donate now The Fatty Liver Foundation

The ICER man cometh, do you know how insurance denies you drugs?

New drugs are coming for liver disease, but will we be able to get them approved by insurance?

In a few weeks the FDA will have its public comment meeting for obetacholic acid for treatment of NASH. This is in response to an application by Intercept for approval.  If FDA gives it a go ahead, the issue of the cost of the drug will be the next big thing. 

Remember this, the insurance company is not actually in business for your health. They don't get bonuses because you were cured. Their job is to not spend all of the premium money so they carefully manage what they are willing to pay for.

Read more

Here at last! Here at last! The CARE SURVEY is here at last

With drugs coming soon, I REALLY NEED YOUR HELP!!!!!!

In the 2022 survey only about 10% of the patients contacted bothered to help. We need to do better. Here are links.

2023 Care Survey English

2023 Care Survey Spanish

Read more

Important information for NAFLD/NASH patients

The FDA will consider two drugs for treatment of NAFLD/NASH this year. I know we have been saying that therapy is coming for several years only to be disappointed. It is easy to be a little cynical about the prospects. This is a government agency and it seems like delay is what all agencies do best, but I do believe we will finally have a chance to move forward.

Read more

Dilemma, what to write about, butt crack deoderant or patient abuse

I've been seeing ads for butt crack deodorant and I've wondered what societal changes have made that a "thing". I've been soooooo tempted to write an April Fool blog about all the things that could go wrong if sniffing replaces fist or elbow bumps as the way we greet people in an age of pandemic fear. But, I'll leave those imaginings to you. I want to talk about doctors who are clueless about liver disease.

Read more

There are some things that make me mad, but who should I blame?

If you are like I was, I knew that our life expectancy in this country had declined recently, but I had no idea. I was shocked by this report by NPR.

life_expectancy_2021.JPG

Read more

Would you like to tell the FDA how you feel about having a NASH therapy available?

FDA has scheduled an adcom (advisory committee meeting) for Intercept's candidate drug to be the first approved treatment for NASH.

This is the public's opportunity to provide input to FDA as part of its deliberations about approving a drug. If you would like to have a chance to add your views to the discussion, this is how you do it.

 

Read more

Being unwell sucks, but we need your help

I know what it is to be unwell, but I need you to think about this result from our State of Care Survey. Only 16% of you reported feeling like you got enough information from your doctors.

info_at_dx.gif

Read more

The State of Care for NAFLD/NASH patients, So many things need to be better

I invite you to read the report of the 2022 State of NAFLD/NASH Care in America Survey. This survey looks at the experiences of patients from the perspective of their day to day lived experience. Many of the results are disturbing as they highlight how poorly liver disease is managed in the broader community.  There are certainly pockets of excellence and patients fortunate enough to live in their footprint are well served. For many, the path is more difficult than it should be.  We hope this work leads to progress in the care of the patient community at large.  To read the report click on the image below.

Read more

It's Charlie Brown time again with FDA, will they or won't they approve a NAFLD/NASH drug

People who are lost can walk in a circle and get back to where they started. It is a bit like that for the patient community.  In 2020 we were getting ready for the FDA to hold an adcom meeting on the Intercept drug Ocaliva. Adcom is where they take public testimony and as patients we wanted to speak. This was to be the first drug that had met the targets set by FDA for a NAFLD/NASH therapy. We all knew it wasn't a perfect solution but when there is no therapy at all it was a place to start and we were very hopeful.

Read more

Where have all the heroes gone? Gone to graveyards every one

My grandson asked about our family tree for a school project and I found myself thinking about the changing character of our society and wondering how we have become so dysfunctional.

I have been fortunate to have lived in a region that may be one of the last parts of the country to have retained aspects of the society that settled the West in the 1800's.  Both sides of my family were part of the wagon train movement that came west and settled in Idaho.

Read more

New guidance for NAFLD/NASH is here, what does it mean for patients

The new guidance for managing NAFLD/NASH has been officially published. This is the official guidance by the American Association for the Study of Liver Disease (AASLD) and it is intended to provide primary care and other providers with the information they need to provide care for their patients. A key element for us is that it supports early intervention for high risk patients and provides clear guidance for how to risk stratify and to determine who needs referral to a specialist.

