dear justin trudeau,

[mopinko]

please grant visas to these sick kids.

[hlthe2b]

1. No solution... Several are getting health care only available here (clinical trials),

extensive and multiple heart surgeries for congenital defects, some receiving all nutrition via feeding tubes to counter a genetic defect. Canada's health care system could not accommodate even those who are not too fragile to leave the hospital.

This really is a death sentence for some of them.

[mopinko]

3. feeding tubes arent that hard, and as far as clinical trials,

i dont now the details of this, tho i know the young woman that has was on rachel has a rare disease and getting experimental treatment, but i dont know how many others are.
one mentioned as cf, which is treatable.

canada's medical system is every bit as good as our.

[hlthe2b]

5. The one with the feeding tube is getting experimental treatment via the tube.

I'm not saying Canada's system is not every bit as good as ours, but we do have some clinical trials and experimental procedures not being performed there. Not to mention issues with finding funding that is already in place in the US.

This isn't like a cleft palate surgery or a more routine congenital heart surgery which, yes, could be done many places in many countries. The Boston cases are receiving genuinely unique care.

[Eliot Rosewater]

2. Does Canada have the facilities? The reason we have some of the best medical

facilities here is because people like David Koch make sure that when THEY get sick and their kids get sick they dont have to travel far.

Didnt work out so well for David but I am not sure if anybody else has the facilities, maybe someone here knows.

[mopinko]

4. i can say for certain, but

they do plenty of research there, and they have very good care.
i would have a hard time believing they cant handle it.

[hlthe2b]

6. For heavens sakes, clinical trials are unique to the facility performing/offering them.

I'm acquainted with one of the geneticist researchers indirectly involved withone of the Boston cases. You don't realize just how absolutely unique this care is.

[mopinko]

7. i understand that, although there could be a compassionate use

exception so that the drug could go w them.
some drug trials do allow people to continue receiving the drug after the trial ends.

i realize this wouldnt work for all of them. but the number that could do it isnt zero either.

[hlthe2b]

8. Simply not possible for several of them. It isn't a "marketable or packaged drug" and one

is on her fourth cardiac surgery not performed elsewhere.

Like I said, these are the most unique of cases. It isn't like a drug trial entering its last phase before being marketed.

Hopefully more of their specifics will be reported on soon and it will be easier to understand.

[mopinko]

9. so let's figure out how to save as many as they can.

[hlthe2b]

10. We need the courts to step in and order ADMIN to allow them to remain. First the public has to

express sufficient outcry. I belong to ACLU-Colorado. A reporter friend trying to look into this said that a contact at ACLU-CO discussed it today, but are not yet aware whether any similar situations may be playing out here. Undoubtedly ACLU or other groups are looking into it in Miami and Boston where the cases Rachel reported on are receiving care. Call reporters at your leading newspaper and tv networks and ask them to investigate whether this is happening at major medical centers in your locale.

Call your Congressional representatives and Senators to demand they get involved. I made two such calls today. Senator Bennet's office stated they would be sure he watched the TRMS segment and became aware of the situation.

[luvtheGWN]

11. Clinical trials are unique to the facilities carrying them out.

Note that I said "facilities". Once a drug has been manufactured, it makes economic and empirical sense for as many patients, who qualify, as possible to be enrolled in the trial. Invariably, these patients are from 3 or 4 different countries.

I don't know what the illness is that these patients have (nothing in the OP to indicate), but if it's a new drug or procedure, it's entirely likely that Sick Kids Hospital in Toronto (known around the world, BTW) is participating.

[hlthe2b]

12. these are not at the stage that you think. These are genetic manipulations and surgeries in many

cases. Not just a drug trial with multiple participating hospitals/academic medical centers throughout the country. These are quite distinctly different from what you are imagining--at least in the case of three that I am aware of.

Of course, there are others being treated for more mainstream conditions, such as cystic fibrosis and some forms of cancer for which there would be options (if they are stable to travel) to go elsewhere, however callous that might be. But why would you want to MAKE them?

It isn't a slam on Canada's abilities. There are undoubtedly procedures and new treatments in development in Canada for other conditions that are not available (as yet) here.

[luvtheGWN]

15. Thanks for the explanation!

I was only responding about clinical trials in general, as there had been no explanation of the specific medical condition.

[mopinko]

16. i dont want to make them. i want them to stay right here.

however, i dont make the rules.
i just dont want them to die.
and i dont know what the fuck is happening to my country.

obviously the best thing to do it to shove this right up twitler's big ass.

[hlthe2b]

13. mopinko and luvtheGWN, here is one example of care available nowhere else(since she has gone public)

https://www.nytimes.com/2019/08/29/us/immigrant-medical-treatment-deferred-action.html

Her agreement to come and participate in this trial/study is providing the data and research needed to help others in this country and might eventually be exported elsewhere. Her disease is very rare, making this center the only one conducting such research at this time

Maria Isabel Bueso was 7 years old when she came to the United States from Guatemala at the invitation of doctors who were conducting a clinical trial for the treatment of her rare, disfiguring genetic disease. The trial was short on participants, and thanks to her enrollment, it eventually led the Food and Drug Administration to approve a medication for the condition that has increased survival by more than a decade.

Now 24, Ms. Bueso, who had been told she likely would not live past adolescence, has participated in several medical studies. She has won awards for her advocacy on behalf of people with rare diseases, appearing before lawmakers in Washington and in Sacramento. Over the years, her parents have paid for the treatment that keeps her alive with private medical insurance.

But last week, Ms. Bueso received a letter from the United States government that told her she would face deportation if she did not leave the country within 33 days, an order described by her doctor, lawyer and mother as tantamount to a “death sentence.”

Without any public announcement, the United States Citizenship and Immigration Services eliminated a “deferred action” program this month that had allowed immigrants like Ms. Bueso to avoid deportation while they or their relatives were undergoing lifesaving medical treatment. The agency said that it received 1,000 deferred-action applications related to medical issues each year.

[mopinko]

17. yeah, this one i knew. very, very rare disease.

this is just so insane, and i'll i'm trying to say is-
would somebody please help these children.

[applegrove]

14. Our hospitals are top notch. There may be some new treatment not available

anywhere but say the MAYO Clinic right now, but there is treatment at canada's research hospitals that you can't get anywhere else. Worst i've seen in canada was a guy who lived in a small town i lived in. He was retired and doing the houseboat thing. Anyway he had a heart attack and the small town hospital didn't have the ability to operate or something and he only had 1/2 an hour to live. If he had lived an hour east he would have had access to a regional big hospital complex. His kids told me. They gathered from around the country for his funeral and came into the restaurant i worked in where he was a regular. They told me. Sad. But they felt good he died living the crazy houseboat lifestyle he loved. He could not have lived that an hour east i don't think.