Convening for a Cause on November 3 – Bringing Patient Voices to the FDA
By Kelly Close
Twitter summary: Speak for patients at our Nov 3 meeting with the FDA: http://www.cvent.com/d/z4qgt1/1Q
What’s important when it comes to living with diabetes? I can’t think of a better group to ask than our diaTribe readers and the people you know who are affected by diabetes. Next month, we’ll have an opportunity to do just that during a first-ever virtual discussion between the diabetes community and the FDA, where the diaTribe team and other patients will sit down with the agency’s leaders to discuss the adequacy of current diabetes treatments, the biggest unmet needs in management, and what patients want in future drugs and devices.
The event will be webcast live on November 3, 1-4pm EST – you can sign up to watch it here. There has already been lots of conversation on Twitter under #DOCasksFDA, and we expect many will be tweeting on November 3 as well. The day will include a discussion with a panel of patients, representatives from ADA, JDRF, and diaTribe, and leaders from the FDA. As a community, we have a huge opportunity to present the many challenges we face each day, and we want a rich assortment of opinions and views to be part of this discussion.
Please register and log in for any portion of the webcast and to join the conversation at http://www.cvent.com/d/z4qgt1/1Q.
This work started almost exactly a year ago, when we petitioned the FDA to host a patient meeting on diabetes (for more on that, you can read my letter from the editor from last October to FDA Commissioner Dr. Margaret Hamburg). Nearly 7,500 people signed the petition to let the FDA know that patients with diabetes are engaged, committed, and interested in learning how to improve care. The FDA responded in a fabulous way by putting together this November 3 meeting. This is our chance to show the agency that the diabetes community wants to have an ongoing, open dialogue with its leaders. At diaTribe, we’ve always believed that the perspective of people with diabetes and their partners and caregivers should be front and center as the FDA reviews new therapies and technologies.
That’s what I hope the day achieves – to have patients share with the FDA how diabetes affects their daily life, what risks they confront daily, and what would make managing the disease easier. The FDA has a difficult job in balancing the risks and benefits of new products. We think the conversation on November 3 will help to educate FDA staff about what is important to patients as well as how patients manage risk on a daily basis - this is what we need FDA to keep in mind as it reviews new drugs and devices for people with diabetes.
To inform our discussion, we have had nearly 7,000 patients complete an online survey. These responses will be used to shape the conversation on November 3rd. I encourage (beg!) you to take our short survey on living with diabetes if you haven’t done so already - we’d love to get over 10,000 responses to FDA. Even better, I urge you to take a little time to join a part (or all!) of our live conversation at http://www.cvent.com/d/z4qgt1/1Q. We so hope you join us and that you join the chorus of voices heard at the FDA.
very best,
Kelly L. Close
For more information or for media inquiries, please contact the diaTribe Managing Editor, Nancy Liu, at 415-241-9500 or nancy.liu@diatribe.org.