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An Open Letter to the FDA to Hold a Patient Meeting on Diabetes

diaTribe’s open letter urges the FDA to hold a public meeting to hear patient voices in diabetes. The FDA is holding a series of 20 specific disease meetings and remarkably, diabetes has not been selected – yet! Read more about this issue and if you support it, please sign the petition at diatribe.org/petition - every signature helps.

To FDA Commissioner Dr. Margaret Hamburg:

As we stand ready for the sweeping healthcare reform promised by the Affordable Care Act, now is the time to create better relationships and increased communication with patients. We enthusiastically applaud the FDA’s recent initiative to meet with patients to discuss different disease areas. We were surprised and disappointed to discover that diabetes did not make the initial list and we urge the FDA to change this as soon as possible. To do otherwise would be to ignore the voices of one of the largest patient groups in the United States.

We have no doubt that you are familiar with the numbers surrounding diabetes! About 26 million people in the United States have diagnosed type 1 or type 2 diabetes, and another 79 million have prediabetes. If current trends continue, it is estimated that as many as one out of three Americans will have diabetes by 2050. In 2012, more than one in five total US healthcare dollars was spent on care for people with diabetes. The estimated costs for diagnosed diabetes totaling $245 billion, up from $174 billion in 2007 and $132 billion in 2002. It’s the shared job of those of us in the diabetes community, of the American people, and of the FDA – one of the most powerful, influential voices in public health – to stop these trends.

Despite its high prevalence, diabetes can often be a lonely and isolating disease. For those taking insulin, insulin therapy represents a constant tightrope of managing hyperglycemia and avoiding hypoglycemia – sudden spikes or deficits in glucose levels result in unwanted mood swings at best and life-threatening risks at worst. For many people, balancing nutrition, exercise, and medication, as well as struggling with the stigma associated with diabetes and obesity is a daily reality.

But make no mistake – the situation is far from hopeless. If the FDA chooses to engage people with diabetes by holding a public meeting, you will be struck by the intelligence, determination, and compassion that define our community. We’ve received great input from our readers here at diaTribe, and have a lot of ideas for the FDA:

  • Why hypoglycemia and time in range are just as important to understand as A1c

  • How to speed development of newer drugs, especially faster-acting insulin

  • How to approve drugs for specific indications and small populations, assess their safety, and make then make them more broadly available

  • What an artificial pancreas would mean to patients with type 1 diabetes and how we can get it to market faster

  • Why type 2 diabetes drugs can also benefit type 1, and how we can get them to market faster so that they are no longer used “off label”

  • Why we need therapies for prediabetes

  • What a day in the life of someone with diabetes is like

We know how busy you are, and we thank you for taking the time to read and consider our thoughts on this pressing issue. We wish you the very best of luck with your upcoming slate of meetings – indeed, we hope to be there in person to convey our thanks at a meeting devoted to diabetes and the diabetes community.

Very best,

Kelly Close and the team at diaTribe

To sign the petition, please visit diatribe.org/petition.

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