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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?
Views: 1085
Replies to This Discussion
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Permalink Reply by Mike on
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If the undiagnosed OSA population were diagnosed and treated the heart disease industry would take a big hit. Tons of people would never develop the heart conditions that pay the AHA's bills.
Steven Y. Park, MD said:The AHA is a trade organization, just like all the other medical organizations. Their main goal is to protect their member's professional and financial interests. Admitting that OSA is a major cause of heart disease would be upsetting the status quo, since all the entire heart health industry is based on medications and surgical procedures. Imagine what would happen if 90% of all sleep apnea patients were found and treated...
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Permalink Reply by gordon on
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They want to sell pacemakers and do open-heart surgeries? Call me a cynic.
Mike said:If the undiagnosed OSA population were diagnosed and treated the heart disease industry would take a big hit. Tons of people would never develop the heart conditions that pay the AHA's bills.
Steven Y. Park, MD said:The AHA is a trade organization, just like all the other medical organizations. Their main goal is to protect their member's professional and financial interests. Admitting that OSA is a major cause of heart disease would be upsetting the status quo, since all the entire heart health industry is based on medications and surgical procedures. Imagine what would happen if 90% of all sleep apnea patients were found and treated...
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Permalink Reply by lia deneau on
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Really? thats asenine! old director who was head of cardiac cath lab keeps sending me articles saying otherwise!
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This is the content of an email I just sent to Cathy.wilkins@heart.org.
I am a member of the Sleep Guide information group. A month ago when I was diagnosed with Obstructive Sleep Apnea, my doctor explained that during an apnea event, the heart races due to a lack of oxygen in the blood. According to him and the Kaiser sleep clinic, this can raise blood pressure and damage veins, arteries and other internal organs - in particular the heart. This is the main reason I use a CPAP machine... Kaiser believes strongly that there is a connection between heart health and OSA.
I have also been a loyal supporter of the AHA... until today when I read at the Sleep Guide website that you do not believe there is a connection between severe sleep apnea and heart health. It seriously disturbs me that your organization would take such a stand. I will be watching to see whether the AHA adjusts their thinking and opinion. And my donations will be adjusted accordingly.
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Permalink Reply by Mary Z on
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Well said Nancie. Dr. Park your point is smart, too. They might take a considerable hit on revenue if some of the root causes of cardiac disease were addressed.
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Permalink Reply by birdshell on
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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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Ah ha, BirdShell!!! You can ignore me, but we managed to lure you out of your hiding place w/this thread, eh??
Too bad too. Danielle, Ashley, Nicole and I are all meeting at La Placita in Saginaw for lunch tomorrow. I'll be thinking of you!!!! Nicole has her drivers license now.
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HEY, I read the funny e-mails! HAH, I'm heading north tomorrow...
Judy said:Ah ha, BirdShell!!! You can ignore me, but we managed to lure you out of your hiding place w/this thread, eh??
Too bad too. Danielle, Ashley, Nicole and I are all meeting at La Placita in Saginaw for lunch tomorrow. I'll be thinking of you!!!! Nicole has her drivers license now.
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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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Maybe you should be the communications director for the AHA ;-).
j n k said:I understand the following text to represent the opinions and viewpoints and position of the AHA: "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. An 11-year follow-up of older residents in San Diego (Calif) showed the mortality rate for cardiovascular disease to be higher for those with OSA . . . Prospective analyses of the Wisconsin Sleep Cohort Study indicate that OSA increases the risk of incident hypertension. Snoring, as a marker of OSA, predicted hypertension, cardiovascular disease, and type II diabetes in the Nurses Health Study, as did short sleep duration. . . . Both OSA and CSA occur commonly in patients with heart failure and may contribute to disease progression. Treating sleep apnea may be particularly relevant in these patients, and the diagnosis should be carefully considered."
http://circ.ahajournals.org/cgi/reprint/118/10/1080.pdf
When an organization is dealing with fatal disease, they want studies proving extension of life. Those studies are lacking. They are trying to be responsible in their statements, in my opinion.
I don't blame them for distancing themselves slightly from machine manufacturers treating OSA. They likely consider the ASAA, for example, to be a fancy name for "the makers of OSA CPAP machines." They don't want to endorse something that lacks sufficient evidence (in regards to OSA, not CSA) as a life-saving measure for seriously ill cardiac patients.
It's a tricky stance, but one that I consider to be nuanced, myself. Heart docs are often more about machines for CSA than OSA, especially with certain cardiac conditions. At least, that's how I understand it.
That being said, they ought to be brave enough to address A.W.A.K.E. groups and engage with other organizations, despite the ongoing studies.
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Then she should say that... Say anything other than the falsehood that the connection between OSA and heart disease isn't sufficiently proven.
j n k said:Is there a version of the job that wouldn't require me ever to answer the phone or talk to human beings face to face? :-) I tend to play devil's advocate, Mike. I'm just throwing out thoughts about what the miscommunications director might have been trying to say. We all have bad days. She may have had one. Or two. Or a week. All in all, I've had a bad month, so I can relate.
Mike said:Maybe you should be the communications director for the AHA ;-).
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Permalink Reply by Mack D Jones, MD, SAAN on
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You hit the nail on the head. I had a similar experience last year with another organization, The Alzheimer's Association. I ask for permission to pass out a flyer, "Does Sleep Apnea Cause Alzheimer's Disease?," at one of their annual meetings regarding OSA and how treatment might prevent it. I got a call declining permission to do so. This clearly non-medical person informed me that the question of an association of OSA to AD was an old one and been proven to be baseless years ago. I've come to the conclusion, as you have, that the elimination of these diseases is not in their best interests.
Steven Y. Park, MD said:The AHA is a trade organization, just like all the other medical organizations. Their main goal is to protect their member's professional and financial interests. Admitting that OSA is a major cause of heart disease would be upsetting the status quo, since all the entire heart health industry is based on medications and surgical procedures. Imagine what would happen if 90% of all sleep apnea patients were found and treated...
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