as jen mcnary said to me once, by the time the fda finally approved this particular treatment, we will have lost an entire generation of boys to this disease. that is unacceptable. we move this to the states because we knew we could get the action that patients need. >> the fda is responsible for overseeing whether drugs are safe and effective. i reached out to them about this issue, they point to the fact that they have trials available for which people can enroll to try these different treatments. they also have something called compassionate use in which you can apply for access, if you are terminally ill and outside of these clinical trials. can you give me more detail about this and explain why passionate use is not enough to ensure that people can get access to life-saving treatment westmark. >> that's right, the fda fda does have a few programs, clinical treatment programs and it is supposed to help patients in situations like this. the fact is, less than 1% of patients with terminal illness will ever get access to these treatments through the compassionate use program. the prog