Can insurance refuse to pay?

[ginatheartist]

My doctor said my insurance my deny any more treatment since I am still positive after 8 weeks of Harvoni. I am new to this forum and need some help. I notice people have posted the medical records.I don't know how to do that.
 I do have cirrhosis about 1/3 of my liver and was infected 35 years ago. I thought I had fibromyalgia  for a long time and then find out I have active hep C. Maybe I do have fibromyalgia, I don't know. I was sick going into this treatment.
I was shocked that they can do that, stop paying. I said to the doctor "I thought it was 98 % effective, am I the 2%?
 Unfortunately I am on medi-cal and when I called them, they said I can't do anything until I am denied. That makes no sense, They would stop me in the middle of treatment and if I win an appeal, then I start all over again.
 Has this happened to anyone else?
 

[Lynn K]

Hi Gina

Your fibrosis score is F4 then cirrhosis of the liver is that correct? How were you diagnosed with cirrhosis. I was diagnosed with cirrhosis in 2008 on my 4th liver biopsy (had them every 5 years) The 8 week treatment is for people without cirrhosis who have never treated before per the Harvoni prescribing information sheet. See page 2.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Yes they can and have denied treatment for people with little liver damage F0, F1 and F2

However I haven't heard of any stopping protocol for a patient with little response that was based on th eold interferon ribavirin based treatments. But I have not seen anyone whose viral load did not drop significantly while on treatment.

How many week were you prescribed?

Wat was your before treatment viral load and your most recent on treatment viral load test result and what week was that test taken?

What king of doctor do you see? A patient with cirrhosis should be preferably under the care of a hepatologist associated with a liver transplant center.  Or at least a gastroenterologist familiar in the treatment of hep c.

Do you have any symptoms of cirrhosis? I developed esophageal varicies found with upper endoscopy that I had to have banded I also have edema (swelling) in my lower legs and take a diuretic for that.

[Lynn K]

forgot to add to create your mini history, go to profile, modify profile,forum profile. enter the information in  signature

Good luck 

[ginatheartist]

I was first diagnosed in 2004 and had a biopsy that was fine no cirrhosis. then I went without insurance or any help in 2009 until Obama care. the first thing I did was start getting help. Like I said I thought I had fibromyalgia ,but it was probably liver related.
I had a live scan not a biopsy, they said 34% of my liver had cirrhosis and they may end out taking out the bad part after my treatment . I am with a Southern Ca Liver Centers and connected to a liver transplant clinic. I hate the place I am going and had problems with them,and they won't tell me anything ,very vague and frustrating like I am an idiot that does not understand. They first said 12 weeks then a couple of weeks in said possibly 24 weeks. They say my liver function its good and all that .
, but I am not responding like I should by this time in treatment. I just got 2 more weeks so that will be 10 after I am finished and they said the next test Will tell them more. Why can't they just give me the 24 weeks and see if it works? I know it cost tons of money,but isn't it the same as a liver transplant? And the liver translant is not a cure.
 Yes I have swelling of the lower legs and ankles and am on a diuretic too. Did I forget anything? How do you get you medical records like I see everyone has?
 Don't they have to at least try, isn't it medically necessary? 
 
 

[Lynn K]

I have never been told a percentage cirrhosis does not work like that it is more or less evenly distributed through out the liver scarring everywhere not just in a specific area

When you said liver scan do you mean an abdominal ultrasound? That can't really be used to diagnose or stage cirrhosis it can see if you liver looks like you have cirrhosis but need other testing to confirm. Examples are liver biopsy, fibrosure blood test or a fibroscan which is kinda like an ultrasound but with thumps to determine liver stiffness.

Have you been told your MELD score it is based on some of your blood tests it is used to stage where you are in the extent of your liver disease and to determine if you need to be on the liver transplant list and where on the list you should be.

https://en.m.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease

There is a similar score called the Child score or Child-Turcott-Pugh score
https://en.m.wikipedia.org/wiki/Child-Pugh_score

My MELD is 8 and child score "A" meaning I am considered compensated cirrhosis right now

Do you know your MELD and Child scores?

You would need to know your INR (which is a blood clotting test score) your bilirubin, and creatinine for the MELD score and your bilirubin, INR, and albumin test results as well as whether you have ascities or any hepatic encephalopathy as those as also considered in that score.

Many of us have access to our test results through different web sites through our medical centers mine uses "MyChart" there are others.

However, you can always request to see your test results and get a hard copy from your doctor's office, which I would encourage you to get copies of all your lab tests and testing so you can see what the names of the tests are and exactly what they say. They are your records you have every right to see them.

The standard treatment protocol for patients who have never treated before (treatment naive) who have genotype 1 hep c is 12 weeks per the prescribing information sheet that comes with every prescription

http://www.accessdata.fda.gov/drugsatfda_docs/label/2014/205834s000lbl.pdf

Do you know your before treatment viral load and your most recent viral load while on treatment? What was the result and how many weeks of treatment had you completed when it was drawn?

Have you had an upper endoscopy yet to check for esophageal varicies that was one of the first things my doctor did when I was diagnosed with cirrhosis. I also had to get a pneumonia vaccine the one you usually get when you turn 65 but with cirrhosis we should get it now. Also you need to be vaccinated against hep a and hep b if you haven't been already

Let me know if you have anymore questions
Good luck

[Lynn K]

Just to add a liver transplant costs more like half a milion dollars and if you don't cure hep c it can come roaring back with some returning to cirrhosis in 5 years

So far as far as I know the only people who did not have a significant drop in viral load while on treatment at least in the clinical trials were found to have been non compliant in that they did not take the meds as prescribed or not at all. Other than that even in still detected at 4 weeks on treatment everyone again as far as I have read had huge drops in viral load that is why I am wondering what your last on treatment viral load test result is