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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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Resmetirom receives top billing today in a prestigious medical journal

Today marks a significant milestone for Madrigal's NASH/MASH program and a major step forward towards securing the first-ever FDA approved treatment for NASH (MASH).

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Encephalopathy (HE), a visit to an ancient brain

Hepatic Encephalopathy (HE) -- A stranger lives inside me.

I've talked with many who have experienced the condition but this was my first time. It was very different from what I imagined.  This blog is particularly aimed at care givers and family members who find themselves interacting with someone that they don't recognize.

It is not an uncommon course with this disease in its advanced stages for the patient to become angry, short tempered, and even mean. We see reports from people who no longer recognize their loved one.  The warm, gentle, loving person they have known has somehow become a vengeful tyrant. This makes the job of caring for the needs of that patient very difficult. I can't help much to lighten the burden but perhaps a bit of understanding can make it easier to accept.

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An update on my cancer therapy

Many of our members have asked how I was doing so I thought it was time to provide an update.

A quick review. I was having very painful time with back muscle cramps and had a fall which resulted in 3 compression fractures.  While dealing with that I saw my PCP who identified that I was having a critical calcium event.  My calcium was very high and that can cause a lot of damage to heart and kidneys besides potentially being fatal.  A rush to the ER led to admittance to the hospital where, during the treatment of my calcium problem, they diagnosed me as having multiple myeloma stage 3 (the highest stage) and immediately put me on a chemo program. 

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Fatty Liver is Gone, Understanding the New Definition

Because of concern about stigma and the increasing knowledge about how fat in the liver leads to disease, the AASLD has officially adopted a new naming convention for our disease.

The new definition is under the umbrella term "STEATOTIC LIVER DISEASE", and what we know as NAFLD is now MASLD.  NASH has been changed to MASH.

We are sponsoring a webinar for patients who want to understand the change this coming week.  I encourage you to attend. This will change the way your physician talks to you about this disease. If you can't attend but would like to view it, we will distribute the recording to all registrants so go ahead and sign up.

CLICK THIS LINK TO REGISTER FOR THE WEBINAR

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FALLS, do we care about "little" falls?

In my last blog I talked about my fall.  When I fell I did quite a bit of damage and have 3 compression fractures to show for it. I've been surprised by the number of people who have commented about falling and most have had no problems and dismissed the event. Perhaps its time we took a closer look.

This is an MRI of my back after the fall.

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After My Fall --- Old Folks and Old Cars Tend to Fall Apart All at Once

In my last blog I talked about falling and how bad that was for old folks.  I mention that frequently in my communication with members of the foundation and I was disgusted that I tripped at night and had a hard fall.

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Dang Me, Dang Me, I broke another rule, but this is more serious

My hepatologist and every other doc always emphasized don't fall. I fell.

Last week, In the middle of a midnight bathroom run, I tripped and fell.

Not a terrible fall as nothing broken and no head impact but a big setback in my recovery from the back spasm.  NASH patients tend to become riskier to falls as the disease progresses. That one of the reasons for keeping an exercise routine.

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Can a patient beat NASH? Follow this blog, Sarah Larsen training for senior games.

Did you ever feel defeated by liver disease? Sarah Larsen decided to fight back.  We are giving her a special blog space where she will document her training journey from patient to athlete training to compete in the World Senior Games.

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Health leaders who don't follow their own advice, I spit on thee

People who promote something, like politicians or health advocates, and then don't practice what they preach get my goat.

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