Did you ever wonder how we think about this disease from a societal perspective or how we speak to drug companies? Here is a slice of that.

[nash2]

We are all faced with very large challenges. We approach a common problem, that of liver disease, from very different directions but our shared goal is better health for millions of people. We seek to limit suffering and death and to minimize the cost to society of large numbers of cirrhosis patients. There are many ways to consider this patient cohort but no analysis produces less than millions of victims, vast suffering, and system crushing costs.

Therefore, any solution must be at scale and long-term. As you consider our proposals we hope that you consider them from that perspective. We have no interest in marches and fundraising stunts because none of those can address the structural and social changes that must happen if we are to have any real effect. Anyone who hopes to run clinical trials in liver disease should participate.

Just a couple of comments about our perception of outreach. The digital world is a sinkhole that easily leads participants into less than ideal situations from both costs and ethical perspectives. It is, however, the message platform of modern society, and going forward is an aspect of relevancy in the public space. Those same kinds of considerations led us to be a non-profit, rather than to join the marketers of product on the web, when we decided we wanted to make a difference for liver patients. As a non-profit, we carry the first assumption of trust, which we must guard carefully, rather than being assumed to have motives unrelated to patient success. In the digital space, the key to trust is to be ad-free. The alliance with Health Unlocked is based on building a community that is totally patient focused with no product marketing.

I would propose that as you think about these proposals a central theme should be how to develop and maintain trust within society so the messages about health, and more particularly, for research needs, messages about clinical trials can bear fruit. As patients, we need you to be successful. For us, this agenda is life and death in the end. We hope that you can join us and others to accomplish these goals.

For more information, visit our main website.

fattyliverfoundation.org/pr...

[mauschen]

I take 16 life saving drugs per day plus 2 inhalers and a monthly injection. I am always as active as can be and apart from a few chocolate biscuits, I eat a very healthy diet. Everything is cooked fresh apart from an odd tin of Baked beans with my whole meal toast.

Perhaps drug companies don’t want to speak to us or hear our stories, or have us participate in clinical trials. Why? Because there might be a causal effect, a pattern emerging from the medications we take on a daily basis?