There was a scary editorial today in the New York Times. It was about how some of the decisions made by doctors and others at the FDA are greatly influenced by drug companies. This does not bode well for those of us who need reliable medical experts to be sure the drugs we take are safe and appropriate. The editorial notes that "Congress allowed the agency to collect fees from the industry it oversees to pay for the high cost of drug approvals. These fees pay much of the salaries of FDA drug workers responsible for the approval of new drugs." Thus the FDA may be more of a partner rather than making responsible decisions about drugs. This is a scary thought. The other thing that is noted is that too many FDA personnel later go to work for drug companies. Americans pay more for drugs than people in other countries. In other countries, prices are negotiated between governments and drug companies. This should happen in America, particularly for Medicare patients.
The CEOs of drug companies, such as Roche, make enormous salaries. You would think they would respond to doctors like me who request special help for a drug that can change the life for a spinal atrophy child. However, despite my request for one family with two spinal children, the CEO showed no interest in having this happen. When I asked by e-mail if the CEO had ever seen a child with spinal muscular atrophy, I got no reply. Some drug companies do set up special funds to help families that can not afford an expensive drug for a child with a disability. Roche does not seem to be one of those.
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