KAISER PERMANENTE Denies First Time Request for First Ever Consult with Hepatologist.......

[Troutwhisperer]

I am 70 y.o. male with FLD diagnosed via elevated liver enzymes & biopsy in 1986. In January I independently had the Liverfast test at a Quest Lab. SAF score is S0-A1-F3 (significant fibrosis). I recently also had my first ever Fibroscan. Kaiser also refers to the procedure as: liver elastography w/o imaging. CAP median score is: 332, kPa median score is: 2.7, also two ultrasounds this year. “Liver has smooth contour and hyperechoic.

I recently made request for referral to and consult with Hepatologist. I believe it is significant that my doctor was not interested in receiving or viewing my independently acquired results of the Liverfast test. I also mentioned to my doctor in my request Pioglitazone and positive results in clinical trials with the amount of fat being stored

in the liver being reduced. This was first observed as a side affect in type 2 diabetes patients and prediabetes patients who were taking Pioglitazone. Also, I was hoping that by connecting with a Hepatologist it might help indirectly with me being able to participate in a clinical trial related to development of a treatment for liver inflammation, scarring (fibrosis), and NASH.

The following is the response I received from my doctor regarding my request for referral to a Hepatologist.

“ Dear Robert,

There are some studies about Pioglitazone for the management of fatty liver, however, it is not usually recommended if patient does not have diabetes, given that Pioglitazone also has associated risks like weight gain, heart failure, and fractures.

As for the referral, usually, referral is done if patient has increased liver enzyme, other features of advanced liver disease, or fibrosis is at higher stage.

Still main management of fatty liver, it is very important to abstain from alcohol, maintain healthy lifestyle and weight.

For monitoring, I recommend check liver test every six months.

-Dr. Xxxxxx. “

I apologize for the length of this post. However, my greatest comfort and support comes from members of the FLF. I also know that members are intelligent and your thoughts, opinions, and advise are heartfelt. I appreciate all who read my post. I believe you already know that this rejection is difficult to receive and accept, in fact I absolutely am NOT OK with it. If you choose to comment I assure you I am so great full and blessed.

Sincerest Best Wishes for Everyone,

Troutwhisperer

[nash2 Partner]

I suspect that you didn't actually get a FibroScan. It sounds like it was an ultrasound machine using what they call ARFI but read the report. They are different devices and the scoring for fibrosis is different. A kPa of 2.7 with FibroScan would be that of a newborn. With ARFI 2.7 is advanced fibrosis but it should be clear in the report from the radiologist what technology they used.

Beyond that, Kaiser is a typical insurer in not wanting to move patients who aren't critical to specialists. They will probably see you if you go by ambulance.

Wayne

[Troutwhisperer in reply to nash2]

I would definitely agree that my stiffness score should not be that of a newborn. What I don’t understand is the first page of the report says FibroScan with the trademark stamp (cap “R” inside a circle in fine print above and to the right of the letter “n”)at the top and has the ECHOSENS logo in the right margin half way down the page. Immediately to the left of the logo in fine print it says: FibroScan 530 Compact (SN:F80603) - Probe M (SN:76307) - G3.1

“Fibroscan(w/ trademark “R” in fine print inside circle) is a medical device intended as an aid for the management of patients with liver disease....must use certified operator...values to be interpreted by physician experienced in dealing with liver disease...using complete medical records of patient...number of valid measurements and their dispersion. Probes must be calibrated according to manufacturer’s recommendations. (Followed by ECHOSENS, w/ trademark “TM” in fine print.” Above this statement in center of page are twelve images numbered, and each small image is made up of two small rectangular boxes and one larger square box. The two smaller rectangular boxes share a box at the bottom of the two rectangular boxes, the third square box within the image has its own “box” at the bottom. So, for image numbered “#1” of 12 the first box has: 348 dB/m box at the bottom of image #1 has: 5.6 lil’a

I don’t know if any of what I have shared above confirms that I did or didn’t have a Fibroscan, or it was attempted, but has multiple errors possibly by the medical assistant giving the test or for other reasons is not clear to me. The conclusion in the report that I am “F0” seems impossible to me.

What is clear is your initial comment which suggests to me I would probably be better served by looking for a new provider who would take me on. A provider who would agree a consult with Hepatologist is warranted. Sometimes you get what you pay for.

So my search begins for a provider who will hopefully help me in a way that differs markedly from KP.

Thanks so much for your motivational comment.

Sincerely,

Troutwhisperer

[nash2 Partner in reply to Troutwhisperer]

That is the description of a FibroScan report. I'd suspect operator error with a result so low. Just getting older makes the liver more stiff even without disease and a healthy young adult will be under 7 but the lowest possible reading is 2 so go figure.

[Troutwhisperer in reply to nash2]

Thanks Wayne. You are the BEST!!!

[sarah430]

I have Kaiser and a mild case of NALFD and just met with a liver specialist. She treated me like I was wasting her time, which I didn't appreciate. But I don't care - I'll do what it takes to seek the best care for my health.

Anyway, I would just keep advocating for yourself. You can try filing a grievance or perhaps seek an appointment with a different general practitioner. I think I was referred because the reasons for my fatty liver are a mystery. I don't have any of the typical risk factors. Good luck!

[Troutwhisperer in reply to sarah430]

Thank you for your response. I do believe the most knowledgeable person any liver disease patient should see and consult with is a Hepatologist. It appears so far the only chance of that happening is if you have advanced fibrosis. My Fibroscan certainly is showing an impossible liver stiffness score of 2.7 which means I have the liver that resembles that of an infant. Even for a 70 y.o. male with a healthy liver my score is not possible. I believe I will have to leave Kaiser inorder to see the appropriate specialist. However, I will be filing a complaint as you suggested. We all need to stand up and push back.

Sincerely,

Troutwhisperer

[kensimmons]

To me it sounds like you are fine and do not need to purse this at this time and you may have anxiety (Note - I am not doctor, I am just guessing). Live well for six months and repeat the tests just as your doctor advised unless you have some worrisome symptoms of which you didn't mention. I think your doctor's letter was polite and completely appropriate.

BTW if you live a very healthy lifestyle of no booze, no cigs, healthy food you most certainly can have a liver in very good shape.

Congratulations, it sounds to me like great news! Thumbs up!

[Troutwhisperer in reply to kensimmons]

Thank you for sharing your thoughts. I appreciate your support as we are all in this together.

Best Wishes,

Troutwhisperer

[sophiaS1980]

I used to have kaiser it is good if you don't have a serious condition, but it is the worst if you do. I no longer have them and never will.

[Troutwhisperer in reply to sophiaS1980]

You are so right. It’s a David vs. Goliath situation. It really chaps my hide that they spend so much money on advertising. That alone should suggest how well they are doing financially. It also proves their formula for “success” works like a well oiled machine. Of course if you have a serious illness and decide to quit them due to indifference that becomes a very acceptable outcome for them. If you are an insurance provider you need a lot of healthy members, and always new members being recruited. It does prove self promotion is unfortunately money well spent. My dream, besides a clinical trial break through medication that comes to market, is legal action that gets providers attention. It’s not even totally about “winning”. It’s about doing something dramatic that jolts them out of their indifferent attitude re: NASH and especially NASH patients. I always wonder what attorneys who have a NASH diagnosis, and their respective law firms are thinking when it comes to health care systems that are reluctant to think of the health and well being of their members as their first priority. Especially when it comes to a disease that kills. Sorry, I just can’t put a positive spin on this issue.

Best Wishes to All,

Troutwhisperer