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liver disease and the windmills of your mind

You may imagine that your brain is the most amazing part of you.  It is entertaining to wonder about how you can think about yourself and the mysteries of consciousness.  Self awareness is worthy of awe but the miracle of your body is really your liver.  I grew up in the computer industry and consequently I'm not as young as you may have thought. I remember a time when a single person could actually understand everything going on in a computer.  Today computer systems are so complex that no one can understand it all.  The liver is like that.  Thousands of interacting chemicals churning through  chains of reactions with a vast number of interlocking functions.  If you examine biochemistry in any detail you have to wonder how it is even possible for you to be alive. It seems unlikely that something so complex could persist over time.

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Research is finally showing the way to new drugs for liver disease

EASL, the key European liver conference just wrapped up and there is a lot of encouraging news for liver patients. The conference highlighted a number of trials of promising drugs of interest to our community.  We are finally seeing the payoff of the very difficult research aimed at treating our conditions.  Rezdiffra was the first drug to treat NASH but it will not be alone in the space for long.

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My wife lives with a 10, beware of poorly trained FibroScan operators

I just had my 6 month hepatologist meeting.  At issue was whether the chemo drugs treating my multiple myeloma had damaged my cirrhotic liver.

A bit of background, I was diagnosed as cirrhotic in January 2015 with a FibroScan score of 21.5. This was confirmed with both biopsy and MRE.  Over the next three years I was able to reduce that to 9.6, again confirmed with MRE.  I had been stable until my cancer crisis last year.

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Things that go bump in the night

I just had my 82nd birthday.  I imagine it is common for people to wonder about what's next when approaching the end of life. Whether you are devout or an atheist the thought of "what if I'm wrong" must visit sometimes.

I thought I'd share some personal perspectives with you.  We can't always focus on pain, pills, and disease. There is a natural tension between science and belief. Science has no place for a soul and religion promises that it exists.  How might this be reconciled?

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Your insurance company may be OK with you becoming ill

If you thought that having a drug approved for NASH/MASH was the last barrier to treatment you were wrong.  Now the insurance industry gets its turn to control patient care. The insurers are starting to publish their formulary for Rezdiffra and we will see if they care about you or their profits. 

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Pig parts for transplant. A brave new world?

Genetically modified pig organs are being used in early research at an increasing rate.  The goal is to meet the need for organs to serve the 100,000+ people on transplant waiting lists.  The organ shortage is large with 17 people a day dying for the lack of a transplantable organ.

Here is a link to an NPR story about the second person transplanted with an engineered pig kidney

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Bonita219 we hardly knew ya, a visit with the angel of death

We all know that there will be an end to our lives.  Mostly we push it out of our day to day and ignore it.  For most people age and increasing organ damage brings pain and a greater awareness of that long hidden reality.

I got a letter recently from a nurse with a note that said Bonita has passed. She asked me to send you this and said you would understand. The letter held 3 wrinkled one dollar bills.

Bonita219 gave me a valuable lesson in coping with the inevitable. She shared this picture as a young girl.

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In the Rezdiffra age a healthy diet is required, but what is that?

An interesting aspect of the Rezdiffra approval is that FDA mandates that it be used in conjunction with a diet and exercise program.  We have advocated that for years, but as a condition of drug therapy it will change the way doctors approach it. It will be important that docs deal with the issue in a nuanced way as we all have our own practices with regard to food.  I thought a return to basics might be helpful to patients dealing with the issue.

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I know you hate to be nagged to do something? But this is important

Stay with me for just a bit and I'll explain why you should participate in this program.  We need you to take our survey and I know we all hate surveys but this is an important patient led initiative. Less than 1% of you have taken the survey but if you care about the quality of patient care for liver disease you should participate.

As just one example, in prior years we learned that most patients felt that they didn't get enough information from their physicians about their diagnosis.  When patients don't understand their diagnosis it is a huge problem.

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If you are a NAFLD/NASH patient, we need your help

Liver patients have historically not been diagnosed until late stage disease showed up.  I hate that. As a patient community we have pressed our docs to diagnose earlier.  Many of you can relate to not being diagnosed early when the disease would be easier to manage. I was really angry that I wasn't diagnosed until stage 4 even though the signs were there.

