Amir, thanks for sharing. Quite fascinating. The issue of clinical trials for drugs that already are generic and therefore cheap and have little future profit potential, is a big one. NIH does fund trials for those and so-called orphan drugs (ones that have a very limited market and therefore also little profit potential). But the process of approval, etc. through the government is tedious at best, and daunting to the patients who are interested in saving their own lives in a timely way.
Here is where capitalism, good in so many ways to spur innovation, fails.
One other interesting issue about patients taking control. We went to a talk yesterday by Daniel Levitin, author of the NYT best seller 'The Organized Mind' and a professor of Psychology and Neuroscience at McGill. He said that patients could ask the doctor a couple of questions that could give them more information about a treatment or procedure that the doctor is proposing for them. The first is "What is the NNT? NNT=Number needed to treat." That is statistically how many people need to take this drug or do this procedure before one patient is helped (prevented from getting the disease?) For many common treatments it is a surprisingly large number. The second is "What is the frequency of serious side effects?" Say the NNT is 300 (not an uncommon number) and the frequency of serious side effects is 3%, or 1 in 30, then it looks like the serious side effects take place 10 times more frequently than the benefit.
If you already have a serious illness or other problem, (like my ruptured hernia last year), then the NNT is very close to 1 (for the surgery I had) and the side effects from the operation (like dying from the anesthesia) might be 1 in 100 (I didn't ask).
But if you are 65 and older and otherwise healthy, and your doctor says to start taking Lipitor (atorvastatin), the NNT number versus the side effect number would give you more information about starting taking it.