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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 candace wells on
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Unfortunately, I have Kaiser. The DME Department is who I was having all the trouble with in getting themt o fax my information to Apria Healthcare. The woman I spoke with was very snotty and had an attitude and clearly did not want to fax my information to the appropriate people because I was payjhg out of pocket.
j n k said:Candace,
Have you asked for help from your doctor's office staff and DME staff? Part of what you pay the doctors and the DME is for their insurance staff to assist you in dealing with your insurance people. That is how they keep your business. If they are unable, or unwilling to help you, perhaps another doctor or DME has office staff who can coach you better?
-jeff
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Candice,
There's always the easy way out. Tell the insurance company that if they do NOT cover it, you will see them in court. I would put this in writing and give them a definite "drop dead" date, after which you will proceed with a court filing. This amount would only be small claims. All you'd need is the policy, a bit of practice to get your "story" down and let the judge take it from there.
Carl
candace wells said:Unfortunately, I have Kaiser. The DME Department is who I was having all the trouble with in getting themt o fax my information to Apria Healthcare. The woman I spoke with was very snotty and had an attitude and clearly did not want to fax my information to the appropriate people because I was payjhg out of pocket.
j n k said:Candace,
Have you asked for help from your doctor's office staff and DME staff? Part of what you pay the doctors and the DME is for their insurance staff to assist you in dealing with your insurance people. That is how they keep your business. If they are unable, or unwilling to help you, perhaps another doctor or DME has office staff who can coach you better?
-jeff
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Thanks, I hadn't thought of that.
Carl said:Candice,
There's always the easy way out. Tell the insurance company that if they do NOT cover it, you will see them in court. I would put this in writing and give them a definite "drop dead" date, after which you will proceed with a court filing. This amount would only be small claims. All you'd need is the policy, a bit of practice to get your "story" down and let the judge take it from there.
Carl
candace wells said:Unfortunately, I have Kaiser. The DME Department is who I was having all the trouble with in getting themt o fax my information to Apria Healthcare. The woman I spoke with was very snotty and had an attitude and clearly did not want to fax my information to the appropriate people because I was payjhg out of pocket.
j n k said:Candace,
Have you asked for help from your doctor's office staff and DME staff? Part of what you pay the doctors and the DME is for their insurance staff to assist you in dealing with your insurance people. That is how they keep your business. If they are unable, or unwilling to help you, perhaps another doctor or DME has office staff who can coach you better?
-jeff
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Permalink Reply by susan mccord on
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This is a FINE example of an official public service announcement!!!!! Blea-a--a-a-a--a-a...........
McCord
Mary Z said:Here is a copy of the prompt reply from Ms. Wilkins to my letter to her regarding her lask of willingess to work with NYC AWAKE.
"Dear Ms. Zimlich,
In 2008, the AHA issued a statement calling for further research on the connection between sleep apnea and cardiovascular disease. The fact that AHA published a scientific statement on OSA is testament to the growing body of research on the topic. There are many research topics that the AHA cannot take a position on due to a lack of definitive evidence. However, this does not mean that AHA has a "pro" or "con" position on OSA and CVD or any other areas that require more research. Additional research will allow the AHA to provide clear direction to healthcare providers and patients about specific risks, treatments and benefits. We will continue to support meritorious science in this arena; and, as the science continues to emerge on this front, we will continue to inform the public and the medical community.
Sincerely,
Cathy Wilkins
Catherine M. Wilkins
Vice President, Marketing & Communications
Founders Affiliate
American Heart Association
122 East 42nd Street, 18th Fl.
New York, NY 10168
212.878.5930
Fax: 212.878.5960
cathy.wilkins@heart.org"
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I could NOT have said it any better, Ed. You've nailed it. I've been at the Mayo Heart Clinic. I know the Director of Women's Heart Health there. Anyone who wants to fly in the face of the research they've done, and continue to do, is just about as far out of the loop as it gets.
You're absolutely right about the need to raise the public's consciousness being best served by conjoined efforts to work together, not against each other. There are, indeed, many heart health organizations that would gladly work with A.W.A.K.E/Manhattan--it would be a powerful beginning for both HD and OSA!!
Both causes need all the voices that can be rounded up!!!!!
