I wrote the FDA and the CDC. The CDC to see why they can't track this better and feed the information to the drug and device companies. They use Nitric Oxide for Pulmonary Hypertension. Would the Pulmonologist work with a Cardiologist to use it off label?? I don't know. There are compassionate use programs but the Device and Drug company have to agree too. Is there any place in Europe that is actively doing something???? We need more advocates. It seems like Jewish National and the University of Texas are the major players in this. Does anyone go there that knows how to get us the data we need or how to get into a program if research is our only new option right now.

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