Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
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
Sue, I respect your opinion, but have you read the information on the NOF site about access to osteoporosis testing for Americans in jeopardy? Osteoporosis is a silent disease. Osteoporosis stands alongside heart disease and cancer as one of the three major health concerns. Isn't it better for people to learn they have osteoporosis with a dexa instead of learning due to a fracture. I was given a dexa at age 50. My doctor said I was young and should not be concerned with bone loss. What a surprise! -3 range in both hips and spine. At the time, I wasn't taking calcium, my nutrition was average, and I didn't exercise. I didn't jump on the medication. In fact, I took a year to educate myself on osteoporosis before making any decisions. But without a dexa, I may have found myself with a fracture. I'm now 62, fracture free, and very physically active. I use the dexa as a guideline; a check to evaluate what I am doing and where I can make some changes. Just alone in the US there are approximately 44 million people with osteoporosis or low bone mass. If we don't support dexa testing, we may be placing many people's health in jeopardy. Knowledge is power ... a dexa does not mean that we must agree to medication ... patients have the right to say No, but we must be aware. Of course, we can discuss where we would like to see money spent; but shouldn't we support what we have at the moment? Generations before us did not have the dexa, but we are living longer now ... and hopefully with quality of life. I don't feel my time was wasted with the survey. The survey is basic. No user name is requested. If a person wants to advocate and receive advocacy information from NOF, an email is requested; otherwise the survey is anonymous. But let's discuss what you would like to see done with funds that are directed for osteoporosis? What about the extent of disease? Please start a new discussion Topic with each one of your questions or concerns ... or if you prefer, please message me a list and I will start new discussions. I do hope that all community members will participate in the NOF survey. Thank you. Sandi
Sue, I have to toss my hat in with Sandi on this one. I think NOF is trying to retain the DXA coverage in Medicare, which I believe Congress was thinking of reducing or limiting. Folks in Washington often aren't looking out for us at all. DXA is one tool, and is the primary one for assessing bone density as far as I know. Until we have a way to measure bone quality, DXA is about all there is, no?
Tom
Hi Sue. My initial reaction to your comment was to agree - it wasn't much of a survey when you consider the impact of osteoporosis. At this time, Medicare reimbursement for DEXA isn't much of a concern for me individually. However, when I think about the number of individuals in rural areas where access to a DEXA is nowhere to be found in their communities, and the miles they have to travel to find one, then I support any and all advocacy for this - however scant it may be.
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!!!
Hi everyone. I so glad to see the thoughtful replies. I didn't find it personnally beneficial, and I find it disconcerting when I don't have a choice about giving my email address out. However, I am in sympathy with the need to fund more machines and get them into more convenient locations. I wish the intro to the survey would have been more explicit about their intent.
I took it, also, Betty. I did find it a bit short and incomplete. Most of the members of this site would certainly have some qualifying remarks about the choices on the survey. Be that as it may, I did sign on as an advocate. I am very conversant with my Representative and visit his office confidently. I helped get him elected so I know his mind and he is on our side. There was an item on the table at Medicare to limit access to DEXA. They wondered if it was necessary. After all, it is the 'Little Old Ladies' disease but that idea was shelved because of opposition from people like us, AARP and NOF.
Certainly, Amgen is going to sell the machines. That did put me off. I will go anywhere to get a GOOD DEXA! I won't go to the imaging company a mile away from my house because he has misdiagnosed three (!) fractures. My chiropractor caught them and sent me to the Hospital for Special Surgery where they also saw the breaks. They were from an automobile accident and not from osteo. We don't just want a machine showing up in a parking lot, we need experienced people who can correctly read the results.
I believe there is a discussion somewhere on this website where your DEXA's should be done by the same technician on the same machine as the year or two before. Otherwise, the results can be crazily different and confusing.
My spine and hips have been -1.1 for fifteen years. I felt there was something wrong in my arms. It took me three years to convince my doctor to write a prescription for a forearm test on my left arm. After finally obtaining it, the technician refused to do it because I am left handed. She said that would be my most powerful arm. Finally, the doctor in charge of the nuclear medicine lab said to take both arms. (Duh!) My right arm was -2.7 and my left arm was -3.2! I got that dreaded telephone call: "You have osteoporosis." But it took three years just to get that.
Now I want a full body DEXA to find out where the disease might be in other places. I protect my left arm with a splint type of brace if I am doing strenuous work so it won't snap. Both of my doctors agree that it is a smart thing to do. I will pay for a full DEXA but I hope that I can get the script for it.
A simple X-ray can detect osteo, also, but by the time it picks it up they say that it is too late.
I believe someone in Washington is saying that we need 'quality and control' in our health care system and this is just one example of it.
I advocate for access to DEXA's that are operated with expertise by doctors and their technicians.
juliemarie
Under the obama so called health care plan, diagnostic tests will be elimanated, along with oestro treatment
Bonebuilder, you didn't have to share your email address on the survey. The email address is only for people that want to be notified by NOF for advocacy information. Email information is not required on the survey.
I tried to submit it without my email address and it wouldn't be submitted!
Hello bonebuilder, did you select any of the advocacy options? If so, the advocacy options will require an email address for the survey to be accepted. It is my understanding that if a community member does not check an advocacy option, the survey will go through without an email address. Thanks. Sandi
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?
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 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.
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 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!!!
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 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.
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
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.
Add to the discussion