Britain's Top Court Won't Let Dying Baby Go to US

[Nithavela]

The British parents of a dying 10-month-old have just one more chance to win permission to bring him to the US for experimental treatment. Chris Gard and Connie Yates filed an emergency appeal with the European Court of Human Rights after Britain's Supreme Court ruled against them on Thursday, reports the BBC. Their son, Charlie Gard, has an extremely rare and fatal disease called mitochondrial depletion syndrome, and they want to bring him to the US for treatment.

Britain's Top Court Won't Let Dying Baby Go to US

 

[brinny]

God have mercy!

Praying.

 

[joinfree]

Britain's Top Court Won't Let Dying Baby Go to US

But what if this baby the future finder of cancer cure?

 

[BobRyan]

Britain's Top Court Won't Let Dying Baby Go to US

The link says --

"But British health officials won't allow it, saying the treatment won't work and might cause Charlie undue harm, and that he should be allowed to die with dignity. "

So then "die" is better than -- "won't work"????

 

[ThatRobGuy]

The keyword to acknowledge in this is "experimental".

These experimental treatment "doctors" often make big claims, but are in most (if not all) cases, basing their "treatment" on pseudo-science or untested & unproven theories. Or in some cases, like the Burzynski Clinic, practicing things that have been completely disproved, but continue to sell it as a valid cure (at rates that can be considered downright predatory). For those who are unaware, Dr. Burzynski claims to have found the cure for cancer ("Antineoplaston therapy"), and sells it to people for $300k...all while telling them to continue their conventional cancer treatment (radiotherapy, chemotherapy, etc...), and when some people get better (due to the conventional treatment, not his), he takes credit for it by claiming that "they would've died without incorporating my treatment".

The fact that their "GoFundMe" campaign had to raise over $1.2 million to cover the trip and cost of treatment leads me to believe that they might be getting involved with one of these predatory experimental doctors.

Another red flag is that everyone (including the parents) are being very tight-lipped about what this treatment is, and who this doctor is who was going to administer it.

It's a sensitive issue...these experimental doctors prey on people when they're the most emotionally vulnerable and not thinking clearly. Desperate people will certainly try desperate things that they normally wouldn't if they were thinking rationally. Parents of a dying child would certainly fit that mold (as would people with terminal illnesses like cancer).


I know this case has been of specific interest to people who want to preach about the evils of "the government being involved in healthcare", but in this case, it's not as if the British courts are denying parents the ability to bring their cancer-stricken child to UCLA Medical Center or St. Jude's Children's Hospital for treatment. They're protecting grief ridden parents from exploitation and potentially negative impacts to a child that's already suffering.


We have to step back and use a little common sense and logic here...

If a doctor really is confident that they have the cure for a specific terminal disease, why are they charging $750k to perform it rather than doing it pro bono? If they're confident it's effective, doing it for free, simply just to get the proof of efficacy on the record, would be much more advantageous than charging ridiculous amounts on a one-time basis right? Think about it, if I found the cure for cancer, what's going to be more advantageous in the long run? Trying to charge people obscene amounts of money on an ad hoc basis? Or demonstrating my treatment undeniably works in a peer reviewed environment? If it does indeed work, not only would I stand to make a lot more $$$, but it would also bring the treatment into the mainstream and it would become recognized by insurance companies, therefore, guaranteeing coverage for future individuals who may have the disease.

 

[ThatRobGuy]

So then "die" is better than -- "won't work"????

Given that the proposed treatment is going to cost over $1 million, and "die" is the outcome in both scenarios...yes, it's better.

"death" > "death, plus ripping off grieving parents"

 

[trunks2k]

So then "die" is better than -- "won't work"????

If "not working" means more suffering than if he was just kept at home with palliative care, yes.

I don't know enough about this disease or the "experimental" (is this like a real drug trial or just some quack?) treatment to have an opinion, but I can see the potential problems with allowing the child to go. It could easily cause more pain and suffering for the child, not to mention potential financial ruin for the family.

There's certainly ethical concerns either way.

 

[Tanj]

But what if this baby the future finder of cancer cure?

