"We have potential treatments that make sense with very few side effects, and yet we're not allowed to use them," he said. "People in the rare disease community want to be protected, but they don't want to be protected to death."
There is a department of the National Institute of Health that investigates undiagnosed diseases. Ones that all other doctors have given up on. It is all free if you can get in. They turn away most patients. They do not have the facility, personnel or the time to look at all cases. Some they can help with a treatment. Some they can just give a name to the condition but there is no treatment and some there is no name to the disease but a possible treatment is recommended.
Remember though, this is a government institution, you cannot just run around trying to cure people with all kinds of advice from hundreds of top doctors around the world. The treatment may kill them before the disease does. How would that look on a status report. Mostly, the disease kill them before they can even start a treatment because the treatment has to be approved by the under managed Food and Drug Administration. First it has to be classified as a disease and then drug trials have to be done to see if the drugs work. In a few years and after a thousand rat trials and millions of dollars to a drug company, the drug is ready but never used. The patient died two years ago. Oh well, we will keep it around for the next study.
I hate reading these stories and I hate reporting them. I hate a lot of things now. Scientists can be corrupt, governments, well, of course. They say that Dr. L. Pasteur fudged his science to get a big fat grant that eventually saved billions of people. The sheep inoculation study has never been duplicated the way Pasteur's notes said to do it. Scientific thought is incorruptible. I do not hate that.
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