I am posting this message to the entire world to let everyone know that Hugh and I will not sue any doctor, scientist, researcher, hospital or non-profit if anything happens to Addi and Cassi as we embark on trying experimental treatments to save them from Niemann Pick Type C disease. No matter what happens during this journey, we assure you we will not take legal action against you and we are putting this is writing for the world to see. We are also willing to sign any release form necessary. Of course, this release form would need to be drawn up by lawyers!
Oh, the lawyers! There really needs to be a law against lawyers. The entire medical system is paralyzed because everyone in the ecosystem is living in fear of litigation. I can tell you that the medical system as it is working today is keeping children like ours from getting the types of treatments they desperately need. It has come to the point where doctors can’t even dispense an aspirin or an antibiotic out of fear of malpractice. There are too many bureaucrats who in turn are afraid of the lawyers and who literally want to stand in our way of getting productive treatments accomplished. I have come to understand that there are people in the medical and research system who do not want to help us, they simply want to keep their jobs and not get sued or are interested in publishing their next scientific paper.
Then there is someone like Mike Alonso at Jones Vargas, a lawyer who has been particularly helpful in making connections for us during this most difficult time. Talk about world-class.
And of course there is Dr. Marc Patterson, Addi and Cassi’s pediatric neurologist from the Mayo Clinic. Every single doctor in America should take a lesson from Marc Patterson on how to care for patients and what it means to be a doctor. Someone who you would expect would have a huge ego since he is one of the brightest people on the planet does not have one. I have not met one person who has not said, “Marc Patterson and wonderful” in the same sentence.
Dr. Steve Walkley at Einstein University and Dr. Dan Ory at Washington University who are true collaborative research scientists, who believe in openness, data accessibility and science for the people. These are a few of the people who keep me hopeful that even despite the lawyers and the bureaucrats and the sickness that exists throughout our medical system, there can be a new paradigm for how rare diseases like Niemann Pick Type C are treated and cured in the future.