Trump's version of the Terri Schiavo case?

[Louis1895]

President Trump has now waded into the case of an infant affected by a genetic disease.

Link to tweet

Charlie Gard has a rare genetic disorder that causes him to be diagnosed as "failure to thrive". http://www.telegraph.co.uk/news/0/charlie-gard-mitochondrial-disease-suffers-legal-battle/

There is no known cure for his disease yet President Trump has reached out to help this British family. Both parents want their son to receive an experimental treatment that has no proven efficacy. The doctor offering the therapy has not been identified so it is impossible to evaluate his credentials.

Hopefully, this situation will not get as messy as the Schiavo case.

[B2G]

1. If the parents consent, and there is a chance for improvement,

why not let them try?

Yes, it's experimental. All routine treatments and medical breakthroughs start out as such.

[Louis1895]

5. I see your point but,

in the United States, experimental treatments on humans require a review by a panel known as the Institutional Review Board.

"A key goal of IRBs is to protect human subjects from physical or psychological harm, which they attempt to do by reviewing research protocols and related materials. The protocol review assesses the ethics of the research and its methods, promotes fully informed and voluntary participation by prospective subjects capable of making such choices (or, if that is not possible, informed permission given by a suitable proxy), and seeks to maximize the safety of subjects."

Hopefully, the doctor offering the experimental treatment is properly vetted for his expertise and the treatment has been reviewed by an IRB. I would hate to see the baby and parents put through unnecessary physiological and mental stress for something that is not going to work.

Unfortunately, this type of problem is very complicated at the cellular level because of the defect in the infant's mitochondria and there will likely never be a simple cure.

[B2G]

7. I can't imagine he would have offered if he wasn't.

Yes, it's complicated and a cure wouldn't be simple. Many now treatable illness used to fall into that category.

If you don't try, medical science comes to a complete standstill. No one wants that.

[obamanut2012]

8. No chance for it to work, even according to the experimental doctors

And, the child's doctors are doing the best thing for THEIR PATIENT, and refusing to allow the parents to torture the child. Which i what this would be.

Parents do not own their children.

[B2G]

10. Neither does the state.

30 years ago, experimental AIDS treatments had no chance of working either.

[Archae]

18. Beause most of them failed.

Contrary to that movie, those "experimental AIDS treatments" did not save lives.

[B2G]

19. My point exactly.

But eventually they did, due to experimentation.

[Archae]

20. Yes. Proper and controlled experiments.

Did you know that laetrile is still for sale?

Oh yeah! Decades after it was shown to be fake, people are still promoting laetrile as a "cure for cancer."

The worst part about this entire story of this baby, it appears that Trump wants to exploit the baby for a PR stunt, while his own "health care proposals" are going down in flames.

[EL34x4]

2. I don't understand why the parents aren't allowed to bring their child to the United States?

The money to fund travel has been raised. What is the issue? If the child is going to die anyways, why not try the experimental treatment?

I could understand if the parents were demanding the NHS fund the expenses but this isn't the case.

Edit: And this is nothing like the Schiavo case.

[obamanut2012]

9. Because the doctors are doing the best thing for THEIR PATIENT

No chance for it to work, even according to the experimental doctors

And, the child's doctors are doing the best thing for THEIR PATIENT, and refusing to allow the parents to torture the child. Which i what this would be.

Parents do not own their children.

[EL34x4]

11. You're not a parent, are you?

I can't imagine any parent would buy this argument. I certainly will not.

I would never support a health care system that treated my family in this way.

[Louis1895]

14. I am a parent and a biomedical scientist...

...I am not a physician but a cell biologist with degrees (including PhD) in biochemistry and molecular biology. I do understand the cell biology involved here and recognize that the science is not even close to a way to cure or circumvent this disease. We are much, much closer to curing cystic fibrosis and some other less complicated diseases than we are to treating infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). It must be especially traumatic to see their son start out normal and then basically fade away. Even if there were some improvements, Charlie probably already has irreversible brain damage due to the severity of his disease.

I also lost my wife to cancer nine years ago and recognize the desperation one feels when you see a loved one suffer and waste away.

However, at some point one needs to recognize the facts and come to grips with reality.

This situation is just plain sad and, for the sake of Charlie and his parents, I hope it does not get played out in the tabloids or Twitter.

[angstlessk]

12. Parents don't own their children, but doctors do?

[SweetieD]

3. So he is just using this case to try to demonstrate that the US has better health care

than the UK. He is fucking sick for using this family like this. He doesn't give a damn about this child. He denied his nephew insurance due to a family dispute even though his nephew just had had a baby with cerebral palsy.

[Orrex]

4. "Trump Discontinued Medical Coverage For His Own Disabled Nephew"

From
8 Less Known Trump Stories That’d Derail Any Other Campaign

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
When Donald Trump paraded his five children from three different wives in front of America, he was hoping we'd all see a family man underneath the shitshow facade we're used to getting from him. In fact, Trump is so concerned about the well-being of children everywhere that he's made affordable childcare a centerpiece of his campaign. There's one kid you shouldn't ask about how Trump actually feels about children, however -- his nephew with cerebral palsy. Oh wait, you can't, for legal reasons.

Let's back up. Donald Trump had a big brother who died at the young age of 43 in 1981. Freddy Trump wasn't as into real estate as his little brother or dad, and by the time he died, he had a reputation as an alcoholic, which some people think is why Donald himself is a vigorous teetotaler -- he watched his big brother destroy himself with booze. Before Freddy died, he got married and had two kids, Mary and Fred III. Those two kids grew up, got married (not to each other), started their own families, and moved on with life.

Then something weird happened. Somewhere along the way, Donald Trump's father decided to exclude his dead alcoholic son's heirs from his will. So when Fred Trump Sr. died in 1999, the millions of dollars he left behind were divided among Donald and his two living siblings -- everyone in Freddy's family was cut out of the inheritance. Specifically, Donald Trump helped his father draft a will which divided "at least $20 million, among his children and their descendants, 'other than my son Fred C. Trump Jr.'"

Now, we know what people will do for a fiver to buy a pack of smokes. Imagine what people will do for their cut of a multi-million-dollar windfall. Now imagine what those people would do if they had a newborn child who had just been diagnosed with cerebral palsy -- which is exactly what had happened to Fred III. Fred and his sister sued the family for their share of the estate, because who wouldn't? Their grandfather was a 93-year-old man who suffered from Alzheimer's, and the whole will seemed fishy. When Donald Trump found out his nephew was suing over the will, he did something amazing. He cut off his nephew's baby son's medical benefits, claiming he "was angry because they sued."
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

More at link

[smirkymonkey]

6. It's sick the way he is using this family as a big PR stunt.

He doesn't give a shit about them. He doesn't even care about his own people. He is so transparent. Is anyone really taken in by this?

[Warpy]

13. If he's going to pay for it, tell them to wait until the check clears

If he's not going to pay for it, then he will be duly ignored by everyone concerned.

Stupid, bloviating asshole.

[JenniferJuniper]

15. What "experimental treatment"? Who is this doctor?

I've found no specifics. The child seems to have zero quality of life.

It sounds like Trump is just exploiting desperate parents. Schiavo style.

[Initech]

17. Throw 22 million Americans under the bus who need insurance.

While pretending to care about a baby who isn't even an American citizen. STFU, Donnie.

[Are_grits_groceries]

21. That child is in grave condition.

I have to wonder what this may be doing in terms of quality of life.
I say let him be treated.
From what I have read, there is little chance anything will help. The treatment will be done for their peace of mind and not really for the kid. So be it.