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.