We all know the issues. Too much disease, no treatments, a looming health crisis made worse by the pandemic. We are here on International NASH day and it seems like an apt time to wonder if there might be a better way. If you haven't registered for the event I invite you to do so by clicking on the image below, but I also invite you to think about the future of research and how we as patients can support a better way.
Something that is not understood by the patient community is that the federal funding that largely drives basic research is not well organized. It is not unlike the situation with your care. Liver disease was largely ignored and was just one of those chronic conditions that came along with age or alcohol. We didn't know that our modern world would bring with it a change in diet which we now see clearly as a slow destroyer of our health.
Research into the problems of liver disease developed as little stickons to the big targets of heart, cancer, and diabetes. Because liver disease is comorbid with so many other issues those specialties devoted some attention to the organ but the result is that we are now spending some significant funds on the problems but it is fragmented and not as effective as it needs to be. People are dying every day that might be helped by a more effective system.
The public/private partnership that is our healthcare, research, and drug development system today is performing miracles and deserves our admiration and support. However, it is becoming ever clearer that dealing with liver disease and metabolic research within the siloed format of the current system is not optimal. When we consider various federal agencies such as the U.S. Department of Health and Human Services (DHHS), National Institutes of Health (NIH), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and National Cancer Institute (NCI) we see that each is funding aspects of this disease process. It is clear that there has to be a better way. The Aids Clinical Trials Group (ACTG) may offer a roadmap.
We believe that by consolidating research funding and including a healthy amount of patient oversight in the decision making process a more effective program of research can be achieved. Being better doesn't happen quickly but we hope you will support us in our efforts to see better/faster development of treatments for liver disease.
Our best to you and yours and may the vax be with you.