I just finished reading a brief message I received a short while ago this evening from my Dr. Although I informed her two days ago of the results of my Liverfast test which stated “significant fibrosis” ( .72/ F3) my Dr. Stated they also look at my Fib-4 Score of 1.21. “ The Fib-4 score indicates cirrhosis is less likely. Continue to watch your diet, and exercise”, she stated.
I had an office visit with my Dr. this past Friday on 4/9/2021. This visit was my most recent in person visit. Dr. recently ordered bloodwork to check liver function as I have been requesting a Fibroscan, including facts supporting my request, for the past few months. My Dr. has told me recently in checking with gastroenterology that they are several months behind in doing ordered tests due to Covid. Also, it could be May before test is available. I expressed to Dr. my desire to learn extent of liver damage and that I needed more specific information that a Fibroscan would provide so I could participate in any appropriate clinical trials that were directed at patients who met specific qualifying criteria required inorder to be accepted into a trial. When my Dr. first entered the exam room she stated my recent bloodwork results were good. She said we would do bloodwork again in six months. I did not mention during this visit that I had the Liverfast test in January as I thought KP might say the results indicating “significant fibrosis” would make a Fibroscan test redundant and support a denial of my request as it isn’t needed. I had also entered my “numbers” in the online Fib-4 calculator and instantly received the identical score of 1.21. Again, we had never discussed my Fib-4 number as being an important piece of information. I didn’t want there to even be a possibility of discussing my Fib-4 score as it could be used to deny my request for a Fibroscan. Unfortunately in my Dr.’s email this evening that is exactly what happened. The implication is that KP believes, and I should also believe that the Fib-4 score trumps my Liverfast test result. Therefore I should not take seriously the Liverfast fibrosis score which states a finding of “significant fibrosis”. That just seems ridiculous to me. If anything the two tests taken together at the very least indicate the need for further evaluation. The response today from my Dr. implies to me that no further evaluation is warranted at this time. I totally and emphatically disagree. I believe KP has an appeal process. If true I will file an appeal, with no expectation of a positive result. I refuse to go quietly into the night.
I will ultimately pay for a Fibroscan, but I want to continue the written record I have currently of my fatty liver disease and NASH diagnosis, and most importantly their lack of support which also includes their denial of testing needed for appropriate evaluation of a diseased liver. Whether we are a patient, a research scientist, an educator, a patient advocate, school of medicine,
liver foundation, or concerned citizen ever accept the current indifference and lack of meaningful service that myself and other patients currently are enduring at the hands of managed health care systems. Make no mistake I was not singled out by and targeted to receive less than adequate care. I do believe we as fatty liver patients are being underserved by managed healthcare systems. It is not accidental. For me the proof lies in reading the posts and responses of patients and administrators. What drives the managed healthcare systems. The current systems in place are all “ for profit” entities. Consider in Northern California alone Kaiser Permanente spends hundreds of thousands of dollars every year promoting itself.
I do sincerely apologize for the length of this post. If you have read the entire post you may have gathered that I am more than just a little upset. Any thoughts and/or advice is greatly appreciated. It’s now 1:11 a.m. Pacific Time.
I will stop now and head to bed. Tomorrow is already here. I care most about everyone who in some way is fighting to beat this disease. If we continue to fight the good fight our efforts will be rewarded!
Best Wishes,
Troutwhisperer
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Troutwhisperer
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Hey. I'm so sorry to hear about all the stress they are putting you through. I would definitely file an appeal with KP. There is no harm in doing so. I have lost so much faith in the Healthcare system today. It is all about money for them. I do not see the care for patients that should be there. File the appeal and see what happens. Good luck.
Thank you so much for taking the time to share your thoughts and encouragement. It means more than you know to me and I’m so grateful ! I will be filing an appeal soon.
Any of these tests have to be considered in light of your overall medical history. Bloods in particular represent a moment in time and can fluctuate quite a bit. Fib 4 should be considered over time to see what the trends are because it depends upon ALT/AST and those can vary a lot short term. It will have more meaning if you can go back to look at tests over the past several years to see what is typical for you. The LIVERFASt test is more sophisticated in that it looks at blood values specific to the liver but is a moment in time also which suggests that more information is needed since this was your first time using it. Since those are both bloods, you do need some tissue related test like Fibroscan to be the referee as the next least cost step. A real definitive test would be MRE or LiverMultiScan but both are expensive MRI strudies. That kind of follow up is unfortunately not the normal protocol.
Thank you for sharing your thoughts and advice. Prior to my receiving the email which denied the Fibroscan I had just offered to share the full results and report for my Liverscan with my Dr. At this time she has not indicated any interest in seeing or recording the results of my Liverscan. I will be composing and sending my response via email regarding the denial of a Fibroscan. I hope she will reply as to KP’s reasoning that the Fib-4 score and Liverfast results do not support a need for further evaluation which should include your suggestion of a tissue related test. Regardless I believe a Fibroscan will happen soon.
Again, thank you for sharing your thoughts. I do hold your opinion in the highest regard.
I do find it interesting that only 2 years ago the docs were saying that FIB 4 was worthless and wasn't used in primary care at all but now they are doing triage with it. That is progress but it has to be used in conjunction with other tools as it is too simplistic by itself.
Your point is well taken and I completely agree. I recently mentioned to my Dr. Via email that one or even two different means of using bloodwork, which support different conclusions, should be used as being supportive of a decision made arbitrarily that no further evaluation is needed at this time. I just can’t buy in to their conclusion.
