What would You Like to See as ADA Priorities in 2013?

#1

American Diabetes Association is beginning the process of setting legislative priorities for 2013, and would like community input! Proposed priorities will be discussed at the ADA Legislative Subcommittee meeting in October, followed by consideration by their Advocacy Committee, Executive Committee, and finally the Board of Directors.

Some of these priorities, such as diabetes research funding, tend to remain the same from year to year, but ADA will also consider new ideas on what legislative opportunities can best improve the lives of people with diabetes. They’re interested in knowing what new issues you think they should add, as well as what current areas they shouldn’t pursue. Below are the current priorities and an explanation of how the ADA priorities are reached. Add your 2 cents to the discussion and your input will be forwarded to ADA!

Development of ADA Federal and State Legislative Priorities

ADA 2012 Legislative Priorities

#2

I think that barriers to treatment need to be attacked. If a T2 person wants a pump, their insurer should not be able to say "oh, not for T2 patients". If an active T1 (*cough cough*) needs or feels that they should be provided maybe 14-15 strips/ day, they should not be told "we only provide 7" or "we only provide 4 because that's what Medicare does". Adequate testing and repeat testing for people with LADA potential to cut the number of people misdiagnosed and mistreated because their doctors aren't in a hurry would be nice too.

I know it's a health care crisis and all that but the wheeling and dealing that makes an insurer say to timmymac "sorry, you need to change insulins because the Novolog dealer took us golfing at a nicer place..." [I can only imagine...] is totally ridiculous.

#3

Well said!

#4

You should be able to buy any sort of insulin you want without a prescription. Also, unlimited refills for T1's would makes sense.

#5

How close do ADA and CDA work together on major issues such as the Clinical Practice Guide Lines and Advocacy in particular ? Why re-invent the ( costly) wheel even if both countries are different from a National Health Care point of view ;there must be some similarities ?? Maybe even include the Kidney Foundation and Heart and Stroke ?? ...just talking out loud ...I maybe totally off .

#6

Here is my suggestion.

Establish a government organization within the NIH/NIDDK to establish appropriate nutrition guidance for people with diabetes. The ADA and the AADE are corrupted by the medical and food industry and cannot be trusted to establish public health policy on nutrition. Do not ask the USDA to establish public health nutrition policy, they are also corrupted by the food industry.

Members of panels that establish public health policy for diabetes must adhere to a strict ethical code. Congress should mandate minimum standards on conflicts of interest. The ADA is one of the worst offenders (see this study) and has a conflict of interest policy that protects the association, but allows actual representatives of the medical, drug and food industry to establish nutrition standards. Congress should require that these sorts of public health panels adhere to strict conflict of interest standards and require full disclosure.

ps. I'm not going to hold my breath.

#7

Yeah, doing things is not really a recipe for elective success these days. :-(

#8

There's only one overarching goal I want to see the ADA address - improve access to effective treatment. Some aspects of this include:

  • Ensuring that every T1 has access to insulin and test strips, regardless of insurance status. No T1 (or anyone dependent on insulin for survival) should struggle to find access to these basic things that they need to stay alive.
  • Access to test strips. Too many people are denied access to test strips at all or told they can only get a certain number of test strips. This MUST STOP. Someone recently posted on this site about his T1 brother being found unconscious. His brother had previously been limited to only 4 test strips per day. This is criminal. No T1 can effectively manage this condition on 4 test strips a day. Test strips are necessary for ensuring our health and safety as well as the health and safety of those around us. I do not drive my car unless I test because I know I could easily kill someone else. However, because my insurance limits me to 8 strips per day, this means I have to pay out-of-pocket for extras.
  • Improve access to pumps and the technologies that exist NOW. I am tired of all the hype around the artificial pancreas project. There are technologies available NOW that can improve outcomes for people with diabetes (both T1 and T2). If someone can benefit from a pump, they should have access to it. Period. My pump has been life-changing in terms of how I feel, my management, and my outlook on life. And it's the little things, like feeling comfortable going out with a group of coworkers for lunch or being able to be spontaneously active without having to worry about going low. Before we invest in new technologies, we need to make sure that everyone has access to the current technologies.
  • Easier access to insulin. When your life literally depends on something so drastically, I don't think a prescription should be needed. Over time, they made R and NPH insulins available without a prescription and I think the same should be done for Novolog, humalog, lantus, and levemir. Why do these insulins still require an Rx but not r and NPH? I want to know that, in a pinch, I can get the insulin I need to stay alive without having to call emergency lines or visit an ER.
  • Do more to help expand the market for pumps and CGMs. There seems to be more pumps than ever on the market and this is a great thing IMO. It needs to continue.
#9

I whole-heartedly agree with MBP's list of priorities as well as the overarching goal of improving access to effective treatment. I would add the caveat that this access should be available to those of all income levels, not just the wealthiest Americans.

I read an article this week that stated that the lowest earning 50% of Americans are responsible for 1% of the wealth of this country. So how good do you think the care for the PWD in that 50% are?

I would add to MBP's list:

~The ADA should make their biggest legislative priority developing, enacting, and getting funded at the federal and state levels a "PWD Bill of Rights" so to speak.