The baby has irreversible brain damage, is blind and deaf. I don't think he's the future finder of any cure.

 

[dgiharris]

The keyword to acknowledge in this is "experimental".....
If a doctor really is confident that they have the cure for a specific terminal disease, why are they charging $750k to perform it rather than doing it pro bono? If they're confident it's effective, doing it for free, simply just to get the proof of efficacy on the record, would be much more advantageous than charging ridiculous amounts on a one-time basis right? Think about it, if I found the cure for cancer, what's going to be more advantageous in the long run? Trying to charge people obscene amounts of money on an ad hoc basis? Or demonstrating my treatment undeniably works in a peer reviewed environment? If it does indeed work, not only would I stand to make a lot more $$$, but it would also bring the treatment into the mainstream and it would become recognized by insurance companies, therefore, guaranteeing coverage for future individuals who may have the disease.

solid post and points.

However, I take a slightly different viewpoint. I have no problem with a dying person advancing science and medicine. I would prefer that over a pointless death. So, if this experimental treatment was done by any reputable organization like UCLA medicine, Stanford medicine, St. Judes, etc then sure, by all means allow it especially since they would [not] charge for it.

but yeah, some crackpot offering an "experimental" cure for the bargain basement price of $750k...

yeah, that is a pass. And shame on him. Seriously, there is nothing lower than a person who would line his pockets with dead babies and grieving parents...

 

[ThatRobGuy]

solid post and points.

Thanks

However, I take a slightly different viewpoint. I have no problem with a dying person advancing science and medicine. I would prefer that over a pointless death. So, if this experimental treatment was done by any reputable organization like UCLA medicine, Stanford medicine, St. Judes, etc then sure, by all means allow it especially since they would charge for it.

Did you perhaps mean to put "wouldn't" instead of would?...I suspect that's the case since I think places like St. Jude do their experimental or "trial phase" procedures free of charge.

To clarify my position, I'm not opposed to experimental medicine in regards to legitimate medical institutions experimenting with new concepts and performing clinical trials in a controlled and peer reviewed environment, in that regard, all medicine is "experimental" before it's mainstream. Sorry if I didn't express my viewpoint clearly on that.

I was mainly referring to "experimental" in the context of "alternative medicine" and pseudo-science. For example, Magnet Therapy, "Reflexology", and Holistic & Homeopathic, etc... things of that nature. IE: things that have already been disproved through the scientific method, but quack doctors continue to do on the premise that "it's a medical conspiracy and they just don't want you to know about this".

I did finally find some articles discussing what this process was that these parents wanted to try for their child (yet, still no info on the doctor who was going to perform it).

It's a process called "Nucleoside Bypass Therapy".

It's an experimental procedure that has only ever been tried on 16 people, and none of them have had the same condition as Charlie. The only "evidence" for efficacy of this is an anecdotal claim from an American couple who is claiming it "saved the life of our child" and "our child would've died without it". However, in their case, their child had a different (although similar) condition, and in the case of their child's condition, they still employed the conventional treatment with a regular pulmonologist simultaneously with the experimental treatment. And, in the case of their child's variation of the disease, the median survival age is 20 years old with conventional pulmonology treatment, without it, 6 years. Their child is still only 4 or 5. (and judging by the pictures, the family is very affluent and could likely afford to pay out of pocket for this highly expensive experimental procedure). So basically, the experimental procedure has demonstrated absolutely no benefit. Their child still underwent the traditional treatment for the disease, and the child is still well within the normal survival spectrum (even for people who opt for no treatment at all). IE: no deviation from "the norm" has taken place.

So given that, this sort of reeks of a "Burzynski Clinic" type of thing...

Like I touched on before, that's the issue with these predatory experimental doctors. They encourage patients to still pursue conventional proven treatments while doing the experimental therapy, and when the patient survives (as many do on conventional proven treatments), they claim the success as their own.

It'd be sort of like if I made up some experimental treatment for Strep Throat involving injecting people with a combination of banana oil and magnesium...but still advised them "hey, while I'm treating you... still work with your regular physician and go through the 10-day course of antibiotics", and when the people, undoubtedly, recover from strep I say "hey, look at how many people have been cured during the time period they were undergoing my treatment" (notice the creative wording so I'm technically not lying)...I can cure you too...for the price of $10,000.

