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And found it remarkably not helpful - I'm assuming that they are planning on using the information to encourage legislators to spend more money on DEXA machines, which I really don't think is all that much of a problem.
There are so many other things we could do with money - more machines isn't the issue - they didn't even ask about extent of disease, if there were other conditions involved, etc.
Feel like my time was wasted.
Sue
Exercise Heart disease Cancer Surgery Forteo Fractures Reclast Osteopenia Actonel Osteoporosis Evista
Susan, I can assure you that NOF does not share email information with pharmaceutical companies. Any email address that was shared with the survey was given to NOF by Inspire only for NOF contact with you for advocacy work. Inspire is not sharing email addresses with pharmaceutical companies. I'm the volunteer moderator and I am not receiving emails from any pharmaceutical companies and my name is out there with my advocacy work. I don't know why you are receiving the emails, but it isn't due to the survey, NOF or Inspire. Sandi
I have now received emails from Amgen and Reclast. I wonder how I got on their mailing lists? By taking the Amgen survey, did I give them permission to send me emails and sell my email address? Or did NOF do that?
Just curious.
Susan
Sorry to go off track a bit here...
Amgen is in the process of trying to get a new osteoporosis drug introduced.
Would it not be of use to them to have many more machines available for "diagnosing" osteoporosis (and there are plenty of questions about what that exactly means - many people with it never break a bone) and therefore having their drug prescribed?
The French don't classifying you has having osteo until you break a bone.
Different way of thinking but it is worthwhile to compare stats btwn France and the US in terms fractures btwn women of a various ages on drugs vs. those not...
It is kinda like Clorox buying out Brita.
HI Windblown,
My next dxa will be in Nov. I'm feeling much less vulnerable after moving myself into osteopenia by last Nov thanks to Forteo. There was an article in the NY Times yesterday about denosumab getting approval for the treatment of osteoporosis. I believe it's an injection that lasts for 6 months. I'm not sure. It's not been approved for cancer patients who develop osteoporosis. They say it will be expensive and the bisphosphonates will be preferred due to cost. Anyone else read anything about it?
Hi Blues, I'm doing fine, although I haven't had another dxa yet. I need to schedule that but haven't had the time since I have to travel also to get one.
I'm interested in denosumab too which they're saying may be marketed under the name Prolia. I believe the advisory panel is meeting today to decide on it, so we'll see what happens. I'm still on Evista and just hope it's maintaining my scores but won't know for sure until I get the dxa.
I hope you continue to do well on Forteo and all the luck for Nov if that's when you have another dxa.
Hi Windblown,
Thanks for the link. I sent e mails to my congressman and 2 senators. It's important to get our voices heard above the din and do what we can. I hope you are doing well after these months off Forteo. Have you had a dexa yet? I am on until November. My endo recommended actonel, but I am interested in denusomab. I just am uncomfortable with bisphosphonates. Back to amgen, who makes denusomab. I hope that we have some action on health care reform soon. Because I still work I have to use the health insurance of my job and I've lost all my local hopitals and I can't use medicare. I can still get dexas once a year.
Hi Raven, how are you? It's been a while since we've talked. I would also like to know where the statement about eliminating dxa's came from. And you're right Amgen is a biotech co that makes drugs not dxa scanners.
I took the NOF survey on the "Medicare Fracture Prevention and Osteoporosis Testing Act of 2009," and didn't find any part of it to be annoying etc. I've been contacting my representatives and congress reps about the dxa cut back's because I hope they don't go through. You can contact your local representative congress person by going to and filling out the form at the ISCD (Inter Soc of Clinical Densitometry) here:
http://votervoice.net/Core.aspx?AID=981&Screen=alert&IssueId=18883&SessionI D=%24AID%3d981%3aSITEID%3d-1%3aVV_CULTURE%3den-us%3aTARGETID%3d-1%3aAPP%3dG AC%24.
It's very simple doesn't take much time and they'll send more updates to you as new issues arise. We need the dxa because that's all we have, and if someone isn't fond of them then just don't utilize it. For those of us who want the screening we need to voice our concerns or we will be paying more if you are a Medicare recipient.
I did the survey and I live an a rural area, although I 'm not far from dexa machines. I understand what it's like to have to drive for more than an hour to get to a dr.
I recently was informed by my insurance company that I can no longer use my local hospital for anything but emergency service and then they will have to send me by ambulance to a hospital one and one half hours away because the insurance company isn't happy with hospital reimbursement. I think we need to get rid of insurance companies. Some one posted a statement saying the Obama health plan would no longer cover DEXA'S. Can you please show us who said it and when and where it was stated? Also Amgen makes Denosumab. I didn't know they made DEXA machines.
Dear Sandi:
I read your post and you put a whole different light on the subject. From what you say there "DXA is better that nothing" if I can paraphrse and shorten. But the Amgen survey seem to be oriented to selling more machines so people wouldn't have to travel as far as opposed to getting legislators to have Medicare support DXA testing. What has Amgen got to do with this survey and why are they so interested ? It appears to me to be way off base if it is being used to drum up support.
