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American Heart Association Gives OSA Patients the Finger
I have personally approached the marketing/ communications director of the American Heart Association to work together with the NYC AWAKE group to spread OSA awareness, and she essentially told us to pound sand because the connection between OSA and heart disease was not sufficiently proven. Outrageous, huh?
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Replies to This Discussion
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Permalink Reply by Richard Morgan on
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First, let me say, Thank you for going to bat for us. I think you are doing a fantastic job in spreading OSA awareness and providing us with OSA a place to go for support. Apparently there is no connection between a college degree and intelligence, either. Frankly, I'm astounded. I know first hand from my Pulmonologist, OSA has caused the bottom of my heart to thicken and it has caused my pulmonary hypertension. What the rest of us need to do is write the American Heart Association, and straighten this matter out. If we are lucky enough, we may just find someone smarter on this topic than Miss Marketing, and hopefully get some cooperation. If they are really about educating people on heart disease how can they possibly deny OSA is connected? I, for one, Mike, will write them. Thanks again for all you do.
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Permalink Reply by susan mccord on
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Right! :-)
j n k said:Bottom line as I see it: As long as the AHA is pro-breathing and pro-sleeping, I don't see the conflict in their supporting machines that help people breathe and sleep. Right? :-)
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Permalink Reply by birdshell on
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OK, Mike, I see your point!
Mike said:by no means am i suggesting that this one person believes one thing or another. rather, she is the director of marketing and communications for the AHA. it is her job to communicate the organization's viewpoints to the public, and that's what she was doing. it's part of her job. she is the messenger for an agenda that comes from the medical directors/ scientific advisors to the organization, which i think is more alarming than if this were in fact just one individual employee's viewpoints.
birdshell said:I have to comment! I ran Jump Rope for Heart (JRFH) activities/fundraisers in my classes for years. (For more information: http://www.aahperd.org/jump/ and http://www.americanheart.org/presenter.jhtml?identifier=2360 This is a good condensation of the reasons for participation: http://www.americanheart.com/presenter.jhtml?identifier=3023404 )
The main goal of the American Heart Association is education about heart health, as I understand and experienced their work. The motto under their logo now says, "Learn and Live". Their mission statement is: "Building healthier lives, free of cardiovascular diseases and stroke." Now, that does not mean that all of the people who work for them are exactly models of fitness, knowledge, and outreach/educational skills. They had a lot of turnover in the people who dealt with the teachers. The supervisors had about a 2 year stint before they moved to another position...and the best ones, IMHO, were promoted. I think that being a professional fundraiser (if that is what they are) may not be too glamorous as it seemed to consist of trying to visit teachers and talk to them on their breaks, handle problems as a sort of ombudsman, and take care of a lot of coordination of the materials and education for the participating schools.
I had one student whose mother was very opposed to her participation in our Jump Rope Club, which met on Fridays after school. She had sought help for her father from the AHA when they could not find help for him after a stroke. Well, the AHA does not supply help for recovering heart/stroke victims. The coordinator at the time was excellent, and she called to offer her apologies and concern. It wasn't long before this mother was a full-out supporter, and her daughter is at least at a lower risk for heart attack and stroke herself. Please note that while we were jump roping, it was not an official connection with the JRFH/AHA folks, yet they came through for the overall good.
So, while I cannot say much about the person who was uninterested in the coordination of apnea awareness and heart health...I can say that she is hopefully an isolated employee.
It seems to me that there is a good fit with AWAKE and AHA's motives. Both seek to educate and do so pretty actively. You know, it is probably a good idea to make kids aware of symptoms of apnea...maybe they can help to save some lives! I think that could easily be added to some of the JRFH, Hoops for Heart, and other fundraiser information. I note that the obesity issue is now featured more prominently.
I was not diagnosed with apnea while teaching, or I would definitely have pursued some of these issues with my own pipeline in the AHA. I think that possibly, rather than targeting one person who may not really represent the entire organization, we should do more of a grassroots campaign. I know that if I were in this person's place and was targeted with floods of e-mail pointing out that I was undereducated, I would be outright defensive and OFFENSIVE. Just my thought, but if they keep hearing it...they may realize it is necessary to include apnea education along with their heart health materials.
Karen
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Permalink Reply by Donald R. Byrd on
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Dr. Park
Perhaps we can hope Patient Awareness will change the view of trade organizations over time. I think OSA has gained alot of attention from M.D's, Specialist and Patients during the past 5 yrs. I look forward to how recognizing and treating sleep apnea will continue to evolve during the next 5 years.
I'm switching gears here but I want to bring to light a powerful part of your comment.
I really like the last sentence of your post, it makes me think. This statement is great for a discussion in itself, maybe Mike will post it as a topic for board discussion " Imagine what would happen if 90% of sleep apnea patients were found and treated..."
I imagine the cost of healthcare would be reduced and the quality of life for many people would begin to improve.
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Permalink Reply by Rooster on
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Donald R. Byrd said: .... " Imagine what would happen if 90% of sleep apnea patients were found and treated..."
I imagine the cost of healthcare would be reduced and the quality of life for many people would begin to improve.
Well said (you and Park). That is the vision I have held for several years.
I also have another vision that we will figure out an easy way to ensure that children develop wide, deep, healthy and attractive jaws and then obstructive sleep apnea becomes a quaint piece of history.
