Insurance Question- Is this normal?

[kirk8]

I want to know if my insurance company is making me jump through all these hoops hoping that I will give up on treatment and save them selves a ton of cash; or is this common and have some of u gone through processes that took this long. Thanks for reading.

I have an HMO/Private Hospital. I hesitate to say who in open forum. Dates are approximate:

3 years ago. I went to see a Dr. who runs blood tests after my antibody test comes up positive. Refers me to specialist.
3mo later. Went to see a specialist (NP Gastro.) She tells me that my 1a only has about a 20% SVR with current treatment. Even though I am 21yo at the time with normal blood tests.  Also tells me that I should loose weight and get down to about 180lbs for treatment. I was 260 at the time.  She says that I need to wait for the next generation of therapy. Orders an ultrasound and I never see her again.
I was diagnosed just before being booted off my parents insurance at 22yo.  I spend $7,455 to keep coverage until Comprehensive Healthcare Reform kicked in. I never even see a doctor when on COBRA. I drop 40lbs to 220lbs.

Knowing telaprevir and boceprevire are about to b approved I move across the state to live with family. They live next to a hospital where I will be covered.  Before that I had to drive 4 hours to their nearest accepted hospital from the isolated village where I lived. Paying COBRA has put me in debt.

2011, I start to make appointments:

Mar 3, made an appointment w/ specialist
April 5, got into see an NP, had blood tests
April 23, ultrasound
May 6, NP appointment, referral to Dr and Hep C class
June 1, Class
June 7, Dr. appointment, said I was a good candidate, recommends treatment. Said my NP’s office would call me to make an appointment. I point out that I haven’t had a retinal scan.  He as supposed to put in a referral for that, never did.
June 15, I call my NP and make an appointment after not hearing anything.
June 27, NP appointment, she puts in the referral for retinal scan. Tells me to do blood test in 1 month. Yes, I have confirmed dates for those 2. Then, I watch her write a note, in her computer, for her nurse to call me and make an appointment in a month.  

During this hole time the Dr & NP ask repeatedly. are u sure u want to do this?  And emphasize that it is not urgent.  “not for them at least.”

I’m upset / worried because It’s been 4months and they r still just running tests. I can’t afford to bye COBRA again. Thank u all so much for reading. I’ve learned a lot here in this forum and wish I had found it a long time ago. All this has just been eating away at me for years now and I have nobody else to share it with or ask questions. So, here are my questions for the forum.

1. Am I being paranoid or unreasonable or is this a ridiculous amount of time to wait for treatment?

2. What are the numbers for naïve 1a’s on SOC? I think the first hospital, 3 years ago, was just trying to get me to go away? Why else would they say “NO TREATMENT, COME BACK NEXT YEAR”

3. Has anybody else ever been told to drop 1 /3 of their body weight?

4. Why is the current hospital dragging these tests out? I should B on treatment by now?

[curiouslady1]

doesn't surprise me as both are usually related to addiction . . . there is often a biological mirror/model for psychological conditions although not prepared to say causation.

[screaming48]

I have fatty liver and I don't drink and I am not overweight 119 lbs, My GP when I had the test come back for fatty liver wanted me to lower my cholesteral until she looked at that bloodwork, 155 is very good. GI Dr said it is possible that the hep c was causing the fatty liver. I don't know. And it thrills me to know that fatty liver will make it harder for me to clear the disease.

[coeric]

maybe you thought hector was implying that one had to be both and alcoholic and overweight to have FLD.  i think you are correct in that you can either be an alcoholic or be overweight. it is interesting the histological features are the same for alcoholism and obesity.
blessing
eric

[coeric]

i think most hepatologists would agree that"Fatty liver disease is caused by ingesting alcohol over a long period of time (since you are so young we are not talking decades as in many alcoholics) and being over weigh"

from www.acg.gi.org/patients/gihealth/fld.asp
NAFLD is a very common disorder. It is estimated that NAFLD affects up to 20 percent of adults and nearly 5 percent of children. Obesity is thought to be the most common cause of fatty infiltration of the liver.