McCord :-)
Edward Grandi said:Michael,
I realize I am late to the discussion on this issue and I want to commend everyone for the research they have done on finding the published words/slides from the AHA itself discussing the relationship between OSA and CVD. It is not like they are unaware of the connection.
I read with great interest the article in Circulation about OSA. I will note that among those on the writing committee for the article were Virend Somers a Mayo Clinic cardiologist who has dedicated much of his career to exploring the relationship between OSA and heart disease. Also on the list are David White, one of grand "old" men of sleep medicine, who is now the chief medical officer for Philips/Respironics; Carl Hunt past director of the National Center on Sleep Disorders Research at the NIH and Terry Young the lead author of the 1993 NEJM article, which still stands as the only epidemiology study done on sleep apnea. The AHA article was penned with the input of some who are very much involved in OSA research, diagnosis and treatment.
When I got the end of the article that includes the challenges ahead, which you quoted from the slide set, I saw this throwing down the gauntlet to the broader sleep medicine community to step up and do more. The laundry list is long and daunting, and slowly, too slowly for some of us, progress is being made to address those issues. Let me say that the American Sleep Apnea Association is aware of the "to do" list - in fact it is pinned to my desk - so I am reminded of it frequently and, we in our own way are seeking to move the needle on the ones where we can.
That said, I would like to comment on Ms. Wilkins' letter and say too bad for her that she is missing an opportunity to raise the visibility of her organization, something a nonprofit big or small should seek to do, by partnering with NYC A.W.A.K.E. to raise awareness about heart disease and in this case OSA. It is her loss not ours. I suspect there are other related groups that would welcome the opportunity to participate in a meeting.
The ASAA is reaching out to a number of organizations in the heart disease space through our involvement with the National Forum on Heart Disease and Stroke Prevention - http://hearthealthystrokefree.org - as way to bridge the disease silos that exist and work together to mitigate/prevent injury, disability and death from untreated OSA - a gateway to many other co-morbid conditions. My goal is that in the near future, organizations like the AHA will seek out support groups in the A.W.A.K.E. Network to work together to educate and raise awareness.
Michael thank you for the outstanding work you do to facilitate education and support sleep apnea patients in the Big Apple. Your commitment is a spur to me to reach further and do more everyday.
Ed Grandi
Executive Director
American Sleep Apnea Association
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Hi Mary!! Gotta say I'm lmao --I smell multiple copies!!!!! Don'cha love form letters sent in response to someone's true concern with an issue?.........oy vey......
Susan McCord :-p
susan mccord said:This is a FINE example of an official public service announcement!!!!! Blea-a--a-a-a--a-a...........
McCord
Mary Z said:Here is a copy of the prompt reply from Ms. Wilkins to my letter to her regarding her lask of willingess to work with NYC AWAKE.
"Dear Ms. Zimlich,
In 2008, the AHA issued a statement calling for further research on the connection between sleep apnea and cardiovascular disease. The fact that AHA published a scientific statement on OSA is testament to the growing body of research on the topic. There are many research topics that the AHA cannot take a position on due to a lack of definitive evidence. However, this does not mean that AHA has a "pro" or "con" position on OSA and CVD or any other areas that require more research. Additional research will allow the AHA to provide clear direction to healthcare providers and patients about specific risks, treatments and benefits. We will continue to support meritorious science in this arena; and, as the science continues to emerge on this front, we will continue to inform the public and the medical community.
Sincerely,
Cathy Wilkins
Catherine M. Wilkins
Vice President, Marketing & Communications
Founders Affiliate
American Heart Association
122 East 42nd Street, 18th Fl.
New York, NY 10168
212.878.5930
Fax: 212.878.5960
cathy.wilkins@heart.org"
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Permalink Reply by Mary Z on
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No wonder it was so prompt! LOL!
susan mccord said:Hi Mary!! Gotta say I'm lmao --I smell multiple copies!!!!! Don'cha love form letters sent in response to someone's true concern with an issue?.........oy vey......
Susan McCord
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For the record I've used CPAP for OSA for over 10 years. I'm 5' 9" tall and weigh 241lbs with a 17.5" collar size.
I am a typical OSA sufferer. I am overweight; significantly so. If there is a normal weight/slim sufferer out there, sorry if I've overlooked you.
