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 sdickens@diabetes.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.
Susan Dickens,
As a participant in the tuDiabetes.org diabetes forum, I’ve seen countless stories of people who have to neglect their diabetes care for lack of insurance and/or money, this can be a very expensive disease to treat properly. Most people with a job and insurance are only a pink slip away from being in this situation themselves. This is immediately life threatening for T1’s and extremely damaging in the longer term for T2’s. Besides the morality of a country as wealthy as we are letting this continue, I firmly believe it is extremely foolish of us to squander our human potential in this way.
I’m going to send this directly to Susan Dickens, but repeating it here:
I would like to see a push for mandates for insurance funding for adequate and ongoing diabetes education for ALL PWDs in ALL states. Some states have none, but my state, Nevada, merely requires education while not specifying extent of services. So I got a lifetime maximum benefit of $50 which I used up in my first hour of learning how to use a meter 20 years ago. A lot has changed since then, and if not for the Diabetes Online Community (DOC) I would never have known what to advocate for in my own treatment. An ounce of prevention is worth a pound of cure, but PWDs are being denied that because of ignorance and stupidity on the part of state legislatures and insurance companies.
I would also like to see advocacy for coverage of insulin pumps in those insulin-requiring Type 2’s who would like to use them, both in the insurance-covered younger population, and also in the Medicare population. The C-peptide should not be a requirement. When you need insulin, you need it, and proper use of the pump really helps mitigate highs and lows that are expensive to treat when they require paramedics and hospitalization.
And, of course, I would like to see better coverage of diabetes treatment for those who cannot afford it, whether child or adult. If Medicare can cover younger people with kidney disease, why can’t they cover those with diabetes, especially the ones who need expensive pills or insulin?
Remove the public health diabetes nutrition recommendations away from the clutches of corporate corruption. The current diabetic nutrition recommendations are counter to the current science and although they assure continued revenue to pharmaceutical and agriculture companies, they have harmed thousands (perhaps millions) of innocent people with diabetes. Congress should commission the IOM (or equivalent independent body) to establish a standing panel of leading science experts to consider this matter. The members of the panel shall be selected as an appropriate sample from all the the stakeholder professional scientific and technical societies involved in nutrition science. Members of the panel should “prove” they are free from influence and have no conflicts of interest. The deliberations should be open to the public.
Require carbohydrate gram indication on restaurant menus.
At a later date you can go for fat and protein.
Type 1 diabetics need to know more than “no sugar added”. That is a deceptive labelling when the carbohydrate grams are what is important to figuring a dose of insulin.
ADA needs to put pressure on Medicaid to allow more strips both for Type 1s and Type 2s. If they are concerned about the cost of the strips they should put the pressure where it belongs, on the Pharmaceutical companies who manufacture the testing strips for pennies and charge a dollar a strip, gouging the diabetic community. Guidelines need to be raised so Type 2s can test six to eight times minimum if they need to and Type 1s at least up to 10 times a day, 12 would be better, more for those who exercise or are athletes. Next FDA needs to immediately allow the VEO and other low glucose suspend pumps to be approved in the US. Too many deaths due to low blood sugars overnight. Ten that I have read about in the past year; I’m sure there are many, many more. These pumps are safe, regardless of the fact that one computer geek hacked his pump and taught numerous others how to do it. FDA should work on this issue but it should not hold up approval on this pump. Pumps should be available to all who wish to use them. Insulin and other diabetic supplies should be SUBSIDIZED by the government.
I think education is a 2-way street and we need to educate our providers also. I don’t think that training should be optional for medical people, it should be required.
I agree with BSC on the nutritional recommendations. I think a lot of times these people are not looking at studies with PWDs but studies of the general population and then push those theories on us.
I would like to see more programs aimed at the African American and Latino Communities. I find these communities are completely under served and underfunded with it comes to chronic diseases. The ADA is completely non existent in the Los Angeles area in these communities.
I wish the ADA would clean up their own house before trying to figure out legislative priorities. ADA downplays the prevalence of Type 1 diabetes and ignores the largest group of new-onset Type 1s, those with slow onset Type 1 diabetes (often called LADA or latent autoimmune diabetes in adults). Consistently across many, many research studies that perform antibody testing (GAD, ICA, IA-2; indicative of Type 1 autoimmune diabetes), researchers find that about 10% of people who have been diagnosed as having Type 2 diabetes are antibody positive, have been misdiagnosed (a very dangerous situation), and in fact have Type 1 diabetes. Yet ADA still insists on saying that Type 1 diabetes only represents 5% of the total diabetes population and that Type 1 primarily affects children and young adults. By ignoring the largest population of Type 1 diabetics–indeed by promoting misdiagnosis of this group–ADA does a terrible disservice to those with Type 1 autoimmune diabetes. ADA, get your own house in order.
Alan, I think Christalyn mentioned the “dirty foreign kids” ads because she thinks all people in other countries should not have to humble themselves with demeaning ads in order to get the insulin they need to survive. The fact that the ads appear here in the US is because they CAN’T get their needs met in their own countries – many of them would have to choose between food and insulin, and that’s not a choice! The ads were not meant to insult people in other countries (or here, either), but to tug on people’s heartstrings in order to get help. Sick, emotional advertising, but most people don’t respond to mere facts – there has to be an emotional component, even if it is pity.
I am not trying to offend anybody but I don’t mince my words. I think it is a publicity stunt to use children to get people’s sympathy for something that affects children and adults alike. (Much like the children singing about Obama during the election season 2 years ago).
Then I think it is horrible to use foreign children from under developed countries that look dirty or half clothed for more sympathy to open up our purses. How do I know if they weren’t staged to look that way or if they are really diabetic sufferers? When was the last time you saw children from a developed country being used in an advertisement for a chronic disease? There are more cases of T1 in Scandinavian countries why aren’t they using these kids to help with funding for research and insulin? I find this very sad their story is not widely known.
I am sure you get my point. What I want is a real commercial with normal humans mixed with a few folks from underdeveloped countries (adults and children alike) with their experiences.
#1 - funding for diabetes research, emphasis on T1 cure and Artificial Pancreas to market. #2 - Provide ALL T1D’s with access to medical supplies such as Insulin and testing strips at a minimum medical necessity level to maintain control to stay alive w/o causing complications. Maybe even legislation to require insurers to provide a minimum level also. #3 - funding and requirement for screening all children for D at odd years (1, 3, 5, etc).
I so get you. I’m so sick of Wilford Brimley selling diabetes supplies. It contributes to the myth that everyone with diabetes is older and overweight. They really need to replace Wilford.
Make sure the policies and benefits of the Medicare system are equiped to handle the needs of PWD Type 1. It seems that they are all geared for PWD Type 2. When a type 1 enters the Medicare system they shouldn't have to fight to get the benefits they need and have used for years to manage the disease. It should be a smooth transition.
We calculate insulin doses, a hormone that can and does kill, several times per day based on blood glucose meters built to the insufficient current standard: readings must fall within +/- 15 mg/dl if blood glucose is <= 75 mg/dl. For BGs>75 mg/dl then accurate is anything within +/- 20%.
This standard is far to low and should be tightened.
