Why can insurance companies override my doctor?

[heart_in_the_keyes]

scheduled to do 3 drug invicek trial but insurance company said no due to liver being compensated but they ok'd liver transplant...does that make sense???

[orphanedhawk]

It doesn't sound weird to me at all. I began my first tx in late 2006. Now, I think I would have been advised not to bother but at the time, I thought what did I have to lose ?
I agree with your decision. If you are facing a transplant either way, I'd be reluctant to do the triple tx with a diseased liver.

You might want to talk to your doctor about the new Gilead oral med currently in trial~7977. Hectorsf who is on the transplant list is in a small trial testing people pre-transplant. He has been undetected with these new meds since week 2 !!!
Take a look at his profile for more info.

Please feel free to send me a private message if you want to.

OH

[heart_in_the_keyes]

Thank You.  This sounds wierd to say but I am glad to converse with someone who has had a liver transplant.  Not that I would with that on anyone...I have been fighting it so long but my doctor is very good and patient.  He is well known and renoun in his field and knows his business and has been very patient with me.  He admires my work etchics and my positive attitude.  It became clearer with the information on gathered on decompensated vs. compensated liver status.  Once I realized that I still would have to have an eventual liver transplant even if I survived the tripleX and it was successful it made no sense to waste any more time at this Stage.  I asked him about other options and he said with a new liver the new options to kill the Hep C would be effective with a healthier liver.  So, I am going to start the program and meet with him and the transplant nurse in a few weeks and then it is a process of heart, lung and other tests to see if I can survive a transplant.  So in the future I may be seeking you out to ask transplant related questions...thank you for your support and information.

[orphanedhawk]

Sounds like you have a good doctor. I did interferon/riba treatment with a decompensated liver. It was very difficult and I relapsed, no doubt because my liver was already in such bad shape.
After over two years post transplant, I did the same treatment and it was much, much easier this time around with a healthier liver, and it worked !

Wishing you the best of luck,
OH

[heart_in_the_keyes]

Advocate1955 & Nonsensical & everyone else...you were right on in your suggestions...saw my TP doc after Liver MRI and upper GI to ck for variaces, etc.  He told me that in the end he was the one to put a stop to me getting the tripleX therapy even tho he had originally ordered it.  My blood work panels have improved greatly over the last 6 months.  My Meld score is 16.  I am Stage 4 with decompensation.  And I am 64.  The newest studies led to the worry based on my age, stage & level of decompensation that the tripleX has a 3-4% chance of killing me and he after looking at my records, and new studies he has received, could not with a clear conscious ok this for me even if it was only 2%.  He also said that had I done the tripleX with a decompsented liver and it had been successful I eventually would have to have a liver transplant due to the decompensation of my liver.  Once it has decompensated to a certain point it will not revive itself.  So I agreed to go on the transplant list which is a lenghty process anyway plus he agreed that there is new medicine coming up constantly that is very effective.  I was concerned about getting a new liver and it would become infected with the Hep C.  He said it could take up to 2 years before that happened and by that point it is his belief we will be in a community where this disease will be able to be controlled.  I asked him about the new single pill therapy that someone here mentioned and he said that it is almost 100% affective but would not be on someone like me with extensive liver decompensation.  This information only shows to me that anyone with this virsus should be in front of it and doing everything they can in the beginning to put a stop to it before they get to Stage 4.  

[crossroadsec]

Sounds like you have a good plan. I was decompensated and was refused tx. However, I was referred to a transplant Dr. who then treated me successfully for 45 weeks. Insurance was a mess and I had to fight like crazy, but it worked.
This group will stand by you while fighting to treat. You've got a lot of good advice. This can work.
Best to you!
Karen :)

[Advocate1955]

I am not as familiar with decompensated liver disease as some others on this forum.  I believe that Orphaned Hawk has some great questions posted in her journals, and maybe she can help you modify those questions to your specific situation.  I know you probably feel frustrated because you were hoping to be able to use the triple tx meds to treat your Hep C, but it sounds like you already have symptoms of decompensation and your platelets may be too low for treatment with triple tx meds.  I would recommend reaching out to Orphaned Hawk or Hector for some advice and/or help understanding exactly what stage of liver damage you have and ways that your liver health can be managed while you are waiting for whatever options may be next.  Drug companies are currently studying all oral treatments for Hep C and their effectiveness for pre-transplant patients, patients who have Cirrhosis and decompensated livers.  Your hepatologist may be able to recommend you for such a trial, or he/she should be developing a care plan to help your liver function as well as possible until these new drugs become approved for use or get you referred to be listed for a future possible transplant.  Again, I don't know a lot about this stage of liver care, but there are others on this forum who can help you prepare a list of questions for your hepatologist.
Advocate1955

[heart_in_the_keyes]

thanks everyone for your help...I will post back to all of you.  My doc's nurse suggested that I send her an email of all the questions I need answered...any suggestions what I should include in that email...I got a copy of the last blood work that I had and my platelets are very low and that was the only abnormablity on the tests however she says he goes by the Meld score.  So I really want to be well armed with questions...

[nonsensical]

Risk outweighs reward heart_in_the_keys.  Transplant is done under very controlled circumstances and transplant centers do everything in their power prior to and during the procedure to make sure the operation is a success.  Of course there is risk associated, but there's risk with any type of surgery.

