[NFBWATLK] Our Vanda story.

[Judy Jones]

Thank you very much, Marci, so thankful for Dr. Hammond setting us straight.
It was amazing to see the drug Rozerem take effect so quickly.  And it cost
a fraction of what Hetlioz would have, even with insurance coverage.
Hetlioz is insanely expensive, and it seems expenditures like that would be
unnecessary, especially since there are other drugs out there less costly
that will work.  Just a way to drive medical costs up, if not paying for
substitutes or generic.

At the time, Chris contacted Anil Louis, asking why the NFB would back
Vanda, giving him the information for Rozerem, just as an example, but
nothing much came of that conversation.

Just food for thought as you guys meet with the Vanda rep, who could not
answer my questions, either when I spoke with one at our Idaho convention.

Judy

Judy


-----Original Message-----
From: NFBWATLK [mailto:nfbwatlk-bounces at nfbnet.org] On Behalf Of Marci
Carpenter via NFBWATLK
Sent: Friday, October 26, 2018 10:48 AM
To: NFB of Washington Talk Mailing List
Cc: mjc59 at comcast.net
Subject: Re: [NFBWATLK] Our Vanda story.

Judy, I am glad that Kris got and accurate diagnosis and found appropriate
treatment.

Marci

Sent from XFINITY Connect Mobile App



------ Original Message ------

From:'NFB of Washington Talk Mailing List'List'
To:'NFB of Washington Talk Mailing List'List'
Cc:JudyJones
Sent: October 26, 2018 at 9:29 AM
Subject: Re: [NFBWATLK] Our Vanda story.

A deal has been cut somewhere, I'm almost sure. Judy -----Original
Message----- From: NFBWATLK [mailto:nfbwatlk-bounces at nfbnet.org] On Behalf
Of Dean Martineau via NFBWATLK Sent: Friday, October 26, 2018 9:24 AM To:
'NFB of Washington Talk Mailing List' Cc: Dean Martineau Subject: Re:
[NFBWATLK] Our Vanda story. Vanda, and its drug Hetlioz, strongly exude what
a law professor of mine called the SOR, (Smell of a rat.) Supposedly, some
foundation covers the cost of the drug for those whose insurance companies
approve it. I doubt any blind person pays the cost for this drug, because
almost none could do so. It is absurdly expensive. Somehow, money is
changing hands here, and getting into somebody's pocket, but the whole
scheme doesn't make any sense to me. Thought-provoking reading:
http://bahaiteachings.org -----Original Message----- From: NFBWATLK On
Behalf Of Judy Jones via NFBWATLK Sent: Friday, October 26, 2018 11:34 AM
To: 'NFB of Washington Talk Mailing List' Cc: Judy Jones Subje
ct: [NFBWATLK] Our Vanda story. A few years ago, Chris was diagnosed with
Non-24, and did a lot of research to try to get insurance to buy the Vanda
drug. He finally got an appointment with a neurologist in the area, who
stated flatly that he would not prescribe Vanda's drug, Hetlioz, because of
the unnecessary expense, when other drugs would fill the bill in being as
affective. He saved us thousands of dollars by prescribing another drug,
Rozerem. Chris only had to take it about six months, and is no longer
bothered by non-24. This was back in, I believe, 2015. When Vanda came to
our Idaho convention, I approached them about the drug, and the rep told me
that the drug wouldn't really work, although it is a derivative of Vanda's
drug. Well, that is not true, and I pointed out that we had already
experienced for ourselves that Rozerem really works, and for a fraction of
the cost, and asked why Vanda's was so expensive. I have been disappointed
that NFB got on this band-wagon, when the
reare other alternatives out there. Also see link below.
https://www.thestreet.com/story/11954365/1/vandas-sleep-disorder-drug-is-a-n
ightmare.html Judy _______________________________________________ NFBWATLK
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