How is anybody supposed to separate out the effects of obesity on the heart - which are documented - from those caused by OSA?
As a scientific body, the AHA are quite right to say that the research isn't there/hasn't been done, if that is the case.
We OSAers would be better off talking to WeightWatchers and leaving the AHA to their "proper" work. OSA isn't an illness or a disease, it's a lifestyle failing.
If we need help from the medical community it's in getting our weight under control.
We could, of course, just eat a little less and exercise a little more and leave the doctors to look after sick people. But then that's blaming ourselves...
Basically, I don't think it's helpful to see OSA as a medical condition. A personal trainer would be more relevant - and cheaper - than a physician, heart surgeon etc.
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Speak for yourself, WhiteMan. My name is Tonto. I'm 5' 3", weigh 115 lbs, am female and 68 years old. Oh - and I have OSA.
So much for the "typical" obstructive sleep apnean.
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Permalink Reply by Clueless in Redwood Shores on
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I was overweight not obese when diagnosed but I believe I had OSA since I was a skinny teen (even at the end of college I was 6'4 and 155 lbs). In high school I was getting more than 8 hours sleep per night but was sent to the infirmary for "inappropriate drowsiness" in class. Throughout college I prided myself on the ability to fall asleep anywhere, at any time. In law school, even as my weight slowly rose, my first year Constitutional Law Professor complimented / embarassed me at a party by saying that I always appeared to be asleep in class but after a discussion had floundered long enough he would say -- okay, somebody wake "Clueless" (name withheld to protect the guilty) up -- and I would respond with the correct answer.
Is it not just as logical a hypothesis that OSA leads to weight gain as it is to assume that weight gain leads to OSA?
Brian Smith said:For the record I've used CPAP for OSA for over 10 years. I'm 5' 9" tall and weigh 241lbs with a 17.5" collar size.
I am a typical OSA sufferer. I am overweight; significantly so. If there is a normal weight/slim sufferer out there, sorry if I've overlooked you. How is anybody supposed to separate out the effects of obesity on the heart - which are documented - from those caused by OSA?
As a scientific body, the AHA are quite right to say that the research isn't there/hasn't been done, if that is the case.
We OSAers would be better off talking to WeightWatchers and leaving the AHA to their "proper" work. OSA isn't an illness or a disease, it's a lifestyle failing.
If we need help from the medical community it's in getting our weight under control.
We could, of course, just eat a little less and exercise a little more and leave the doctors to look after sick people. But then that's blaming ourselves...
Basically, I don't think it's helpful to see OSA as a medical condition. A personal trainer would be more relevant - and cheaper - than a physician, heart surgeon etc.
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Thank you, I agree. What is the reason smaller people have Apnea. Also, why is it that if you are already skinny and stick your finger down your throat to throw up what you just ate, that makes it a disorder, but if you are fat and you overeat, you are just fat with no self control?
Judy said:Speak for yourself, WhiteMan. My name is Tonto. I'm 5' 3", weigh 115 lbs, am female and 68 years old. Oh - and I have OSA.
So much for the "typical" obstructive sleep apnean.
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Permalink Reply by Mike on
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I'm pretty slim myself -- 6 feet tall, 180 lbs. and i have OSA. osa is largely due to how narrow your jaw is.
Brian Smith said:For the record I've used CPAP for OSA for over 10 years. I'm 5' 9" tall and weigh 241lbs with a 17.5" collar size.
I am a typical OSA sufferer. I am overweight; significantly so. If there is a normal weight/slim sufferer out there, sorry if I've overlooked you.
How is anybody supposed to separate out the effects of obesity on the heart - which are documented - from those caused by OSA?
As a scientific body, the AHA are quite right to say that the research isn't there/hasn't been done, if that is the case.
We OSAers would be better off talking to WeightWatchers and leaving the AHA to their "proper" work. OSA isn't an illness or a disease, it's a lifestyle failing.
If we need help from the medical community it's in getting our weight under control.
We could, of course, just eat a little less and exercise a little more and leave the doctors to look after sick people. But then that's blaming ourselves...
Basically, I don't think it's helpful to see OSA as a medical condition. A personal trainer would be more relevant - and cheaper - than a physician, heart surgeon etc.
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