You down with ODPHP?

I had the distinct opportunity to represent patient perspectives at a meeting between the co-chairs of the Diabetes Advocacy Alliance (a more than 20-member coalition of various groups like ADA, AMA, YMCA, and lots of other impressive, established orgs) and the Office of Disease Prevention and Health Promotion at Health and Human Services in Washington, DC this last week.

The meeting was focused on the missed opportunities of screening for pre-diabetes in at-risk people and the possibility that early intervention could help the more than 86 million people in the US with pre-diabetes (when only about 9 million of them know they have it!). ODPHP are the champions of an initiative called “Healthy People 2020” that seeks to ultimately reduce the impact and the economic burden of diabetes on American’s citizens.

What did we accomplish? As is the case with slow-moving government bureaucracies, the real accomplishment was the fact that we got so many groups at the table to begin conversation. The CDC was there. CMS (Medicare/Medicaid) was there (and they’re never anywhere. HHS was there (obviously). Both Omada Health and the Y presented on their implementations of the NDPP (National Diabetes Prevention Program). It was also heartening to see such similar data coming from the AMA, CDC, etc. - all corroborating that we aren’t screening enough people for diabetes and we aren’t able to get them the services they need.

As a patient advocate, the points where I chimed in were around the cost to the individual family touched by diabetes and again when someone from one of the government agencies asked about the incidence of Type 2 in women diagnosed with GD during their pregnancies. The representative from the Academy of Nutrition and Dietetics very graciously reminded everyone in the room of patients like myself being a reminder of why they were all gathered there, all working together.

The BEST moment of the meeting had to be a presentation from Omada Health. They explained to the attendees that Medicare seniors were some of the more active participants in the social networking side of what Omada provides through their approach to telehealth for people with prediabetes, counter to general assumptions about seniors’ ability to engage with technology, and that patients with diabetes report that it’s the loneliness and isolation of the disease that can be most overwhelming. My heart leapt and I made a point to tell them so.

No one touched by diabetes should have to feel alone. That is the mission that drives all we do here at Diabetes Hands Foundation. And it’s important that those with seats at the table understand the emotional burden of this disease, as well as the economic.


Great work @Melissa_Lee! One thing that I think should be brought up at meetings like this (I’m sorry I missed a call for suggestions…) is varied standards for determining “prediabetes” vs. T2 vs. “you’re fine, just exercise and only eat vegetables, because everyone should only eat vegetables and potatoes and corn are not vegetables…” I’ve talked to people who have said “my A1C was 6.7 and I’m fine, thankfully I don’t need any medications or anything like that, I just get checked every so often…” which equates to an average BG of something around 145. This in itself may be where many of “us” end up but I disagree that any patient should be told that.

I don’t believe insurance companies should have ANY say in the standards for determining what is or isn’t diabetes as this is a medical question and their participation or evaluation of these research discussions has a clear conflict of interest.

Many of us who’ve had the benefit of participating in ongoing discussions at TuDiabetes and perceiving the challenges faced specifically by T2 but also the diabetes community in general. I think a very simple solution is that people with these disorders (T1/T2 and “prediabetes” should be supportive in working towards more normal blood sugar by whatever means are necessary.

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oh wait, did I say 10 things? Sorry!!

Excellent point. The problem of “what is diabetes” and “who should be identified” was some of the “similar” data I was referencing. If you used different group’s guidelines (which are often consensus-based and not evidence-based), different subsections of the population get screened and different subsections identified. We end up with screening tests that are high sensitivity (too many false positives) and everyone gets screened or high specificity (very accurate) but not enough at risk people get screened. And we were shown that from each group presenting.

The United States Preventive Services Task Force (USPSTF) has new screening guidelines that would be very good at getting the right at risk people in the door. If the screening guidelines are codified into practice, you’ll have not only the right people screened, but the right people identified as having pre-diabetes AND a mandate for coverage of education or referral for a covered NDPP program enrollment.

Most groups have been very supportive of the new screening guidelines. Some family practitioner orgs have resisted because it would put a burden on them to screen more individuals, but the AMA, AACE, ADA, AADE, AND, etc, are all behind the new guidelines: