A1c and Blood Sugars Statewide: Strength in Numbers to Influence ADA Guidelines
Many readers with diabetes on this site also belong to a network called Tudiabetes.org. Manny Hernandez has been a shareposter on this site and believes in the strength of what social networking can do for someone who lives with diabetes. Patient networking started as a need for social networking, but the power of networking has a chance to shape our future in areas beyond just one site with patient voices!
Recently, Tudiabetes.org launched a site called TuAnalyze.org, which is a site to log the A1c of everyone living with diabetes. The effort is a collaboration between the Diabetes Hand Foundation (The organization that runs TuDiabetes.org) and Children's Hospital of Boston and funded by the CDC.
What is interesting is the hesitation that many diabetics show when asked to log publicly post their A1c. We've been here before, when TuDiabetes had their blood sugar "Test-In," last July. Only 10% of the 14,000 members of TuDiabetes posted their blood sugar at the time of the test in.
I think many of us who are active on the Web, be it Facebook, Twitter or sites like HealthCentral.com or Tudiabetes.org, should remember what the strength of these sites are. A few years ago, we barely had a voice in the world of diabetes and diabetes management, or the ability to shape how the non-diabetes world sees diabetes. Now, because of a collective capacity, we have the opportunity to have our needs met, our families to understand us and the potential to have a stronger message to organizations like the American Association of Diabetes Educators and the American Association of Clinical Endocrinologists.
So many of us complain about being called a "non-compliant" patient, but TuAnalyze is a tool to teach everyone, including doctors, CDEs, pharma and family members what is working and what is not. Perhaps the statistics drawn will show a marked decrease in an area with a stronger diabetes program, as well as the disadvantages for those areas with no diabetes outreach.
Statistical reporting could have enormous change for the better. But, right now, the only people posting A1c measures are those in good control. Therefore, statistically speaking, there is no need for change and our current system will remain as is. For example, in my state of Virginia, 28 people have logged their A1c. Of those 28, 79% have their A1c under 7 and 14% are between 7-8. I have friends that I know who are above 8 and clearly they have not added their voice. I want to say that you are as important to this research project as the people who have a 6.0 A1c!
By showing the medical community that A1cs in your state are above 7 means that the ADA may change their guidelines for how many test strips they recommend as a standard of care. That ADA guideline sets the bar for the insurance companies. Doctors, pharma and insurance companies look to ADA for their guidelines and ADA pulls its information from stastics like TuAnalyze.
I believe we have a choice in the kind of care we can receive and one way to let the medical community know what you need is to add your voice to TuAnalyze.org.