 

[brinny]

The keyword to acknowledge in this is "experimental".

These experimental treatment "doctors" often make big claims, but are in most (if not all) cases, basing their "treatment" on pseudo-science or untested & unproven theories. Or in some cases, like the Burzynski Clinic, practicing things that have been completely disproved, but continue to sell it as a valid cure (at rates that can be considered downright predatory). For those who are unaware, Dr. Burzynski claims to have found the cure for cancer ("Antineoplaston therapy"), and sells it to people for $300k...all while telling them to continue their conventional cancer treatment (radiotherapy, chemotherapy, etc...), and when some people get better (due to the conventional treatment, not his), he takes credit for it by claiming that "they would've died without incorporating my treatment".

The fact that their "GoFundMe" campaign had to raise over $1.2 million to cover the trip and cost of treatment leads me to believe that they might be getting involved with one of these predatory experimental doctors.

Another red flag is that everyone (including the parents) are being very tight-lipped about what this treatment is, and who this doctor is who was going to administer it.

It's a sensitive issue...these experimental doctors prey on people when they're the most emotionally vulnerable and not thinking clearly. Desperate people will certainly try desperate things that they normally wouldn't if they were thinking rationally. Parents of a dying child would certainly fit that mold (as would people with terminal illnesses like cancer).


I know this case has been of specific interest to people who want to preach about the evils of "the government being involved in healthcare", but in this case, it's not as if the British courts are denying parents the ability to bring their cancer-stricken child to UCLA Medical Center or St. Jude's Children's Hospital for treatment. They're protecting grief ridden parents from exploitation and potentially negative impacts to a child that's already suffering.


We have to step back and use a little common sense and logic here...

If a doctor really is confident that they have the cure for a specific terminal disease, why are they charging $750k to perform it rather than doing it pro bono? If they're confident it's effective, doing it for free, simply just to get the proof of efficacy on the record, would be much more advantageous than charging ridiculous amounts on a one-time basis right? Think about it, if I found the cure for cancer, what's going to be more advantageous in the long run? Trying to charge people obscene amounts of money on an ad hoc basis? Or demonstrating my treatment undeniably works in a peer reviewed environment? If it does indeed work, not only would I stand to make a lot more $$$, but it would also bring the treatment into the mainstream and it would become recognized by insurance companies, therefore, guaranteeing coverage for future individuals who may have the disease.

If i'm that li'l child, i'd want to "go for it". This is LIFE we're speaking of. ANYTHING that gives a glimmer of hope and the possibility of furthering life is of COURSE what must be explored. These parents are fighting for the right for their li'l child to LIVE.

Welcome to the health care system in the UK. There really ARE "death panels" in this atrocity, aren't there? THEY decide if a life is worth striving to save, don't they?

(The Youtube Red movie "The Thinning" comes to mind.)

God help us.

Praying.

 

[DaisyDay]

Fundamentally the parents don't accept the facts," she said. "They don't accept that nucleoside therapy will be futile."

The court had earlier heard how Charlie could not could see, hear, move, cry or swallow.

Ms Gollop added: "He is on a machine which causes his lungs to move up and down because his lungs cannot go up and down.

Charlie Gard: Parents' appeal for US treatment bid fails - BBC News

There comes a time when further medical treatment and artificial prolongation of life becomes torture.

 

[ThatRobGuy]

This is LIFE we're speaking of.

Yes, which is why we try prevent charlatans from exploiting mentally fragile people when faced with the prospect of death.

ANYTHING that gives a glimmer of hope and the possibility of furthering life is of COURSE what must be explored.

No, that's not true...especially when it's an experimental procedure that's never been proven to be a successful treatment for the disease in question (or any other disease), and the "doctor" is putting a price tag on it that's clearly predatory.

By that logic, I could start my own cancer clinic that claims to cure the disease by having people eat mac & cheese mixed with goat urine and charge people $100k a pop. Because a few select people might be given a "glimmer of hope" (quite frankly, because people are scared of death and dying and will try anything), "we must explore it", right???