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Permalink Reply by Mike on
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j n k, this just confirms that the AHA is not "on board" with a strong connection between OSA and all sorts of heart disease. look at the next to last slide, which is essentially a bunch of lame excuses for not recognizing the strong connection between OSA and all sorts of heart disease -- this is it, right here, in their own words:
j n k said:These slides give the AHA stand on OSA and CSA in a nutshell:
http://www.americanheart.org/downloadable/heart/1217014711946slides...
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Jeff, now i'm not sure what we're debating: Is it that you agree with the AHA that there is insufficient scientific proof of the connection between OSA and all sorts of heart disease?
j n k said:I feel your pain, Mike. I do. But for me the pain is in the accuracy of what that slide says--that there needs to be scientific support for what so many of us assume, from what we've seen with our own eyes, to be the absolute truth.
We can print all the flyers we want of what we believe to be true. They won't stop us. But if we don't have the scientific evidence to back it up, no mainstream medical association is going to endorse it. That's just how it works. And from a cardiac point of view, I don't see how the above slide differs from the stand of the AASM or the AMA or any other piece of the establishment in mainstream medicine.
People like you and Dr. Park are on the cutting edge. I respect that more than I can say. I believe that is needed and that you need to be vocal. I think you should push just as hard as you want to push the medical associations. But the bottom line is that if the studies aren't there, the associations are only going to dig in their heels. That's what they do. That's what they are for.
My view may be way off, so go with your gut. (Like I even have to say that! :-)) I just think I would have a hard time arguing with that slide, scientifically speaking, and I would assume most sleep professionals would have a hard time as well.
We are still in the early stages of this kind of sleep medicine. It takes time. It is frustrating. But making statements that seem to be true without sufficient evidence that it IS true does not seem to me to be the answer. I don't agree with the AHA on everything. But I have no ammunition to attack their position on this, from where I sit.
The only conspiracy theory I have to offer on it is that if the AHA goes ahead and takes a stand on something that it is still in the process of proving with its own studies, they detract from the upcoming announcement of what they are sure to proclaim as a ground-breaking discovery. (There is nothing worse than stealing one's own thunder.) Other than that, hey, evidence-based medicine is what it is, good or bad. Attack it too vehemently, and you end up in the same category as the alternative fish-oil salesmen. Not a bad place to be economically, but not a place that gets you any respect from the scientists.
Be vocal, I say, but respect the conservative stance of the mainstream associations. Fine line to walk. But it may pay off.
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I respect you jeff, but i think you are off-base here. First, you are distorting my argument to make it sound more extreme than it is. I am not advocating, as you suggest, that the AHA say: "all CVD is prevented if one would only use a CPAP" or "CPAP will cure you of any CVD you have." No. All I'm saying is that the link between OSA and all types of heart disease is real and that the AHA should not refuse to join forces with Apnea organizations like NYC AWAKE on the basis of lack of proof of that connection, as they have done.
furthermore, even if we don't have perfect information on the OSA-heart disease link, we should not let the perfect be the enemy of the good enough. we have good enough information to warrant that the AHA join forces with Apnea organizations to spread awareness of the link.
again Jeff, you da man. and you're entitled to make mistakes, like all of us, which you are surely doing by being an apologist for the AHA position on this ;-)
j n k said:My understanding is that no one argues the connection, only the nature of the connection.
As the source document of the slides says: "Population-based longitudinal studies with objective measurement of OSA, initiated over the past 15 years, have begun to clarify the nature of the OSA–cardiovascular disease link."
So, they admit the link.
Now the question becomes, What is the exact nature of the link? What causes what? Does OSA always cause kidney disease, or does kidney disease somehow trigger OSA in some way? Or is there something else that triggers both? Studies come into play in trying to figure out the evidence of what causes what.
To me, it is clear as daylight: Patients need to breathe and patients need to sleep. And if they don't, every organ system starts to break down.
But for the AHA to say "all CVD is prevented if one would only use a CPAP" or "CPAP will cure you of any CVD you have" would be foolish statements for them to make at this point in the game, so they work hard not to sound like that is what they are saying. Meantime, they wait for the studies.
I would prefer them to see it the way I do. But they aren't going to take my word for it. They are dinosaurs who move at that pace.
I like mainstream. And I like cutting edge. Both. Both are needed. I don't want the cutting edge to be hampered by the mainstream. And I don't want the mainstream to become cutting edge.
That is my only point, really. I know I've been making it badly. Sorry about that.
jeff
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now we're down to Clinton-esque semantics. they should "Man Up" and acknowledge the connection, period. and do whatever they can to publicize it far and wide.
j n k said::-)
I don't need to apologize for a monster behemoth like the AHA--they can handle themselves!
I do think, though, that when they say that the connection between the two is not clear, they would do well to clarify that what they mean is that the NATURE of the connection between the two is not clear and that they DON'T mean they are questioning whether there is any connection at all.
Mike said:by being an apologist for the AHA position on this ;-)
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don't be silly. we're debating semantics here. that doesn't change that you da man. of course you're more than welcome at all the meetings. can't wait to see you at the next one, if you can make it.
j n k said:Yes, I believe that most misunderstandings come down to semantics.
And when a doc/scientist says "the connection is not clear," most of us will hear that statement as "it may not be connected," even if the doc/scientist may have meant "there is evidence that there is a connection, but it is not clear yet what that connection is exactly."
Then again, I have done a bad job connecting or being clear myself, semantics and otherwise.
As long as you let me heckle at the meetings, I'm still happy though. Am I still allowed to come?
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