~Include coverage for CGMs such as Dexcom and tubeless pumps such as OmniPod in Medicare coverage. There are many who are currently on this technology but when they retire, they will be forced to give up access to the best tools technology currently has to offer.

~Test strips should not be limited to any PWD, insurance or no insurance, and should be available at an over the counter cost that is much less. I frequently have to pay out of pocket for extra test strips too....this is in addition to the insurance premiums and co-pays that I'm already paying. When I retire, I won't have the financial ability to continue to do this.

The current ADA Legislative Priorities are severely lacking in ensuring that all PWD have access to effective treatment. People are suffering needlessly because they don't have access to tools that have already been developed. Get those tools into the hands of the people who need them.

#10

Excellent additions. I really like the PWD Bill of Rights idea.

#11

Ditto on the Pod coverage with Medicare!!

#12

ADA needs to clean up its own house first. ADA has been one of the primary opponents of getting correct diagnoses for adult-onset Type 1s and including adult-onset Type 1s in the statistics for Type 1 diabetes (ADA's website still says, "diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. Only 5% of people with diabetes have this form of the disease." Both statements are completely false if you include all the adult-onset Type 1s in the Type 1 category, see my blog on skewed statistics).

JDRF has come around and has stopped the misinformation campaign; it is time that ADA does the same.

#13

I just received an email from the ADA (because I'm signed up as a legislative advocate) asking me to complete a survey to provide input by August 15, 2012 on the 2013 Federal and State Legislative Priorities.

I think it's great that TuDiabetes is gathering input to submit from our community but if you'd also like to submit your own personal remarks, this is the link:
http://advocacy.diabetes.org/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=37020

#14

I'd also like to see a push to get rid of the term "type 1.5." From what I understand, this is not an official diagnosis and LADA is really just type 1, but it comes on a bit slower because autoimmune diseases generally progress slower in adults (at least, that's what I've been told).

Another thing is maybe some acknowledgement that not all PWDs fit neatly into a type 1 or type 2 category. One thing I've learned from participating on TuD is that there are lots of folks out there who are in a gray area. The problem is that so much of access to treatment is determined by fitting neatly into one of these specific categories, and I think that's just wrong. There is so much about this group of conditions we refer to as "diabetes" that we really don't know!

#15

Lower the cost dramatically of all diabetic supplies, make them available for free to those who can't afford them, no limits on testing supplies, lower the cost of insulin- generic insulin, insulin without rx and self refills, lower the cost of other diabetic drug treatments. Make all treatments and devices readily available to both types.

Do not allow insurance to determine or influence health care needs or treatments or to pressure doctors to limit or change care due to costs.

These are all really important and something which is also incredibly important imo is better education for doctors and all healthcare professionals, insurance professionals and anyone involved with diabetes care/policy regarding the basic and more complex facts of this disease- I can't believe how much ignorance and lack of basic knowledge there is among these groups. Hopefully this will save some lives.

And last but not least is to make a range of blood glucose levels which is not inflated and unrealistic, to change the dietary recommendations to a much lower carb intake recommended and to start to make better treatments such as insulin taking methods and glucose monitoring devices which are less invasive & or more comfortable, more sophisticated and more accurate.

#16

The ADA needs to whole-heartedly support very low carb diets for diabetes treatment. This means going WAY beyond just saying low carb, low fat and Mediteranean diets are all allowed for diabetics. Get real. This just confuses everyone.

The ADA needs to revamp ALL its nutrition programs and guidelines and get rid of the low-fat nonsense. It needs to ACTIVELY promote low carb - not just to diabetics, but to the food industry. I dream of the day when I walk into a supermarket and hear and see exhortations for "healthy low carb" rather than low fat products. The ADA can play a big part in making this happen.

I became diabetic 19 years ago and became an ADA member at that time. I never renewed my subscription because I quickly found that the low fat/high carb diet ADA was pushing was very damaging to diabetics. Nothing is more important to controlling diabetes than diet, and as long as ADA conitues to botch this, it is doing an extreme disservice to the community.

#17

Cure diabetes now.

#18

I agree with more education for medical professionals. As a T1, I am appalled at how often I run into a medical professional who does not know the basic differences between the various kinds of diabetes. And the fact that there is more than just T1, T2, and gestational.

#19

I'd like to see two things:

1) A greater focus on the role of BOTH diet and physical activity in helping maintain level BG's. ADA has retreated into the "eat right and exercise, call you doctor first" language that their lawyers probably told them to use. If THAT's all you're going to say, don't say it.

2) Lay off all the recipes. We know how to eat. Most of the recipes provided STILL have too many carbs, and it makes it seem like diabetes is all about food. Speaking as a diabetic athlete (distance cyclist and half marathoner, training for a marathon in the fall), that was the main reason I stopped my subscription to FORECAST.

And ditto to all the comments about prescriptions and insulin. I guess we're only allowed to live if our doctor says so. Idiocy!

#20

I would like to see the ADA stop recommending a high carb/low fat diet to control T2 when it is the absolute wrong way for a diabetic to eat! If a diabetic cannot metabolize carbs, why eat them??????