From Personal Tragedy to a Far Better World 

Just recently I became aware of Sandra and Brian's story and found myself obsessed with it and I realized that was part of the answer with anything, really, that someone needs to start the obsession. When the fire of real empathy is ignited, so are our inner passions. We do extraordinary things when first we feel empathy for someone else. Empathy is the beginning of power, it grows, you share it with others. It keeps you up at night because you wish you could fix it, you wish you could help. For me, a person who is healthy and has no diseases to contend with, this sheds a light on the FDA. If all the diseases were on a chart, and the chart was about helping and positive action, not control, not restraint, not a power a trip. Would the FDA be at the top of that chart. Would all diseases be at its mercy? Which then begs the question, is the FDA political, do lobbyists control the FDA in the same way they try to control Congress? Is the FDA an instrument of the people or of political and financial leanings and persuasions? Perhaps it is time to understand just how the FDA works because it seems to me, these people, and the 5000 other ALS people in America are at the mercy of the FDA. I don't know how any of this works so forgive me if this is an ignorant question. I ask it as an outsider who is trying to look logically. Over and over I hear people talking about something that is held up because of the FDA. I do see value in what the FDA is supposed to do, regulation is important, when we deregulate we spiral down into complacency and shoddy harmful products, but I question it when they appear to be on a power trip that hurts rather than heals. To me, all 5000 people who are living with ALS today, should be part of the trial with these new drugs, if they want to be. Because they most likely will die anyway. Not to be negative, it just sounds like it is a death sentence and common empathy should say, 'well at the very least, give them this chance'. I have to wonder, if something that could help Brian is kept from him by the FDA then what is their real goal? Who are they serving? Is it time to look at how the FDA works?