Welcome to the health care system in the UK. There really ARE "death panels" in this atrocity, aren't there? THEY decide if a life is worth striving to save, don't they?

No, it's not death panel, please go back and read my two previous posts that elaborate, in detail, on this particular case.

Now, if this child had a pediatric brain tumor, and the parents raised money and wanted to bring them to St. Jude's children's hospital (that has a high success rate with treating the disease) and the UK courts told them "No, you're not allowed" then your argument would hold water and I would agree with you 100%.

But that's not the case here, and we shouldn't pretend that's the case.

People need to actually look at the facts in this case and not immediately try to twist everything into an argument to support their political agenda.

 

[brinny]

Yes, which is why we try prevent charlatans from exploiting mentally fragile people when faced with the prospect of death.

No, that's not true...especially when it's an experimental procedure that's never been proven to be a successful treatment for the disease in question (or any other disease), and the "doctor" is putting a price tag on it that's clearly predatory.

By that logic, I could start my own cancer clinic that claims to cure the disease by having people eat mac & cheese mixed with goat urine and charge people $100k a pop. Because a few select people might be given a "glimmer of hope" (quite frankly, because people are scared of death and dying and will try anything), "we must explore it", right???



No, it's not death panel, please go back and read my two previous posts that elaborate, in detail, on this particular case.

Now, if this child had a pediatric brain tumor, and the parents raised money and wanted to bring them to St. Jude's children's hospital (that has a high success rate with treating the disease) and the UK courts told them "No, you're not allowed" then your argument would hold water and I would agree with you 100%.

But that's not the case here, and we shouldn't pretend that's the case.

People need to actually look at the facts in this case and not immediately try to twist everything into an argument to support their political agenda.

Your opinion is noted.

 

[ThatRobGuy]

Your opinion is noted.

It's not an opinion...the reality that this procedure is experimental and has never demonstrated any benefit is a fact.

Tying the word "opinion" to the facts that I provided in my previous post doesn't give your side any more merit...sorry, nice try.

 

[HannahT]

I feel for these parents, and can certainly understand their desperation.

 

[ThatRobGuy]

I feel for these parents, and can certainly understand their desperation.

I would agree...even if it's an adult suffering with something serious, one can still understand the desperation and "I'll try anything" mentality.

I witnessed it happen in my own family. When my dad was diagnosed with stage 3 cancer, obviously there was a sense of desperation. To preface, he did survive, but it wasn't looking so promising at one point.

He went to his first oncologist who gave him a 30% 5-year survival prognosis with chemo & radiation alone, but told him if he made a swift decision to take a surgical approach, that could be much better (which is obviously not comforting to hear)...unsatisfied with that, the irrational, desperate, and unclear thinking kicked in. I constantly tried to convince him "just go to the actual surgical cancer specialist and see what he has to say", nothing could talk him out of trying these experimental therapies.

Long story short, he started making trips to Michigan to pursue "alternative" and "experimental" therapies. (Homeopathic "doctors", "blood irradiation", every overpriced herbal supplement money can buy, etc...) After 3 months, 2 maxed out credit cards, and remortgaging their house, they finally went back to a real doctor after symptoms had worsened and found where it had spread to two additional lymph nodes... at that point my mom was finally able to convince him to go to the real doctor (the surgical cancer specialist and go for the surgery + radiotherapy combo). Which he did, which left him with some serious scarring, thanks to not seeking real treatment fast enough and letting it spread further, thus requiring them to have to cut more out of him.

That's why it's important to have a third party (who is thinking clearly) to keep those quack doctors in check, had my mom not completely convinced him to switch back to a real doctor, that quack in Michigan was already prepared to keep taking money from them saying "we just need to up the treatment intervals".

That was a mistake that cost them $60,000 in credit card debt + they get to make another 5 years worth of house payments on a house they had already paid off.

I only wish the US would adopt some of the laws that would help keep those predators in check and not allow them to exploit sick people who aren't thinking clearly.


