Ideas please! I'm giving a talk titled "Type 1 Embracing Type 2"

[EmilyC]

On May 14th I’ll be presenting at the Women in Government Diabetes and Obesity Summit, and the topic they gave me to present on is “type 1 embracing type 2”. I was really thrilled with this topic because I believe passionately that we need greater social and political unity between people who have different types of diabetes, and I I have plenty to say about the shaming and blaming of people with type 2. But what I do not know a lot about is politics, and how this topic can be translated into concrete recommendations about legislation that attendees of this summit should support, or not.

I’d love your help!!!

• What specific legislation, either in your local area or on a national level (US), would you tell this group to either support or work against?
• How do you think legislators can support greater unity between people with different types of diabetes in the political arena?
• What do you think legislators can do to address social misconceptions that lead to blaming and shaming of people with type 2 diabetes?

Any and all ideas would be much appreciated!! I really want to give this group of legislators some sound recommendations about how to advocate for people with diabetes in all levels of government.

[acidrock23]

I don’t know if recasting T2 more realistically is as much a legislative function as a function of the medical associations (ADA, JDRF, AMA, AADE, etc.) coming up with new ways to explain and support T2. The social misconceptions that arise every time a public figure says “diet and exercise” in the context of curing T2 spread this incorrect information widely.

The medical industry needs to take the lead because everything said or done about T2 stems from the “low-gear” approach used by doctors “let’s try Metformin and see how it works for 3 months or 6 months, test your BG every other day and keep track of it…” doesn’t really make sense to me, as a T1 but those sort of approaches are not uncommon for new or borderline T2. The related reason for this is that insurance is reluctant to assist with the task of compiling the diagnostic data to confirm a diagnosis or determine which variety or varieties of metabolic disorders might be causing problems for a T2 or suspected T2 individual. Legislators will follow doctors if doctors come out and change the way they approach T2. If it’s prescribed, it should be covered although there is ample opportunity for collusion and limitations on treatment with current paradigms.

As we keep seeing news stories about diabetes being a growing problem, we should be confronting doctors and medical associations as a group. That is the source of the conservative treatment paradigms that hamper T2. Maybe some doctors get it but too many don’t and, of course, many of the ones who don’t work for insurance companies and government agencies limiting access to supplies and treatments. That’s what I think needs to change.

[Thas]

The “blame game” and ongoing misconception that people with T2D made lifestyle choices that caused their condition has been promoted by media, medical community, and pharmaceutical industry - despite evidence to the contrary. In product package, a product like Kind Bars gets sanctioned for having the word “healthy” on the package without medical evidence proving that claim, yet the unproven claims and blame of people with T2D continue unabated. Aside from stigma and shame, these unproven statements cause harm to patients when it comes to treatment plans, coverage for test and self-management tools and insurance coverage.

Second, I think a big focus needs to be placed on restoring the ability for a patient’s own doctor to make medical decisions, rather that “medical staff” at their insurance provider. If I call my doctor on the phone complaining of a bad cough and telling him that I know it’s bronchitis, he cannot legally prescribe medication for me unless he sees me in person, yet “doctors” at insurance companies who have never seen patients regularly override patients’ own doctor’s decisions with claims that “treatment is not medically proven for your condition.” In addition, when the FDA can issue a statement that devices such as pumps and CGMs have been proven to improve diabetes management and overall health prospects for all people with diabetes on insulin, how can one insurance company after another second-guess those findings and declare such devices as “unproven technologies” for people with Type 2 diabetes? Legislation to put medical decision-making back into the hands of doctors and out of the hands of actuaries needs to be considered.

[Brian_BSC]

My suggestion would be to first focus on highlighting how the entire “system,” notably healthcare and the government have propagated a stereotype, that people with T2 get diabetes because of lifestyle and that if they just ate properly and exercised that they could cure or at least prevent the onset of full T2. There are serious questions about whether these lifestyle changes in fact do anything to cure or prevent T2, but most alarming is that it sends a very powerful and pervasive message to T2 patients that their personal choices gave them diabetes. This is exemplified by programs such as the [Diabetes Prevention Program][1]. So it is into this confused message about obesity, diabetes and the assignment of personal choice and blame that we find a historical disparity in T1 and T2. But I hope that we can change that.

