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The Sky Is Falling, we are doomed, -- well, maybe not

It is unsettling when the political warfare that has gripped our country in recent years spills out of the halls of Washington threatening vast change.  As a patient community, we are concerned about what the changing times mean for us as many of the details can represent life and death for us.  The politicians and the other clickbait artists search for triggers that can generate a viral message, constantly driving our concerns.  I thought it might be useful to take a step back and consider where we stand today.

As a person with liver disease myself, I am quite encouraged by the state of our particular slice of life.  Remember, until recently we had no drugs to treat our diseases.  The liver was mostly ignored until a patient developed serious cirrhosis consequences.  Today we have standards of care that call for early detection of liver disease.  Getting that deployed effectively is a work in progress with primary care, but is a huge step forward.

In the area of therapy, for the first time we have a drug approved for F2/F3 disease in Rezdiffra from Madrigal.  We are also seeing increasing evidence that the GLP-1's as a category offer some benefits for us.  Lots of work to do yet, but we are optimistic.  Newer drugs are in trials for FGF21, for example, which are very promising.  New therapies are still years away, but the progress being made by our research firms is solid and we expect this to continue.  Trials to find treatments for F4 disease are ongoing and we are optimistic that they will be positive.

A major issue for patients is always insurance coverage and a nervous time for us was how Rezdiffra would be paid for.  We met recently with Madrigal for an update and I'm happy to report that insurance coverage now reaches about 80% of covered policies.  The only concern for us is that there are still some insurers who require a biopsy before they will approve therapy.  That isn't required by the FDA or the guidance from the professional societies, so I believe it is just a scheme to stop people from getting treatment.  I can't mention names as I'd probably have to talk to their lawyers, but my advice is to ask and consider changing carriers if yours requires biopsy as it is uncommon.

A particular system that I feel I can name is the VA.  It is unbelievable to me that the VA requires a biopsy before they will treat a veteran. I realize that it is a scheme to avoid the costs, but who deserves to be treated fairly if not our vets.  The VA seems to be immune to criticism of this policy but perhaps with the new regime that can be addressed.

Looking at our situation broadly, this is the best of times that liver patients have had and we expect progress to continue.

For those who haven't seen it yet, the 2024 edition of our Care Survey is ready.  It gives a view of how patients experience liver disease over time, and how contact with medical care evolves.  We are beginning to see changes in patient care that are encouraging as the education efforts of patients and physicians begin to show results. I invite you to click on the image below and take a look at the report.

 

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