And to be clear, I didn't adopt my anti-altmedicine stance because of what they did to my dad, it's been a long held position for me and I tried to talk him out of it using logic and reason from day one.

 

[brinny]

It's not an opinion...the reality that this procedure is experimental and has never demonstrated any benefit is a fact.

Tying the word "opinion" to the facts that I provided in my previous post doesn't give your side any more merit...sorry, nice try.

It is an opinion.

The parents of this li'l one have the right to do whatever is necessary to fight for the life of their child.

For any system or powers that be to supersede their right to do so is downright evil.

God help us, in the name of Jesus help us.

Praying.

 

[ThatRobGuy]

The parents of this li'l one have the right to do whatever is necessary to fight for the life of their child.

Okay, so where do you draw the line for that? Specifically, in terms of risk to the child and defining what's "necessary"?

Obviously, I'm sure you wouldn't condone a parent taking a sick child to someone who's going to strap them to a table and perform electroshock therapy to them while they're kicking and screaming right? I think in that situation, we'd all agree that the courts would have an obligation to step in and say "whoa, that's not medically supported and it's borderline abuse, you can't do that!" -- whether the parents felt like "it was the right thing to do to fight for their child" would be irrelevant at that point.

Toddler died of meningitis 'after his parents tried to treat him with fruit'

Stories like this are why there are (and should be) safeguards.


...not to mention, you still haven't explained why this procedure in question is "necessary" to fight for the life of their child? You keep saying "do what's necessary" as if this procedure in question is a slam dunk.

Like I touched on before, only 16 people have ever received it, and it has never demonstrated any measure of efficacy. How can a $750k procedure with a 0% success rate be considered "necessary"?

Are you actually considering any of the details in this story?...or are you just trying to run everything through a "government can do no right" filter?

For any system or powers that be to supersede their right to do so is downright evil.

Your speaking like a child is "property" and not a person. A parent doesn't have right to abuse their child or subject them to significant risk or trauma with no prospects of any positive outcome.

You're desperately clinging to this narrative of "these people found a potential cure for their child's condition, and that evil godless left-wing government won't let them have it" when, as I've explained in exhausting detail in two previous posts, isn't the case here.

You even referred to the UK healthcare system as a "death panel", which was particularly ironic considering that our rates of mortality for preventable diseases is significantly higher than theirs.

 

[brinny]

Okay, so where do you draw the line for that? Specifically, in terms of risk to the child and defining what's "necessary"?

Obviously, I'm sure you wouldn't condone a parent taking a sick child to someone who's going to strap them to a table and perform electroshock therapy to them while they're kicking and screaming right? I think in that situation, we'd all agree that the courts would have an obligation to step in and say "whoa, that's not medically supported and it's borderline abuse, you can't do that!" -- whether the parents felt like "it was the right thing to do to fight for their child" would be irrelevant at that point.

Toddler died of meningitis 'after his parents tried to treat him with fruit'

Stories like this are why there are (and should be) safeguards.


...not to mention, you still haven't explained why this procedure in question is "necessary" to fight for the life of their child? You keep saying "do what's necessary" as if this procedure in question is a slam dunk.

Like I touched on before, only 16 people have ever received it, and it has never demonstrated any measure of efficacy. How can a $750k procedure with a 0% success rate be considered "necessary"?

Are you actually considering any of the details in this story?...or are you just trying to run everything through a "government can do no right" filter?



Your speaking like a child is "property" and not a person. A parent doesn't have right to abuse their child or subject them to significant risk or trauma with no prospects of any positive outcome.

You're desperately clinging to this narrative of "these people found a potential cure for their child's condition, and that evil godless left-wing government won't let them have it" when, as I've explained in exhausting detail in two previous posts, isn't the case here.

You even referred to the UK healthcare system as a "death panel", which was particularly ironic considering that our rates of mortality for preventable diseases is significantly higher than theirs.

Let's not go there with UK healthcare. (I can come back to it if you wish....you must admit there are some issues, however.)

Your opinion is noted regarding this child and who has the authority to decide if this child lives or dies.

"The Thinning" comes to mind.

Thank you kindly.