When you are dying slowly no one cares

When you think about your experiences with healthcare are you pleased?

  • Have you ever felt that the medical industry wasn't interested in you?
  • Have you struggled with vague symptoms that were mostly ignored?
  • Do you think your condition should have been recognized earlier?\

I'll explain below but look carefully at this chart. It shows the increased risk of dying with different stages of NAFLD/NASH compared to the rest of the population.

I'll probably get criticized for this blog but let me be clear. I know a lot of very good people in the medical field. Many care deeply and they feel as trapped by the system as many of us do. I hope they know how much we value them but I've come to wonder just when is it right for me to be mad.

When you are dying slowly of chronic disease the system doesn't care much. There is no lobbyist for you. The money train doesn't run for you. Come back when you are a proper billable code. Even if you have finally arrived as a properly billable item, does the system treat you as something important or push you through the grinder?

The Fatty Liver Foundation is a gathering place for people battling for their lives, we see the tragedies and walk the road to hell with people dying of liver disease. In many ways the periods before and between the acute events that medicine cares about are the most difficult. The seemingly endless hours of being unwell are the things that healthcare decision makers, who are not yet themselves suffering, seem not to concern themselves with.

We argue for early detection and wellness to be the goals but our system rewards heroic intervention instead. There is talk of wellness and like all things touched by politics and power it isn't the patient's success that really drives decisions.

In our patient community we see the entire arc of care. There are medical miracles happening and some patients are incredibly fortunate. It goes all the way down to those unfortunate people who would have been better off to have not been seen by their doctors.

But, let's return to the chart above.  Note that all stages of disease result in dying earlier than the average and that includes simple fatty liver disease NAFLD. I'm offended by elements throughout the system but we frequently hear reports by patients of being told that fatty liver was not important. There are doctors practicing today who were taught in med school that liver fat was benign and despite all we know they continue to treat people that way.

We have nothing to sell and we offer our services free to all who might be interested, but in coming months I am going to be asking the community to help me document the things we face as patients. The system mostly ignores us as individuals but if enough of us are willing to combine our voices we have a chance to be heard.  When I think about the lives that the chart above shows are being lost prematurely, and I think about my personal struggle for diagnosis, I feel that I must at least complain. No one listens to me as an individual, but they might listen to us.

I'll be in touch.

Our SUNN Study (Screening for Undiagnosed NAFLD and NASH) report has been published and is now live on PLOS ONE, an international, peer-reviewed, open-access, online science publication. You can read it by clicking the link below.

Screening for undiagnosed non-alcoholic fatty liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH): a population-based risk factor assessment using vibration controlled transient elastography (VCTE)

The Fatty Liver Foundation has launched a public private partnership fund with the long-term goal of screening a million asymptomatic, undiagnosed individuals a year for nonalcoholic fatty liver disease (NAFLD). The SUNN Study was the pilot for that effort.  The next step is SUNN-2 with a goal of screening 20,000 people

If you would like more information click the image below.

NSF_Logo_R_334_x_84.png

This fund will provide a mechanism for public and private funders to join together in common cause with the patient community. By joining together we can work with local communities in finding ways to engage this threat at the only truly effective level, that of the patient within the life that they lead and the reality of their community.

 


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