The book begins with a description of Ted Harada, a young father diagnosed with Lou Gehrig’s Disease (ALS). ALS is a death sentence; it has a 100% death rate, and the only question is whether death will come in five years or two. But Harada had an experimental stem cell surgery at Emory University that reversed his symptoms completely – until the FDA stepped in to stop him from having further surgeries. Harada’s surgery is also unavailable to the approximately 24,000 people who have died since Emory’s clinical trial began.In some circles, there is a belief that Big Pharma is trying to kill us, or at least profit from our misery, hoping we stay sick. That's paranoid. In this case, the FDA is actively blocking experimental procedures for people who are terminal. What's the worst that can happen? They die? Idaho's legislature is considering following 24 other states:
BOISE, Idaho (AP) - An Idaho House panel has introduced a bill that would allow terminally-ill patients to access drugs that are still being researched.Count on the FDA to stand in the way. Not surprisingly progressives are siding with FDA and against hope for the terminaaly ill. California's Gov. Brown vetoed such a bill, and the Boston Globe editorializes in favor of protecting the terminally ill from lifesaving treatments.
Democratic Rep. Melissa Wintrow of Boise says the legislation permits patients to use pharmaceuticals that have already passed safety tests by the Federal Drug Administration....
Wintrow argues that the measure would dramatically alleviate the wait time and paperwork for patients suffering from diseases like Lou Gehrig’s Disease. Patients would assume all liability and responsibility for using the drug, but they would be required to be under the care and supervision of a doctor.
The laws threaten to unravel decades of patient protections, since the FDA is precluded from providing its traditional oversight. And in some states, the laws could even make it more difficult to obtain experimental drugs because of requirements not found in the existing federal program. In some states, for instance, more than one physician diagnosis is needed for drug access. Certain state laws also demand that written consent forms carry added stipulations that may need legal reviews. Insurers, meanwhile, are not required to pay for treatment, yet most of the states failed to create funding to help patients cover medical expenses. Plus, there are unanswered legal questions about whether state laws trump federal regulations.
HB 481 is supposed to have a hearing Feb. 23 before House Health & Welfare committee.