[nfb-talk] A little concerned about this new drug aimed at totally blind population

[Mike Freeman]

Pete:

In fairness to Vanda, we do not know that they did *not* do base-line sleep
studies to determine that other factors weren't involved. So while I am
uneasy about the big splash Vanda is trying to make and also think the whole
field of sleep disorders and the blind is more complex than most are willing
to admit, I don't think we should tar an feather Vanda by accusing it of
doing something it might very well have done and is continuing to do.

Mike


-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Peter
Donahue
Sent: Saturday, February 01, 2014 3:14 PM
To: NFB Talk Mailing List
Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
totally blind population

Hello Beth and everyone,

    And to the best of my knowledge they're not first putting their test
subjects through baseline sleep studies to rule out legitimate sleep
disorders before determining that the issue is connected with the sleep-wake
cycle. What I fear is happening is that these folks are convinced that one's
blindness affects our ability to sleep normally ignoring the possibility
that these blind individuals may have bonafied  sleep disorders having
nothing to do with their blindness. As long as blind individuals and the NFB
continue to be suckers for this kind of research they'll keep on doing it.

    I know first hand what can happen when a sleep disorder goes undiagnosed
for years. When I was growing up folks thought that my blindness was
affecting my sleeping. It took an unfortunate incident I was involved in
during our 2001 National Convention that eventually lead to my being
diagnosed with the worst case of Obstructive Sleep Apnea (OSA)
imaginable!It's very possible that had the Sleep Apnea been diagnosed sooner
the incident I referred to above and other difficulties I had through the
years due to lack of sleep could have been prevented. I fear that other
blind individuals are being sent down that same road.

    The NFB has had a long history of scrutinizing so-called research of
this kind. I fear we fell down on the job with this one. If these people
were conducting this research responsively they would require their subjects
to undergo sleep studies before investigating sleep-wake issues that may or
may not be directly connected to blindness. These people have been
frighteningly silent on this point. Having experienced what can happen when
a sleep disorder goes undiagnosed neither of us want any part of such pseudo
research and hate the thought of drug companies getting rich at our expense.

We will be glad when the NFB disassociates from what these people are doing
and turns its attention to more important matters concerning our ability to
live independent and productive lives.

Peter Donahue




 ----- Original Message -----
From: <beth.wright at mindspring.com>
To: <nfb-talk at nfbnet.org>
Sent: Saturday, February 01, 2014 3:33 PM
Subject: [nfb-talk] A little concerned about this new drug aimed at totally
blind population


> Hi, folks. Just wanted to see if I could get the scoop on this new 
> drug that's supposed to correct the sleep/wake cycles in people who 
> are totally blind. I'm totally blind myself, but haven't had any 
> problems with my sleep patterns, so, even though I've seen lots of ads 
> for it on blindness-related web sites and know that they've been a 
> major sponsor at our conventions, I wasn't all that concerned about it 
> one way or the other. As far as I can tell, their ads have been pretty 
> tastelike and their recruitment techniques, fairly low key. Lately, 
> though, they seem to be ramping up the message. From what I can tell, 
> they now seem to be claiming that this sleep/wake thing is a serious 
> problem, affcting around eighty thousand people in the US, the 
> majority ofthe totally-blind population. I think that's deceptive. I 
> know that they need to reach the largest number of people possible in 
> order to make a sufficient profit, but I don't think they should 
> exaggerate the seriousness of this so-called disorder.
>
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