Early this month, JDRF ran full page ads in The New York Times and the Washington Post. The NY Times has a circulation of 876,638 daily, the Post reaches an additional 545345. But the message was meant for the attention of only a handful of people - the leadership at FDA.
In coming weeks, policy for research and clinical trials of artificial pancreas technologies will be decided. It is critical that our government regulators understand the high stakes involved if progress is stalled. Every day, parents of children with diabetes like us struggle to maintain proper blood glucose control; every night my wife and I worry that too much administered insulin in our daughter's body may cause her to seize. We live on a razor's edge.
New technology could help. Auto-shutoff insulin pumps like the VEO could help, but we can't get it in the U.S. Clinical trials outside a hospital setting for an artificial pancreas are now being conducted in Europe- but not here. Why not? It's obvious for parents dealing with this disease that our kids are left in danger without these incremental improvements. The FDA apparently is unaware how precarious our day to day balancing act is. The ad's headline spells it out for them: 1 in 20 people with T1 will die from low blood sugars.
That's why lobbying for change, getting governmental support and even taking full page ads make sense. November is diabetes awareness month. The FDA needs to be made aware that their action or inaction has a direct effect things that we can't afford to wait for.