Lipid Metabolism and Liver Inflammation. II. Fatty liver disease and fatty acid oxidation
Janardan K. Reddy and M. Sambasiva Rao
Department of Pathology, Feinberg School of Medicine, Northwestern University, Chicago, Illinois


ABSTRACT
Fatty liver disease (FLD), whether it is alcoholic FLD (AFLD) or nonalcoholic FLD (NAFLD), encompasses a morphological spectrum consisting of hepatic steatosis (fatty liver) and steatohepatitis. FLD has the inherent propensity to progress toward the development of cirrhosis and hepatocellular carcinoma. It is generally difficult to distinguish AFLD from NAFLD on morphological grounds alone despite the distinctions implied by these etiological designations. The indistinguishable spectrum of histological features of both AFLD and NAFLD suggests a possible convergence of pathogenetic mechanisms at some critical juncture that enables the progression of steatohepatitis toward cirrhosis and liver cancer. From a pathogenetic perspective, FLD may be considered a single disease with multiple etiologies. Excess energy consumption and reduced energy combustion appear to be critical events that culminate in lipid storage in the liver. Energy combustion in the liver is controlled by peroxisome proliferator-activated receptor (PPAR)-α-regulated mitochondrial and peroxisomal fatty acid -oxidation systems and the microsomal ω-oxidation system. PPAR-α, a receptor for peroxisome proliferators, functions as a sensor for fatty acids (lipid sensor), and ineffective PPAR-α sensing can lead to reduced energy burning resulting in hepatic steatosis and steatohepatitis. Delineation of the pathogenetic aspects of FLD is necessary for developing novel therapeutic strategies for this disease.

[curiouslady1]

I just wanted to add an addendum.  I am fully supportive of the idea of waiting for a really good treatment situation if you can and think that Hector puts it out there eloquently.  But the issue about having a partner and being able to disclose honestly without fear of loss is one that has been quite poignant for me and I think this needs to be put out there also.  

[curiouslady1]

Hector is right I think insofar as alcoholism making conditions worse.  However, Hector is wrong by implying alcoholism AND overweight is a cause for FLD.  I have it and I am not an alcoholic nor ever was.  I am overweight though.  But all this is irrelevant as I think your original question was about insurance and that still needs to be a major concern.  If your parents insurance really won't cover you during treatment, then you may as well wait anyway.  If it does and your employability is poor (for purposes of getting good insurance in the long run) then I say pressure your insurance to get your treatment.  The virus can compromise your system in other ways and there is some indication for sexual transmission.  Unless you want to live life as a monk or dishonestly, it would be best to take care of this soon if you can.  It is easy to go into denial again and put the thing on a back burner for many more years, leaving time to resort to old habits.    

[HectorSF]

Fatty liver disease is caused by ingesting alcohol over a long period of time (since you are so young we are not talking decades as in many alcoholics) and being over weigh. Having fatty liver disease will affect your chances of clearing the virus but exactly how much is unknown.

Drinking alcohol while having chronic hepatitis C increases the progression of your liver disease. Again you are lucky as you have not had decades of time to damage your liver.

If I were you I would have a IL28B test performed so you can have an idea of what your chances of SRV are. You could have as high as a 80% chance of SVR or a 30% chance of SVR. Knowing your odds will help you make the best choice for treatment.

Good luck.
Hector

[curiouslady1]

I, for one, can see why you are in a hurry.  One year left is not long to get your treatment done esp. since they will extend the period if no response at first.  You can change doctors you know.  Unfortunately HMOs are very difficult because the group gets more money with fewer cases.  They have an incentive not to treat.  That is a big minus for that style of health coverage and that might be what you are running into.  Apparently, there are cases of detached retina from what I hear with the interferon.  It is true that your chances of SVR with the old treatment and 1a genotype were poor but, if I were a male, I would be pushing to get started right away.  For some reason males do not handle this infection well and this could convert more rapidly. You may need an advocate with this insurer.  Some insurers don't act until threatened.  As a naive positive (tho we don't know your numbers) you are sitting pretty for clearance within a year.  Good luck.

[kirk8]

Thanks for taking the time to read my long, complicated question.  It has been making me go crazy knowing that this treatment has been approved and I am still waiting, my doctors seem to keep pushing back the start date and requiring more tests. I have restructured my hole life around getting treated.  

My BMI is now 29.8.

