The American Diabetes Association is reaching out to gather input to help them set up their legislative priorities for 2012. Here is the message they sent us:
I am writing to you as chair of the American Diabetes Association’s Legislative Subcommittee.
Even as the Association is in the mist of the fight for this year’s state and federal legislative priorities (attached), we are beginning the process of setting our legislative priorities for 2012. Proposed priorities will be discussed at the Legislative Subcommittee this fall, followed by consideration by our Advocacy Committee, Executive Committee, and finally our Board of Directors. The goal is to be ready to hit the ground running in January of next year.
To begin that process we seek broad input from the diabetes community and would welcome your thoughts.
While some of these priorities, such as diabetes research funding, tend to remain the same from year to year, the Subcommittee meeting is also the forum to consider all new ideas on what legislative opportunities can best improve the lives of people with diabetes. We’re interested in knowing what new issues you think we should add as well as what current areas we shouldn’t pursue. As always, we need to determine how to best use our resources so that we are not spread too thin to effectively promote our priority issues.
Please let us know what issues you think the ADA Legislative Subcommittee should consider by sending an e-mail to Susan Dickens at firstname.lastname@example.org with the subject line “2012 Legislative Priorities” by September 23, 2011. Please provide as much description as you can. We will then compile all the suggestions and pass them on to the Legislative Subcommittee for their consideration.
Chair, Legislative Subcommittee
American Diabetes Association
I'm not sure I agree with the "laundry list" of stuff to shop for or getting rid of it. I think that a lot of the problems people with diabetes deal with are judicio-legislative in that insurance companies (and, of course, our largest insurance company, Medicare...) can get away with saying b******* like "you only need three strips/ day" which is not only mean spirited but to me, it seems like dangerous malpractice, given the obvious hazards of driving (not to mention LIVING...) with hypos? I still think the lack of strips and the will to direct people how to use them more effectively which is impossible if you don't have enough as you can't just "try one hour post-parandials to see what's going on..." if you don't have enough strips. This struggle ***needs*** a large organization to speak to big pharm and insurance companies and the black helicopters. I'd like to see the organization be more agressive in their approach but I think that it's a mistake to blindly oppose them because they don't exhibit the same perspective you do.
AR; enjoyed the video. Big business will never change unless you force it to.
This guy knew what he was talking about -- and then there's folks like Gov. Walker in Wisconsin -- to my mind no wonder why we have the 99% and the 1% when union-busting is the flavor of the day. People who were comfortable in their jobs in the 60s and 70s forgot what the unions had struggled for, and we're seeing the results.
Anyway, he's right in the sense that we need to UNITE and struggle for our needs and be vocal and be heard!
That was sort of my point, if we don't like the ADA message, we should get with them and change the message. "Splinter groups" running around and pointing fingers and going "the ADA sucks they don't fund [insert favorite pet study of splinter groups...] enough" or whatever isn't really going to help fight insurance companies. I am *cough cough* aware of how insurance companies fight about stuff and you have to make your case. To me, the case is made, but I'm not making the same case they are.
Cool video AR, a lot of content in just 3:24 min.
"bomb throwers, even the kids" always cracks me up.
I love to drop the D on my acoustic and play "Livin' in the Country"!
This song ?
Yup, that's the one! I am nowhere near Leo Kottke though. I saw him once, w/ Michael Hedges. Absolutely amazing...
Looks like a 12 string too boot. Cool little tune.
I just realized that this is an older post and the 2012 ADA priorities are already set but I'll throw this out there anyway. I am disappointed with the 2012 priorities as written due to the lack of focus on Type 1 issues and other issues that are important to folks here.
I would like to see a Bill of Rights for Treatment of PWD that is pushed by the ADA at the national level and the state level so that a consistent strong message is delivered. The message should be written in a way that embraces the needs of all types of PWD - one unified message.
(1) Eliminate ridiculous limits on test strips placed by insurers (including Medicare). Pay now or pay later - not paying for adequate test strips simply leads to poor control which leads to complications which costs bigger bucks than test strips. Not so hard to understand. It makes no sense that I should have to buy expensive test strips that I cannot afford out of pocket each month when I already pay expensive premiums for insurance.