Those with T1, while they have been struck by a terrible autoimmune condition which virtually destroys their insulin production, they have been able to convincingly feel that their condition isn’t their fault. But high levels of insulin are known to cause fat accumulation and many with T1 also struggle to maintain normal weights. There is a rational argument that high levels insulin in T2 lead to the same sort of weight gain. So why as a society have we attached such blame and stigma on T2? And this overlap off T1 and T2 extends beyond just the double standard towards obesity, in fact we are now learning that the conditions of T1 and T2 actually manifest themselves in ways that overlap significantly, both conditions result in abnormal blood sugars. And while we always knew that T1 treatments like insulin could be used effectively for T2, we have also found that many medications developed for T2 turn out to work in surprisingly effective ways for T1.

So medically we find that both T1 and T2 are dealing with many very compatible things. But this is really just the tip of the iceberg because diabetes is not just a medical issue, it is a mental issue. Patients now have wonderful tools for managing their diabetes, but actually getting your mind around the day by day crush of dealing with a chronic condition often leads patients to poor outcomes. It is into this space that patients have come together to support themselves emotionally and mentally and finally align themselves to give a patient voice. And it turns out that the patient voice of the T1 community, while it has been organized and loud, has not made much progress on broad issues. The fact that 90% of patients with diabetes have T2 means that it everyone focuses on T2. So given the overlap in the issues of these communities it is obvious that we should see T1 and T2 coming together to work on diabetes issues.

So here are some areas where we should see the T1 and T2 unified voices advocating for changes in the way that government approaches diabetes.

As patients (both T1 and T2) we need:

• Support for empowering and emotionally supportive programs, everything should not be medicalized
• A recognition that with chronic conditions such as diabetes the patient is leading the team managing the condition and increased power in the patient’s hands is important.
• Regulations and decisions about medical devices and medications that take into account the patient quality of life
• Objective and unbiased and scientific evidence information and guidelines and protection against the corrupting influences like industry
• Change the way that diabetes nutrition guidelines are developed, the current system is woefully broken, is controlled by industry, is unscientific and seems to place agricultural and industry interest ahead of the patient.
• Sensible oversight and regulation of medical professions, resisting efforts to create quack fields that can’t be supported by science (like homeopathy). This is particularly important at the state level.
• Protect diabetes consumers from false product claims and other quacks
• Support a rational and balanced approach to health policies that don’t treat T1 and T2 as though they as totally different conditions. Thought they have a different cause their diagnosis and treatment are highly intertwined and related
• Support a better approach to diagnosing diabetes, we need to stop misdiagnosing T1 as T2 and we need to realize that T2 is a huge spectrum of conditions. There are many T2 patients that are not obese and misdiagnosis can lead to mistreatment and harm.

I hope that is helpful. And I looked at the agenda, I was pleased to see that you got a promotion to “Co-Founder, President Emeritus”
[1]: http://diabetes.niddk.nih.gov/dm/pubs/preventionprogram/

[Thas]

[quote=“Brian_bsc, post:4, topic:46050”]
My suggestion would be to first focus on highlighting how the entire “system,” notably healthcare and the government have propagated a stereotype, that people with T2 get diabetes because of lifestyle and that if they just ate properly and exercised that they could cure or at least prevent the onset of full T2. [/quote]

You bet! I was never diagnosed as pre-diabetes, or anything like that, but was concerned, due to my mother’s, albeit easily-managed, T2D and literally did ALL of the things the medical community claims will delay or prevent T2D over several years before my diagnosis. Yet , despite that, I was diagnosed over15 years younger than my mother’s Dx, while active and at a healthy weight, etc. My doctor was incredulous (due, most likely, to all the misconceptions we’re discussing).

And with all that, I’m still left to wonder if it was somehow my fault. Thanks, Mr. Establishment.