Given the state of your liver, the treatment drugs could shut your liver down quickly and completely and there would be no liver on standby and the outcome would almost certainly result in death.  The odds of SVR with a decompenstated liver are extremely low as well, even with triple therapy.
With a new liver you will have much greater odds of attaining SVR.  If there's a will, there's a way and hopefully you will get the support you need to get through the transplant process.

Good luck

[Advocate1955]

I am confused, but I think that what you are saying is that your insurance company believes that your liver is decompensated and therefore are unwilling to approve coverage for the meds for triple tx.  This may be because your insurance company believes that treating will be too risky for the health of your liver (i.e. may cause your liver to fail and cause more serious complications).
Please post again and let us know what your doctor says at your next appt.
Advocate1955

[heart_in_the_keyes]

hi hector...have been diagnosed with C since '96...have no ascites, bleeding varices or hepatic encephalopathy...(take xifaxon)...I am not sure what my meld score is..see my doctor in 8 days..will be sure to ask.  He wants and has wanted me to be put on liver transplant list for the last couple of years...I want the virsus gone...if they can kill it my liver can start re-establishing itself...in '96 they told me I had 30 days to get my affairs in order..doctor at that time was actually crying...after he calmed down I asked him to go get me a doctor who had a progressive attitude and here I still am.  Have gone through a couple of other trails...non-responsive to a degree but I truly believe that as in '96 until this Spring when my job was outsourced I worked 60-70 minimum a weei.  I am independent...my brothers have their hands full taking care of my 88 yr old mom (strokes,demetia) and live out of state.  I don't even know how I would handle doing a transplant...they is why the trial was so important.

[heart_in_the_keyes]

here is what they said: "information received does not indicate that the member has compensated liver disease, as indicated by the test results from their doctor which show a Child Puh score above 6 indicating decompensated liver disease."  so I guess my liver is decompensated enough to warrant a liver transplant but not the meds to kill the virsus (C) which caused the decompensation.  Not a drug user, drinker or smoker.  Healthy otherwise except for the side effects of this liver.  It just does not make any sense to go through a liver transplant and then be treated for the virsus...why infected a perfectly good liver....plus the effects of the anti rejection drugs plus the other 3 would be brutal.  

[heart_in_the_keyes]

doc #6 in US...I went to the meeting..got my kit..coordinator told me everything had been taken care of...called her in 10 days because I had not received notification of when drug where coming except from the drug company that handles the whole transport and they told me I hadn't been cleared...

[HectorSF]

The only way this makes sense is if your cirrhosis is decompensated. Not compensated.

"insurance company said no due to liver being compensated but they ok'd liver transplant"
I think the insurance company is saying your cirrhosis is DEcompensated.
Have you had ascites, bleeding varices or hepatic encephalopathy? What is your current MELD score?

Treatment for hepatitis C treatment is not recommended for patients with decompensated cirrhosis as they are usually too ill to handle the powerful drugs  of hepatitis C treatment. The treatment could cause your liver to get worse or completely fail. So the only option left is a liver transplant. Then the hepatitis C is treated after the surgery and recovery.

Good luck!
Hector

[Idyllic]

People at insurance companies are paid to say no at the initial part of the process. You have mentioned several factors that could be nisperceived and/or create misunderstanding or confusion. Namely that you have compensated cirrhosis and the insurance OK'd a transplant.
Further you indicated you are going to participate in a trial.

We could speculate and present many scenarios that could be causing the problem but truly it would help if posted the reason for denial as well as other details you feel may be related.

Understanding the exact nature of your insurance company's position is crucial since it may be up to you to coordinate between your doctor's office and the insurance and/or all other parties participating in your treatment.

Be sure to keep track of the person you talk to at which place as well as the time and date.

Sorry this is happening. It can be a real hassle in the beginning.

[orphanedhawk]

This subject has been covered here from time to time. The insurance company may deny you hoping you'll accept their decision and just go away.
You must be proactive and get your doctor's office to assist you.

Good luck.

[frijole]

My experience with insuarance companies leads me to believe they think they can override doctors.  However, they really can't and your doctor probably needs to provide a lot more information.

I would like to know if you have cirrhosis and have already been evaluated for a TP or if you were just speaking in general.  I have early cirrhosis and just completed treatment.  

You said you were scheduled for a trial.  Normally you would not have to pay for your medicines except any drugs allowed but not covered by the trial such as procrit or neupogen. In fact a lot of patients choose trials because they don't have any insurance.

How knowledgeable is your doctor? Is he with a TP center?  If you are not participating in a trial, your doctor should be able to provide the insurance company with what it needs to okay your treatment.  

Welcome to the forum and ask away....

frijole

[nonsensical]

An after thought.... You stated your liver is compensated which means   it is still functioning well enough to do it's job.  Decompensation is when the liver is so damaged that it unable to perform it's function.  So if you have cirrhosis and the liver is compensated there should be no reason for insurance denial.  I do not know what insurance company policy is regarding decompensated cirrhosis and treatment.

[nonsensical]

An insurance company cannot deny coverage for triple treatment of HCV genotype 1 as long as you have drug coverage on your policy.  If not, they still cannot deny any medical procedures associated with HCV unless it's a new private policy or a new group policy and there was a break of more than 68 days (I think) in coverage.  In that case, they will put a rider on your coverage stating the you had a pre-exiting illness.  Still, after a certain amount of time passes, usually a year, they will cover the treatment.  If none of those scenarios apply, there must be some type of miscommunication between your doctor and the insurance company and you may want to consult with your physician because it can be worked out.