And just generally musing:
And then a bit for Jimbo,
I remember a couple of cases in the States. Karen Ann Quinlan (I believe that's the name.) Beautiful young woman who took a misstep with drugs and alcohol and was in a "vegetative state". There was a massive court case, when her parents wanted to let her go. The state overruled them, and she was kept alive. She lived for 9 years, and there's no knowing if she had any real awareness or not, although I'd assume (and hope) not. Terry Schiavo's case, where they had scans showing her brain was, basically, liquid, was particularly hard to watch. There was a battle royale between her relatives as to keeping her alive or letting her go. In that case I can see the need for a court being involved - there were competing wishes within her very close family. Her husband said she would want to be allowed to leave, and her parents fought tooth-and-nail to keep her alive. She left no living will. Someone needed to make a decision. The courts did. (They discontinued life support.) It's a shame it went on so long.
The Proton Beam Boy case. I only heard about it as reported on the national US TV news (I rarely get my news off the internet
) The parents disagreed with the proposed follow-up treatment and nicked off with the boy. Arrest warrants were put out for the parents & subsequently rescinded (with supposedly formal apologies after stories had been circulated claiming that the parents had seriously damaged the child's chance of a cure by choosing the proton-beam therapy over that recommended by the NHS). The boy is apparently cancer-free. I otherwise am not tremendously familiar with the case. I've had to resort to wikipedia (which is a somewhat dodgy resource at best)
https://en.wikipedia.org/wiki/Ashya_King_case Charlie Gard.
Such a sad case. I am entirely too familiar with mitochondrial disease. It can be just a devastating diagnosis. It is my understanding that a hospital in the States had been given preliminary info on Charlie's condition and agreed to explore experimental treatment based on that preliminary assessment. When funds had been raised, a re-assessment of Charlie's condition showed he was then too far gone for that treatment to be useful. At that point his parents were thrown into the court battle scenario that seems to have been similar to the current case. They wanted him kept alive, the hospital recommended to the judge that he be allowed to die. (I'd have hated to have been that judge. I assume it was one judge only, and not a panel.)
Then the Pope tweeted, and Trump tweeted (of course he did). I've just looked the case up to refresh my memory, and tend (maybe naively) to trust the BBC's reporting on these types of cases, so here it is for a refresher.
http://www.bbc.co.uk/news/health-40554462 I was curious about your "dodgy researcher", so I looked the guy up. He's no slacker. From the Columbia University faculty website: " Dr. Hirano serves as Chief of the Neuromuscular Division, Co-Director of the CUMC Muscular Dystrophy Association clinic, and Director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases. He evaluated patients with myopathies and other neuromuscular disorders. Dr. Hirano's research focuses on mitochondrial diseases and genetic myopathies. He is participating in the clinical trial of idebenone for MELAS patients. Together with Co-Principal Investigators, Drs. Salvatore DiMauro and J.L.P (Seamus) Thompson, Dr. Hirano is co-directing the North American Mitochondrial Disease Consortium (NAMDC). Dr. Hirano serves on the NIH Therapeutic Approaches to Genetic Diseases (TAG) study section, Medical Advisory Committee (MAC) of the Muscular Dystrophy Association, and Scientific Advisory Board of the United Mitochondrial Disease Foundation." He's also an Elected member of the American Neurological Association and Elected Fellow of the American Academy of Neurology.
http://www.cumc.columbia.edu/mdphd/profile/mhiranoSo, without seeing his CV, I can pretty much assume that this guy is "big guns", although I've seen bigger. I see in some of the press that it took months for him to actually fly to the UK to examine Charlie. Had I not had years of experience working (on the admin side) with medical research professors, I'd think that maybe the guy was a shyster for not being intimately familiar with Charlie's records from the start.
There's two thoughts I have there. One is that mito specialists do not grow on trees, and this man probably has a staggering caseload of patients. In SoCalif, for instance, there were two heavy-duty mitochondrial specialists as of a couple of years ago. For all of SoCal. (The population of SoCal is closing on 23 million souls. Even with mito diseases being rare, that's obscenely short-staffed.) The second is that, unfortunately, I have seen absolutely stellar researchers, damn near saints, hamstrung by the clinical trials regulations, internal institutional research review boards, university/hospital governance boards, and the liability office people.
So, without knowing precisely what that researcher said in his communications with Charlie's family, I can't support branding him as a "money-grubber". Especially in an internationally high-profile case such as little Charlie's. And it was acknowledged very clearly by the research team as being an
excruciatingly experimental treatment -
that hadn't even been tested on mice. (This has to qualify for the "hail Mary" pass of all time.)
It would be a mountain of paperwork and red tape to have that allowed to happen in a research/teaching hospital in the USA. When one is talking in very tentative terms about a treatment protocol that would be well outside the FDA's normal approval stream, and having to deal with the review boards, I don't see how there possibly could have been time. (For reference, again, Wikipedia, my apologies)
https://en.wikipedia.org wiki/Human_subject_research_legislation_in_the_United_States More succinctly, it's not like they could have just picked little Charlie up and taken him to the States and Columbia Medical Center could begin such an unproven/unapproved treatment without literally months of prep time and a special dispensation from the feds. And that's all not free.
It's also not unusual for researchers to have a financial interest in the results of their research. Not all universities insist that any money made on a discovery/patent goes to the coffers of the university - it depends on the employment contract between the two parties, and the organization funding the research. Unis get funding to do their research from the government, pharmaceutical companies, corporations, and other sources. That's how the system works. Research brings in a
LOT of money to a serious research institution. That equipment and the specialist researchers are extraordinarily expensive, so they need it. A smart researcher who has enough professional standing can make a tidy sum if they make a discovery and have a contractual interest in it. I note that Prof. Hirano divested himself of any financial interest in the proposed treatment. That
doesn't scream that he was in Charlie's case for the money.
And this bit, in closing this too-long post: Back to the current poor boy. I don't consider a parent doing mouth-to-mouth on a child in breathing difficulty to be "amateur doctoring" at all. No more than doing the Heimlich maneuver on someone choking. But then, I don't think one necessarily has to have an advanced degree to know how to manage the basics.
Maybe we should just move on to things that are not so very sad, and about which we can do absolutely nothing?
