The article makes some valid points. But allow me to criticize the critics. According to me the critics are brainwashed by the scientific community. If there is 1 thing I don't like about the scientific community it is their lack of practical efficacy. Let me explain ...
The article talks about unethical. Seriously ? Are we gonna use ethics here to criticize this ? There are so many unethical things in this world that are just widely accepted, that if I would list them, I could make a book of 1000 pages of it. Is it ethical to have fastfood chains seling crap to people that causes PD, AD, ALS and cancer ? Is it ethical to allow the selling of soft drinks causing diabetes, neurodegenerative diseases, cancer, overweight, cardiovasculair diseases, arthritis, ... ? Is it ethical to spray crops and even planes with pesticides knowing they cause neurodegenerative diseases ? Is it ethical to allow sports like boxing and American footbal knowing they cause neurodegenerative diseases ? ... I can really have a big rant of all the unethical things in this world.
But you know ... instead of focusing on a patient going to Ukraine to undergo a non-proven treatment, let's have a look at the ethical side of the alternatives proposed by science. Let's say you are an ALS patient and you only have 3 years to live. There is a pipeline of products with some that could delay the disease, some that could restore part of it and increase life quality. Majority of ALS patients will never ever get such a treatment. Science just let's them die. Why ? If I have 1 year or 6 months to live, is it ethical to just let me die and not let me try something that might help me ? Is it better to just let me die without trying anything because I might die 2 months sooner than if I don't take anything ? How ethical is it to take away someone's last hope ? Even worse, how foolish is science to not use me to experiment on me while I am alive and and speed up the quest to find a cure for this disease ? I even give you the permission to do so. The disease has taken away my life and me as a social person want to give you my body in order to find the cure faster in order for others to not experience the same dreadful faith as mine ? Did you know that people with such fatal diseases are even experimenting on themselves ????? Yes, because of science people with 0 knowledge are experimenting on themselves !!! How ethical is that ?
OK, now let's focus on the "no clinical evidence" part. What clinical evidence does science have of the things in their pipeline ? The tested everything on rats that don't even have real PD, AD or ALS !!! So every clinical trial phase I also has no clinical evidence of that it will work. There is hardly any difference between the procedure in Ukraine and a clinical trial phase I. Sooner or later, in the development of medicine, some people are going to take a dangerous risk.
Am I advocating people to go to Ukraine to do such a treatment in some unknown strange clinic ? ... NO. Of course not. What I am advocating for is a change in the bureaucracy of the FDA for people that are desperately debilitated by the disease, have almost 0 quality of life and are close of dying if nothing happens to them. I see a lot of critics to this guy of York that went to undergo the treatment. What I don't read is the part where the guy almost had no quality of life, and because of his desperation had to undertake such a risk. You know why he had to take such a risk ? Because both science and the FDA let donw on him. Science could easily have tried to test pluripotent stem cells on him, or given him GM1 ganglioside, or 50 other things in the PD pipeline. But because of the bureaucracy of the FDA he can't take it, so therefore he has to take an even bigger risk by going to such a fishy unknown clinic somewhere in Ukraine.