Family battling Children’s Hospital to bring teen home for Christmas

[jjenny]

Really? Depending on the condition, I'd be all over signing my kid up for clinical trials. Sometimes it can be the only hope.

If no one ever signs up for trials, how do new treatments ever get approved?

Maybe these "most parents" are also the type who don't believe in blood transfusions, transplants, or vaccines.

Justina's parents clearly do not want her to be a research subject.

 

[MyBelle]

She is in custody of DCF. Therefore her parents insurance will not be billed for the enormous amounts of money DCF has spend to keep her in a secure psychiatric ward.

Insurance can't be billed if it doesn't exist.

 

[jjenny]

it is about as far fetched as you can get.

there is zero evidence to support what you are claiming.

your claim is extraordinary.

and you still fundamentally do not understand the BCH, and federal, policy language regarding research and wards of the state.

so basically your theory and position is just about the definition of far fetched.

It's a very simple policy. It's written in black and white, so I am pretty sure I am capable of understanding it.

 

[MyBelle]

Justina's parents clearly do not want her to be a research subject.

I think the parents have made it abundantly clear they don't want her at all.

JMO

 

[jjenny]

Hey, credit where it's due, we owe a lot of thanks to republican Mitt for that law.

Of course, that's when Mitt was a semi reasonable, liberalish Massachusetts republican (the only kind tha can ever get elected here lol) - before he made his sharp turn towards the loony right just in time for the presidential campaign. :crazy:

Thanks Mitt! We love our healthcare! :loveyou: we will even share it with abused children from CT!

How about you share it with abused children from your own state?

 

[forthelost]

By the way is it not possible that DCF isn't being entirely truthful here?

Of course. If the parents are right DCF is wrong. I've said that several times.

 

[forthelost]

It's a very simple policy. It's written in black and white, so I am pretty sure I am capable of understanding it.

Saying that children in DCF care can be enrolled in clinical trials is not remotely close to the idea DCF wants her as a guinea pig.

 

[jjenny]

Since BCH has a mitochondrial program, did any of their experts look at Justina? It was posted that Justina did not have a muscle biopsy while under the custody of her parents, but did she have one while under the custody of the state?

http://www.childrenshospital.org/centers-and-services/mitochondrial-program/overview

From what her parents have said, no.
No experts in mitochondrial disease have looked at Justina.
Even her own specialist (Dr. Flores) wasn't allowed to see her.
That of course is based on what parents said.

 

[jjenny]

Saying that children in DCF care can be enrolled in clinical trials is not remotely close to the idea DCF wants her as a guinea pig.

Their policy is on the internet. You can read it for yourself.
It doesn't specifically mention clinical trials.

 

[Linda7NJ]

She is in custody of DCF. Therefore her parents insurance will not be billed for the enormous amounts of money DCF has spend to keep her in a secure psychiatric ward.

You're wrong.
I've provided links up thread.


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[MyBelle]

Their policy is on the internet. You can read it for yourself.
It doesn't specifically mention clinical trials.

It doesn't mention it because it is common knowledge that clinical trials are a form of clinical research done in a hospital setting. I know Lou won't believe it but no child at BCH is sharing a cage with a lab rat.

JMO

 

[jjenny]

It doesn't mention it because it is common knowledge that clinical trials are a form of clinical research done in a hospital setting. I know Lou won't believe it but no child at BCH is sharing a cage with a lab rat.

JMO

Research conducted on human subjects could include clinical trials. That doesn't mean that clinical trials is the only form of research possible on human subjects.

"Clinical Research

defined in the PHS 398 Definitions and the Grants Policy Statement Glossary –

Patient-oriented research. Research conducted with human subjects (or on material of human origin such as tissues, specimens and cognitive phenomena) for which an investigator (or colleague) directly interacts with human subjects. Excluded from this definition are in vitro studies that utilize human tissues that cannot be linked to a living individual. Patient-oriented research includes:

a. Mechanisms of human disease,
b. Therapeutic interventions,
c. Clinical trials, or
d. Development of new technologies.
Epidemiologic and behavioral studies
Outcomes research and health services research"

https://grants.nih.gov/grants/policy/hs/glossary.htm

 

[forthelost]

This bit?

Children who are Wards of the state may be included in research that presents greater
than minimal risk with no prospect of direct benefit (46.
406 (50.53) or 46.407 ( 50.54)
only if the IRB determines and documents that such research is
Related to their status as wards; or
Conducted in schools, camps, hospital, institutions, or similar settings in which the
majority of children involved as participants are not wards.
If wards are to be included in research with no prospect of direct benefit, the IRB
shall appoint an advocate for each child who is a ward.
The advocate will serve in addition to any other individual acting on behalf
of the child as guardian or in loco parentis;
One individual may serve as advocate for more than one child;
The advocate must be an individual who has the background and experience to act in, and agrees to act in, the best interest of the child for the duration of the child’s participation in the research;
The advocate must not be associated
in any way (except in the role as
advocate or member of the IRB) with the research, the investigator(s), or
the guardian organization
If children who are Wards are to be included
in any research study, the investigator must provide the IRB with detailed information about the proposed permission/assent process, as well as the identity and authority of the individuals who will provide permission for the Ward subjects
The Commonwealth of Massachusetts requires that they review and approve all requests for individual Department of Children and Families clients to participate in research. This includes children who are in DSS care or custody. This review is conducted by the Department of Children
and Families Research Proposal Review Committee. Investigators are required to complete and submit the appropriate forms in order for this review to occur. No research may begin with a particularward until approval is obtained.

 

[Linda7NJ]

Insurance can't be billed if it doesn't exist.

This is true.
Are either of her parents working?


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[MyBelle]

You're wrong.
I've provided links up thread.


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unless, of course, private insurance is just another figment of Mommy & Daddy Dearest's very vivid imaginations. They seem to have a real knack for never paying for anything out of their own pocket.

 

[MyBelle]

This is true.
Are either of her parents working?


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Not that I can find. Mommy is ex-skating instructor (iow, nuthin) and Daddy blames his money woes on an ex-gig he turned in for unfair labor practices and claims to be a financial planner with a house in foreclosure because it was their fault (iow, nuthin)

If "ain't my fault" is a profession, by golly these are pros!!

 

[Linda7NJ]

And now they're being denied that SSI check too


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[Linda7NJ]

…“Justina is in a world of hurt. She is physically and mentally dying. She doesn’t have much longer.” He wonders how much more DCF “abuse” she’ll be able to endure. He contends that Justina is still undergoing behavior modification therapies, which includes drug-induced treatments. He knows that “Justina is being tortured.”


http://www.lifenews.com/2014/04/21/...ealth-is-failing-she-doesnt-have-much-longer/

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[Linda7NJ]

http://www.waysideyouth.org/special-education-services/
A therapeutic special educational environment for adolescents with special learning needs. Offers a high staff to student ratio, small, structured classrooms, a 12 month/220 day school calendar, individualized education planning, a comprehensive behavior management system, clinical support services and MCAS preparation.


So... Again she's being educated.


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[jjenny]

I have no clue what Justina is doing at Wayside.
She doesn't have any of the conditions students that are accepted at Wayside have been diagnosed with. Where exactly is somatoform on that list of conditions? What is she doing there?

From your very link:
"Students accepted at Wayside Academy have been diagnosed with Conduct Disorder, Oppositional Defiant Disorder, Major Depression, Bipolar Disorder, alcohol and drug abuse, Attention-Deficit/Hyperactivity Disorder, Impulse-Control Disorders, and Reactive Attachment Disorder."


http://www.waysideyouth.org/special-education-services/