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]. 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”