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Fighting for a Last Chance at Life
New York Times ^ | May 16, 2009 | Amy Harmon

Posted on 05/17/2009 7:29:46 PM PDT by reaganaut1

As Lou Gehrig’s disease sapped Joshua Thompson of his ability to move and speak last fall, he consistently summoned one question from within the prison of his own body. “Iplex,” he asked, in a whisper that pierced his mother’s heart. “When?”

Iplex had never been tested in people with amyotrophic lateral sclerosis, the formal name for the fatal disease that had struck Joshua, 34, in late 2006. Developed for a different condition and banished from the market by a patent dispute, it was not for sale to the public anywhere in the world.

But Kathy Thompson had vowed to get it for her son. On the Internet, she had found enthusiastic reviews from A.L.S. patients who had finagled a prescription for Iplex when it was available, along with speculation by leading researchers as to why it might slow the progressive paralysis that marks the disease. And for months, as she begged and bullied biotechnology companies, members of Congress, Italian doctors and federal drug regulators, she answered Joshua the same way:

“Soon,” she said. “Soon.”

At a time when terminally ill patients have more access to medical research than ever before, and perhaps a deeper conviction in its ability to cure them, many are campaigning for the chance to be treated with drugs whose safety and effectiveness is not yet known.

(Excerpt) Read more at nytimes.com ...


TOPICS: Culture/Society
KEYWORDS: als; fda; healthcare; iplex
The government should let terminally patients try unproven treatments at their own expense.
1 posted on 05/17/2009 7:29:46 PM PDT by reaganaut1
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To: reaganaut1

Coming soon to a Government Health Care Service near you!


2 posted on 05/17/2009 7:34:36 PM PDT by Mr. K (physically unabel to proofreed (<---oops))
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To: reaganaut1

That’s right. What do they have to lose? I had a dear friend with ALS. It is the most debilitating disease you can get. She finally just choked to death.


3 posted on 05/17/2009 7:41:07 PM PDT by Marysecretary (GOD IS STILL IN CONTROL.)
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To: Mr. K

And you don’t know how that scares me with my health concerns. I’m 70. They would probably just as soon I die.


4 posted on 05/17/2009 7:41:58 PM PDT by Marysecretary (GOD IS STILL IN CONTROL.)
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To: reaganaut1
many are campaigning for the chance to be treated with drugs whose safety and effectiveness is not yet known.

The lock on medicine, put in place by the AMA and congress needs to be removed.

5 posted on 05/17/2009 7:46:47 PM PDT by org.whodat
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To: org.whodat

As quasi-libertarian, I believe that any drug on earth should be open to prescribe by any doctor if the doctor is willing to take responsibility for the results. As an in between measure, perhaps there should be a second tier of “try at your own risk” drugs which result from a simple majority vote of the AMA, and which patients or their legal representatives must sign legal releases to get.


6 posted on 05/17/2009 8:06:39 PM PDT by HiTech RedNeck (Beat a better path, and the world will build a mousetrap at your door.)
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To: org.whodat

The bureaucracy in the way is not the AMA or even Congress, it’s the FDA.


7 posted on 05/17/2009 8:08:24 PM PDT by HiTech RedNeck (Beat a better path, and the world will build a mousetrap at your door.)
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To: HiTech RedNeck
The bureaucracy in the way is not the AMA or even Congress, it’s the FDA.

The bureaucracy does not pay the K street lobbyist, the doctors and the AMA does. They don't want you to be able to buy medicine without them getting their cut. The congress writes the laws, the FDA and the bureaucracy enforce them.

8 posted on 05/17/2009 8:13:10 PM PDT by org.whodat
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To: org.whodat

Last I heard, it’s the big drugcos and the likes of Walgreens that make it big off of Rx’s. Shouldn’t be any skin off the AMA’s nose.


9 posted on 05/17/2009 8:18:06 PM PDT by HiTech RedNeck (Beat a better path, and the world will build a mousetrap at your door.)
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To: HiTech RedNeck
My god, who writes the prescription??
10 posted on 05/17/2009 8:35:17 PM PDT by org.whodat
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To: HiTech RedNeck; org.whodat; reaganaut1
I wrote a vanity on this awhile back.

Cheers!

11 posted on 05/17/2009 8:47:03 PM PDT by grey_whiskers (The opinions are solely those of the author and are subject to change without notice.)
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To: org.whodat

The doctor (or in some cases the nurse practitioner). Historically, before insurance companies began rigorously enforcing lists for cost control, the doctor would commonly give the patient what he asked for if it was even plausibly suitable (that’s why, for example, we now have a heated race between antibiotics and microbes).


12 posted on 05/17/2009 8:49:50 PM PDT by HiTech RedNeck (Beat a better path, and the world will build a mousetrap at your door.)
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To: grey_whiskers
And you were mostly correct. The government has made a joke out of the cost of medicine, not to mention the joke of a pretense of the AMA to give a damn about the costs in a hospital.
13 posted on 05/17/2009 8:54:49 PM PDT by org.whodat
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To: HiTech RedNeck
(that’s why, for example, we now have a heated race between antibiotics and microbes).

Like global warming, I don't believe it for one minute. When the Australian doctor found a few years ago that stomach ulcers was a bug, the doctors in the united states refused to believe it, now all those so-called treatments they proscribed for the stomach are cheap as hell and over the counter.

14 posted on 05/17/2009 8:58:57 PM PDT by org.whodat
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To: reaganaut1
The government should let terminally patients try unproven treatments at their own expense.

"The government" has a book in which are listed the rules. To deviate from those rules is dangerous to the bureaucrat way of life. Common sense gets checked at the door.

15 posted on 05/17/2009 9:07:20 PM PDT by RobinOfKingston (Democrats, the party of evil. Republicans, the party of stupid.)
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To: org.whodat

I am hard pressed to find any other explanation for the hardiest nasties being found in any hospital you would care to visit.

The non prescription forms of Tagamet, etc. are about on par with their former prescription prices when compared mg. for mg. They are not intended for ulcer treatment.


16 posted on 05/17/2009 9:10:03 PM PDT by HiTech RedNeck (Beat a better path, and the world will build a mousetrap at your door.)
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To: HiTech RedNeck
I did not say treatment, I said that is what the doctors prescribed, their stupid treatment was with a knife.
17 posted on 05/17/2009 9:15:55 PM PDT by org.whodat
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