The only way we get better treatment is to have data to support our arguments.  The State of Steatotic (Fatty) Liver Care in America is an annual survey of liver patients seeking to understand what their experience with doctors treating the disease has been.  We need your input to help us advise doctors where we, the patients, feel the care given needs to improve. Please click the link below to go to the survey.  It is completely anonymous.

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Ethics, would you participate in a clinical trial when treatment is available?

Now that the first therapy for NASH (MASH) is available in Madrigal's Rezdiffra it raises the question of how do we design future clinical trials.

As a patient, would you enter a trial knowing that you might get a placebo when a drug is available?

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Diarrhea, we hardly knew ya, but we should have

If you are a medical professional or a caregiver I hope you stick with me. You are important players in this subject.

Diarrhea is so common as a symptom and as a drug side effect that it is often minimized as an issue.  We have all had experiences with it in our lives and we also tend to avoid discussing those bodily functions so it slides below the radar.

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Madrigal speaks of providing best in class patient support, is that real?

So, Resmetirom ( Rezdiffra ) is approved but the real question is can you get it. How difficult is the process? How is it paid for? Does my doctor know how to manage it?  The release of a new medication is quite complicated and can frustrate everyone involved if done badly.

We have been engaged with Madrigal for several years now and I can attest that they set the standard for patient engagement and the commitment to patient health.  I'll give you a little background then direct you to the tools they are providing.

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Resmetirom, a new day is dawning for liver patients

How do we mark the dawning of a new age? As I think about what the first drug for NASH means I recall the journey we have been on.  In the beginning the liver was too complicated but early successes promised answers only to fail again and again. We rode the waves of optimism and crashed on the rocks when drug candidates failed. So many of us were told by our docs, you have NASH and I'm sorry but we have no treatment. How shall we note this day when the first treatment is approved? 

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The FDA approves Resmetirom for treatment of NASH

BOISE, ID – MARCH 14, 2024 – The Fatty Liver Foundation (FLF) heralds a significant milestone in the field of liver health with the U.S. Food and Drug Administration’s (FDA) approval of REZDIFFRA™ (resmetirom), developed by Madrigal Pharmaceuticals, for the treatment of metabolic dysfunction-associated steatohepatitis (MASH), formerly known as nonalcoholic steatohepatitis (NASH). This landmark approval paves the way for the first-ever medication for adults with fibrosis stage 2 or 3 due to MASH, marking a watershed moment in the pursuit of effective treatments. REZDIFFRA™ has been recognized by the FDA through breakthrough therapy and priority review designations for this crucial indication.

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Resmetirom vs traditional thyroid medications important differences

Based on the questions I've been asked, it is clear that in my previous blog about low thyroid I confused some people about the relationship between NAFLD/NASH (MASLD/MASH) and hypothyroidism or low levels of thyroid hormone.

Let me be clear.  You cannot cure your liver disease by taking meds to raise your thyroid hormone levels.

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What if Resmetirom is approved but you can't get it?

With the possibility of Resmetirom being approved soon, as patients, we need to be aware that availability of the drug will still be limited and some months away even if approved.  Beyond that many of us will not be proper candidates for the drug as it likely will be approved for a specific patient population and the response of insurers is still an unknown.  So what might the Madrigal research teach us that could help patients who can't qualify for the treatment?

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Akero data shocks the MASLD/MASH community

Akero releases topline results from its phase 2B trial of 96 weeks of efruxifermin (EFX) treatment in patients with pre-cirrhotic MASH to a surprised community.

First looks suggest that Akero sets a new standard for what is possible in the treatment of liver fibrosis.  While any potential drug approval is still years away, the HARMONY trial indicates that NASH/MASH fibrosis will be treatable with drugs.

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I had a medical crisis, I didn't die, I wonder why

Last summer I had a medical emergency.  The odds were it would kill me but I survived with few life threatening consequences.  The problems I had are commonly fatal for 80 year old men.  There is a message in my experience which I hope to share with you in this article.  It is a bit longer than most but stay with me.  Understanding consequences is critical to survival and as patients we ignore them at our peril.

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With Resmetirom on the horizon what else is coming up?

A decision on resmetirom is due in a couple of weeks. While we wait anxiously for the FDA to make its decision it may be worthwhile to take a moment and look at some of the rest of the field.

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