When you are in a whirlpool you can't see the form of the beast and you only experience the local effect. AI is an information whirlpool drawing us ever more rapidly into a vortex whose ultimate consequence is unknown.

The concept of the "information singularity" is associated with the futurist Ray Kurzweil. In  "The Singularity Is Near," published in 2005 Kurzweil discussed the idea of a point in the future where technological growth becomes uncontrollable and irreversible, leading to profound changes in human civilization due to advancements in artificial intelligence and information technology.

Living with HIV comes with unique challenges, and understanding MASH (metabolic dysfunction-associated steatohepatitis) is crucial for those affected. Join us on Thursday, August 15, 2024, from 10:00 am to 11:00 am EDT for an informative and interactive webinar featuring Dr. Meena Bansal, System Chief of the Division of Liver Diseases at Mount Sinai Health System and Director of the MASLD/MASH Center of Excellence at Mount Sinai in New York.

Madrigal today released their first report of results following FDA approval of Rezdiffra for the treatment of NASH, in conjunction with diet and exercise, in March. Their results are on track according to company forecasts but there is much left to do.  Here are some key points.

The approval of Madrigal's Rezdiffra earlier this year was an important step for patients but we have a long way to go for robust therapy. Happily, research continues and there are important phase 3 trials underway from Akero Therapeutics (Efruxifermin) and 89Bio, (Pegozafermin) targeting FGF21.  These are interesting  as they more directly address fibrosis and are being tested for F4 patients which could be important as Rezdiffra is only approved for F2/F3.

Monday afternoon my wife and I will kill a dear member of our family.

Mercy killing, a difficult concept.  What do you do when the body fails, there is no hope for recovery and only a lingering and painful death will be the result?

I appreciate that I have achieved remission with my cancer and I was thinking about the fact that my liver, even though I have cirrhosis, managed all of the chemo drugs I've had pretty successfully.  In our patient groups we often see people who die quickly when a second problem appears. 

The Fatty Liver Foundation is very focused on NAFLD/NASH and how to manage it as patients.  A much broader need is coping with the challenges of life in the context of chronic illness.  The ordinary things of life like having food or shelter often become a problem for chronically ill people.  We have created a new program called The Wellness League designed to help people find the services they need beyond just medical.  A key tool is our SEARCH function.  I invite you to check that out and become member of thewellnessleague.organd I would love it if you would consider joining our Sharing Journeys project.  Your personal experience will help future patients learn about the patient journey.

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.

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.

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.

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?

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. 

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

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.

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.

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.

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.

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?

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.

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.