Whether a drug actually works is immune to politics and bureaucracy because it's a scientific and statistical issue (which assumes professional trial design and execution).
Whether a drug is approved certainly considers politics. See the travesty surrounding commissioner Margaret Hamburg and Eteplirsen for the treatment of Duchenne's muscular dystrophy. It's gut-wrenching. So you're right in a sense, just a little harsh imho.
But I think you may be misunderstanding how drug development works and why it drags out so long (i.e. when you said "get her some stem cells"). It's because it's really tough to make something that works. The FDA is responsible for approving trial design, considering input from advisory committees and give final marketing approval to drugs. They do not do the R&D, design trials or conduct any phases of the trial, that's up to the individual biotech and pharmaceutical companies to perform and pay for. It takes a lot of time and money for both sides to come to an agreement that something is safe and effective enough to be injected into a human being.
So the "pioneering medical research" you're referring to is basically 1) consult a specialist to see what drugs/therapies have been accepted as beneficial, 2) there may be some drugs in phase 2 or 3 that have been given accelerated approval or compassionate use status by the FDA or 3) see what's available on clinicaltrials.gov and hope there's one she qualifies for. Very broad but this is the general idea of how it works; going outside of these paths is a recipe for disappointment.
Lastly, your point about finding support groups is really good, it's a way to short-circuit the process and see what others have done.
