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

[David Andrews]

You may consider the ads to be trivial -- but many here will 
not.  They reflect how society feels about us, and they perpetuate 
antequated notions of blindness and blind people.

Dave

At 12:36 PM 2/2/2014, you wrote:
>You'll have to forgive me for thinking you might not be looking at 
>this issue with complete objectivity .  I can't imagine how I got 
>the idea that you held antipathy for  Vanda. I guess maybe I took it 
>wrong when    you called them snake oil salesmen.
>
>And, no, I do not have to admit  their ads take us for fools. That's 
>a subjective issue that I want no part of. If you want to gripe 
>about their ads, go ahead.  It wouldn't occur to me to care about 
>something so trivial.
>
>On 02/02/2014 09:59 AM, Mike Freeman wrote:
>>Hey, man! Tone down the rhetoric.
>>
>>If you read carefully one of my last messages, I admitted to you that I
>>stood corrected and that one of the articles did say they did a double-blind
>>study.
>>
>>Please do not confuse skepticism with antipathy. I don't think any of us
>>begrudge  Vanda Pharmaceuticals the right to develop a non-24 drug. But
>>their advertising hype tends to prejudice some of us against their research
>>in that some of us think that a truly scientific study wouldn't appeal as
>>much to problems of the blind in terms that are all-too-familiar to many of
>>us.
>>
>>Those of us with diabetes are unfortunately very familiar with research hype
>>-- "they" have been going to have a cure for Type 1 diabetes "just around
>>the corner" for the past half-century, for example. And there has been
>>research here in the Pacific Northwest on the non-24 problem since something
>>like 1985. I remember a doctor from Oregon State or the University of Oregon
>>writing to Dr. Jernigan asking what we thought of such research about that
>>time and he replied, in effect, that if the research was carefully done, NFB
>>would have no problem with it. IMO this is still what many of us think.
>>
>>But you'll have to admit that their advertisements seem to take us for fools
>>-- not an auspicious way to win friends and influence people.
>>
>>Mike
>>
>>
>>-----Original Message-----
>>From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Todor Fassl
>>Sent: Sunday, February 02, 2014 7:08 AM
>>To: NFB Talk Mailing List
>>Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
>>totally blind population
>>
>>Mike,
>>
>>I asked you a question. How in the world did you come to the conclusion that
>>the FDA approved this drug without a double blind study? That's an important
>>question. You should try to figure out what caused you to make
>>such a ridiculous mistake.   Maybe you're not looking at this issue
>>objectively. Maybe you should try to be more careful. That's always
>>important but even more so when dealing with medical issues.
>>
>>All this stuff below is nothing but a smoke screen you're throwing up to
>>avoid admitting you shot your mouth off on a topic you know nothing about.
>>Now, get out there, do some research about this drug, and then get back to
>>us if you still have something to say.
>>
>>
>>
>>On 02/02/2014 12:31 AM, Mike Freeman wrote:
>>>Sir:
>>>
>>>I sit corrected about a double-blind study and am glad to be informed.
>>>However, I assure you that FDA isn't always as careful as you might
>>believe.
>>>The announcement itself gives some indication of this in that FDA
>>>fast-tracked experimental use of this drug, presumably because of the
>>>blindness angle. And be assured that until various specialists in
>>>statistical medicine and epidemiology insisted otherwise, the original
>>>trial of the Salk poleo vaccine was going to be a single-blind, not a
>>>double-blind study. But wiser heads prevailed so it was a full
>>>pluscebo-controlled, double-blind study with something like fifty
>>>thousand participants -- enough to give truly valid statistical results.
>>>
>>>And way back in 1936,Dilantin was fast-tracked for epilepsy control
>>>because at that time, it was about the only drug other than
>>>phenobarbital that was effective.
>>>
>>>And can you say viox or celibrex? Or Avandia, which was originally
>>>approved, then got a strong warning label and now has been shown
>>>largely not to merit that label?
>>>
>>>We're all (including scientists and medical personnel) human.
>>>
>>>Cheers!
>>>
>>>Mike
>>>
>>>
>>>-----Original Message-----
>>>From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Todor
>>>Fassl
>>>Sent: Saturday, February 01, 2014 4:50 PM
>>>To: NFB Talk Mailing List
>>>Subject: Re: [nfb-talk] A little concerned about this new drug aimed
>>>at totally blind population
>>>
>>>Mike,
>>>
>>>How in the world did you come to the conclusion that no double-blind
>>>studies have been done? That's *crazy*. The FDA doesn't approve drugs
>>>w/o double blind studies. No wonder people accuse you of not knowing
>>>what you are talking about.  This is so typical of your behaviour. You
>>>never seem to care whether you know  the first thing about a subject