[Shadow2]

I won’t pretend to know a significant amount about the politics of medical care, but you might want to find someone who knows about the situation in Oregon. You may have heard that the state took steps to limit the number of test strips recommended for Type 1 and Type 2 diabetics. The guidelines were prepared by the Health Evidence Review Commission:

http://www.oregon.gov/oha/herc/Pages/blog-self-monitoring-blood-glucose.aspx

I’m not sure what finally happened with it all, but in the guidelines at the link above, for Type 2’s not on insulin, the recommendation was 50 strips for 90 days. The reason was that self-monitoring of glucose has not been proven to reduce HbA1c by a “clinically important” amount:

SMBG decreases HbA1c by a mean of -0.21% (95% confidence interval [CI], -0.31% to -0.10%). A clinically important change in HbA1c has been defined as 0.5% or greater. Thus, a decrease in HbA1c of -0.21% may not be clinically important. Many of the interventions did not describe the educational component done in conjunction with SMBG.

I think a major challenge for diabetics with regard to legislation and insurance coverage is that no one seems interested in trying to measure the psychological benefit of certain medical tools. For many diabetics, Type Any, routine testing of BG assists people in understanding their body and the effects caused by food, exercise, hormones, daily life, etc. It helps give people peace of mind that they are properly caring for their body as they navigate life with a chronic illness. Personally, I don’t know that my CGM has a “clinically important” effect on my A1C, but it certainly increases my psychological well being. I wish more clinical researchers were trying to measure that effect so those making evidenced-based decisions would consider it.

[Thas]

My CGM has probably not impacted my A1c at all; however, it has clearly helped with my peace of mind. My endo ordered the CGM because I was having a significant number of lows - some of which I did not know until I tested; but also because he felt that I was having significant anxiety over my BG (high and low), as evidenced by my testing 10-12 times per day and headaches when my BG was high. He felt the CGM would relieve that anciety.

I didn’t and don’t totally agree with my endo that the testing and headaches were anxiety-driven; however, there is no question that the CGM has helped make my life easier by removing the fear of missed hypos.

(Note: A1c before CGM was 5.2, after was 5.1.)

[BadShoe]

Adam has some killer slides at MasterLab last year.

The idea that diabetes complications know no type is worth noting. I hope that women in government could help raise the interest in addressing gestational diabetes. It is a double whammy where the likelihood of both the mother and child developing diabetes later in life significantly increases.

I believe there is a bill in the senate proposing increases research. S84. It doesn’t have a lot of cosponsors or a house companion bill that I know of. I think it is a worthy idea and potentially a double savings of future disease if inroads can be made against it.

[EmilyC]

These are FANTASTIC ideas and suggestions, you guys!!! I can’t thank you enough! Please keep them coming, if you think of more

[EmilyC]

LOL! How on earth did I become the President Emeritus?!!! Thanks for noticing that, @Brian_bsc. I’ve requested a demotion to Head of Communities

[YogaO]

I see from a quick look at the agenda that most of the legislators appear to be from the Colorado State Legislature; also, it looks like the fifth year for this event.

From the longevity of the program, I will guess that they have already addressed the myth that T2 is a direct result of obesity, right?

Following with @BadShoe, I think Adam Brown’s presentation from MasterLab has some excellent points speaking to the huge similarities among T1/T2 including the benefits of early use of insulin for T2, advantages of Metformin for T1, the huge importance of Time In Range and not just A1C.

As others have mentioned, on the legislative side nationally, we are asking for support for the allowance of CGMs under Medicare, a reshuffling of NIH funding to ensure diabetes research goals are working on a sensible objective, as well as @acidrock23’s great suggestion that access to test strips be a civil right. Also, when speaking of test strips, there is great concern that Medicare is creating a race to the bottom with their competitive bidding process, not to mention PBM programs that only look at the cost of test strips vs. efficacy for the patient and their therapy protocols and devices.

I know you will do a wonderful job at this presentation, Emily!

[EmilyC]

Thanks to your great ideas, my talk went really well! AND I’ll be presenting a slightly modified version of it at MasterLab in Orlando, next week. I hope some of you will be there to hear it!! If you are not familiar with MasterLab you can read about it here: MasterLab 2015

[Linda_G]

Will there be a transcript?

[EmilyC]

@Linda_G, there will be a video!

[Linda_G]

Even better! Thank you Emily.