Thank you for your comment which serves me in a very positive way to help reenergize me with a positive and assertive attitude. Yes, KP is a well oiled behemoth of a machine that chooses consciously to avoid doing what is right and warranted on behalf of those they are supposed to serve. I again do not believe their current position was arrived at accidentally, but reflects a pervasive attitude of reluctance which manifests itself when they are pressed to provide reasonable care with a response similar to what I am receiving. The message is: “ We alone have the power and the will to dictate whenever we wish what we will do or not do for any patient whether they agree or disagree. Only our opinion matters. This is our mantra and if you can force us to change.....well good luck with that!”
That said I may have Goliath standing in front of me, but I am willing to fight on for as long as it takes. Surrender is not an option.
Can you find a doctor that specializes in Nash and liver diseases. Nash2 is right, your blood work will change by the day depending on the state of the liver at the time. Mine goes like a yo yo. Good luck to you.
Thank you for taking the time to respond to my post. Suggesting that I find a Dr. Who specializes in NASH and liver diseases. I’m embarrassed to admit I have not asked my primary family practice Dr. at Kaiser Permanente for a referral to a Gastroenterologist or Heptologist. I have been with Kaiser Permanente for 13 years. I have never been referred to any KP specialist in all that time. For 12 years I assumed KP was doing all they could for me. I have been so wrong for such a long period of time.
One year ago I found the Fatty Liver Foundation. I have been doing a lot of reading ever since. Such a tremendous blessing. I am so grateful.
In addition to asking my Dr. for a referral
I will file my appeal of KP’s denial of my request for a Fibroscan.
If you don’t mind I have two questions for you. First I believe you are involved in a clinical trial. My question is do you know the name of the drug being tested? As you mentioned “itching” as a side affect I can’t help wondering if the drug might be Ocaliva? Itching is a side affect of Ocaliva. Intercept Pharmaceuticals successfully completed their Phase 3 trial of Ocaliva last year. With FDA oversight they were successful in halting and reversing patients’ fibrosis one full stage. However, as of June of last year the FDA has held up marketing the drug due to one side affect: “ severe itching “. Does this make sense??? I have not heard anything new since then. Hopefully the FDA and Intercept Pharmaceuticals are at the very least engaged in discussions to resolve the issue. This drug like would save lives!!! The drug is already approved by the FDA for use in treating Billiary Cholangitis, a disease of the liver’s bile ducts. In trials prior to approval patients experienced itching also. Yet the drug was approved. Hard to understand the FDA.
My second question is whether you would be willing to name your healthcare provider? I only ask because you mentioned a couple tests you have received that I have never been offered. My Dr. has never mentioned or discussed these possible tests. Maybe I really do need to make a change. It may cost more, but so often you receive what you pay for!
I do so appreciate that you cared to respond to my post. Again, thank you!
The itching is a side affect of the Nash. I have itched for years, it use to be a lot worst than it is now. Usually at night, hands, feet, around the neck and some people have said underarms. I mean it can get bad. I think it is better with the pill or my liver is better. I don't know off the top of my head which test I'm in, I will have to go look at the paper work. I have been a patient at OSU Wexner Medical for 20 years. My Dr. just retired a year ago and I'm now with Dr. Li who is all about finding a cure. She said 2 weeks ago, there is still so much more to learn about the liver. 20 years ago most Dr. didn't know what it was, but I'm finding more Doctors do today. Good Luck.
Thank you for your response. I think it’s great that you are doing a clinical trial. I agree with NASH2 that clinical trials do matter especially when it comes to advancing treatment. It seems there are a lot of clinical trials being conducted around the world. Ocaliva looks promising, hopefully any issues the FDA has will be resolved. It could be a breakthrough treatment for NASH patients. There are other companies with other drugs in various stages of testing. I don’t mind drug companies benefiting if they are successful developing a drug that saves lives.
I wish you all the best especially regarding your clinical trial participation.
You are hoping to not only help your liver, and at the same time benefit all NASH patients. Again, thank you for stepping up. I hope I can find a trial here in Northern California to participate in soon. Please let everyone know your results, especially if you and others have improvement in your liver health. Good Luck!!!
I am so sorry to hear that. It looks like you have a fight ahead of you. If you pay for the fibroscan and it shows what you have anticipated, Kaiser will most likely reimburse you. At least, I would hope they would. Let us know how you are doing. Good luck.
I appreciate you taking the time to respond to my post. All of us need support and encouragement. I feel so fortunate to have found the Fatty Liver Foundation a little more than one year ago.
I have been a member of Kaiser Permanente for 13 years. For the first 12 years I assumed that Kaiser Permanente was doing all they could for me. I heard what we all hear you just need to exercise and lose weight.
My requests for bariatric surgery were denied because my BMI was 33. I needed to have a BMI of 40 to qualify for surgery. Or a BMI of 35 if I had a comorbid condition such as heart disease, diabetes,.......NASH is not on KP’s list of qualifying comorbid conditions. I have been prediabetes for years. So I fall short of the bar they set inorder for me to receive their help.
I have even requested the”new” endoscopic sleeve Gastroplasty. An outpatient procedure where staples are used to create a “sleeve”, inorder to reduce the amount of food one can eat at any given time. The procedure is also reversible. However, my request was denied without comment.
Your encouragement and support serves to energize me and my efforts to receive help that so far has either been denied or not offered.
Sorry you are having such trouble getting your concerns advanced. You are not alone. It happens here in Canada too, but not because of profit models. For lack of facilities, lack of Drs, and an abundance of covid protocols, concerns take months and months to be addressed at present. Just keep on advocating for yourself, and stay positive.
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