(2) No PWD should be without insulin if it is essential to their care. No PWD should be forced to ration their insulin by taking half the amount needed or by skipping doses. Even with insurance, the out of pocket cost for insulin can be staggering. The cost of insulin should be subsidized or profits should be examined.
(3) No PWD should be denied a pump or continuous glucose monitor or the next generation of technology that is designed to improve the long term care of PWD, thus avoiding complications which cost big bucks.
(4) Carb gram counts should be required on all menus in all restaurants nationwide. It is not enough to have it only on the restaurant website.
(5) PWD should not be denied access to health insurance or health care regardless of income level. Insurers should not be allowed to declare people taking insulin as uninsurable. Good diabetes care should be available to all PWD, not just those who are wealthy.
The biggest thing I want to see focus on is ensuring that all diabetics have access to what they need to stay healthy. While we don't have a cure for diabetes, we do have tools that make managing the condition a pretty sure thing - test strips, pumps, CGMs, insulin. It is an absolute tragedy that there are diabetics in this country who cannot access these things simply because they don't have cash and/or insurance. We know that using these tools not only keeps PWD alive, but also increase the odds that PWD can remain complication free. I want to see some sort of national program that guarantees access to these tools if you have a diagnosis of diabetes.
I also want to see easier access to existing tools that is not dependent on typing. If a doctor says it's necessary, it should be covered by insurance. Period. There are too many people on here who don't fall neatly into one "diabetes" category or another. I think coverage for things like CGMs and pumps should be contingent upon whether someone does or does not require insulin. If you take insulin, you should be able to have access to a pump (regardless of type, IMO).
I'm all for a cure being found, but I think more energy needs to be put into ensuring that each and every person (at least in the U.S.) has access to insulin, test strip, and other currently-available technologies.
I know this is an old post, but I am going to chime in again since I only saw this post for the first time yesterday, and there have been several thoughtful and interesting new replies.
I don't think the problem is big business in and of itself. I think the problem in this case is that our government does not run this country for the benefit of people, but now they run it for big business, with big Pharma included in that. We can't fault big business for running their business with a mind to making a profit. We CAN and SHOULD blame our so called government "leaders" for leaving people without access to decent health care, which I think is a national disgrace.
My feeling about ADA is they have joined the corporate interests and do not fight for what my t1d child needs.
Here is a disgrace for you, specific to my own family. My t1d son is a senior in high school and since we are British and American, he has applied early action to one college and through the regular process in the Uk to another. We are thrilled he has been accepted to both his top choices, one here, and one there. He wants to attend college here, but one thing I just realized is if he went to the UK he would actually have access to better diabetes care, for example he could access the low glucose insulin suspend diabetes pump which is available to patients there but won't be available here for years. He is a brilliant kid, but still just a kid (only 16) and sometimes at night he sleeps through his CGM alarm when he is low, and often times I have happened to check on him at night and had to intervene since he was lower than he should have been. It scares the hell out of me that he could suffer complications or even die from going severely hypo when he is away on his own at college next year.
Where is our FDA and why does their "process" mean this tool proven safe and in beneficial use in Canada and Europe is not available here? Why can't our American kids benefit now from this wonderful technology that could protect them from one of the greatest hazards of t1d (severe hypos during sleep)?
Also he has celiac as well and I should add the laws in Europe for labeling of foods (for gf concerns) is way ahead of here too.
So really, what is going on with our government, our FDA, and others who are supposed to be looking after our interests? It is not the fault of big Pharma and test strip makers that they want to make a profit on their test strips. But ADA should work hard against this kind of thing, and if they don't then they are not my child's advocate. We have decided they are not and we send our charitable donation dollars elsewhere.
I'm sorry my son is leaning towards the university in the USA where he was admitted and not the British one, as I think living over there he really would have better access to safe gf food and better diabetes care as well. Our American leaders should be ashamed.
America did not get to where it is by allowing itself to fall behind other countries in terms of tech or other things. People here need to wake up and fight like hell to make the changes needed, most especially to get our leaders to work for us and what is good for the country, and not to fall victim to lobbying by special interests.
ADA needs to stop signing on with with questionable corporate partners and should at least consider its reputation before getting into such agreements. In the meantime I have decided they are not representing my son's interests, so they are not our charity, and therefore my family's donation dollars go elsewhere. I don't take them seriously as an advocacy organization for diabetics so I don't expect them to do much in terms of lobbying.