Read more

Would you risk your life to save your child? Should other people protect your child?

Very few parents would say that they wouldn't take risks to save their child.  In fact many people would try to protect unrelated children from harm. These impulses are just part of our nature. But what are the limits to that? At what point do we stop being concerned about harm to our own or other children?

OK, this is a really strange question for a patient health blog but stay with me for a little while.

Read more

For Patients, One Battle is Ending, But a Bigger One is Next

When I was a newly diagnosed patient with cirrhosis, one of the things that offended me was that my doctors had followed practice guidelines that said not to screen for asymptomatic disease. I had to be hospitalized before I learned anything about my liver getting sicker for at least a decade. Many of you can relate to that, as you have told your stories in the groups.

It hasn't been officially published yet, but the new guidance by the American Association for the Study of Liver Disease (AASLD) will soon release new practice guidance. Here is a summary slide of the key points.

Read more

NAFLD Stigma Survey Project - Interested in Participating in a Patient Survey?

We have been asked by a colleague to help distribute this study on stigma to the patient community. Please find below information about this opportunity to share your thoughts and contribute to NAFLD research by completing an anonymous survey:

Read more

Intercept announces resubmittal of Obeticholic Acid to FDA as a treatment for NASH fibrosis

INTERCEPT RESUBMITS NEW DRUG APPLICATION TO FDA FOR OBETICHOLIC ACID IN PATIENTS WITH LIVER FIBROSIS DUE TO NASH

A SURPRISE CHRISTMAS PRESENT FOR PATIENTS WITH FIBROSIS. IF YOU WOULD LIKE TO READ THE PRESS RELEASE CLICK HERE.

A bit of history may be helpful to many. Obeticholic Acid (OCA) was filed with FDA in 2019 but FDA didn't go through with a planned patient meeting called an adcom and instead issued what they called a complete response letter in June of 2020 and raised questions about safety.  They did not reject the application they just punted.  The department was going through some reorganization at the time and from a patient perspective we did not believe the sequence was proper but we were stuck with it.  Most companies would have abandoned the effort at that point.  To their great credit Intercept believed in the drug and continued their studies to answer the safety questions that had been raised.  Now they have much more data and good evidence of safety which we believe should resolve that issue.

Read more

Madrigal reports excellent phase 3 results for Resmetirom -- 1st treatment for NASH???

Madrigal Pharmaceuticals today released strongly positive results for its NASH drug Resmetirom which are far superior to what almost anyone expected.

Their strongly positive results were across the board for the pivotal MAESTRO-NASH study in patients with fibrotic NASH. Resmetirom achieved highly statistically significant results in two key primary endpoints with both daily oral doses, 80 mg and 100 mg, relative to placebo. Specifically:

Read more

I took my liver for a spin on Velacur, a new liver screening test you should know about

Patients who have been on this journey with me over the years know my story, but for the new folks, I've been a test dummy and I've been able to track my progress with my darned cirrhotic liver over the years. Here is a chart of my progress through June of 2020. Notice that I've confirmed my progress with both Fibroscan and MRE and I have progressed from a Fibroscan of 21.5 at diagnosis to 9.6 in 2020. Technology is advancing and I recently had an opportunity to get a Velacur test, a new kid on the block offering liver tests.

Read more

Can Healthcare Be Fair? -- Reflections on Healthcare and the Patient Experience

I was saddened to see our most commonly searched terms within The Wellness League's FindHelp tool. We know the community is fragile and has many health issues but nearly 53% said food was their biggest concern. Imagine that, in a society where excess calories are our biggest driver of long term illness, the unwell struggle with food issues.

Read more

Liver disease patients report not being satisfied with their medical care

We presented a poster of the State of NAFLD/NASH Care in America survey at the annual conference of the AASLD, the American Association for the Study of Liver Disease, last week. If you would like to look at a pdf click on the image below.

Read more

Now is the time, the Walrus said, to talk of many things

Of shoes and ships, of sealing wax and cabbages and kings -- and NAFLD and NASH and how we treat those things.

The Foundation's recent State of NAFLD/NASH Care in America survey highlighted the problem of the lack of understanding of liver disease, even after a visit with a specialist. How do we manage a disease when only 13% of patients understand it even after seeing a specialist?

Read more

connect