You claim the Kasier study shows it is cheaper to use DXA than to pay for fractures down the line. Not seen the study so I can't comment. The question then becomes how do we prevent people from going "ballistic" when they get a DXA and start swallowing all those pills that have unknown side effects. I still think we need to improve the FRAX test as it shows that DXA isn't the final word on fracturability.
I have to agree with you that DXA has a use as a wakeup call but it isn't the Gold Standard and doctors need to make patients aware of this. The drug companies are too strong for us to get the FRAX information used by doctors with their patients.
How about drumming up legislative support that requires FRAX when getting your DXA and gathering better parameters to be used in an improved FRAX? I could really support that.
I should have addressed Sue by her screen name -- "I Can Do This." I'm the one who thought it was important that we all know to whom we and others are talking!
Hi Sue -- I was completely in agreement with you until I considered the remarks made by the others as to insurance coverage and availability of DEXA scans. That really does cast a different light on the survey, and changed my mind.
For those of you with a sense of humor (or who want to seriously follow the health care reform issue), this website says that there is currently about a 37% chance that "a federal government run health insurance plan" will "be approved before December 31, 2009." http://www.intrade.com/ Note that the odds keep changing every day so that 37% number will not stay the same.
Hello Eamenard, did you read my post in discussion : "Survey Discussion Reply" about Kaiser? I hope you will read because I feel if we don't support what we now have, we will lose ground. Yes, I would definitely like to have an advanced machine; and hopefully a machine that gives us more information will be in near future, but if we don't support NOF on this subject, how can we expect to advance our cause? Sandi
I think that money should be spent on geting a new machine or process that identifies those who have a high risk of fracture. As I recall, only 1 out of 100 benefit from this help(DXA) while the other 99 jump thru the hoops of medicine, excercise, diet, etc. to avoid a possible fracture. Now everything you do for a better lifesyle is to the good and so DXA wakes a lot of people up. But it is touted as the predictor of future fractures which it isn't. It seems to be a very poor indicator of bone quality.
FRAX is a start but the data wasn't there to include what are thought to be factors to nonimpact fractures. A better model would go a long way but someone has to be funded to do this work. I don't think that the drug companies would want to lose 99% of their market but I would think the government should be interested so they wouldn't spend our money on a rather useless DXA tests.
So if you write your congress person, tell them we don't need more DXA machines. We need a more accurate machine to measure bone quality or a statistical model that has better than 1% predicability which we get with DXA.
Sorry I posted the same thing twice. RM And bonebuilder. I assume you are both urbanites. There are many people in rural areas that cannot get to an urban area for these procedures. These are not "trucks that show up in parking lots" They are simply mobile health screening facilities that are sent out,owned and operated by our county hospital. And before you can assume anything about me ( RM ) no I don't need there services as I am fortunate to have people who care about me to help me get around the city. Otherwise I get around fine. The city,to me, is a scarey place. A lot of these people are just very elderly.
I answered it too. Didn't find it a waste of time. It seemed to me they were trying to ascertain how available and what kind of distance you had to travel to get one. Myself, living in the country, but about 40 miles from a large metro area, find that I have to travel for just about everything. I'm used to it, so it's no big deal except if it it's somewhere unfamiliar to me I need some to take me. The city, driving by myself, gives me panic attacks. Now out here we have things like mammograms offered at certain times in bus type med. centers. I thought maybe that was what they were thinking of. I didn't know medicare was talking about dropping them. What a shame!!!
rmchavin, may I ask do you have osteopenia/osteoporosis or are you a caretaker for a friend/family member with osteopenia/osteoporosis?
Thank you. Sandi
I agree with contacting lawmakers. We need a concerted effort to make our opinions known. My insurance will cover a DEXA for only 1 area - my doc and I choose between the hip and the back each year. This seems ridiculous! Also I agree that having trucks show up in parking lots leaves too much room for mis-readings. I advocate more money for more machines and training to read results. I just heard that "someone" has completed studies on prevention of costly medical care due to increased drug benefits. Anyone know of a study about less medical care as a result of increased DEXA use? This is the kind of info that could help our cause.
Surveys and polls done for the purpose of affecting legislation are usually ignored by lawmakers. The reason is that there are hundreds of different charities and PACs doing hundreds of polls every month for the main purpose of trying to influence legislation and their objectivity is questioned by lawmakers. Therefore, it might be better for people concerned about Medicare cuts to honestly communicate to various lawmakers why osteoporosis screening would be desireable for the long term health and happiness of the general public.
I believe it is important to participate in the survey. I think it is vital to assure that the dexa scans are available in all areas, One thing I wish had been on the survey was the stipulation that Dexas can be given yearly. My health care providers insist that my insurance will no longer cover yearly dexa scans. I've lost valuable ground because I had to wait two years to see if treatments were working - they weren't. Do others have this issue with your insurance coverage?
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