>>>before shooting your mouth off. Do you realize how irresponsible you
>>>are being? This is a medical issue, What the f**k do you know about
>>medicine?
>>>Here's a link to an article that specifically mentions a double blind
>>>study that was done:
>>>http://www.sciencedaily.com/releases/2013/06/130617142045.htm
>>>
>>>
>>>
>>>
>>>
>>>
>>>On 02/01/2014 05:37 PM, Mike Freeman wrote:
>>>>Steve:
>>>>
>>>>Obviously, I agree with you on all counts.
>>>>
>>>>In addition, while at the national Center, I heard a number of ads
>>>>pushing hetlioz and I found it amusing that they start out with a
>>>>supposedly blind person saying: "You can't see me because this is
>>>>radio. I can't see you because I'm totally blind." AS if he wasn't also
>>on the radio!
>>>>While not denying that some may find the drug helpful, I must say
>>>>that,
>>>like
>>>>you, I do not think nearly enough work has been done using controls
>>>>and
>>>I'd
>>>>bet good money that no pluscebo-controlled, double-blind studies have
>>>>been done.
>>>>
>>>>Mike Freeman
>>>>
>>>>
>>>>-----Original Message-----
>>>>From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of
>>>>Steve Jacobson
>>>>Sent: Saturday, February 01, 2014 2:24 PM
>>>>To: NFB Talk Mailing List
>>>>Subject: Re: [nfb-talk] A little concerned about this new drug aimed
>>>>at totally blind population
>>>>
>>>>Hi,
>>>>
>>>>I have also been uneasy about all of this, but I recognize I don't
>>>>know
>>>all
>>>>there is to know about all this.  Because One is blind and doesn't
>>>>seem to have a sleep problem like this doesn't mean nobody does.
>>>>Because ablind person has a sleep disorder doesn't mean it is related
>>>>to blindness, either.  I have seen firsthand where sleep clinics
>>>>dealing with
>>>a
>>>>blind person assume the problems are related to blindness without
>>>>running normal tests.  I've seen doctors actually get excited like
>>>>little kids when they think they have a blind person with a sleep
>>problem.
>>>>It also appears that the drug Vanda has has now been approved and was
>>>>put on a sort of fast track because it deals with a rare and severe
>>>>condition.  Blind people will have a disservice done if this
>>>drug
>>>>is prescribed before a thorough evaluation is performed to analyze
>>>>serious sleep disorders.  I also think that painting blind people
>>>in
>>>>their mass-marketing efforts as struggling to stay awake all day is
>>>>not helpful in our efforts to get jobs.  There have been other
>>>>marketing efforts, though, where people have not been paid, so I
>>>>don't know if that
>>>is
>>>>Vanda or not.
>>>>
>>>>
>>>>I will forward the note I received regarding the approval of this drug.
>>>I'm
>>>>afraid I had to laugh a little when I saw that one side-effect is
>>>>drousiness.  I want to be clear, though, that I do not claim that
>>>>there
>>>are
>>>>not people with serious disorders who may be helped.  I also can't
>>>>say
>>>that
>>>>I know for certain that this particular disorder doesn't exist.  I
>>>>just think we need to be sure that we are not stereotyped into this
>>>>disorder in a way that leaves other disorders undiagnosed.  We also
>>>>need
>>>to
>>>>recognize that for such research to be real accurate, a control group
>>>>who
>>>is
>>>>not blind but shares other similarities, such as the same
>>>>unemployment rate, would need to have been used, and I have not been
>>>>convinced that was done in the reading I've done, but I don't claim
>>>>I've read every word of every study.
>>>>
>>>>Best regards,
>>>>
>>>>Steve Jacobson
>>>>
>>>>On Sat, 1 Feb 2014 13:48:39 -0800, Mike Freeman wrote:
>>>>
>>>>>Beth:
>>>>>I absolutely agree with you! Although a few blind folks may have a
>>>>>sleep disorder (I know of one such person), so do many sighted
>>>>>people and it is
>>>>my
>>>>>experience that when most blind persons with sleeping problems are
>>>>>put on
>>>a
>>>>>regular schedule (i.e., no odd hours, working a nine-to-five day,
>>>>>etc.)
>>>and
>>>>>get enough vigorous exercise, either on the job or as a program,
>>>>>their
>>>>sleep
>>>>>problems disappear. For example, I know a lady who used to have
>>>>>sleep problems when she wasn't working. But when she started working
>>>>>a regular
>>>>day
>>>>>at a Head Start program, up and down all day with the kids, miracle
>>>>>of miracles, her sleep problem disappeared!
>>>>>So I'm very much a doubter. Trouble is that when I voice such
>>>>>skepticism with much vigor, I get a lot of push-back from other
>>>>>blind people (both
>>>in
>>>>>ACB and NFB),maintaining I don't know what I'm talking about.
>>>>>Also, I know a couple of people who are participating in their
>>>>>so-called studies and haven't received payment yet.
>>>>>Can you say "snake-oil"?
>>>>>Mike Freeman
>>>>>
>>>>>-----Original Message-----
>>>>>From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of
>>>>>beth.wright at mindspring.com
>>>>>Sent: Saturday, February 01, 2014 1:33 PM
>>>>>To: nfb-talk at nfbnet.org
>>>>>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 s o-called
>>>>>disorder.