyone

Well I did schedule a backup visit on Nov.25,  which I thought I would be cancelling but perhaps not.

Tig I think you are barking up the right tree, because when I visited the TLI (Texas Liver Institute) and consulted with Dr. Eric Lawitz he remarked that my knowledge of HCV ,Clinical trials and new meds in the pipeline was far more than the average Gastro doctor. I don't know if he was trying to make me feel good or he really meant it. My intuition is because of the many areas of the body that a gastro Doctor has to deal with and keep up on he is probably right.

But a Hepatologist you would think would not have that issue, but he is dividing his time as Professor in teaching, Liver transplantation, head of dept. at university and dealing with some obsessed patients that all they do is research on HCV and its future.

Hey Isiscat your point about getting him emotionally invested is well taken, but the way my two appointments went was somewhat bizarre in that he had 3 other people in the room during our conversation. I think they were interns observing the proceedings, very disconcerting and certainly not a door to building an emotionally connection.  I guess I should call him out about including that dynamic in my appointment but he left the room with all his students and never came back. I was never appraised that my appointment would include that kind scenario so if it continues there will be no chance for emotional investments.

matt     

I think by scheduling an appointment, he would have to give you his attention like Isis said. Tig may have a good point too. I am sure some of the members of this forum are more in the know about the latest HVC news than some Dr's.

I haven't even seen the Dr running the trial I'm on, but it's a different situation. I think there was some sort of Dr or PA who gave me a quick physical twice.

Hi Matt:

So you are essentially a new patient because he has only seen you twice.  That means he probably has zero emotional investment, and you are one of many other HCV cirrhotic patients, distinguishable only by your somewhat unique prior DAA history.  That doesn't mean he won't do the job; but having an established relationship can make a difference and can improve communications: returning phone calls, etc.  

He is probably very swamped right now and is busy prioritizing which means he is putting out fires depending on how high the flames are getting.  He may have scheduled the PT phone conference but hasn't gotten around to communicating that to you and is planning to tell you the results after the phone conference.  Time is of the essence here because you have that set window of opportunity.  I don't know if this is an urgent appeal, and you still have a window for filing your denial appeal (often 30 days), but those appeal time frames are important and I'm sure you know what they are.

IMO, you need a face-to-face sit down with him.  It is quite possible that he is on top of things but he simply isn't taking the time to communicate that to you.  I would call his office on Monday and schedule the soonest appointment possible.  Tell the assistant/receptionist that you are willing to come any day, any time, and that it is urgent you speak with him.  Ask if you can have 30 minutes but settle for less.  You just need to get in the door and talk with him--not his NP or PA-- but to him.   Consider bringing your wife--not for your support--but because it sometimes helps to let them know that you are a person who has family, and a life, and responsibilities, etc.  This is your life and sometimes our medical providers can forget that.  We can't expect them to care in the same way a friend or family member would, but even if you can engage him emotionally for a few minutes, it can help to establish rapport in the long term.  

I think if you can meet with him you will have some answers and hopefully be assured that this thing is moving in the direction it should be.  If it isn't, then you may need to find a new doc, but I tend to doubt that he has simply dropped the ball.  

Thanks Isiscat, heres a bit more info

During the last 6 years (since I was diagnosed with HCV) I have consulted with 6 MD's all specialists (Gastro, ID, Hepatologists) The best one by far is from the Texas Liver Institute, unfortunately he is to far to see as my regular doctor. My current Doctor is head of the Gastro / Hepatology department / professor of medicine of a major state university in Wisconsin, bla bla bla. Sounds impressive I know, I didn't select him for that reason, but because he was in my PPO and was one of the only Hepatologist in drivable distance. 

My 2nd appointment was on Oct 14, 2014 to prescribe the newly FDA approved Harvoni, for the appointment I provided of the important and necessary labs, biopsy, Fibroscan, history of treatment etc.to add to the prior authorization.  We consulted 7 months earlier and he agreed that I should wait until Oct for the Gilead combo so this appointment was a mere formality.

Its now one month later and my insurance has denied my PA request on Oct 29 ,the doctors PA assistant related the news to me. At that time I requested for the doctor contact me, the Doc's assistant said he will be seeking a peer to peer phone conversation with Prime Therapeutics medical faculty and that they have a window and set number of days to do it in. Since then I emailed him three times, this was part of the last one. 

"I would like to talk to you via telephone for a few minutes about our ongoing pursuit of Harvoni. After the insurance company (BCBS) denial and subsequent affirmation of there position. It seems that we need to file an urgent appeal and have a strategy based on there flawed clinical rationale, medical criteria. As you are likely aware there are several new papers on re-treatment of relapsed Hep-C patients including the NIAID Synergy Study. "

Matt