My first NP 3 years ago told me the 20% number.  That is why I decided to wait for the new drugs.  Maybe she told me this because I was a heavy drinker.

I was told that a retinal scan is common before treatment.  I’m not really sure why.  I assume there is a chance of vision complications.  I will ask when I see my NP again.  

I was diagnosed with fatty liver disease 3 years ago and still had it 4 mo ago.  I assume that was because of years of heavy drinking which I stopped about a year ago (sober since August). I’m hoping my fatty liver will b gone by my next round of tests.

Thanks for the tip about clinical trials.  There must be some here in LA.  I will pursue that option if this doesn’t work out.

Thanks again.  U three have put my mind at ease.  I learn something new every day here. I have 1 more year of insurance coverage because relatives, by law, are now able to stay on parents coverage until they turn 26.  I think I will still be able to buy COBRA after that. If I am still on treatment.  

[Aaron57]

Hector did a very good job of answering your questions ..

You asked about weight issues ... "Even though I am 21yo at the time with normal blood tests.  Also tells me that I should loose weight and get down to about 180lbs for treatment. I was 260 at the time."

Kirk, How tall are you and what is your BMI ? If you are 6'8" , 260 lbs ... your BMI is 28.6 .. overweight but not obese .. normal BMI is below 25 for men ...

BMI does seem to play a part in the odds of success in Tx .. also ... have you checked for Diabetes or IR , insulin resistance ? These factors may influence P/R Tx outcome reducing odds of success by up to 20% , possibly less with the new PI's , PI's do seem more effective than P/R Tx even with high insulin sensitivity ...
  
This is a pretty good BMI calculator :
http://www.halls.md/body-mass-index/av.htm

Good health , Aaron

[coeric]

i was diagnosed 12 years ago and have had the disease for a little over 30 years. with the arrivals of the DAAs i thought it might be a good time to look into treatment.   i have spoken with 3 docs about treatment and not one has told me i need to treat.  my platelets are about 100,000 and i pointed that out to one of the docs, and he said that his had been lower. the same doc said there was no hurry for me to treat.

have you thought about a clinical trial? assuming you do not have any comorbidities you could be a clinical coordinator's wet dream.  all the trials i have looked out take folks with bmi up to 35.
blessings
eric

[HectorSF]

Retinal scan? For what?

First: You need to keep your COBRA
Once you are diagnosed with hepatitis C you will be labeled as having a pre-existing condition. You won't be able to get insurance for a number of years I believe for any reasonable amount of money. Treatment is going to cost many tens of thousands of dollars. Just for the new DAA drugs it will cost $30,000-$50,000 then there is the cost of peginterferon and ribavirin. Unless you are a millionaire or a member of the House or Senate you won't be able to get and afford private insurance.

Secondly, there is no rush to treat. It takes 20-40 years usually for liver damage to to affect your chance of curing the virus.

1. Am I being paranoid or unreasonable or is this a ridiculous amount of time to wait for treatment?
As I said, there is no rush. You need to prepare yourself first so you understand treatment and are prepared for any side effects you may experience.

Unless you have some medical condition you haven't mentioned the NP Gastro doesn't appear to be knowledgeable about hepatitis C. Only people who have failed treatment before would have a 20% of SVR. Ask her why she says its 20%. If she doesn't give you a good answer I would ask for another NP because who know what else she doesn't know and it could negatively affect your treatment. Reducing dosages, not having RNA viral load test performed at the right time etc. etc.

2. What are the numbers for naïve 1a’s on SOC?
About 43% depending on your own individual factors.
You can get a test called the IL28 B test which will help predict if you will respond to treatment and be able to cure the virus.
Forget about SOC. The info you have is now outdated. The new meds are on the market. They can give you about a 70%-80% chance of cure. No sense doing SOC. Give yourself the best chance the first time. You don't want to go through this more than once.

3. Has anybody else ever been told to drop 1 /3 of their body weight?
Losing weight increases you odds of successful treatment. And being over weight can also damage your liver with an illness called Fatty Liver Disease.

4. Why is the current hospital dragging these tests out? I should B on treatment by now?
There is no rush for treatment. 4 months or four years for you probably would make any difference medically. You are so young and I assume in perfect health. You don't mention any problems found during your tests. As far as insurance that could be a different matter.

Good luck.

Hector